Looking Up

Round TWENTY-ONE!!!

2012-01-28T01:06:00.002-07:00

Here we are again, in the thick of chemo. Twenty-one rounds. Wow. That is so hard for me to wrap my mind around. When Trent was first diagnosed I thought the most you could do was five. I am so glad I was so clueless. It would have been even more devastating than it already was.

Wednesday morning my dad asked if I wanted him to give Trent a blessing before we left. I thought it was a little odd because it was just regular chemo, not scans. I shrugged and told him he could if he wanted to. Right after that Trent's Aunt Susan called out of the blue. She asked if he had his blessing for the day. After that I figured someone was trying to tell us something and Trent better have a blessing. I called my dad and he came home from work to administer to Trent. It was another beautiful blessing that had us both bawling. One of the first things my dad said was that all of the difficulties Trent is having are still lessons to be learned. Trent started bawling then. That was a little discouraging to hear. What haven't we learned? Why don't we just hurry up and learn it? Oh wait, maybe the lesson is PATIENCE. Anyway, the rest of the blessing was very specific and very comforting. I am so grateful to my dad for being the priesthood man that he is. He has been such a support for us and is always ready and willing to lay his hands on our heads and call upon heaven for blessings.

Right before we left for SLC Trent went downhill. He was feeling really yucky and was a bit dizzy. I am sure it is hard for him knowing he is heading down to be poisoned. By the time we got there he was a little bit better. When he checked in they weighed him and he was up about four pounds. That was good to see because we have both been a little concerned about the rapid weight loss. All of his labs came back looking pretty good. Nothing is too out of whack. He is still a little anemic though. Our nurse, Katie, came over to check in on us and get us some scripts. She was surprised and happy to see how good Trent looked. Even being under the weather he still looks about 10 times better than he did one month ago. We asked about the bumps on his arm that keep coming and going. No one has any idea what those might be so I will just continue to take pictures of them and keep track of them. Katie also said that if Trent starts feeling a little "punky" we should call and they will give him blood. She told us about another patient who is having a hard time fitting chemo into his family life. Once again, we realized how lucky we are to be in the situation we are in. We never have to worry about who will take the kids. My mom has alleviated so much of that burden for us. She never even bats an eye at the extra work we are for her. She is such a trooper and we are so grateful. We have been so blessed!

While we were in Infusion someone brought in some fast food. The smell made Trent really sick so I whipped out my trusty Peppermint oil and shoved it under his nose. Wala! No more nausea! I really like that peppermint-and peppermint loves Trent! We now carry it everywhere Trent goes.

We were lucky enough to have Scott and Heather Church come spend some time visiting with us. They were in our ward in Lincoln and have now moved to Sandy. Scott is a cancer survivor and can relate to a lot of what Trent is going through. It was really fun to talk with them and spend some time laughing. I had so much fun I forgot to pull out my camera. Next time...

After chemo we stopped at Red Robin for some dinner. Trent had been craving a burger all day. Unfortunately by the time we got there the chemo was starting to hit him. I was able to get a decent picture but he is really faking a smile. Right before I took this picture he was laying on the table trying not to moan too loudly.

Thursday was not too bad. Trent slept most of the day. That's fine with me...as long as he is not in pain. I gave him his Neupogen shot around 8 pm. It was all downhill after that. He woke up this morning really sore and having some really bad back pain. Round the clock pain meds are now ordered up for him for at least a few days.

Aunt Susan and her son, Jared, came down from Rexburg today to visit. Jonathan practically mauled Jared all day. Jared was a really good sport and played blocks, trains, and wrestled with Jonathan. I think Jonathan was excited to have some attention from someone other than Mom and Grandma.

Trent enjoyed his visit with Susan and Jared and we are thankful they drove all the way down to see him. We were lucky they came when they did because he is definitely headed downhill. He is probably going to be out of commission for at least the next few days. We are going to try to keep it to days, not weeks, so we can have some fun before we do this all over again! Sigh...

Daddy's Chair

2012-01-24T22:26:00.001-07:00

Big Daddy got a new chair! Trent has wanted a new chair for a little while now. He has a hard time getting comfortable in regular chairs because he is soooo long! I told him as soon as he was well enough to shop for one he could have it. Last night we went out in the middle of a snowstorm to get a chair. Within ten minutes of walking into the first store his chair was bought and paid for. Talk about shopping like a man!

No buyer's remorse here!

As soon as the chair was delivered Trent snuggled in for a test drive. It wasn't too long before Jonathan had to join him to break it in. What a cheeser!

Man I love these boys!

Forward with Hope and Faith

2012-01-23T09:45:00.001-07:00

We have had a few ups and downs since Wednesday. Thursday was really iffy. I was really hoping that because Trent had been doing so well on Tuesday and Wednesday, he would be able to continue right on up to Infusion day this Wednesday. If there is one thing we have learned about cancer...it is that it is unpredictable. As much as I try to track all the side effects from one round to the next, cancer still throws in a turn or two I did not expect. Needless to say, I was very disappointed when Trent started heading downward again. He just didn't feel well Thursday. He didn't sleep well and wasn't able to eat too much, just no appetite. He weighed himself and was irritated to see that he was losing more weight. He is now down to 205, from 228 just three weeks ago. He also started to cough up blood again. This time it was more (almost 1 cup in a 24 hour period), to the point that I was getting nervous. I called Dr. Carr on Friday night and talked with him about it. He said that if Trent coughed up the same amount Saturday and Sunday that he would need to see him on Monday for sure. Once again, we called our little family around us and said a very fervent and specific prayer. Not surprisingly the coughing has stopped, the appetite is back, and last night Trent did NOT have cancer sweats! I cannot deny those results. We have asked for very specific things and have been blessed over and over again to see answers to those prayers. We try to point that out to our kids...I hope they are listening! We are truly being watched over. I get excited to say my prayers at night because that is my "check in time" where I get to report the days' events and thank my Heavenly Father for His watchful care of my husband and family.

I have been doing some reading about how to help Trent strengthen his lungs. I have had him working on the incentive spirometer for a few weeks now. He goes up and down in how high he can get the little ball. I also read that he should be eating small meals several times a day. We have tried that and it seems to be working well for him. Hopefully he will be able to gain a few pounds before Wednesday!

Yesterday Trent was able to come to Sunday School and Sacrament meeting with us. We had him on oxygen and he was doing pretty well. During Sacrament meeting he was coughing a little bit so I reached for a Ricola. Suddenly he got a stabbing pain in his abdomen. He inhaled sharply and grabbed his side. He was writhing and wincing in pain. I looked up at the stand to see if my dad was seeing this. He was completely oblivious but his counselor, President Bailey was on full alert. I could tell he was waiting for the sign from me to sprint off the stand and carry Trent out. One look and he would have flown to our rescue. Luckily, after a very intense minute or so, the pain subsided. Trent was sweating and panting. I meekly offered him that stupid Ricola I was still holding. Wow, I am sure that helped! :s When the meeting ended Jonathan was asleep. I was carrying him while trying to hold up a very wobbly Trent who kept saying he was going to pass out. I am sure we were quite the sight! My friend Suzanne swooped in and grabbed Jonathan out of my arms so I could get Trent to the car. Maybe it is good that "all eyes are on us" sometimes. :)

Last night Trent was doing great. He watched football with my family and really enjoyed himself. While he watched I went to a fireside with Megan to celebrate 100 years of Seminary. President Boyd K. Packer spoke and he advised us all that we need to continue forward with hope and faith. That is what it is all about, hope and faith...in a forward motion. There is not time to sit still. So, on we go...

Good Times!

2012-01-18T10:42:00.000-07:00

Trent was feeling pretty good yesterday so I asked him out on a date. We went to see the afternoon showing of Sherlock Holmes. I am certain we were BY FAR the youngest people in the theater. We kind of laughed about being at the "early bird" show. As soon as we got there Trent had some stabbing pain which we quickly medicated. We were able to enjoy the entire show without incident and had a great time. We made it home just in time to see Megan traipse over to Young Women's in my sister's wedding dress. They were having a modest fashion show and that is what Megan chose to wear. I did her hair in an "up do" and put flowers in it.

Yes, it was kind of weird to see Megan in a wedding dress and it freaked Trent out just a little.

Just before bed last night Trent had some really wicked pain. It was easily a ten on the pain scale and he was difficult to calm down. We put warm bean bags on his back and rubbed some oil on him to get him to relax. It worked pretty quickly but he didn't sleep much last night. He says he asked me for pain medicine and I only half-way remember that. I think I rolled over and went back to sleep. Oops.

Trent has another lump on his arm again. He got two of them last round and the docs thought they were either bug bites or sarcoma. Both of them went away rather quickly. Now, at the same point in the cycle as last time, another one has popped up. It looks to be in the same spot as one of them from before. It is pretty tender too. We marked it with a pen and will watch it closely for any changes.

We outlined the bump but you can hardly see it.

These are the bumps from last round that went away.

All things considered, Trent is doing pretty well. MOST of the day he is in good spirits and feels okay. If we could just get better at anticipating the rough spots, he would be doing better. However, I had a date with my hubby and that hasn't happened in a very long time. Good times, good times!

On the Upswing-I hope!

2012-01-16T13:24:00.000-07:00

Trent seems to be doing a little better today. I think he hits his low point in chemo pretty early because his bone marrow has been wiped out so many times before that it doesn't take much to wipe it out now. Friday and Saturday were pretty hard for Trent. Sunday he had some pretty intense pain for a short time but we got that under control, mostly, and he was pretty good after that. Brother Law, our elders quorum pres, and his son, Justin brought Trent the sacrament yesterday. I know he appreciates that so much. Trent hates to miss church and is often willing to try to come when I have to say 'no'. We have had a few 'episodes' at church that I do not wish to repeat so it really is better for Trent to stay home for now. I hope by next Sunday he will be ready to go.

Trent is still struggling with agitation. He worries so much about what each kid is doing that he gets all hyped about stuff he could really let go. I tried doubling up on the Valium last night and this morning, which Dr. Gouw suggested if we are not seeing a change. I hope that does the trick for him. I was hoping it would also help with the night sweats but so far, nada. No help in that category yet. If I could get Trent to sleep all night without sweating or having to use the bathroom I think he would be one happy camper.

Yesterday Trent started coughing up a little blood again. It must be that point in the chemo. It started at the same point last time but it landed him in the hospital. I am crossing my fingers that we are past the danger zone already. He was a little feverish on Friday and Saturday but never high enough to warrant a visit to the ER. We immediately started the prayers for no fever and no coughing. So far, I think they are working pretty well.

Last night we had a fun movie night with the kids and all the blankets and pillows they could carry. We watched 'Bedtime Stories' and had a fun time. I didn't even think to get out my camera...duh. Oh well, a great time was had by all and that made for a great night!

Still Hanging On

2012-01-13T19:35:00.001-07:00

The effects of round 20 have fully hit, I think. Thankfully Trent is not violently ill like he has been during several other rounds. He is in excruciating pain at times but we are doing everything we can to keep that under control. Heat pads, essential oil, and pain medicine seem to be helping quite a bit. I think all the pain is coming from the Neupogen shot he has to have every day. It is the shorter lasting version of Neulasta, which was horrible for him during previous rounds. The pain is all over his neck, shoulders, and back. I have been giving him back and foot massages to try and keep him calm.

Other than the pain, everything else seems to be in check. All of his vitals look great, much better than they have been as of late. Our goal is to keep him out of the hospital this round. If we can do that, I think he will get some good days to enjoy before we go back.

I wonder how Trent has done this so many times. He has amazing stamina and his determination is never ending. I can't believe how strong he is...I am so lucky he is mine.

Round 20!

2012-01-11T17:50:00.001-07:00

The last couple of days have been a little more iffy than the weekend was. Trent has been pretty tired. I think it is mostly because he sweats like crazy at night and therefore doesn't get very good sleep. For some reason that no one knows, cancer sweats only happen at night. That means Trent naps for more of the day than normal and doesn't get really rested at night.

He has also been more agitated lately. He is frustrated by the lack of sleep and never feeling 'great'. We agreed that round the clock Ativan was in order. :) Other than the lack of sleep and anger, Trent seems to be doing much better. The dark circles around his eyes are even starting to lighten up.

We were scheduled for a visit with Dr. Gouw this morning and infusion this afternoon. Trent was not feeling too hot when we left but seemed better by the time we made it to SLC. On weigh in Trent had lost about 12 pounds from last Wednesday. So unfair. His heart rate was a bit high, probably because he had been walking around and he was just a bit nervous.

When we finally saw Dr. Gouw he was amazed at Trent. We reported everything that had transpired throughout the last week and how Trent was feeling. Pretty much everything he wrote down was positive, except about the sweating and the anger. He suggested trying Valium. Normally they would treat the night sweats with SSRI's (selective serotonin re-uptake inhibitors)which we know are not good for Trent. However, Valium has been used to help with the night sweats too, so we are killing two birds with one stone.

Dr. Gouw really just sat there with a surprised and happy look on his face. He said he was encouraged and that he couldn't take credit for the overall positive change. He apologized if he was sort of doom and gloom last time. We told him that is the nature of the beast and that we learned a long time ago that cancer IS doom and gloom but we had the choice about our outlook. He agreed and said that he was very impressed with our attitudes and has been the whole time. It has been the hardest thing we have ever faced and it is NOT easy to be positive, but it is definitely easier than living life with a crappy attitude. We have shed buckets of tears over this but the peace we need so badly always comes. And then, life goes on.

Trent did Round 20 today and there will be one more round before scans on the 8th of February. We are so grateful for all of the prayers, and especially grateful that they are being answered. We still have a long way to go but today was positive and we are going to celebrate that!

Pretty Darn Good Weekend!

2012-01-08T22:21:00.001-07:00

Saturday morning we woke up to a couple of inches of snow. Trent got this great idea that we should all (meaning everyone BUT him, of course) go outside and build a snowman scene. His idea was to have two snowmen bowling. One snowman would use the other's head for a bowling ball. Well, that was a great idea but he was not the one doing it. The snow was not sticking so great and it was hard to handle.

I don't think it is very clear but we modified the "snow scene". We ended up with one snowman using his own head for the bowling ball. We had fun doing it and that was the point. We tried to get a picture of us all but Jonathan was not too interested. Who am I kidding...he has having nothing of it!

For MOST of Saturday Trent was doing pretty well. He had a few yucky times but overall I think it was a pretty good day. We spent some time playing games with the kids before bedtime and although Trent said he was just going to watch, he did end up joining us and having some fun.

He didn't sleep really well last night. The cancer sweats are killing him. He sweats like crazy and then he is freezing cold. However, all of his vitals are looking great and we have been able to mostly control the side effects of chemo with medication and essential oils. We have really loved the Peppermint to help with the nausea. It works wonders for Trent. We continue to be amazed at the answer to our specific prayers in regard to coughing up blood. The coughing has decreased dramatically and he has coughed up only a fraction of what he was. Gross, I know.

Today Trent's brother and sister came from Rexburg to spend the day with him. Troy and Tracy stayed with Trent while the rest of us went to church. They had a great time visiting and Trent was very happy they came.

Troy, Trent, and Tracy (Half of the "Tr" clan)
Doesn't Trent look great!?

Lately Trent has really been talking with Megan about sharing her testimony in church. He challenged her to do it today. She finally did it! Too bad Trent was not there to hear it but I know it meant a lot to him that she would do it for him. Jarom was brave enough to share his testimony too. Everyone at church was very concerned about Trent and how he is doing. Honestly I think he is better now than he was right before chemo. We really appreciate all the love, concern, prayers and the fasting on our behalf. It truly makes a difference in our lives! I really don't know how we are handling this other than to say that we are being lifted up by many, many prayers.

Glimpse of Normal Life

2012-01-06T23:33:00.002-07:00

Today was pretty good. Trent was able to be up almost all day. He watched cartoons and played trains with Jonathan. He hardly coughed at all today. We have been praying for very specific things lately and today some of our prayers were answered. Trent was in rare form and it was so fun!We got a visit from one of our former bishops and his wife, Blaine and Donna Butterworth. Trent looked and acted more like himself than he has for a very long time. I know they were surprised to see him like that. I was so thrilled to see him act (gasp) normal! During our conversation someone mentioned Arby's...yep, I made an Arby's run after they left. I was happy to do it because it has been quite a while since Trent was excited about eating anything. Unfortunately the happy times didn't last long. By about 10:00 pm Trent was laying on the couch feeling all crappy again. My only regrets today...that I missed a picture of the happy Trent because my camera was dead, and that the good times had to end. Hopefully we can muster up some good times tomorrow too!

Test Results

2012-01-05T23:19:00.003-07:00

All of the cultures on the blood and sputum have grown nothing. Now we have no idea what the infection was and what was causing the fever. I guess that is okay...it all would have been taken care of with the antibiotics anyway.We are managing each day and what it brings. Trent looked pretty good for some of the day. He was able to be up and spend some time with the family watching iCarly. We used to watch that with the kids all the time when we lived in Lincoln. It was really nice to feel like things were almost normal. We are trying to keep the lines of communication open for our kids but so far no one is really anxious to talk about anything. However, last night when Trent was tucking Mallory into bed, she cried and cried about Trent dying. She wanted to know who was going to be her daddy if he died. He told her he would always be her daddy and that he would always love her. I wish she never had to wonder about that. It breaks my heart! I know the kids are wondering and I think most of them try not to let it be real. If they don't think about it then it doesn't hurt. Jonathan is the eternal optimist-and innocent little cutie! He is always marching around declaring to all of us that Dad is going to be better soon. I really hope that is a little message from above!

Click, Click, Click

2012-01-05T00:26:00.002-07:00

Well, we clicked our heels and made it home! We were somewhat surprised this morning when the docs rounded and told us we could go home. There was no medical reason to keep Trent there so they sprung us! Trent's vitals have all stabilized and he has not had a fever since we got there. He is still coughing up a lot of blood but we are doing everything we can to stop that. I know this is gross but as long as it is sputum (spit) and blood we are okay. It is when it becomes frank red blood that it is life threatening and probably time to hop on a helicopter back to SLC. We are really hoping it doesn't come to that.

Yesterday I noticed a couple of red bumps on Trent's arm. I traced one with my finger and Trent jumped because it was very tender. I asked the docs about them and no one knows what they are. We marked them with a pen and are watching them right now. They put him on an antibiotic in case they are spider bites. However, they don't itch at all so the insect bite theory is a little suspicious. The other thing they are worried about is that they are sarcoma nodules. Really!? As if I don't already have enough things to worry about! I guess it is not that big of a deal, we were told they would just to a couple of radiation treatments and get rid of them if they are sarcomas. The only way to know is to biopsy, so we will watch them for a bit and see what they do.

My dad stopped by to bring us some more supplies because we thought we were staying longer. He and I went upstairs for a bite to eat and while I was gone this happened...

Trent got a visit from the entire U of U Women's Diving team! They were visiting patients and dropping off little goody bags. I had to laugh because I have been in his room non-stop for the past three days and as soon as I step out he gets 16 lovely ladies visiting him. Go Utes!

The ride home is always hard on Trent. Thankfully our friend Greg had stopped by for a visit and was able to help me get him to the car. I always try to go straight home and get Trent comfortable but this time we had to stop for a prescription. It took way longer than it should have and that didn't help at all. By the time we made it home Trent was spent. His evening has been pretty tough and the coughing is happening way too much. We had a talk with the kids about praying for specific things. Right now we are praying for the coughing to stop and the tumors to shrink. That's not too much to ask is it?

Good Hearted Man-Literally

2012-01-03T23:15:00.000-07:00

We had a pretty emotional night last night. It has been difficult lately as we are back on the rollercoaster of emotions. I long for Trent to feel good again, to share an embrace where I am not standing over his bedside awkwardly trying to hug him without hurting his chest. Last night I crawled in bed beside him and tried to be very still and not hurt him. Then the floodgates opened. I cried until his shirt was wet and my eyes were dry. I miss him so much! I miss having his arms around me and feeling protected by him. Someday...

We were very excited for today for many reasons. In addition to the temple session for the First Presidency, our families,ward, and many of you fasted for us. I was really anticipating having a sweet spirit fill my heart all day and was looking forward to that peace. Oh how the adversary works on us! After being up several times with Trent last night we were both up very early. I woke up kind of glum and Trent was a bit irritated. That made for a difficult morning.

We had a wonderful nurse, Karen, who was very diligent in getting Trent his morphine right on schedule and that seemed to help quite a bit. You could see him relax as soon as the drugs kicked in. His breathing evened out and he was much calmer. He had an EKG and an Echocardiogram today. We haven't been given any final report from the cardiologist yet but both technicians said that there was nothing alarming on the tests. Thank goodness for that! That feels like a small victory for us because of all the chest pain Trent has had as of late.

Trent has been coughing up more blood and was fasting all day in anticipation of having another bronchoscopy today. Finally at about 5:30 this evening Dr. Carr decided that it really wouldn't do any good to do the bronchoscopy because there is probably not a lot they can do about it. Bottom line is, the tumor HAS to shrink to provide some relief. (Yes, Trent was STARVING!)

Throughout the day Trent struggled with nausea. The nurses were throwing everything they could at him to ease the nausea. Karen even suggested sniffing the alcohol wipes. Turns out that doesn't really work for Trent but the cool rag on the head seems to.

We had some good moments today. We got to talk to our kids for a bit and they seem to be doing well. At times it is hard to not look back and wonder if thing could have been different. However, we have to stay in the present and have faith that this is what the Lord has planned for us. I was thinking today about how audacious it is of me to think that my way is best. My vision is short and very nearsighted so I have to rely on the Lord to guide us through the dark, knowing that only He can see the end.

Recently I was reading on another cancer patient's blog. His wife wrote of three things she had learned through their battle and I have not been able to get them out of my mind.

1. Faith if He doesn't.

2. Faith that He can.

3. Hope that He will.

I think that pretty much sums it up. I must have faith that if the Lord doesn't heal Trent, that it was for our good and our sorrows will be made up to us someday, faith that the Lord is certainly capable of healing Trent and restoring his health, and hope that the Lord sees fit to heal Trent in this life.

We are both very grateful for all the prayers, fasting, and support we have been given. We are especially mindful of the blessing of having Trent's name in many, many temples. We are eternally grateful for the privilege of being prayed for by name by the prophet of God. We have great faith that has been strengthened today and our hope is for a miracle.

My Sweet Husband

2012-01-03T00:07:00.000-07:00

Trent had a bit of a rough day. It is becoming increasingly difficult for him to get comfortable. He has a lot of chest pain and can only lay on his left side. He has started coughing up blood again. Tomorrow they are considering doing another bronchoscopy to determine the cause of the bleeding in his lungs. If they can find the source they will probably do a localized radiation to cauterize it. They gave him a breathing treatment and that loosened up enough sputum to do a culture on. Those results will take another day or two. Hopefully we will have results from the blood cultures that were done in Brigham by tomorrow.

After the breathing treatment they took Trent down for a CT scan of his chest. The results were not surprising. The tumor in the lower left lobe has grown another 2X3 centimeters. We pretty much expected that since there was no treatment. The tumor in his pericardium has grown but only slightly. All the other tumors have grown a bit but not significantly. The upper lobe of the left lung has partially collapsed. There are small pleural effusions on both lungs and there is also a pericardial effusion. They may "tap" him tomorrow to take care of those. He has enlarged lymph nodes around his heart and an enlarged spleen. These are probably due to the infection-whatever it is. They are continuing the "big gun" antibiotics but have taken him off Meripenum in case they need to use it later on.

Trent has been on morphine, OxyContin, and oxycodone 24/7 to try to control the pain. It has been really hit and miss as far as comfort goes. He has held tight to his little bear from the BCCH EMTs. I guess he is sending extra love to the kids. :)

This afternoon I was really tired and laid down on the little couch to close my eyes for just a minute or two. I awoke to see Trent putting a blanket on me. What?! He was dragging his IV pole with him to bring me a blanket to make sure I was comfortable. What a sweetie. Even when he feels like death he is thinking of me.

Trent was getting pretty anxious this evening so we called my Dad and brother, Josh, to come give him a blessing. It was a beautiful blessing of comfort and strength for all the procedures and treatments that are anticipated for tomorrow. As soon as his blessing was done he asked my dad to give me a blessing as well. He was upset because he couldn't do it himself but we put my chair right next to his bed and Josh held Trent's hand on my head so he could participate. He is definitely the most loving and selfless man I have ever met. I am the luckiest woman in the world to have Trent as my best friend, father to my children, and eternal companion. I would walk this road a thousand times over for him. It has been the hardest thing I have ever done to watch him suffer so much. Through it all he has been such a strength to me. We are anxious about what lies ahead but we are at peace. I have faith that whatever happens will be for our good. I am still praying and hoping for a miracle and believe with every fiber of my being that Trent can beat this. He is the strongest person I know and I am beyond blessed to have him as my sweet husband.

We've Hit Another Bump in the Road

2012-01-01T23:36:00.000-07:00

Happy New Year! It is only January 1, 2012 and we have already met our deductible thanks to an ER visit, an ambulance ride, and what is looking like a four to five day stay at the beautiful Huntsman Suites. Let's back up a few hours...

Yesterday was a mildly difficult day. We have had worse, but it wasn't great either. Trent has had some difficulty getting enough fluids to stay down for a long enough time to do him any good. By 11:00 am yesterday I knew he needed IV fluids. His blood pressure was a little high, he had a touch of a fever, he was vomiting, and his heart rate was about 122-125 and climbing. Being dehydrated can cause all of these symptoms. I called Home Health and by 2:00 Trent was hooked up to IV fluids and trying to rest. He got one liter of fluids before we decided he also needed IV Zofran (anti-nausea medicine). We were hoping that after a bit of hydration the fever would come down and his heart rate would stabilize. Not so. Trent and I rang in the New Year by putting up another liter of fluid for his IV. All night long I kept waking up to take his temperature and check his pulse. After two and a half liters of fluid his heart rate was at 133 and he had a temperature of 100.9. Anything over 100.5 for a chemo patient is not good. We had Home Health come back and check Trent out. Shortly after the nurse left she called back and said the on call physician at the Huntsman wanted Trent in the ER asap. So we packed up and took him to BCCH hoping to get a few IV antibiotics and be on our way home.

In the ER they took some blood cultures, gave Trent some antibiotics and did a chest x-ray. The ER doc came in and said he thought he had cracked the code. Great! This surely would mean that we could take a prescription and go home right? Again, not so. Turns out the doc really didn't have a very clear understanding of Trent's condition. He thought the problem was that Trent had pneumonia. Really all the density on the x-ray was the tumor. After that little mix up he decided Trent needed another ambulance ride to SLC. Wheee!

Doug, Trent's dad, and I ran home to get the kids so they could see Trent before he left. I had mixed emotions doing that. On the one hand I didn't want them to get the impression that Daddy was not coming home, and on the other, I didn't want to take the chance. Jonathan marched right into the ER and said, "Hey Dad, are you sick? Are the doctors making you better? Do you have owies?" He was just chattering away like nothing was too big of a deal. Trent hugged all the kids and was pretty emotional. Zach and Mallory were crying. Mallory kept saying, "I am getting tears on my cute little cheeks!" Funny girl! Jarom and Megan were pretty stoic through it all. The rest of us had a good cry and then huddled up for a cheer for Team Trent. Mallory ripped off her coat to show us that she was wearing her Team Trent shirt! She was pretty proud of herself. Then we said a prayer together. We prayed for continued faith and courage and then turned it over to the Lord. We are completely in His hands and we just have to ride out this storm.

The EMTs came to get Trent but wanted to give the kids a little something before they took their daddy away. They pulled out little Teddy Bears for all of us. One EMT explained to the kids that they could hug those bears as much as they needed when they were scared or wanted to send a little extra love to mommy and daddy. Another EMT was a guy who went to school with my older sister. He was going to hand the bears to the kids but at the last second he gave them to the other EMT then he slipped around the corner and cried. I could see some of the other nurses tearing up too. Ugh. We must have been a real sight.

As Trent was being wheeled out, Jonathan said, "You are going to be all better Daddy! The doctors are going to make you all better!" I love the sound of that! One of the nurses took all the kids to get a soda before they left. That was very sweet and I think the kids thought they were in heaven. On the way home Jonathan was singing the tune of The Nutcracker. His version went like this, "da da dada Dad will get better, da da dada Dad will get better." We all had a much needed laugh about that.

Josh drove down to SLC with me while his wife followed in her car. By the time we arrived Trent was already resting in his room. They have pulled out the big gun antibiotics for him once again. He will be on Vancomycin, Meropenum, and a few others for the next 10 days or so. After talking to our nurse I am guessing it will be at least four or five days in the hospital. Trent has probably not even gotten as bad as he is going to get yet. That point won't come for a few more days and they will probably want to keep him here until everything starts trending in the right direction. I am totally okay with that. I feel much better knowing that there is a team of people working to keep Trent alive instead of just me.

Not Such a Bad Day

2011-12-30T23:42:00.000-07:00

When we left the Infusion Room last night Trent was mad! We had been there all day long and he had had enough. After the chemo and two units of blood, we had been there for 10 hours. That was a very long day.

The ride home was pretty emotional. Trent was so frustrated at the whole situation and I tried to weep as silently as possible to not make anything worse. By the time we got home I had a killer headache, Trent was completely worn out, and we still had to talk to the kids. We gathered all five children around us and tried to give them an update without scaring them too much. Unfortunately Trent was somewhat out of his mind at the time. I think his actions may have scared them more than anything. I told them that we didn't get very good news and that we were on our last chance. We talked about needing to pray even more than we have been and having more faith. Mallory and Zach started to cry while Megan and Jarom just listened. Jonathan was more concerned about getting Daddy "medicine"-an unwrapped Hershey Kiss that had been in his germy little hand. Sweet, but way too gross! I was pretty emotional while we talked and I am sure that didn't give them a whole lot of peace about what they were hearing.

Trent got up to use the restroom and the kids left. I lost it. I just sat on the couch and sobbed while my mom rocked me like a baby. It was horrible. My whole body hurt. I have only known a few times in my life how physically painful emotional pain can be. No wonder Christ bled from every pore. I felt as if my heart would tear right out.

Trent and I fell asleep on the couch before we finally went to bed at 1:00 am. I didn't sleep until around 3:30 and then was wide awake and bawling again at 6:00 am. Needless to say, it was a rough night. When I woke up this morning I kind of felt like everything was in a fog. I was going through the motions and not really feeling anything. The last few days are such a blur. Trent has had his turn with the emotions too. He is so physically and mentally tired of being sick. I know it weighs heavily on him. I told him I would fight until he said to stop. I pray so hard that he never says it. That would break my heart. He has been so strong and I can't believe all that he has suffered. I have been by his side the whole way but I know I have no idea how bad it has really been.

Trent was able to rest for most of the day. He had a rough morning with a bit of nausea but has been able to keep most of his food down. I have been pushing fluids on him all day trying to keep him hydrated. While he slept I ran out and got a bunch of different Ensure and Boost drinks, tons of hand sanitizer, and more medicine. I am determined to be ready for whatever comes.

This afternoon Trent's dad came down to visit. I know that helps Trent a lot. I think the big thing right now is to keep Trent's spirits up and having his dad here is comforting to him.

My dad made a few arrangements today on the sly. He called an old high school friend of mine, Scott Monson. Recognize the last name? He is President Monson's nephew. We used to be really great friends but as of late my dad is better buddies with him than I am. So after a couple of phone calls, it was arranged for Trent's name to be on the prayer roll in the temple session for the First Presidency on Tuesday. In this session they mention each person by name. I started to cry when my dad told me. We will be fasting on that day and would appreciate your prayers as well.

Still Not Defeated

2011-12-29T16:27:00.001-07:00

We were scheduled to meet with Dr. Gouw yesterday. Trent has been terribly ill that last few weeks and I knew it would be a chore getting him to SLC. The night before our appointment he kept telling me he needed to go to the hospital because he thought he was dying. That was hard to hear but I had been monitoring his vitals and they were all fine. I told him his body was not telling me that he was dying buy his mind was not agreeing. Scary. He finally got to sleep, somewhat, and woke up agitated. He has been sweating profusely at night and it makes it so difficult to sleep well. His emotional state was a little shaky to begin with and then we met with the Sarcoma team. Oh brother.

Since the last time we were at the Huntsman for treatment everything has been shifted to the new wing. Where our clinic was once bustling all the time with the infusion room and lab right next to it. This time it was like a ghost town. Kind of eerie. It was really quiet and it seemed as though everyone who saw us knew what was coming before we did. I am sure they did, because they were all in the Sarcoma team meeting the day before. I think I knew what was coming when they took us to the consult lounge instead of the exam room.

We talked with Dr. Jones first. He told us that Trent had already blasted through all the odds for his survival. He again talked about making sure we had all of our affairs in order. He told us he was very impressed with our faith and how we have handled this whole ordeal. He asked me what I thought about doing more chemo. I immediately started to cry. I said I think we should do it but if Trent says 'no' that is okay. That hurt. Badly. I love him enough to let him die to be free from pain but I still have faith that will not be the case.

Then we saw Michael Kennard who has become a dear friend. He helped facilitate our transfer from Nebraska and has helped us many times since then. One time he even drove a script for pain medicine to North Ogden so I wouldn't have to drive to SLC. He wanted to make sure to see us before he changed jobs. I felt like everyone we saw, wanted to see Trent before he dies. That was a little disconcerting. I know they mean well and we appreciate the love and concern but it was difficult to be in that situation. Of course I was quite emotional and I know they are concerned about me too.

Dr. Gouw came in after Dr. Jones and discussed the options. We were given the choice of doing chemotherapy, consisting of Gemcitabine and Dacarbazine, or nothing at all. He said that chemo is not a great idea but it is not a bad one either. He doesn't hold out much hope that it will do anything besides make Trent more ill and possibly hasten his death. The chances of getting an infection and dying are very real. Either way, Dr. Gouw suspects he does not have much time left. We talked about some measures to make him more comfortable and what some of our options would be. We were scheduled for infusion this morning at 8:00 am. We told him we would pray about it and see what the morning brought.

We immediately knelt to pray for guidance in making this life and death decision. We cried buckets of tears and then some more. I cried for my children, for Trent, and myself. I was a mess. Trent was a mess. Megan was waiting for us in the lobby and silently took in our somber mood. We went to my brother's house to rest and take it all in. This time I sobbed. Megan kind of hid herself behind a wall and listened to everything I am sure. At one point in the afternoon I had a very distinct thought. If I had asked the doctors how long Trent had to live when he was first diagnosed, they would have said a few months. I know they did not expect him to survive the summer of 2010. But, we never asked because we did not want to know. So what makes it any different now? We had faith then, and we have faith now. We are in the Lord's hands and He decides how much time Trent has left. That was comforting. It doesn't matter what anyone says because we are all on the Lord's time. So I have decided not to let that bother me.

Later that afternoon, Trent and I explained what was going on to Megan and asked her to pray with us. Then she and I left Trent at Josh's while we went to Josh's office to get her teeth pulled. What a normal thing to do on such an awful day. While we were driving I asked her what she thought. Her reply hit me like a ton of bricks. She said, "Mom, we were given that blessing so we have to do more chemo." Her example of faith was so reassuring and eye opening for me. Megan has been tighter than a drum with her emotions throughout this whole thing and at times it has seemed like she doesn't care. But at that moment I clearly understood. Her faith is greater than her fear.

We made the decision to continue the chemo knowing that we don't have to continue if the side effects outweigh any benefit. We prayed about it and felt that it was the correct answer. Josh also gave Trent a beautiful blessing. We are on the right path and just need to continue in faith to whatever end may come.

So, here we sit, getting round 19 of chemotherapy and two units of blood. And yes, the new infusion room IS beautiful.

We got to see Mark and LaDena yesterday and today Mark got his chemo right next to Trent so we could visit. Trent slept but I had a wonderful talk with two friends who know how hard the cancer road can be. I also got a little "present" from one of our favorite nurses from infusion. Cyd, a.k.a. Johns Hopkins, brought me a little something she thought I could relate to. She found this quote,

"Being happy doesn't mean every thing's fine. Be happy because everything sucks but you're doing just fine."

And this picture:

Thanks Cyd!

Daddy's Doctor

2011-12-29T15:20:00.000-07:00

Jonathan went into Trent's room the other day and announced that he was the doctor and was going to make Trent all better. Oh, how I wish that were true! While he did not physically "make Daddy better" he sure is salve for the soul.

Merry Christmas!

2011-12-24T12:20:00.001-07:00

Merry Christmas from our family to yours!

As I have reflected on the meaning of Christmas over the last few days I have been overwhelmed by the goodness of our Heavenly Father to send His son to change the world. Christ's mission was laid out before He was born and it was up to Him to fulfill the wishes of His father and redeem the world. It must have been amazing to see the signs of the birth of a king. I have often wondered if I would have seen the signs if I had lived then. Would I have enough faith to follow a star to see a baby? Would I have recognized the truths being taught and the miracles being performed or would I have been a skeptic? I like to believe that I would know the Son of God when I saw him. In the past year and a half I have come to know my Savior in a much more personal way than I ever thought possible. I am so grateful for that blessing! We have suffered much through all the things this year has brought us but we have been blessed beyond measure. We have witnessed many miracles, big and small, and been comforted by the spirit of the Lord. Our lives have been blessed by so many wonderful people who have reached out to share our burden and lift us up. It is a testament to me of the love our Father in Heaven has for each of us. How He can send so many people to succor our little family is beyond my understanding. We are grateful. We are humbled. We are so blessed. Above all, our love for our Savior has grown. The miracle of His birth is a wonderful reason to celebrate.

Merry Christmas!

Serotonin Syndrome

2011-12-22T16:52:00.001-07:00

I talked to Katie from the Huntsman the other day about the Citalopram. I suggested getting some labs done so we could see if anything was out of whack. She sent Home Health because Trent was too sick to go out. The nurse came Tuesday night and checked on Trent. His heart rate was really high but everything else seemed fine.

Yesterday Katie called and said the labs were not impressive meaning there wasn't anything that seemed too out of the ordinary for a cancer patient. I really felt like all the problems lately were being caused by Citalopram. She agreed that was a possibility and suggested I talk to a pharmacist about it. I called the pharmacist in Brigham and we discussed the Citalopram and all the side effects it had given Trent. I asked if it was likely that he could experience so many of the known side effects from one drug. He said it was possible -but seemed unsure about it. He suggested I ask the doctor to prescribe another anti-depressant that was not in the SSRI (Selective Serotonin Reuptake Inhibitors) drug family. So I hung up and started researching. I found out a few things that would have been very helpful to know about six weeks ago when he started taking Citalopram. I also became convinced that Trent has been suffering from Serotonin Syndrome, a potentially fatal condition caused by excessive amounts of serotonin in his body. Serotonin is not something that can be tracked on a normal chem panel which is why his labs were pretty normal. Excessive amounts of serotonin can come from drugs that increase serotonin levels that are taken at the same time.

A few weeks ago I was told by a nurse that I could give Trent a cough suppressant without an expectorant to help his cough. I only did that once. That was right before we went to Boston. That cough syrup-which increases levels of serotonin-mixed with the Citalopram and wreaked havoc on him! I think Trent is extremely sensitive to serotonin and his body went crazy with the increased level of serotonin. The dose of his Citalopram is low enough that it would not cause a problem in 99% of the population taking the drug but my Trent is the minority! I immediately called the pharmacist back and told him I thought Trent had Serotonin Syndrome. He admitted that he wondered the same thing while we were on the phone earlier. The treatment is to stop the Citalopram. Thankfully, I had already started stepping down Trent's dose. It should only take a couple of days before it is all out of his system and the side effects will dissipate.

We went to see the family doctor today to have the stitches removed from where the chest tubes were. He agreed with my feeling that Trent had Serotonin Syndrome and the course of action we had taken. He didn't think any medication was necessary to balance the serotonin in Trent's body but advised us to call him if anything changed in the next few days.

With all of this new information everything else makes sense, the loss of motor skills, the hallucinations, the dry mouth, the nausea and vomiting, and the plethora of other things we have dealt with over the past month. All of it was unnecessary and more than slightly irritating. Trent already has so much discomfort and pain from having cancer, it is maddening that he has to deal with everything else too. For now, my rant is done and I can leave it all on the blog and never have to think about it again. I am just glad we got it all figured out.

Home Sweet Home

2011-12-19T22:52:00.000-07:00

We visited Dr. Sugarbaker on Friday. Trent was doing pretty well that day. All the doctors were pretty surprised by how good Trent looked. They kept saying that he is a real fighter and they were surprised he was still alive. He really was soooo close. Scary.

Dr. Sugarbaker wants us to do the chemo for a few rounds and then come back. He wants to see us in three months for surgery. He was very confident in the outcome and that is what we needed to hear. I stood up and told him that we were going to go forward with the chemo therapy fully expecting good results and we WOULD be back to see him soon. He jumped up and shook my hand and said, "You are right, I expect that too."

I asked him about photodynamic therapy, which is what we would have gotten in Philadelphia. He said he doesn't do it and would never recommend it to anyone. Apparently the ventricles of the heart also have a very high uptake of the photo sensitizing drug they hope the tumors absorb. Then when the light hits the ventricles, they have had some explode, and patients have died. Good to know...

While we were waiting in the exam room I started snooping around on the computer that had Trent's medical records on it. I located the first x-ray Trent had just after he nearly died, and the x-ray from the morning he left the hospital. What a dramatic difference!

Before

See how cloudy this is? That is all the fluid that was filling the pericardium and causing pleural effusions. The dark spots are the only parts of his lungs that were clear.

After

Now look how much more darkness there is. WAY BETTER! Unfortunately you can also see just how big the tumor is. The big white mass just under the port on the right side of this x-ray is the tumor. Yuck.

While I was snooping around and snapping pictures, one of the doctors came in and asked if I could record video on my camera. Then he scrolled down through the CT scan while I filmed it.

This is from the neck down. It is like you are seeing a picture of each slice of Trent's body starting from his neck to his abdomen. You can see the little black spots appear, those are the tops of his lungs. As the scan goes further down the black spots get larger and larger until the left lung (right side of the movie) turns all white. That is the tumor. Again, YUCK!

We left feeling pretty good despite the ugly pictures. We headed home early the next morning. Only the two older kids knew we were coming home. When we walked in the door the three little ones were shocked! We got tons of hugs and kisses. Yeah, we missed that, a lot! Jonathan told me that he didn't know where I was and he had been looking all over for me. There is nothing like Home Sweet Home.

For the last few days we have been eating up every second of family time we can get. We took the kids out to a movie and to see the lights on Saturday night. Since then, Trent has been pretty much bed ridden. He made it to church on Sunday but he was pretty sick. For the last few weeks Trent has really struggled with hallucinations, excessive sweating, either being too hot or too cold, some swelling, tachycardia (rapid heartbeat), etc. I have been trying to handle each symptom as it comes up. I got fed up with that and decided there has to be a reason for it and it can't all be cancer. I think I have zeroed in on one medication that is causing all the problems. I called Katie but haven't heard back from her yet. I have already begun weaning Trent off this medication. If I am wrong I can easily add it back in but I really think it is the medication that is the culprit.

Since we have been home we have received such a huge outpouring of love and support. We are amazed that so many people care and have been so giving. We are overwhelmed and humbled, again. It just doesn't stop and we are so grateful! To all of you who have been on this journey with us, THANK YOU! The prayers, the kind words, the encouragement, and support have all been so wonderful. We are truly grateful.

Another Pretty Good Day

2011-12-15T19:30:00.000-07:00

A couple of days ago Trent's cousin, Nicole, called. She was just checking in and wanting to know if we needed anything like a care package or something. She has friends in the Boston area and thought they could maybe help us out somehow. Trent said he would really like a priesthood blessing. So last night two men showed up at our hotel room, ready to use their priesthood for a complete stranger. We had a nice little conversation and got to know each other just a little bit. They administered to Trent in such a sweet manner. Trent remarked that it was the most spiritual experience he had had for a while. It is so comforting to know that the priesthood is the same no matter who or where you are. It is truly the mouthpiece of the Lord and having that blessing brought so much peace. It was so nice that Nicole thought to call and that the first thing Trent thought of was getting a blessing.

Brian, Trent, and Jared

Trent had been feeling just a little queasy and was a bit nauseous this morning. We tried to keep things pretty low key so he could rest as much as possible. I think we are both just a bit jumpy about anything he experiences because we don't want ANYTHING to keep us from going home on Saturday. So, he napped while I worked on my computer. Brenda, the Home Health nurse stopped by and said not to be too concerned with Trent's symptoms. His body has been through a lot and will take a while to fully recover. All of his vitals are looking fine. We found a scale in the exercise room in the hotel and Trent weighed himself. He is down about six pounds from when he left the hospital. I think most of that is the fluid that we are trying to get off him with the Lasix.

He was finally able to shower today, for real. I am sure that made him feel a lot better. He was able to eat pretty well this evening too. Today has been a little more iffy than yesterday but overall he did pretty well.

I was able to get in touch with our team at the Huntsman today. They are in the process of getting all the records from all that has happened in Boston. Dr. Gouw has already begun the process of finding the best chemo for Trent. We are not 100% sure what it will be but Dr. D'aDamo and Dr. Gouw will figure that out shortly. We are already on the schedule at the Infusion room for the 28th. That is longer than I would have liked but Trent's body probably needs to wait that long. We are praying for the exact chemo in the correct dose and delivery this time. We REALLY need it!

Tomorrow we will meet with Dr. Sugarbaker and then we may be doing a little sight seeing with Jared's family. (Jared is the one on the right in the picture) His wife, Nicki, called today to see what they could do for us and I thought it might be fun to see a little more of Boston than the hospital and the airport. Hopefully Trent won't be too worn out after seeing Dr. Sugarbaker.

I did a bad thing today. I read some of my earlier posts. I never do that. It is just way too dramatic to be MY life. I really can't believe this has all happened to us. It still seems like something you just hear about but never really happens to you. Maybe it's good that my brain still has not wrapped itself around all of this. Maybe that is how I can handle it. Maybe someday it will all sink in. It probably will, so I better reserve my spot at the funny farm!

Very Good Day

2011-12-14T18:27:00.002-07:00

Last night was like having a newborn! We were up every three hours, if not more, giving pain medicine and heading to the bathroom. Lasix are not so great at night! After a fitful sleep, I got up for breakfast. I brought back as much food as I could hold for Trent to eat plus snacks throughout the day. I am sure I looked like a pig with condiments and oranges stuffed in my pockets and carrying two overflowing plates. :) Oh well, just another sacrifice for my healing husband!

Late last night Trent and I sat down for a "talk". I initiated this one. I told him we needed to discuss the Amish beard and the possibility of getting rid of it. Seriously, he looks like Moes from "The Office". Trent didn't seem too thrilled with the idea. I really don't mind facial hair too much and I think Trent looks good with it. Since he has had all this chemo he doesn't really grow any hair on his upper lip. So when he grows facial hair it only comes in as a beard. I don't love that look. While I was down stuffing my pockets at the continental breakfast, Trent jumped up and shaved his beard. (When I say "jumped" I really mean he hobbled along slowly.) When I returned I didn't even notice until I saw his razor on the bathroom counter. That was a nice surprise!

A clean shaven Trent!

How I love that smooth face!

Trent really had a pretty good day. We walked the halls a little bit, rested a little bit, and talked a little bit. We had a visit from the Home Health Nurse today. Everything looks fine. Blood pressure, temperature, and heart rate. We will have another visit tomorrow and then we will be in Dr. Sugarbaker's clinic on Friday. I am surprised by how much better he looks today. Two more days of rest and I think he will be able to travel. We are excited to see our kids and to be home. Boston is great but home is better.

Really Resting, Finally

2011-12-13T17:41:00.000-07:00

I finally got to spring Trent from the hospital today. Somehow that made everything a whole lot better! He is resting comfortably, mostly, and loving the peace and quiet.

Last night I slept like a rock! It was heavenly! I woke up feeling so much better. When I got to the hospital Trent was already getting antsy to get outta there! We were paid a visit by none other than Dr. D'aDamo, the not-so-impressive doctor from the first visit. To his credit, he made a much more favorable impression on me this time. He does know his stuff, he just didn't have experience with interoperative chemo which is what we needed from him before. Now that the plan has changed my expectations have also. We discussed three or four different treatment options and he explained the risks and benefits of each. No one really knows what will work for Trent. His cancer is way too rare. To put it in perspective, sarcomas are only 1% of all cancer diagnoses each year. Of that 1%, extraskeletal osteosarcomas, which is what Trent's cancer has now been classified as, only make up 1-4% of diagnoses. So his unique circumstance does not come up too often, to say the least.

Dr. D'aDamo confirmed what the radiation oncologists had said. Radiation is not going to benefit Trent right now, possibly never. Sarcomas do not really respond to radiation very well, so at this point radiation would probably just irritate the lungs and heart and not provide any benefit. Dr. D'aDamo is in favor of taking two of the chemotherapies that were successful for Trent before, Gemcitabine and Dacarbazine, and putting them together in a little different way. Dacarbazine is the liquid form of Temodar which is a drug that was part of the "triplet" we used last. It would be a 28 day cycle instead of 21, and Trent would only receive two infusions, two weeks apart. After two rounds, we scan. He said that they are getting very good response using these drugs in Europe. We would know pretty quickly whether or not these drugs were working. A lot of it would be based on how Trent feels and then we would have regular chest x-rays. X-rays are obviously not as good as CT scans but they would be able to give us a good enough picture of what is going on without exposing Trent to as much radiation. Dr. D'aDamo is also hoping to be able to get one dose in before Christmas. He is a little leery of waiting two weeks because of how aggressive the tumor is right now. The last two weeks it wreaked havoc on Trent's innards. We would like to avoid that if we could.

Right now Trent is a little sore in his chest where they removed the tubes, but mostly he is struggling with a yeast rash. Because of all the antibiotics that he was on pre-operatively, his natural body bacteria is all out of whack and he has a wicked rash now because of it. We are going to fill him up with yogurt and Fluconazole. Hopefully that will do the trick in short order. Trent will be a much happier guy once that is taken care of. He is able to get up and around okay now and is talking in full sentences that make sense most of the time. That is a huge relief! It has been almost a whole week since he was himself! Having him "back" makes the whole ordeal easier to handle. We are both looking forward to a little R and R and are going to do everything we can to keep him from experiencing any unplanned trips to the hospital!

Day 7-Change of Plans, Again

2011-12-12T17:16:00.000-07:00

It is surprising to me how much of a blur these days have become. It is hard to remember what happened on what day and as I sit down to write about today it is difficult to remember.

The last few days have been very difficult for me and Trent. Trent has been "out of his mind" and I have a hard time remembering that. Therefore our communication has been strained. I think a lot of the problem has been solved by reinstating the medications he needed. Last night as I knelt to say my prayers, before I had even finished a whole sentence, the impression came to me that Trent and I needed to pray together. In the last few days we have only had prayer together twice. Although we have each said hundreds of prayers, only two were together. I felt strongly that this was the last piece of the puzzle in terms of us getting back on track. When I arrived at the hospital, things kept getting in the way and when I remembered, Trent was asleep. So I will definitely pray with him before I leave tonight and reconnect with him.

We learned today that Trent will be discharged tomorrow. His kidney and liver function are almost back to normal. His blood pressure has been pretty stable and his oxygen saturation has been great. Right now he is off all tubes and wires except the heart monitor. The other chest tube was removed earlier this afternoon and the doctor who did it was great, surprising because he couldn't have been a day older than 20! Yeah, Trent was Doogie Howsered today!

He can go home as early as Wednesday if we want. Dr. DaSilva wants to see him before we go. I think the best plan is to let him recover for a few days in the hotel and then try to travel on Friday or Saturday. We will have a home health nurse come to the hotel each day to make sure all is well.

We got the pathology results today. The tumor has now been classified as an extraskeletal osteosarcoma instead of undifferentiated pleomorphic spindle cell sarcoma. That means that is in bone cancer that is not in the bone. The tumor has some characteristics of an osteosarcoma but has been behaving more like a sarcoma that originated in the muscle, which it did. Dr. George came and explained that the treatment for either one would likely have been the same. She feels that revisiting some chemotherapy agents we have already used is a good option, namely ifosfamide. The exact treatment has not been confirmed yet but some ideas have been tossed around. One problem with ifosfamide is that they have to give it with about four liters of fluid because it is processed by the kidneys and is nephrotoxic (toxic to your kidneys). In light of what has happened to Trent in the past few days, all the extra fluid in his pericardium and pleural effusions, more fluid is not ideal for him. We would have to see significant improvement in his kidney and liver function, and a stabilization of the fluid around his heart. He is trending in that direction right now and the drain is in place to prevent fluid on the heart but only time will tell. We are planning on two rounds of chemo and then a scan. Trent needs to wait two weeks to let his body heal from the trauma and procedures he has undergone in the past week. Chemotherapy will stop all the healing so he needs to be pretty well healed before they start.

Trent's mom left today. It was great to have her here. I know Trent was glad she came. I, on the other hand, am happy to get some good rest tonight. That is all that needs to be said, right Joellynn? :)

Day 6 in Boston, Sigh

2011-12-11T19:31:00.001-07:00

Today didn't get much better. I got a call from a very frantic Trent at 4:00 am. His phone was dead and he couldn't call me. One of the nurses offered her cell phone so he could call me. I had to talk him down from the ceiling and ask a nurse to give him an Ativan. I said a prayer with him and promised I would come as early as I could. By the time I got to the hospital he was resting well. I didn't make a peep, didn't want to wake the sleeping beast. Trent was agitated all day long. Everything I did was wrong. Finally it dawned on me to ask about his meds. I figured out that he was not being given his Citalopram, an anti depressant. I was told when they admitted him that I didn't have to worry about his regular medications, that they would all continue while he was in the hospital. Apparently his Lyrica and Citalopram had fallen through the cracks somehow. I think that a lot of his agitation is due to stopping the drugs cold turkey. Those drugs have now been resumed and he is on continuous Ativan for at least a few more days.

Trent was moved to a step down unit today. He still has one more day until the catheter and second chest tube come out. That should make a big difference. When they moved Trent to the step down bed it was kind of funny to see three women try to handle it. They hung him from the ceiling and switched beds. It was uncomfortable for Trent but the step down bed is soooo much more comfortable, plus it has an extension so it is actually long enough for him.

Trent was able to do only about a half of a lap today. We need to be better at that tomorrow. He is not eating much and that has to change too. He hasn't lost any weight yet though so that is good. Today was a very long day. I was at Trent's side all day long because he gets so mad when I leave. He was getting a breathing treatment today and was mad at me because I let him do it for so long. In my defense, I don't have any experience with nebulizers, and I am not on the payroll at Brigham and Women's Hospital. I think tomorrow will be better with the 24/7 Ativan, I hope.

Tomorrow we will talk to the medical and radiation oncologists. I am hoping the biopsy results are in also. Well, maybe it is okay if they are not in. I need a day or two without bad news. I am anxious to have more answers though, so we know what we are facing.

We can do this, we have just hit a rough patch. I think we are just so tired. Physically, emotionally, mentally. It is exhausting but it doesn't stop just because you are tired. So, we pray for strength to endure this trial. It looks like we may have many more months to go. We will know more tomorrow.

Day 5 Was Not the Best in Boston

2011-12-10T19:21:00.001-07:00

This morning Nate left. Boo on that. He was really great to have around. We woke up to several voicemails from Trent's Dad. Trent had been trying to call me last night and I had left my phone in my coat pocket that was hanging in the closet so I didn't hear it. Trent was panicking. One of the nurses had asked him why he had Lasix on his medication list at home. She said it is prescribed for those in congestive heart failure. That threw him out of whack. The nurse didn't happen to notice the "PRN" on the med list-meaning the Lasix are only taken as needed. So Trent thought she said he was in heart failure. He had so many drugs yesterday that they have not fully cycled through and he is still loopy. So everything he hears gets skewed in his mind.

Trent is still having trouble gripping things and therefore I have to spoon feed him. I am not sure how many glasses of ice and juice got spilled on him today. He keeps trying to do it himself and it always ends up in his lap.

On rounds Dr. Sugarbaker told us that because the tumor in Trent's lungs has invaded the pericardium there is no use in doing the lung surgery right now. We are being referred to Dr. George, a medical oncologist and Dr. Benhini (or something like that), a radiation oncologist. Hopefully between all three doctors, they will come up with a plan by Monday. Right now I have a million questions but no answers.

Trent has been having regular chest x-rays since the surgery yesterday and today they found he had a pleural effusion on the right lung. So they did an ultrasound so make sure. They also did an ultrasound of the left arm and did not find a clot. When we got there this morning his arm looked much better and felt a little squishy like a normal arm. After the ultrasound on the right lung they "tapped" his pleural space with a long needle (they went in through his back) to remove fluid from around his lung. The ended up taking out about 400cc of fluid. After that was out Trent was able to breathe much better. He has been doing breathing treatments every six hours and that seems to loosen things up a bit so his coughs are much more productive. He suctions out his own mouth when he coughs and I have to say, that sound is pretty gross. They removed one chest tube today and that lessened the pain a little bit too.

Trent was able to get up today to walk around a bit. They have these cool rolling walkers and then a nurse walks behind him with a chair in case he gets tired and needs to sit. He was doing really well and was able to take two laps. The whole time he was saying, "I will beat this, I am never giving up." That attitude got tired when he did.

Not a great picture but that is what he looked like all day long.

Toward the end of the day Trent was pretty agitated. He was mad because a radiation doctor came to speak with him and I was not there to hear it and he didn't understand what he said. I was out in the waiting room trying to let him sleep and not bother him. So because I missed it, I was on the outs with Trent. I asked the doctor to come back and repeat what he had said, which he did. I didn't miss much. Trent is feeling frustrated that we keep getting bad news and there doesn't seem to be an end in sight. Honestly, when they first said that chemo was back in the plan for us, I wondered if it was Heavenly Father's way of sparing Trent's lung. Maybe the chemo will shrink all the tumors and we could save at least a part of Trent's lungs. Who knows? I tried to take the positive spin but Trent was not listening. He doesn't want to do four more rounds of chemo. No one has ever said anything about how many rounds yet, he just picked a number out of the sky. I told him he only had to do one, then one after that, and so on.

Sometimes it is exhausting to be positive when I just want to scream, "How much longer can we do this?" It kind of took its toll today and Trent was being impatient with me and that hurt! I was really bugged. So I decided it was best if I left. I cried for about 3.2 seconds and that was it. I don't really have time to cry. I can do that later. Right now I have to make sure I know EXACTLY what is going on with Trent's treatment and what questions I should be asking. I left a note for Trent's nurse that under no circumstance should a doctor consult with him unless I am present. Trent never remembers what they say anyway. I guess the days of leaving him alone to sleep are over. I am going to camp out in his room all day.

Today is a day I am glad is over. I think the week is starting to catch up to me and I need sleep! Hopefully tomorrow is better than today.

Day 4 in Boston

2011-12-09T19:14:00.001-07:00

Trent seemed better today. We were able to stay with him for about 2 1/2 hours this morning before surgery. I noticed he had some swelling in his legs and his left arm. I was a little concerned about that but was reassured by the nurses that it was because of the fluids they were giving him. I got Trent all cleaned up and even combed his hair. I love that he has enough hair to comb! Okay, I really just washed over it with a washcloth, like I did to all my babies. But it was still fun!

The procedure today was just to put a permanent drain in the pericardium wall so the fluid could keep draining into his chest cavity and be reabsorbed by his body. He went in at 2:30 pm and around 4:00 Dr. DaSilva came to talk to me. Everything went okay. He had to put in two drains, the one in the pericardium and another in his lung because he had another pleural effusion. He had to drain another 1 1/2 liters from the pericardium. He was also concerned about the size of Trent's left arm. It is almost twice as big as the right arm now. He fears there is a blood clot in Trent's arm. He also said he could see that the tumor had invaded the pericardium and was probably causing the bleeding. He does not know if that part of the tumor is dead though. He is rushing the biopsy results and we are hoping to get them tomorrow or Monday. Dr. DaSilva also said that Trent is malnourished and nobody could see it. He is such a big strong looking guy that when you look at him you think he is fine. But his blood work says he is malnourished. They may decided to put in a feeding tube to pump him full of nourishment 24/7.

Tomorrow morning they will ultrasound his arm for clots. The treatment for that is blood thinners, which they don't really want to give him because of the bleeding in his chest. The chest tubes will come out probably by Sunday and he should be pretty much recovered by Monday or Tuesday. Once we know the test results we can make a plan for surgery, or whatever the next step is.

When I finally got to see Trent he was pretty out of it. He was not in too much pain, yet. They don't use incentive spirometers here so I will have to keep reminding Trent to cough and breathe deep. Within the next hour he was pressing the button for pain medicine as much as he could. I asked if there was anything I could get him and all he wanted was breadsticks. Tomorrow he will be allowed to eat, and we hope he will have a healthy appetite.

Right after surgery.

Trent and Nate a couple hours post surgery.

The nurse kept wanting Trent to cough so she turned on his bed massager. She said lots of people don't like it but Trent loved it. It went on for about 30 minutes and he loved every minute of it!

By the time we left him tonight he was looking much better. We are hoping and praying for good news to come. Hopefully this doesn't set us back too much. We see and hear about other patients who have undergone the same surgery and they are handling the surgery very well which gives me a lot of hope for Trent, especially considering these people are 30+ years older than he is. If we can get him healthy enough to do the surgery soon he will do great. Before we came I tried to prep myself to handle the ups and downs of the situation, knowing that it probably wasn't going to go as smoothly as the doctors lay it out. Well, here we are, in one of the downs, but the only way to go is up and that is where we are headed.

Update on Trent

2011-12-08T17:21:00.001-07:00

Trent is doing somewhat better now that his heart can beat properly again. The doctors fully expect his kidneys and liver to bounce back to normal soon. The drain that they put in yesterday is still draining quite a bit of blood. They will have to put in a more permanent drain inside his body tomorrow. He will be having a bronchoscopy (this will be the third bronchoscopy in six weeks) and they will be cutting a pericardium window. The window is for the blood to drain from the pericardium into the chest cavity to be reabsorbed by the body.

When I saw Trent today he was very tired but better able to breathe. His lungs still hurt because of the tumor but at least his heart is not longer having the life squeezed out of it. He looks a little beat up but is way better than yesterday. It is hard to believe that all happened yesterday. It seems like it was a million years ago. Trent doesn't remember any of it. He vaguely remembers being at the hotel and being very tired. He asked me to repeat the day's events for him about three times. I am so glad that the situation was taken care of so quickly, it easily could have turned out much worse.

A very, very tired Trent.

Looks a little beat up, but better. He is even getting dark hair!

Joellynn and Nate with Trent in TICU (Thoracic ICU)

As we talk to people at the hospital we get a great response from ALL of them about Dr. Sugarbaker. People from all over the world are here to receive his care. I have heard that this is the only TICU (Thoracic Intensive Care Unit) in the nation-possibly the world. I haven't done my research on that so I am not sure it is true, but it is the first time I have even heard of a TICU.

All in all, it was a much better day than yesterday. I am very relieved to have someone else watch Trent 24/7 to make sure he is taking his next breath. I know he is in good hands and I feel really good about the situation. There are more obstacles to overcome but we can do it. WE CAN DO HARD THINGS. I have learned that over and over again. Just because it is hard does not mean it can't be done.

We are so grateful for all of your prayers and for putting Trent's name in the temple. I know it is helping him. THANK YOU!!!! Your support is so important to us and the outcome. Please put Dr. Sugarbaker and Dr. DaSilva in your prayers as well. I really need them to have as much help as they can get.

We Almost Lost Him

2011-12-07T18:58:00.001-07:00

Sunday night my dad gave Trent a very beautiful blessing. He blessed him that he would have strength and determination to endure what lay ahead, he blessed the medical staff through him that their actions would be 100% correct and the procedures would be flawless. He blessed him that he would be a strength and would give encouragement to others in the same situation. He then reaffirmed the blessing from Bishop Hahne, that he would live to raise his children to maturity. It was so incredibly reassuring.

Trent had a very, very hard week. He was in so much pain and was vomiting and very lethargic. We knew he needed blood and were very anxious to get to Boston to get it for him. At the last minute Trent's friend, Nate, said he was coming with us. Normally I would refuse and say I can do it myself, but this time, it felt right.

When we said goodbye to the kids it was hard. Jarom wanted to goof around, Mallory wanted to hug for a long time, Megan gave a semi-quick hug then was out the door. When I hugged Zach his little body just shook. That tore my heart out! Jonny, of course, doesn't understand we will be gone for so long.

At the SLC airport we were met by an employee at baggage check who remembered us from two weeks ago. She was very helpful to us last time after we explained our situation. This time she told me her husband had passed away from Melanoma on September 23 and two weeks ago we were the first cancer patients she had seen since her husband's death. She told me that after we left she lost it and broke down. That was really hard because I am guessing she is very close to my age.

The first leg of the flight was horrendous. Trent was so ill. He was hallucinating and sweating and freezing all at the same time. I sat by a guy named Ty Schuman from Pocatello. He was a cancer survivor himself who had chosen to use natural therapies. He ended up massaging Trent's hands to get him to calm down. The flight attendant offered us oxygen for Trent but then we found out that if he took it the paramedics would be waiting at the gate for him and would have to give him clearance to board the next flight. We were worried we would miss the connecting flight so we didn't do it. The second leg was better but only a little. Trent slept most of the flight while I stared at his chest to make sure he was still breathing. Nate and I agreed that as soon as we landed he was going to the hospital. But Trent didn't want to go and he seemed a little better so we went to the hotel.

Last night was horrible. Trent had been doing the bowel prep for surgery and was miserable. At 5:30 eastern time, 3:30 mountain time, I finally gave up and took a shower, knowing I would not be going back to sleep. We got to the hospital early for pre-op.

We met with AMAZING nurse practitioner named Donna. She was perfect for me today. She totally listened to everything I had to say and was 100% in my corner. I was nervous that Trent was too sick for surgery and knew he REALLY needed blood. She kept saying, "You know your husband better than anybody and all you have to say is, 'I feel uncomfortable with...'" After visiting with her we went straight to Dr. Sugarbaker's clinic and demanded to see a PA. They finally tested everything and the results were shocking. His blood pressure was 65/32, his temperature 94 degrees. He hematocrit was 21 and his hemoglobin was 6.7! I was mortified! His kidneys and liver were in failure! They took him straight down to the ER because a room would not be available upstairs for another 5 hours. In the ER his blood pressure dropped to 50/? they couldn't even get a diastolic reading. They did an ultrasound of his heart and as soon as I saw that black screen I knew what was happening. His pericardium was filled with fluid. Normally there is 100-150 cc of fluid there but his was filled with 1 1/2 liters! I had to sign all sorts of consent forms to put a tube under his xyphoid process to remove fluid from his pericardium. If they couldn't do that quickly enough they would him open him up, possibly spilling cancerous blood into his abdomen. They ushered us out of his room and whisked him away.

I was really calm all day. I didn't shed a tear through it all. When Dr. DaSilva came back to talk to me he told me he removed all the fluid from around his heart and that surgery was not going to happen tomorrow. Ya think!? The fear now is that fluid around his heart has cancer in it, or the heart has cancer in it. Test results will come in a couple of days. Dr. DaSilva said that would change the surgery strategy. He also mentioned that the surgery was palliative care. What!? I said that my intent was a cure and was told that the surgery was curative. He stumbled all over himself and said that they never said that. WRONG!!! I would not have dragged Trent clear across the country for palliative care! However, what he said does not change how I feel. Trent will make it through this. I KNOW that!

As we were sitting in the ICU waiting room it was like I was in a fog. I couldn't hear anything except my pleas to Heavenly Father. There was a woman about 50 feet away from me speaking about her loved one on the phone. Out of everything else that was going on, I clearly heard her say, "This is just a minor setback, he's going to be just fine." It clicked. That was intended for my ears only.

We finally got to see Trent. He didn't remember anything and was kind of loopy on meds still. When I had to say goodbye for the night I let some tears slip. Trent had no idea he almost died today. He does not remember any of it. Lucky him.

Nate was great all day. I barely spoke to him at all. I was totally inside my own brain. It was nice that he understood that. We finally made our way back to the hotel. I walked in my room, dropped my bags and fell to my knees. I prayed and cried and prayed and cried. After a few minutes my tears just stopped. I felt so calm. I KNOW Trent is going to live. I felt such a feeling of peace that I was being heard. Obviously the path has changed somewhat and the road may be longer and even more difficult than we planned. But we have not been left alone and I felt that.

One of the Hardest Weeks Yet

2011-12-04T22:43:00.001-07:00

The past week has been one of the worst yet. Trent has been extremely ill and has not really gotten out of bed at all. The few times he was up it was only to get clean clothes on and go lay on the couch instead of the bed. He has been in a tremendous amount of pain. I called Katie at the Huntsman to get some help with the pain. They couldn't get Trent into the pain clinic because they are booking patients three weeks out. Dr. Gouw suggested alternating Ibuprofen and oxycodone to help with the pain from the pneumonia. He also increased the dose on the oxycodone and that has helped quite a bit.

Trent is really needing a blood transfusion. I am going to call the Huntsman tomorrow and see if they will test his blood and get him some more blood before we leave. I am a little nervous about traveling with him when he is so weak. I will probably have to put him in a wheelchair and have him drag the suitcases on each side. I guess that is not so bad. I just hope he can handle it and the travel doesn't wear him out completely.

I am really looking forward to going to Boston. I dread each night and am counting down to the time that someone else has to worry about keeping Trent alive. I am relieved every morning to see that he has made it through the night. He hasn't been sleeping well and it is very painful for him to lay down. It puts a lot of pressure on his heart and his lungs. Unfortunately he is so weak he doesn't like to be up much.

We are getting ready to leave on Tuesday. Our Christmas preparations are mostly done. We are going very low key this year. Jarom has already written a letter to Santa to ask him to come to our family when Trent and I come back. So, I really have a little more time to prepare. We are hoping to be back by the end of December, if all goes well.

We have once again, been humbled by the generosity shown to our family. We are overwhelmed. I hear stories of children praying for Trent and it brings me to tears every time. I have no idea how many prayers are being said for him and how many pleas for a miracle have been made, but I am grateful. I know that before this happened to us my head was buried way too deep in the sand. I would hope that I will someday be able to respond to someone else as compassionately and generously as we have been treated.

Out of the Mouths of Babes

2011-11-28T17:38:00.001-07:00

My cute little nephew Sam Hamilton drew this picture for Trent. When Melissa, my sister, asked him about it he said, " This is Trent, and this is the Holy Ghost letting him heal."

Thanks Sam! You brought tears to my eyes-and they were the good kind this time!

What a Week!

2011-11-28T17:10:00.001-07:00

We got flights out of Boston on Wednesday afternoon so we were just hanging out in the morning at the hotel. Trent was EXTREMELY ill and it was pretty ugly. I said a prayer and put on some soft music. I could feel the spirit in the room change almost immediately and it didn't take Trent too long to feel the same. I was pretty worried about how I was going to get him to the airport and home. We decided to fork out $50 bucks for the cab ride so he didn't have to walk to the subway. That was the best $50 bucks I have spent in a long time!

We had a short flight to JFK and Trent was doing really well. The five hour layover tanked us though. We started off okay, watching some episodes of "The Office" on my laptop. After about three episodes Trent was miserable. He kept saying he needed to throw up and I begged him to go to the bathroom to do it. He said the men's rooms in airports are way too gross to throw up in and he would rather do it right in front of everyone. Yuck! Thankfully it did not come to that. While we were waiting Dr. Carr from Huntsman called to see if we were okay. I told him about Trent's fevers and he warned me about pneumonia. He said that Levaquin was a good antibiotic to take for that. I had that at home but not with me.

We made it through the six hour flight by the skin of our teeth. My brother, Josh, picked us up at the airport and let us stay at his place that night. We got to Brigham at about noon on Thanksgiving and Trent went right to bed. When he woke up he was feeling pretty good so we gulped down Thanksgiving dinner and headed to Idaho to be with our kids. Mallory had stayed in Utah an extra day to play with cousins so we had some good time to spend just with her while we drove. Trent was singing and having fun during the whole trip. He looked better than he had in a long time. But by the time we got to Idaho he was headed downhill. Trevor and Heidy gave us their bedroom because Trent was so sick. He was in bed all day Friday and was steadily getting worse. By the next morning I was really wondering if Trent had pneumonia. He was showing all the signs and I was afraid we would not have enough pain pills to get him home if I didn't get more quick. So I hauled him in to the Community Care facility in Rexburg. The PA was pretty out of his element when he saw Trent. He told us that Trent was the sickest person they had in that clinic in all the ten years of operation. Uh, thanks? I gave him the run down and told him the short version of Trent's history. I told him he had pneumonia and needed antibiotics and pain meds. He basically took my word for the diagnosis and gave him some fluids and Rocephin. Trent's blood pressure was really low (94/61) and his pulse was high (122) They ran a CBC on Trent's blood and found that his hemoglobin was 8.4. Normal for that is 12-16. Translation: Trent needs more blood. At Huntsman they don't usually do a transfusion until the patient hits 7. Oncologists have a higher tolerance for low hemoglobin than regular docs do. So the PA was saying Trent needed to be admitted right away for a transfusion and that we needed to get home quickly. After we left the office I called the Huntsman and the on call doc said Trent would be fine to stay and that I should call if he got worse. So we decided to tough it out and stay one more day.

Our kids were having a great time and despite all the drama/trauma that we were experiencing I was enjoying myself too. I know that Trent wishes he was spending more time with his family and even though he was really sick he wanted to stay. We left Sunday morning and tried to get home as fast as possible. We left at 11:15, stopped for a short visit with my Grandpa, and still made it home by 1:50. Yeah, we rocked the road that day! It is normally a 2 hour and forty five minute drive without stops.

Trent has been in a tremendous amount of pain and we are working really hard to control that. I called Katie at the Huntsman today and she is going to call in a few scripts for Trent and we are going to add Ibuprofen around the clock to help control the pain. I faxed her the CBC from Saturday and Dr. Gouw decided not to transfuse yet. They might do it in Boston before the surgery. So for now, we are going to feed Trent steaks and protein shakes for every meal. Yum!

Very. Long. Day.

2011-11-22T16:32:00.001-07:00

We were up bright and early this morning (according to our normal time zone) to meet with Dr. Sugarbaker. We arrived at his office at 9:15 am and didn't leave until 2:00 pm. Ugh. Dr. Sugarbaker is very nice but in a Bostonian sort of way. He is definitely not a hugger, much to Trent's dismay. He said that he would do a Left Extrapleural Pneumonectomy. Essentially he would take out the entire left lung, part of the pericardium, part of the diaphragm, and the pleural lining. He said that Trent was lucky because he has huge lungs and the missing lung would likely not affect him too much. After some time the right lung would grow some to compensate for the loss of the left lung. He also predicted that Trent would probably breath better after the surgery than he is now because of the obstruction by the tumor. He said he has patients who still do landscaping and play tennis. That was good to hear. We talked about only doing a lobectomy and he said that by doing that we would only spare approximately 12% of Trent's lung function and the risk for recurrent tumors was greater. He also wants to do intraoperative chemo and possibly some treatments afterward. He mentioned radiation but that determination will be made post surgery. H believes he can get Trent back into the land of NED. (No Evidence of Disease) That's good news!

Trent would be in the hospital for 7-8 days, then would have to stay in Boston for 2-3 weeks following surgery. Dr. Sugarbaker said it would take 3-6 months for Trent to be 100% but he would feel pretty good by the time he was allowed to go home. He also said that flying would not be a problem.

After we met with Dr. Sugarbaker we headed over to the Dana-Farber Cancer Institute to meet with Dr. D'Adamo, a medical oncologist. He apparently had not gotten the memo about the intraoperative chemo. He examined Trent, we talked about what chemo agents Trent has used and what was successful. Then he left the room to look and Trent's scans. Trent and I were both asleep in the exam room. When he finally came back he launched into a ten minute lecture on sarcoma. Hello!?! We have been doing this for 1 1/2 years now! We KNOW what sarcoma is! He finally admitted that he didn't do intraoperative chemo much and hadn't done it for years. What? I was getting really annoyed. We had just sat in his office for over two hours and we were both exhausted and he had given us nothing. Not one thing that he said was something we didn't already know. I told him we were expecting him to give us intraoperative chemo and he needed to talk to Dr. Sugarbaker and get back with us tomorrow. Then we left.

That was a very big downer on a very long day. Neither one of us had eaten all day long and we were so tired. We will be coming home as soon as we get a flight. The surgery is scheduled for Dec. 8th. Hopefully tomorrow we will know about the chemo part of the surgery. I am ready to end this Very. Long. Day.

Welcome to Boston!

2011-11-21T20:42:00.001-07:00

We had a very long day of travel but it went very well. We left early this morning and stopped at the Huntsman to pick up Trent's medical records and have our Last Will and Testament notarized. We got to the airport just before our flight boarded which worked out really well because we didn't have to wait for long. We sat next to the cutest little lady, Ruth Leibendorfer. She is from Boise and was heading out to Boston for Thanksgiving. We started talking and answering her questions about Trent. About two minutes into our conversation she started to cry a little and said, "I believe in miracles and I know there is a reason we met each other today." We agreed that there are not too many coincidences out there, all things happen for a reason and by design. She is a Baptist and said she was going to call her church tomorrow and put our names on their prayer roll. We had a wonderful conversation the entire flight and I love her! She is an amazing pianist/organist in Boise and I had a great time getting to know her. When we boarded for the next flight she boarded first and saved us seats on the front row so Trent could stretch his legs. What a sweetie! We just had to get a picture of our new friend.

Me, Ruth, and Trent after a great flight.

When we arrived in Boston, we were picked up by a stranger. What a welcome, unfamiliar-but kind of familiar-face! Our next door neighbor called his cousin, who lives in Boston, to come pick us up and take us to our hotel. Thank goodness he did because the streets here are like a bowl of spaghetti! When Lloyd Baird stepped out of the car to get us he was disappointed that he didn't even get to use the little sign he had made for us. He showed us a little bit of the city and where we would need to go before he dropped us off at our hotel. He promised to send "stalkers" to take care of us while we are here because he is leaving for Utah tomorrow. We are so grateful that he took the time to help out complete strangers and even more grateful for a kind and concerned neighbor back in Utah! Thank you Brother(s) Baird!

Trent and our chauffeur, Lloyd Baird.

The kids called us tonight and it was great to hear their voices. It has only been a few hours but we are already missing those cute kids! Jonathan asked me if I was in Grandpa's phone. When Trent spoke he asked if Trent was in there too. We were laughing and said we shrunk and got in Grandpa's phone. He said, "I will come in and find you!"

We are excited and anxious to talk to the doctors tomorrow. We have our mile long list of questions written and are ready for some answers! The hardest part about the whole thing is not knowing the answers. We feel really good about being in Boston and the path that we are now on. It seems that every setback we experience opens a new door which leads me to believe that they aren't really setbacks at all. It is simply a different road than we planned, guided perfectly by a loving Heavenly Father.

Plan? We Have a Plan? Kind Of.

2011-11-18T18:42:00.001-07:00

Well, we don't have a definite plan by any means but we have a totally different one evolving than we thought. I got a call from Dr. Carr today. All the docs in PA have been working very hard to make arrangements to treat Trent. The surgery and adjunct photo dynamic therapy is actually a clinical trial. They only allow a certain number of individuals to participate in a clinical trial each year. And of course, this one is full for this year. Dr. Freidberg and his team were working to have an extension given to include Trent, otherwise he would have to wait for surgery until January which nobody thought was a good idea. While they were getting him into the clinical trial they learned that the photo-sensitizing medicine that would be used has not been very effective on sarcomas. There is a new drug coming out that is supposed to be better....but it hasn't been approved yet and won't be available until January. Talk about a roadblock! So Dr. Freidberg called his mentor, Dr. David Sugarbaker at Brigham and Women's Hospital in Boston, MA. ( I have already done my homework on him and he seems pretty darn awesome. Dr. Freidberg's nurse said Dr. Sugarbaker is an "icon" in the thoracic world.) They discussed the options and Dr. Sugarbaker wants to see Trent on Tuesday. Yes, in three days! At this point no one knows anything for sure as far as treatment but Dr. Sugarbaker thinks that inter-operative chemotherapy is the best route. They will do the same surgery as was planned for PA but before closing up they will fill the chest cavity with chemotherapy drugs and seal him up. They will heat the chemo to about 108 degrees and let it "bake" Trent's insides for a couple of hours. Then they unseal him and drain the chemo out. It is a "one and done" procedure, meaning he only has to have it once. Having the inter-operative chemotherapy does not negate having the photo dynamic therapy if Trent needs it in the future, but hopefully this will be the end of cancer for us.

I am not sure what chemo they will use because we understood that all of the chemotherapy agents known to work for sarcoma do not work for Trent. I have no idea what this all means in terms of recovery. I have a million questions that I need to have ready for Dr. Sugarbaker.

However, the Brigham and Women's Hospital is rated #5 in the nation as far as cancer hospitals go. Dr. Freidberg already called #1 and #2 and found that they couldn't offer Trent anything different than he could get in Salt Lake. So I need to let the experts do their job and trust that there are things out there that I haven't heard about yet. We are very confident that Dr. Sugarbaker and the sarcoma oncology team there will be fantastic. We will fly out Monday and meet with the team on Tuesday. It is possible that Trent could be in surgery by Wednesday but we really don't know at this point. So we have to be prepared for anything.

It has been quite a day and my head is spinning. My emotions are running wild as are Trent's. We are planners. We like to make a plan and go for it. It kind of trips us up a little bit when the plan changes every day. Hopefully we can take it easy tonight and then hit the ground running tomorrow to make plans and prepare for the path ahead.

Another Big One

2011-11-17T09:17:00.001-07:00

Yesterday was stressful to say the least. We were waiting for a call from Dr. Carr to tell us the results of all the testing and about surgery. We got the first call at 11:30 am. Dr. Carr called to say that the fluid from the pleural effusion was negative. No cancer there. Yay! Then we waited. And waited. And waited some more. Finally at about 7:45 pm we got the second call. The results were all in. The little tumor they found on the diaphragm is cancer. I was not surprised by this. I was prepared for that part, but not for the rest. Because that little blip was cancer that changes the whole nature of the surgery. Now it is too big and complicated to do it here. We have to go to Philadelphia. They will remove most of Trent's left lung and his diaphragm. They will also remove the lining of the chest wall on the left side. Then they will do photo dynamic therapy that will destroy any cancer cells by burning 2mm deep inside his chest cavity. After that they will rebuild a diaphragm and put him all back together. It is still going to be a thoracotomy-meaning they will go in between his ribs on the left side. We will be in Philly for at least two weeks, probably three. Trent will be sensitive to all light, except fluorescent, for six weeks. He will have to wear long sleeves, hats, and sunglasses everywhere he goes. Any light that touches him will give him a third degree burn. Even indoors. After that he will most likely follow up with radiation therapy for a while.

Wow. That was pretty intense to listen to. Trent and I both were very calm and took in all the news. My mind was racing with questions though. Trent asked if Dr. Carr would come with us. He said he would do everything in his power to be there. He is pretty amazing. We have only met a few times but we really like him. He is the same age as Trent and I think that is part of the reason he is pushing so hard for him.

I was clarifying everything we had heard to make sure I understood correctly and I asked him if our goal was still cure. He said, "Absolutely. We would not do this extensive of a surgery if we did not anticipate a cure." He also said, "Surgery alone is not curative." Which is why we need the photo dynamic therapy and radiation.

This was pretty heavy. It was a lot of information and we were trying to take it all in. Trent's initial reaction was to get started now. Then he was mad. It seems like we have to do everything the hardest way possible. I told him it was his choice whether or not we accepted this treatment plan. We took a minute to digest everything and then we sat the kids down and told them. I was pretty much fine with everything except being away from our kids for so long during the holidays. That made me cry for a bit. I am pretty calm about the whole surgery though. The only thing I am really worried about is traveling with Trent post-operatively. That makes me just a bit nervous.

When I went to bed last night I knelt down to say my prayers and the tears came flooding out. My mind was full of all of these memories of a happy, healthy Trent. Oh how I wish he was healthy again! I can't imagine being so sick for as long as he has been. I just want him to feel good again! He sent me a text last night that I will save forever. He wrote, "I will never stop fighting! You have my word that I will do my part. With my love now & forever." I love him so much and will travel to the ends of the earth and back to make sure he is well again.

Recovery

2011-11-16T08:01:00.001-07:00

Trent is just barely starting to come around after last week's surgery. Friday night he was feeling pretty good. That was probably because all of the anesthesia had not worn off yet. Sleeping in the ICU is pretty much an oxymoron so he was really ready to come home Saturday. They had not let him eat anything all day Friday so he was starving. They finally told him he could eat so he ordered up a big omelet with hash browns and juice only to be told he was on a clear liquid diet. He was so disappointed when they brought him broth, apple juice, jello and tea. Surprisingly he still ate everything but the tea and asked for two glasses of orange juice!

Dr. Carr came in and said everything looked great and as soon as he took out the chest tube Trent could go home. That tube slipped right out and Trent didn't even wince! He was a lot more comfortable after that.

They told us we would be leaving by noon. At 11:45 we were both dressed and ready to go with everything packed up. The nurse took out Trent's IV and left the room. Right then Trent felt something wet on his leg. He looked down and was covered in blood. He started screaming, "I'm bleeding, I'm bleeding!" trying to get the nurse to come back. Never mind the fact that he was holding the nurse button in his hand. :) I jumped up, pressed the button, and grabbed some towels to apply pressure. I guess sometimes when an IV is removed your blood doesn't clot immediately. It probably looked like a lot more blood than it was, but it was everywhere. Trent had to change into scrubs and I washed out all of his clothes in the sink.

After that his oxygen saturation started wigging out. Normal is 90 and above, good is 93 and above. Trent kept dipping down and hanging out at a lovely 85, which meant he got to go home on oxygen.

We got home and set him up in the living room recliner. I didn't want him laying flat because of all the blood he is throwing up. I was afraid of him choking. That first night was a little scary. I slept upstairs on the couch to care for him. Zach was a little worried about him too so he slept with us. Jarom slept on the floor but I think he was just along for a good time. Zach was a trooper. Several times during the night Trent woke up coughing and choking. Zach was always right there trying to help out in anyway.

Sunday Trent's dad and brothers stopped by after having the "boys weekend" that was supposed to include Trent. What timing. :s They gave him a blessing of strength and determination to endure the treatments and whatever else lies ahead. The visit was really good for him but wore him out completely. He spent most of Monday sleeping.

Monday Dr. Carr's nurse called and said he needed to come down for a Pulmonary Function test, a chest xray, and a VQ scan (to measure airflow and blood flow in the lungs). I was a little nervous Trent wouldn't have the energy to do it. But again, Trent bounced back right in time. Tuesday morning we headed down for testing. We were able to slip into an earlier spot for the VQ test which got us home around 2:00. It was perfect. Trent rested the entire afternoon and was looking pretty good by bedtime. I finally consented to him sleeping in a bed and I think he did a little better last night.

Everything is weighing down pretty heavy right now and my mind has been very preoccupied. Last night I was driving home from the pharmacy and was flipping through the cd's in the car stereo. Once again, the Lord blessed me through music. When I finally stopped fiddling around, the song "Don't Give Up" came on. I have no idea who sings it. Maybe Josh Groban. I felt like it spoke right to me. I usually love to belt it out when that songs comes on but I found myself croaking along through my tears. It is uncanny how these things work! There is no way possible I could doubt the existence and nearness of a loving Heavenly Father who cares deeply for each of His children. Thank goodness for that knowledge because today is going to be a big one. We are waiting for word from Dr. Carr about the surgery and whether or not it is going to happen. We both feel very hopeful but a little anxious too. We have tried to discuss what our decision would be if we were denied the opportunity for surgery. It is a little too big to wrap my head around. We are praying like crazy it doesn't come to that.

Bronchoscopy VATS/Biopsy

2011-11-11T21:00:00.001-07:00

We got up this morning at 4:00 to be at the Huntsman by 6:00 for Trent's surgery. We weren't too nervous until Trent got all changed into his gown. Then the jitters started. We weren't really 100% sure what the procedure was going to be. Trent had a bronchoscopy a few weeks ago but was only slightly sedated. We thought that procedure might be similar to what was being done today. We were only a little bit right. They did take a look down his throat into his lungs with a video. Then they went in through his back and side to get a look on the outside of the lungs, within the chest cavity. They also removed all of the fluid on Trent's lungs to have that tested as well. While Dr. Carr was poking around in there he found an "implant" on Trent's diaphragm. This implant might be a cyst or a tumor. He plucked that off and sent it to pathology. He then looked at the entire diaphragm and found nothing out of the ordinary anywhere else.

The whole time I was waiting I was not nervous at all. But then when Dr. Carr finally came to get me I started shaking like a leaf. I had to keep telling myself to relax because I thought it was really obvious how much I was shaking. Dr. Carr showed me all the pictures he had taken and there was only one that he was concerned about-the one with the tumor on the diaphragm. He said that it might be a deal breaker for the surgery on the lung. Yikes! They may have to resect the area of the diaphragm where they removed the little tumor. They would patch it up with gor-tex, the material used to make coats. There is also a possibility they would have to remove Trent's entire diaphragm and rebuild him one with gor-tex. That was a lot of information to swallow. Dr. Carr said that the procedure went very well and Trent was doing fine. After he left me I took a few minutes to digest everything. There are some very important decisions hinging on what the pathology report shows.
By Tuesday all the pathology results should be in and by Wednesday we will know what they are and what Dr. Freidberg intends to do about it.

Trent has done very well today. He has only a small incision on his back and a chest tube that goes from his side clear up under his collarbone. It is very painful when he moves but that should all be gone when the tube is removed tomorrow morning. He was not allowed to ea tor drink anything at all today. That makes for a long day for someone who loves food as much as Trent does!

We were lucky enough to have two friends from Providence stop by today. We had such a great time talking to them both and spending time with them. It really helped the day go by faster. We talked a bit about our old neighborhood in Providence and how many people in that area have or have had cancer. It is astounding! I have always wondered if there was something there and today I learned of at least three more cases of cancer. It makes me wonder...

All in all Trent is doing great and is in good spirits. He will need a lot of rest for the next few days but should be doing almost everything he did before by Tuesday. So now the prayers begin for a good report from pathology!

Oh. My. Gosh.

2011-11-10T09:59:00.001-07:00

After waiting for what seemed like an eternity, we finally got a call from Dr. Carr this morning. The team in PA recommended surgery and possibly using photodynamic therapy. I had studied up on this and was familiar with it. Basically the patient receives a medicine the day before surgery. Cancer cells have a very high uptake of the medicine. Then during surgery they shine a red light on the lung and that activates the medicine inside the cancer cell and it causes cell death. It has not been proven to work in all cases, mostly because sarcoma is so rare that they don't get a lot of chance to try it. But they are having very good success with it in the mesothelioma patients. For about six weeks post surgery Trent would be VERY sensitive to light. An incandescent light bulb would give him a burn.

There is one small glitch though. Trent has a very, very small pleural effusion (fluid on the lung) that needs to be tested before we can move forward. If there is cancer in that fluid then his cancer is incurable. The surgery would be of no benefit and would only expose Trent to the risks associated with surgery. So we are heading down today to do pre-op and tomorrow Trent will have a camera put in his lung to take pictures and remove a small amount of the fluid to have it tested. He will be in the hospital until Saturday.

In the meantime, we begin the process of getting clearance for Dr. Freidburg to do surgery at the Huntsman. Yep, that's right! He has offered to come here to do the surgery because of the difficulty for us of doing the surgery in PA. We could bring Trent home after 7-10 days in the hospital and we would have our support system nearby. They all felt like that would be best for Trent and Dr. Freidburg said he would clear his schedule to come to Utah. I did NOT expect that to happen! Hopefully by next Wednesday we would have results from tomorrow's procedure and a decision from the administration regarding the "visiting professor". Then surgery would follow as soon as possible.

We are nervous about how much time this is all taking but would rather know all the ins and outs before Trent has surgery. We feel like this is a smart move and are focused on a good outcome. We will be fasting and praying that there is no cancer in that little bit of fluid! Just one more ~~little~~, ~~medium~~, HUGE obstacle to hurdle before the BIG DADDY SURGERY!

My Sentiments Exactly

2011-11-08T09:05:00.001-07:00

No News Is NOT Good News

2011-11-02T21:11:00.002-06:00

We waited anxiously all day (and all night) to hear what the doctors from Philadelphia would present to us as treatment options for Trent. I finally called our nurse, Katie, at 5:00 tonight and found out that there was a technical problem and the doctors could not view the scans that were sent properly so they did not discuss Trent's case. AARRGGHH!! It is not really any one's fault but I was a wee bit mad when I heard that. I had to keep swallowing while I was talking to Katie so I could control my voice. She was just as upset as I was. I asked what we were supposed to do, with the tumors growing unchecked and his cough getting worse every day. She didn't really have a good answer for me and I knew she wouldn't. I have to believe that this is part of the plan for Trent. That somehow, sometime, we are going to look back at this and say, "Thank goodness it worked out that way." Right now, I am not seeing it.

Another Twist on the Roller Coaster Ride

2011-11-01T09:56:00.003-06:00

We got a call last night from Katie, our nurse at Huntsman. She was concerned that we did not have all the information we needed to make a decision about surgery. Apparently the doctors in PA may have some new treatments beyond surgery that would benefit Trent. In our minds we were making a decision between surgery in SLC or surgery in PA. Looks like there is a little more on the table. I called Dr. Karwande this morning and postponed that surgery until the 11th to give us time to hear what the doctors in PA have to say. Whatever they were going to do would happen next Thursday too. So it looks like whatever happens, it will happen next Thursday.

When we got that call yesterday I was a little put off and it took me a few hours to figure out why. I think it was because our known plan was ripped out from under us. I was just happy to have a plan and be working toward it. But, I realize now that there is more information we have to have to make the best decision for Trent. Now we are anxiously awaiting the news from PA.

What a Roller Coaster!

2011-10-30T19:31:00.000-06:00

We have really been through some ups and downs this week! I guess that is the nature of the beast though. After the news we got on Monday we were gearing up for a trip back east for surgery. I was a little nervous about being out there alone with Trent. What if things didn't end well and I was left alone out there to take care of everything? What if our kids didn't get to see Trent one last time? If everything went great, how was the 2 1/2 day train ride home going to be? Ugh. 'What ifs' are a bummer.

We went to McKay Dee on Wednesday to get the cardiac MRI that the PA doctors wanted. No cancer in his heart. They didn't even have to use the contrast for the last half of the MRI because it was so clear that there was no cancer invading the heart. I am not sure if it is on the pericardium though, I have not read the final report yet.

Thursday we headed down to Huntsman bright and early to have a PET scan. As soon as I left Trent at radiology I went down the hall to take care of a couple of things when I got a call from Trent. I forgot to tell him to fast before the test! Oh snap! The girl who set up the appointment told me not to let him eat after midnight and I totally forgot! Stink! We had to go home and try again on Friday. That meant we got to be there for the grand opening of the new wing at Huntsman. I stood on the third floor and watched out the front windows while they did the whole ceremony. I had really mixed feelings about it. Yes, it is nice and beautiful but I did not want to see it. I had hoped we would be through with treatment by the time it opened.

Anyway, Trent had his scan done at 8:00 am and we left around 10:30 to get him some food when he was done. We had just gotten his precious #14 Bootlegger Club from Jimmy Johns when Trent got a call from the Radiology department at Huntsman. He had to redo the whole scan (which takes two hours) because they had a computer malfunction. Aack! Poor guy! He had just opened his sandwich to eat! So we headed right back up to start all over. Thankfully the results were awesome! No cancer anywhere except the left lung!

Earlier in the week we heard from Katie who said that Dr. Karwande had received Trent's scan from when he was in the ICU and he said he could do the surgery! That put a whole new set of options on the table for us. So after the scans on Friday we headed over to talk to Dr. Karwande. He had heard the results of the cardiac MRI and we told him the results of the PET scan. But before he even knew those he was fully confident he could do the surgery. He made us feel so good about everything. We kept bringing up worries about what would take place during the surgery and his reaction was, "Why are you worrying about that? That is my job. Let me worry about that and you worry about getting better." He told us that he would notch out each part of the lung that had cancer in it while preserving as much as he could. I asked him about the cancer possibly coming back again. He replied, "If it comes back, we will just do another surgery." I wondered how many times that could happen and he said that he had done surgery six times on one lung before. At least this is not our last shot. The doctor from earlier this week made us feel like Trent had one shot and one shot only. Dr. Karwande does not think that at all. While it is still very critical that he have surgery right away, we still have options for down the road.

Dr. Karwande does not think he will have to remove the entire lung but possibly the lower left lobe. He will make that determination during surgery. This time Trent will have a thoracotomy, meaning they will go in under his arm and go in between his ribs. It is a more painful surgery to recover from so we are a little apprehensive about that. The last surgery was no walk in the park. I told him we had seen a radiologist for possible treatment and he did not think that was a good idea. One thing he said was, "Surgery is benign." I loved the sound of that. If we can get rid of the cancer with surgery that is the best chance for survival. The tumors will be sent to the lab in Arizona again for molecular testing. Then, if Dr. Gouw deems it appropriate, we may do a little chemotherapy to make sure everything is gone for good. We set up a surgery date for Wednesday morning. That is the day Trent's case was supposed to be discussed in PA. We decided that we can change the surgery date if we need to but would feel it out over the weekend. We have been fasting and praying and we are both at peace. The logistics make more sense and we feel very confident in Dr. Karwande's abilities. We will be fasting and praying for Dr. Karwande, his surgical support team, and Trent on Wednesday. It will be another very big day for us to say the least. After a 5-7 day hospital stay it will take about 6-8 weeks to fully recover from this surgery. Hopefully we will have Trent feeling pretty good by Christmas!

Tornado

2011-10-25T14:54:00.000-06:00

Yesterday was, well, a tornado. A whirlwind of new information that threatened to sweep us off our feet. We are still trying to process it all.

We met with Dr. Whipple at McKay-Dee hospital yesterday. He is the radiation doctor we were sent to by Dr. Gouw. After meeting with him, radiation sounded like a walk in the park compared to what Trent has been through. He said that when you radiate the lungs the affect is permanent and that he doesn't radiate sarcomas in the lungs very often. They usually are not super responsive to radiation-meaning they don't just dissolve into nothing like lung cancers do.

Then we headed down to the Huntsman to meet with Dr. Gouw. First we met with Amy, the social worker to see about trying an antidepressant for Trent. It is very common for cancer patients to need some stabilizing medication. I really think Trent is doing very well-all things considered. It is just that crazy chemo that made him go insane. We might try an antidepressant for awhile and see if it helps any.

When we saw Katie she was all excited saying they had something for us. Dr. Gouw told us that Trent's case had been discussed in the Monday morning sarcoma meeting and he thought that Trent should go right to surgery. The Hunstman has recently invited a highly trained cardiothoracic surgeon from Philadelphia to join their team. Dr. Gouw explained again that chemo was not our best option now and we might revisit it in the future if we have to but then it would only be a clinical trial. All the the mainstream chemotherapy drugs no longer work for Trent.

Then we met the surgeon. Dr. Carr sat down and told us a whole crazy amount of information that kind of blew us away. First, there is no cancer in Trent's right lung. Yeah! Second, the cancer in his left lung is pretty ugly and possibly involves the pericardium (we knew that) and the nerve that controls your diaphragm. Oh. Okay...Third, he does not have the skills or expertise to take Trent's case. He believes there is only one person in the world that can perform surgery on Trent and that is Dr. Joseph Freidberg, in Philadelphia. Wow. I am sure that Trent and I both had our jaws on the floor at this point. That is NOT what we were expecting to hear. He said that if Trent was a 60 year old man no doctor in the world would perform this surgery, but because he is 38 and has five kids who need him, it is worth a shot. Trent could lose as little as the tumors, or as much as an entire lung. There are a couple more tests that have to be done first, a cardiac MRI and a PET scan. Then those results will be sent to Dr. Freidberg and we could be flying to PA as soon as next week. (I am shaking while I am typing all of this because it is still so overwhelming!) We may be there as long as a month if all goes well. We are very anxious to hear from Dr. Freidberg in a couple of days.

We talked a bit more with Dr. Carr and he explained some of the things that might happen. He said that Trent would never run again. Whatever. Dr. Jones also told Trent that he would likely have a significant limp! I am amazed at how much Trent has been able to do that he was told he would never do. So, I am very optimistic about what his life would be like after this surgery. I said to Dr. Carr , "If we do this surgery, we are not looking for an extra six months, or year or two..." He immediately said, "No. If we do this surgery, the goal is a CURE." Oh my how beautiful that sounded! We have no interest in going through something this big to "prolong life". Our goal remains the same as always. CURE.

Of course, all of these possibilities are dependant on the results of the testing in the next few days so we are trying not to get too freaked out, nervous, or excited. Until then, we are praying like crazy! (When has that ever NOT been the case?) Thank you, thank you, thank you, for all the prayers on our behalf! We are overwhelmed and grateful.

The Ugly Just Got Uglier

2011-10-21T12:32:00.001-06:00

Sunday night was surely a night to remember-or forget. At about 10:00pm Trent started having some pretty severe chest pains. I tried to medicate him and get it to go away but it was not letting up. I called the Huntsman and spoke to the on call physician. She suggested that I get Trent down to U of U ER. As we were getting ready to go, Trent had an explosion of pain and his condition worsened dramatically. I decided to drop everything and get him the BC ER. I really didn't think he could make it even to McKay Dee.

We ended up being taken care of by two of my little brother's friends, Gil Hollingsworth and Cory Kaminska (who also happens to be my brother-in-law's nephew.) Small world.

Anyway, I thought he may have had a pulmonary embolism because he had been coughing up blood for the past couple of weeks. We had called our nurse Katie, and discussed the problem but she thought it could wait until the next scan. So when we got to the ER they immediately gave Trent some Dilaudid to relieve the intense pain in his chest. They monitored his heart and did an xray while they were trying to get him stable enough to transport him to U of U.

This picture was obviously taken AFTER the pain meds kicked in. The xrays did not tell us too much but there was not an obvious blockage so they decided to put him in an ambulance and send him to SLC. By this time it was about 2 am.

This is Trent being loaded up for his first ride in an ambulance.

Trent was a little disappointed that they did not run the lights and sirens the whole way down to U of U. They did go pretty fast though. Luckily there are not too many people on the road in the wee hours of the morning!

I did not ride with him but ran home to gather enough things to stay a couple of days in SLC. I had to stop to get gas and some 5 hour energy drinks. I was not sure I would be able to stay awake the whole way down. The energy drinks really work! I only drank 1/2 a bottle but it perked me right up! As I was driving I was pretty calm. I was praying for reassurance and right at that moment I realized that the song, "I am a Child of God" was playing on my car stereo. Of course the weeping began then, and the danger became 'not seeing the road', instead of 'falling asleep'.

Surprisingly I got to the hospital not too long after Trent did. I thought I was much farther behind him than that. They immediately began monitoring his heart, did an EKG, put him on oxygen, and the works. My real fear was the pulmonary embolism and they didn't seem to be actively pursuing that possibility. A few hours later they had an ultrasound of Trent's legs done to see if he was clotting there. All was clear on that test. Then we waited. And waited. And waited. We were the first ones to be in that room at the new ICU and I guess the staff was still not quite used to how to run this new ICU because everything was SO SLOW!

Does this look like a guy who needs the ICU? Everyone kept saying how great he was doing. Especially since the guy in the next room had just had his last rites and his whole family was coming and going all day. That was sobering.

We were starting to figure out that the MICU doc had thought he had transferred Trent to Pulmonary to be treated but the word had not been spread so Pulmonary was still waiting-and they did not have a bed for Trent. We kept asking our nurses when something was going to happen and they, of course, knew nothing. We knew Trent needed an Echocardiogram, AngioCT and a bronchoscopy. Finally at around 5:00 pm everyone wanted to do their tests all at the same time. He had the echo and it came back clear. No heart damage. Then they did the bronchoscopy. Trent wanted to stay awake for it so they gave him the lowest dose of sedative. He sucked it up like a sponge. It didn't even phase him. They kept giving him more and more Fentanyl and Versed to relax him. After each dose they would try to do the scope. I watched the whole thing. It was pretty gruesome. Trent was gagging and choking, it was awful. Finally they pretty much knocked him out and did the scope. Dr. Boltrax, the ICU dr., promised to take a bunch of pictures for Trent to see. It was fascinating watching the scope of Trent's lungs. I kept expecting to see a big ugly tumor but no such luck. Everything looked pretty good. They were unable to locate the source of the bleeding though so the scope didn't end up being very helpful. The worst part about it was that they had been expecting to the scope all day and therefore wouldn't let Trent eat anything. He had not eaten since Sunday at 2:00 pm and now it was 6:30 pm on Monday. He was famished! They said they would get food ordered for him right away. Finally at 8:00 pm I went to the cafeteria and got a Reuben sandwich to share with him. As soon as he ate that, his dinner came. Whatever.

This is Trent trying to relax after the bronchoscopy. It was pretty intense for awhile.

The next day we waited forever for the AngioCT. They finally did that around 1:00 in the afternoon. We learned that there was no pulmonary embolism but that the largest tumor that had been shrinking, was now mutated and growing rapidly. Not great. The other tumors are growing as well and there are more of them. Also not great. We waited for a few more hours for someone from oncology to come see us. The room was freezing and we were both really ready to go home.

This is Trent trying to stay warm in that freezing room! Ugh! Why don't they at least make it comfortable there?

Finally Dr. Jones from the Huntsman came to see us. While he was there the pulmonary doctors came back to say that they wanted Trent to stay for one more night so they could observe him. He stood right up and said, "Absolutely not. I will be going home today." Dr. Jones agreed that it was not necessary for Trent to stay. The worry is that if Trent coughs up blood again, and it gets worse, he doesn't have much time to get help. Scary.

Dr. Jones told us what we already knew about the tumors. He said that "one of our tools was broken". Meaning mainstream chemo does not work for us anymore. We are going to look into radiation and possibly a clinical trial. We already have appointments set up for Monday.

I am not going to lie. The last couple of days have been VERY hard. We have cried buckets of tears. Just when I think I am dry I cry more. I feel like we are being painted into a corner and our options are getting fewer and less reliable. But, we do still have options. And we still have our faith. Right now that is what I am clinging to the most.

While we were at the U of U we were visited by a social worker who was concerned about our support group. She asked me specifically who I turn to. Trent is always the one I turn to. I have never been a real "girlfriend" type of girl. When I need to talk-Trent listens to me. But her question left me wondering who else I had to lean on. Within 24 hours I got phone calls from two very good friends who both said they could not stop thinking about me and felt like they should call. It is very humbling to know how much my Heavenly Father loves me and is waiting at every turn to answer a prayer. I am in awe. However humbling that is, I am still a little greedy. I really need the miracle we have been praying for, and I need it really quick!

The Good, the Bad, and the Ugly

2011-10-13T10:44:00.000-06:00

Chemo stinks, bad. This type of chemo that Trent is on has been better to him lately, at least in the nausea category. He hasn't really thrown up and is still able to eat pretty well. The part that is the worst is the CRAZIES! Every round by about the fourth day Trent cries a lot, for about two days. Then the anger sets in...and it all goes downhill really fast after that. I usually try to position myself as the buffer between Trent and the world at that point. The buffer doesn't block it all though. The other day Zach told me how much he hates chemo. He said, "I know not to go by Dad because he will yell at me for any little thing. At least when he was sick I could still be around him." Ugh. He's right. All the kids try to steer clear when he is like this but it's almost impossible not to catch his wrath for something. So we are waiting out the storm...hoping for our happy Dad to come back soon.

We did have a little miracle earlier this week. Our son, Zach turned twelve last week and was scheduled to receive the Aaronic priesthood on Sunday. Unfortunately that is usually a terrible day for Trent in his cycle. Trent got chemo last Wednesday-Friday and his neulasta shot on Saturday. Neulasta always hits him really hard within about one hour. We really debated trying to wait on the shot until after church but that would have put him outside the window of the most effectiveness for the shot. I wanted to wait and do the ordination the next week but Zach was so excited!

I gave Trent the shot on Saturday afternoon and we fasted and prayed that he would feel well long enough to give Zach the priesthood. That is when our miracle started. Trent felt pretty good, albeit not great, but pretty good all day Saturday. Sunday came and he was still doing pretty good. He came to Sunday School and was looking pretty tired and in pain. I ran home to get him some oxycodone to help him last a little longer. During sacrament meeting he seemed to be alright. Zach bore a sweet little testimony about the importance of the priesthood and how many times he had seen in work for his Dad and how excited he was to receive the priesthood that day. Dang kid, always makes me cry!

Trent was able to give Zach the priesthood that day. That was a major milestone for us. When Trent was first diagnosed, one of the things that worried him the most was that he would not live to give Zach the priesthood. I admit, it worried me too. I had already made a plan in my head for that. But then I listened to blessing after blessing given to Trent that promised him he would "live to raise his children to maturity" and my mind was put at ease. We are seeing the realization of those blessings with every milestone our children reach.

Round Eighteen!

2011-10-07T19:29:00.000-06:00

Yesterday marked the beginning of round eighteen. That sounds awful! I can hardly believe that we have done this so many times. Hopefully this is our last...before surgery.

After we all got over the flu Trent had about one week of feeling pretty good. We took advantage of that and headed up to Bear Lake for the weekend. Some friends of our generously offered their cottage for our use and we had a blast! Zach and Trent got to go to the Priesthood session of General Conference together for the first time. That was pretty exciting for them both. We took a bunch of family pictures, played games, watched conference, and made great food. Jonathan kept walking around saying, "I LOVE our new house Mom!" Poor, kid. He has no idea of 'our' home. Ever since he can remember we have been living with my parents. It has been wonderful but we are missing having our own home. Lately that has been difficult for us. We are ready to move on and be done with this whole mess of cancer. So, that is why I pray for patience!

Trent is always joking with the nurses and volunteers. There is a snack cart that goes through all the time and the volunteers offer us goodies. It is always the same stuff and one day Trent asked the volunteer for something he knew she did not have. We all laughed about it but about half an hour later she showed up with his request, peanut butter M&Ms. She had to go out to the vending machine to get them for him! She even brought him two bags! The fact that she would do that for him made me tear up a little. Trent jumped up and gave her a hug while I tried to wipe my tears away before anyone saw that I was crying over M&Ms! Then yesterday, while we listened to ABBA-per music request from Trent, he was joking about needing Mrs. Fields cookies on the snack cart. The nurses all chimed in and laughed about how great that would be. This morning when Debbie brought Trent his "pre-meds" he got quite a suprise. Not Mrs. Fields cookies but maybe even better....doughnuts! Kean, yesterday's nurse, had tuned into his little joke about needing cookies on the snack cart and sent over doughnuts for his snacking pleasure. We really love the nurses here. They always go out of their way to make this whole experience a little easier to handle.

Debbie and Kean hand feeding Trent his "pre-meds".

When we came down on Wednesday I had a couple of errands to run while Trent got his infusion. As I was driving I was listening to my favorite talk on cd, yep, you guessed it, "The Fourth Watch" by S. Michael Wilcox. I have written about this talk before, but I LOVE IT! Everytime I listen something else jumps out at me and since I can't read my scriptures while I drive it is great to listen to talks about them. This time I was listening to Bro. Wilcox talk about a time when Jesus' disciples were rowing on the stormy and turbulent sea. They had rowed about 6500 yards and had stuggled greatly the whole time against the wind and waves. From the shore, on a hill aboe the sea, Jesus watched. He watched them for quite awhile, struggling and straining to fight through the storm. They never left His sight and He knew exactly how they were struggling. Finally, He went to them and calmed the storm. As I listened, I felt a warmth surge through my whole body and make my fingertips tingle. I KNOW we have been watched. We have not been left to struggle through the storm alone. We have had so much help along the way and our storm has been calmed repeatedly. I sometimes think that the calming of our big storm will be as dramatic as when Christ calmed the sea for his disciples. That, He will eradicate Trent's cancer and it will all be over. But in reality, He calms the storm daily. The steady peace and support we have been given, the answers to prayer, the engulfing warmth and tingly fingertips are evidence everyday that we are being watched.

Flu Schmu

2011-09-22T11:12:00.001-06:00

This week has pretty much been a bust so far. Trent started going downhill Friday afternoon. Of course he tanked hard after the Neulasta shot on Saturday evening. He wanted to delay getting the shot just a bit because his dad and two nephews were here to visit. He thought he might make it to church but wasn't able to get out of bed. Monday morning Jarom woke up feeling a little queasy as did myself and both my parents. By 10:00 Jarom had puked in the hall at school and was back home with us. Over the course of the next two days everyone except Zach had a bout with the stomach flu.

Trent got a double whammy. Chemo and the stomach flu are not friends and they really ganged up on Trent. Last night I suggested to Trent that he needed IV fluids. He was insistent that he did not. However, as we were talking about it he was vomiting for the umpteenth time that day. In his mind needing IV fluid meant that he was not able to heal by himself. I think he saw it as a setback because he has done so well for so long. I marched myself upstairs to call Katie, all the while hearing Trent begging me to not call her. Too bad. This one was my call. Katie agreed that IV fluids would be a good thing for him so she called in the orders for the Home Health nurse to come over and access Trent's port. After just one liter of fluid he looked so much better! We hung one more liter last night to perk him up a little more. However, by the time he went to bed he was in a significant amount of pain. We got him all drugged up and I think he had a little better night than he has been having. He was probably awake a bit with pain but at least he wasn't up to the bathroom a million times.

I got up this morning and hung another liter of fluid for him. Hopefully his IV breakfast will help him off to a good day! Maybe by the weekend we will have our happy, fun-loving Trent back for a few days...maybe!

2011-09-14T21:09:00.001-06:00

We left this morning around 6:45 for the scan. Immediately after I sat in the car I thought I was going to throw up. Shortly afterward Trent DID throw up. What a pair we were! Just a great big ball of nerves! Trent had his scan at 8:00 and then we waited. I was pretty calm by then but Trent has been pretty nervous for the last few days. We finally met with the doctors at 11:45. Grace came in not showing the thumbs up sign-not good. She sat down to pull up the scan and started explaining that the larger tumor had shrunk. I wonder why she referred to it as "the larger tumor". We only knew about one tumor. Again, not good. We learned today that the tumor that was about 6.5 cm x 5.2 cm had shrunk to 3.8 cm x 3.8 cm. Great news! We also learned there are three other tumors. More of the 'not good' news. Apparently those tumors were on the last scan but were either not seen or never mentioned to us. Two of the three tumors have more than doubled in size, however, they are very small, only about 5mm.

So the plan is to continue with two more rounds of chemotherapy and then scan again. The scan from today will be sent to Dr. Karwande, the surgeon, so he will be kept abreast of the situation. The thought is to continue to shrink the larger tumor as much as we can to preserve as much of Trent's lung as possible. The smaller tumors are not a problem surgically and can be easily removed. The problem is that they are obviously not responding to the chemotherapy. Hopefully that problem will be solved with some radiation after surgery.

The feeling we were getting from the docs was really neutral-neither good nor bad. I finally said, "Hey, this is a positive thing right?!" We HAVE to keep up the positive attitude! It is a minor setback but it does not change our outcome. We have to fight so hard for every small victory. Thankfully Trent has A LOT of FIGHT! He has been feeling amazing and his labs prove it. When I looked at his lab results today they looked better than most healthy people's labs would be! Katie even said that they would not draw labs during the course of the next two rounds because the labs have been rock solid. That has to be good!

We ran into Shea, a friend who also has cancer, and she is doing great! She looked so good and her attitude is amazing. That was so good for me to see. I worry so much about all the friends we have made that are fighting this ugly battle. It seems like there is way more bad news than good news.

Overall we are encouraged by the news today. We still have options. Trent has lost more tumor mass than he gained. There are people who survive cancer...and we are going to do everything in our power to make sure that Trent is one of those people!

"Mo" Waiting!

2011-09-12T18:31:00.003-06:00

The last week has not been too bad. We were totally geared up for a horrible round 16 and it only turned out to be somewhat horrible. After all the anger dissapated Trent was back to his usual jovial self. What a welcome relief! Each day Trent has gotten better and better. Yesterday he was singing and dancing while we were all getting ready for church. He kept yelling that he felt so good. It was so fun to see him like that! I giggled all day about it.

Trent has started to gain back a bunch of the muscle mass that he lost. He has been flexing his "guns" and wanting me to feel them. His forearms look/feel like they used to, minus a little hair. :)

He also got the most GARGANTUAN cold sore on his upper lip this week. It was so swollen! I could hardly look at him without laughing. He looked just like "Mo" on the Simpsons. Hilarious! I am sure he did not think it was that funny though. He pretty much lived on Otterpops to bring down the swelling. I happened to mention it to Grace and she had me start him on Acyclovir. That seemed to take the punch out of it but he still has a giant scab.

He told me last night that he can still feel the tumor in his lung. Not great to hear but it doesn't seem to bother him like it did before so that has to be a good sign. We are getting anxious for the scan on Wednesday. It is a big one for us. I spent some time this afternoon looking for clinical trials that he could possibly qualify for if he needs to. I used to have the idea in my head that a clinical trial was a death sentence, a last ditch effort. Well, it is a last ditch effort but the results seem to be way better than a death sentence. As I was looking through all the clinical trials many of them required the tumor to be non-resectable. That actually made me feel good because the last thing we heard was that Dr. Karwande was confident he could remove the tumor again, despite the size. Usually researching on the internet is a no-no for me but this time it made me feel pretty good about our chances.

We are looking forward to the next step with great optimism. We will again be fasting on Wednesday, so if anyone would like to join us and add your prayers to ours we would love it! Crossing our fingers for awesome news....

Effects of Round 16

2011-09-01T12:32:00.001-06:00

So far Trent has not been nearly as sick as he was last round. He has felt crappy, tired, and experienced some terrible pain but the nausea and diahrrea have not been a big problem this time. What is really kicking us this time is the anger. The chemo makes him hyper sensitive to his emotions and he always has a couple of days of being really weepy and depressed. He talks about what I should do with the kids when he is gone and so forth. At first that really bugged me but I have come to know that is it just part of chemo. I don't let it bother me like I did before. After the weepy comes the anger. Trent is bugged by just about everything and he gets to mad! We talked to the docs about this last time and they confirmed it is a definite side effect of the chemo. I knew that already. I had researched the drugs and I know that is not how Trent is. It shocked me the first few times it happened but now I just try to be the buffer between Trent and anyone else who might catch his wrath. Only a few more days and hopefully it will all pass.

As bad as cancer is, we continue to be so blessed. The past few weeks I have had a hard time. I am in some sort of rut and I am working hard to get out of it but it is so difficult. Over and over I have seen and felt the Lord reminding me that He is there. Friends stop by out of the blue, packages arrive from friends and strangers, family members do some pretty amazing things for us, etc. I know all of these people are little instruments in the Lord's hands being used to keep us going. It is very overwhelming to be the recipients of so many acts of kindness and love. Our race is not done and we have a long way to go. Every little bit of encouragement helps us so much. So to all of our amazing support system, a huge THANK YOU goes out to each of you! We truly could not do this alone, it would be way too much to handle. We will see this through and be better people for it. I might end up in the looney bin but at least I will know we are loved! :)

Round 16

2011-08-26T18:42:00.000-06:00

We just finished getting all the drugs for Round 16. I can't believe we have done this sixteen times. The last five rounds are all starting to blur together. It is getting harder and harder to remember all the details, and side effects of the different drugs. I am so glad I have kept this blog! I find myself going back to different rounds to see how the drugs treated him so I know what to expect and remember the little tricks we learned to combat the side effects.

It is amazing to me to see the difference in Trent from day to day. For example:

This picture was taken Tuesday.

Trent decided he needed eyebrows so he grabbed my eyeliner and fixed himself up right. He didn't say anything about it and called all the kids in for a chat. One by one they noticed his eyebrows and started giggling. Pretty funny.

Wednesday, day 1 of chemo, Trent's legs were pretty puffy so they gave him Lasix. Thank goodness we were seated right next to the bathroom because he was in there every few minutes. One time he came back around the corner in this silly grandma wig. Everyone in the infusion room got a pretty good laugh and Cyd and Brent came running to get a picture with him. Cyd grabbed this weirdo african american wig with red highlights. Quite a trio!

As we were leaving that day Trent found this strip of hair, not really even a wig. We couldn't decide if it was a comb-over or a mohawk. Trent chose the mohawk. :)

Out of nowhere Brent appeared-ready for another picture! We all had a pretty good laugh about that!

Thursday brought more Lasix and a visit from Trisha and Dave. Trent was still doing pretty good and we enjoyed laughing with them while Trent got poisoned.

By Friday the swelling had still not gone down so Trent got Lasix again. He will continue on Lasix for one week at home. When we left the hospital Trent was still doing pretty good but by the time we got home he looked like this.

This isn't the worst. As soon as Trent gets the Neulasta shot tomorrow he will go downhill pretty fast. We are gearing up for an awful week, hopefully not longer than that! :)

Oh What a Difference a Day Makes!

2011-08-16T13:09:00.001-06:00

Saturday night as I closed my eyes to sleep the tears kept slipping out. I couldn't stop them and I didn't have the energy to try so I let my pillow get all soggy and wet. I was so sick and tired of Trent being sick and tired! Heavenly Father must have known that Trent and I both had really had it. The next morning Trent seemed a little better, a little iffy, but better. I went to church and Trent made it for Sacrament meeting. By the time we were done with church Trent was much better. Thank goodness for Tender Mercies! He said, "I'm back, baby, I'm back!" That has become our own little "George Castanza" joke. Trent really is back! We are going to play as hard as we can for the next week or so until we have to start it all again. We can't let one moment of feeling good slip by, wasted, when we know there are so many crappy moments to come.

To see the sparkle in Trent's eyes again is like a magic eraser that makes all the difficult times melt away. When he is really sick I can feel myself retreat from him and the situation. I know I shouldn't but it is so hard to watch and it is "safer" for me to act like I am not affected by it. I almost become mechanical. I go into "Nurse" mode and kinda of turn off the "Wife" part. I figure I should be able to fix it all with his drugs-(only for him, not me ;)! ) It is frustrating when it doesn't work like that. So, when the sparkle returns, that is my drug!

The tender mercies in our lives are the things that get us through, small reminders that Heavenly Father IS mindful of me and my wet pillow.

Round 15 is NOT so Great!

2011-08-11T16:56:00.000-06:00

Round 15 has beaten Trent up pretty good. He has been in bed since about Friday. He did get up for church but probably shouldn't have. He has had nausea, diarrhea, unbearable pain, mouthsores, anger, night sweats, sleeplessness, fatigue, horrible dreams, etc. He has really gone the rounds with this one. Right now we are waiting to hear if he will be put on IV fluids tonight. I don't think either one of us would mind if he was. He can hardly eat because his mouth is full of sores and nothing sounds good to him. He has been on Diflucan for a couple of days now to combat the mouthsores.

The thought of possibly four more rounds is awful. We are both getting very tired of this whole mess. However, we are hanging on, by a thread, but hanging on nonetheless.

Round Fifteen-Ugh

2011-08-04T17:53:00.002-06:00

Yesterday Trent started round 15. It also happened to be our 16th anniversary. This is the second anniversary we have "celebrated" at the Huntsman. Not something I would like to make a habit of. We each got a really cool gift. Trent got $$$$ worth of ~~poison~~ chemo, and I got Invisalign. How romantic, I know.

When we were just about to start the chemo they informed us that there is a nationwide shortage of Doxrubicin, which is one of the drugs Trent is on. In its place, they gave him Epirubicin. It is a similar drug in the same drug family but is not commonly used here at Huntsman. Because Trent does not have a tumor in his brain they decided Epirubicin was a good substitute because it does not cross the brain barrier as Doxrubicin does. It also takes only 1/2 hour to get instead of three hours. BONUS! I, of course, needed all the details and asked for a drug fact sheet on Epirubicin. After I read it I gave it to Trent while I talked to the nurse about it. Trent interrupted us and said, "Hey! We're good! It says here that Epirubicin kills cancer cells so no worries!" Very funny, Trent...I still need all the details!

While I was gone getting my teeth done, Trent talked to Dr. Gouw about the treatment plan. It changes every time we are here! Now we are for sure doing another round of chemo after this (Round 16) and then a scan. If the tumor is responding then we could do as many as three more rounds before surgery. Trent told me that when we changed chemo the last time the number 17 popped into his head. So maybe that will be the lucky number for rounds of chemo. Who knows. The plan will probably change with the next round of chemo.

Lately I am feeling like I would just really like to be done with this already. It has been a very long time and I am ready to move on. In many ways our lives are on hold, but our children keep growing. We have no house, no job, and no certain future. By the time we have those things our kids will be moving out of the house. I have really been praying for patience to endure this trial. Then today on the way to Jonathan's post-op appointment I was listening to a talk on CD by S. Michael Wilcox called "The Fourth Watch". The whole jist of the talk is that our God is a Fourth Watch God. He doesn't race to the rescue with the answer we want the very first time we ask. He comes in the fourth watch, after we have been humbled and have endured, and have learned from whatever it is we are going through. The exception, of course, is in forgiveness. In that instance He is a first watch God, willing to forgive the second we ask for it, however many times that is.

In part of his talk, Bro. Wilcox is recounting the story of the Brother of Jared and the eight barges he built under direction from the Lord. (Book of Mormon, Ether 2) The vessels were built "tight like a dish" so no water or wind could get in them as they crossed the stormy sea. There is more to the story but the part that hit me like a ton of bricks was the fact that the Lord helped the brother of Jared prepare the vessels tight like a dish to withstand the storms that would surely come. The Lord could have simply stilled the storms, but instead He prepared the vessels to withstand the storm. Bro. Wilcox goes on to say that when it seems we are in the fourth watch and the Lord still has not come, it is because He has prepared us beforehand and made our vessels tight like a dish to withstand the storms in our lives. If we had not been prepared, he would surely have stilled the storm in the first watch.

I have listened to this talk several times and gained different things from it each time, but this time I drove down the road struggling to see through my tears wondering how tight is our vessel? It must be pretty tight because it seems like we are in the sixth or seventh watch by now. I can honestly say I KNOW we were prepared for this trial. I can look back at our lives and understand why certain things happened to us at certain times. It was to prepare us for cancer. I don't even dare imagine what cancer is preparing us for. Could there be something worse waiting for us? Or is our suffering meant to give us more compassion for others and to prepare us to be instruments in the Lord's hands? I certainly hope it is the latter!

Great Week!

2011-07-28T16:54:00.000-06:00

This has been such a good week for Trent! Friday he began feeling much better so we decided to take advantage of it. We took all the kids and drove to the City of Rocks in Idaho on Saturday. It was so much fun! We love a good road trip and we needed to pull our kids around us with nobody else and just enjoy each other. We got out and climbed all over the rocks and had a great time. Trent was okay but admitted that it is difficult for him to keep his balance on all the uneven surfaces. He watched from the burb for most of it.

Zach, Mallory, Trent, Jarom, Jonathan, Megan

Sunday night we lit a bunch of fireworks. Trent bought a huge box that I thought was way too many fireworks. When I mentioned that Trent said, "Holly, I missed the 4th of July this year and last, I missed the 24th last year too. So this year I have to make up for it!" Fine. Good point. Because of that we had a dandy little fireworks show that lasted quite awhile. Trent was having a great time and kept giggling like a little boy.

Monday morning we took the kids over to Zion Park (right next to our house) and launched the model rockets Trent and Zach built for Zach's merit badge. It was way cooler than I thought it would be and we had a great time. All the kids took a turn pressing the launch button.

Zach and Trent with their model rockets.

Last night we headed to Pack Meeting and Yates Lake in Honeyville. It was such a nice park and Trent loved it. He kept saying he felt like himself again. It was so nice.

I guess if this is how this chemo cocktail is going to treat him, we can take it. One horrible, awful, yucky week is alright if you know you get two good ones after that. Of course, I am not the one who has to do it either. We just have to take advantage of every good minute we get and not put things off until tomorrow. That's probably a good way to live life all the time. You just can't let life pass you by, even if you are healthy.

Feeling good and loving it!

Relief

2011-07-21T14:23:00.001-06:00

We just heard some great news. Trent does not have cancer in his brain! Now for the background. The last few days Trent has had a lot of numbness in his legs and arms. Not a good sign. I called Katie, our nurse, on Tuesday and told her about it. I had already done my research and knew that numbness was a side effect of Temodar, one of the chemo drugs Trent is on. It was listed as one of the more severe side effects that a doctor should be notified about which is why I called Katie. When I told her about it she was concerned and wanted to talk to Dr. Gouw. She called yesterday and said they felt that Trent should have a brain scan ASAP. Of course they would be looking for tumors in his brain. Not a pretty thought. We went in this morning and had the brain scan. Just a few minutes ago we got the call we had been praying for. Negative results. Yeah! It sounds weird but negative is good in this case. There is no cancer in Trent's brain so we are going to continue to monitor the side effects of the drugs-assuming that is what is causing the numbness.

Trent's case was also discussed in the sarcoma conference on Monday at Huntsman. All the different types of oncologists; radiation, chemo, surgeons, agreed that Trent needs surgery on his lungs again regardless of what the chemo does to his tumor. We are still hoping it will shrink it but if it doesn't the thinking is that because it is only one tumor it should be removed and then follow up with a couple more rounds of chemo.
That is not a fun thought because this round has not been too good. Surgery is not exciting either but we will do what we have to do to kick this thing once and for all!

Blessings of Adversity

2011-07-18T10:05:00.004-06:00

Trent was asked to speak about a month ago in Stake Priesthood Mtg that was yesterday. He had been preparing for quite a while and was excited to have the opportunity. Then we found out about the new chemo plan and it didn't fit really well with the meeting. He was scheduled to have his Neulasta shot 24-48 hours after the completion of chemo, so we waited until just after he finished his talk to give it to him because it always hits him really hard. He spoke yesterday at 7:30 am and I gave the shot at about 8:45 am (hour 46 post chemo). Almost immediately afterward he tanked. He did make it to church but I had to come home to get him pain meds and make him a shake. We figured everyone would excuse the 32 oz mug he sipped on through Sunday School. :) He slept all the way through sacrament and crashed as soon as we got home. He is really having some bad pain right now and is just plain feeling horrible. I hope this round at least gives him a couple of good weeks before we do it all over again. It is so frustrating for both of us because he was doing so well and then he bottoms out like this. Ugh. The thought of possibly three more rounds is depressing. However, there are greater powers at work here and I know that, so we pray continually for patience.

Trent wanted to share the talk he gave yesterday on the Blessings of Adversity. It pretty much sums up how he has viewed this whole experience. I really wish I could have been there to hear it. I thought I might have to give it for him because he was so sick. He took Zach instead, just in case Zach needed to read it for him. We heard from many people yesterday how powerful the meeting was and how inspirational Trent's message was. I hope you enjoy it as much as they did!

The Blessings of Adversity

I consider it a great privilege to have this opportunity to be able to speak with you about the tremendous blessings that are abundantly given when adversity befalls each of us. Waiting upon God with great patience and having an unbending faith that He will hear our pleas, answer our prayers, provide comfort and hope are essential components of the Plan of Salvation that bind us eternally together. I testify that our Heavenly Father is acutely aware of our needs and that He is in absolute control. If we are able to step away from the challenges we face for a moment, there is ample evidence of divine intervention, where God has placed both people and circumstances in our path to help strengthen us individually and as families in times of unimaginable adversity. He knows exactly what we will need to overcome those trials. The Plan of Salvation that encompasses every aspect of this mortal existence is there for each of us to benefit from in times of calm and during the storms of our lives.

In the New Testament (JAMES 1:2-3) the apostle James counsels “My brethren, count it all joy when you fall into divers temptations” the Joseph Smith Translation substitutes temptations as “many afflictions”. Indeed this mortal life is full of afflictions that are meant to prove us worthy and more importantly to gain access to the blessings promised for pursuing after righteousness. James also states the following “Knowing this, that the trying of your faith work patience”. It is because of our willingness to surrender our will to God through patience and long suffering that we relinquish control to the one individual with a complete understanding of what is best. That exercise of faith requires a mortal being with limited sight to trust an immortal being with a perfect view from beginning to end.

It’s crucial that I begin with a brief explanation of the circumstances that have defined my recent life. To merely state that over the course of this past year and a half I was sick, would be a gross understatement. After being misdiagnosed for five months, it was in May of 2010 that I was correctly diagnosed with stage IV cancer and the life I knew, would never again be the same. This was brought on without any warning, no known cause, and a mystery that has baffled the medical staff dedicated to preserving my life. We started with two very aggressive rounds of chemotherapy because of the advanced nature of the disease. They were unsuccessful and complicated by a staph infection that threatened to take my life. A decision was made to immediately remove the college football size tumor that had developed on my hip and treat the infection. After recovering for a short time, it was determined that two more rounds of chemo should ensue to battle the remaining tumors that had grown in my lungs, but this too was unsuccessful. With no signs of tangible progress, another change was mandated that ultimately entailed an additional seven rounds of chemotherapy. It was nothing short of miraculous that in February of 2011 I finally qualified for thoracic surgery, to remove the few remaining tumors from my body.

We moved forward with the hope that this ordeal was far behind our family and we would be fortunate enough to continue onward with the pursuits of life. However, in June another tumor was found and two more rounds of chemo have ensued. Our last scan determined that the tumor was still growing and at least two or possibly four more rounds of chemo, and probably another surgery is in the works to remove this new tumor.

Every aspect of being ill from the aches, pain, nausea, fever, chills etc. I have experienced over and over again and to extremes during this adversity. I would spend the entire year in bed, unable to do much of anything for myself, a glaring contrast to the way I had lived my life before, now completely dependent upon others for everything. With these events unfolding day by day our family’s future was very uncertain and yet there was great peace in knowing that whatever was going to happen would ultimately be for the very best. I learned to trust more absolutely in God.

The scriptures repeatedly testify to the many types of adversity we face and the opportunities given to each of us to overcome those trials. It is a tender mercy from God that there are blessings found when our spirits and physical bodies are broken. In the Old Testament, (Psalms 145:9), David proclaims “The Lord is good to all: and his tender mercies are over all his works”. All too often the negative aspects seemingly outweigh the positive if we fail to recognize how much of our lives are truly impacted by God. There has been ample evidence of God’s tender mercies repeated countless times during this trial that have demonstrated His magnificent love and concern for our family. I have found solace in the teachings from the prophets that proclaim how adversity has the ability to draw us closer to God and the abundant blessing He desperately wants to provide to His children.

Perhaps the counsel given in the Book of Mormon, from Lehi, a father, to his son, Jacob about “opposition in all things” (2 Nephi 2:11) is a timeless reminder that this life will be full of challenges. It’s because of this opposition that the greatest growth occurs. To understand the admonition from the prophet Lehi “righteousness could not be brought to pass, neither wickedness, neither holiness nor misery, neither good nor bad. Wherefore, all things must needs be a compound in one.” we need this opposition in order to meet our full potential. It’s a necessary part of our development as spiritual beings, living a mortal existence, to face adversity. This adversity allows each of us the opportunity to more fully appreciate how wonderful our Heavenly Father is. If we step back from our reality and look at the bigger picture we will assuredly see the hand of the Lord guiding us, protecting us, and providing a way long before and during our most difficult and trying times. We have never been left to do it alone. How humbling this has been for us to witness.

In the (Doctrine & Covenants 122:7) the Lord spoke to the prophet Joseph Smith while imprisoned in jail at Liberty, Missouri and proclaimed “that all these things shall give thee experience, and shall be for thy good.” We know that this was a time of great distress because of the tremendous persecutions the saints were facing and that the pressure was deeply troubling for the prophet. In the midst of this adversity the saints were being prepared for incredible blessings due to their faithfulness.

I have also felt on many occasions that in the deepest moments of despair that the blessings our little family was receiving were not only giving us valuable experience but were also for our eternal benefit. However discouraging and ugly cancer was in a physical and mental state, it has been comforting that our spiritual framework was sound. It provided the necessary relief that acted as a counter balance to the disruptive forces that were attacking my system. I’m thankful for the teachings of the scriptures and the simple fact that they provide strength when times are dark and uncertain. The comfort gained from reading these passages in the scriptures is quite remarkable. I have experienced it time and again during this battle.

The hymn “Be Still My Soul”, # 124, has messages that are quite profound. In the first verse written by Katherine von Schlegel, she eloquently demonstrates the calming effect that is attainable when we turn to God and place our faith, devotion and hope towards the Lord, that anything is truly possible.

1. Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev’ry change he faithful will remain.
Be still, my soul: Thy best, thy heav’nly Friend
Thru thorny ways leads to a joyful end.

2. Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

In the third verse we’re reminded about the disappointment, grief and fear disappearing and love’s purest joy restored. How magnificent a reward to have all safe and blessed when it counts the most. I sincerely hope that I’ll endure this trial well. I have witnessed through Priesthood blessings, charitable acts, family fasting, prayer and service rendered that “love’s purest joy restored” is absolutely real.

3. Be still, my soul: The hour is hast’ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

In the beginning of this trial, the effects of this disease were terrifying and the range of emotions surrounding our immediate future was overwhelming. The mere thought of having a disease that would brutally attack my body without regard was challenging to cope with.

My concern was directly related to the possibility of not being able to care for my family’s immediate needs and provide the necessary opportunities for their future growth and welfare. Their well-being was weighing heavily on my mind. It was at this difficult moment that I was given a priesthood blessing from our bishop in Lincoln, Nebraska. Bishop Hahne declared that I would be made whole and live to raise my children to maturity. He confided much later that it had been a real trial of his faith because although he had been prompted to say those words during that blessing, as a medical doctor he knew of nothing that supported what he said. These promises have since been repeated numerous times in subsequent blessings of healing and comfort throughout a very difficult year. I have grown to appreciate the real power of the priesthood in action and have seen a peace restored in my life regarding the direction that Heavenly Father desires for my life. I have developed a more abiding love and respect for Him because I have witnessed His remarkable love and concern for me, individually. Knowing and feeling of this genuine love helps us overcome the most challenging obstacles we may face.

There have been several instances where we have seen the love of our Heavenly Father through people He has placed in our lives. When I had first fallen ill, I was an unemployed graduate student and my wife was only working part time and we did not qualify for insurance with her company. The expenses for the treatment of cancer are staggering and without insurance we would have been sunk. Before the MRI confirmed that it was indeed cancer , my wife’s boss, Craig Larabee, had suspicions that it was worse than what we were expecting and had already decided to grant my wife full time status with the necessary amount of hours to qualify for full coverage. He was willing to give up his personal vacation days to help guarantee the policy would be intact when we needed it and make certain that our family was okay. This act of kindness continues to resonate with his constant worry for our family throughout this ordeal and we are eternally grateful to Heavenly Father for Craig’s powerful influence in our life. This was not a coincidence. He is a genuine friend that has strengthened my wife’s testimony quite significantly by helping her recognize Gods hand in all things. His church group would immediately bring in boxes of food, supplies for our home, gifts for our kids and most important, prayers on our behalf.

To this day the idea of other Christian denominations actively praying for a sick father of five who happens to be LDS has been inspiring. I have been humbled by this charitable act because I know for a fact that it did not happen just once but in many cases has continually occurred throughout the year. Bereans, Catholics, Lutherans, and Latter-Day Saints, etc., pleading to heaven for a common cause, many individuals whom I have never personally met are examples of truly wonderful people and it’s profoundly humbling to have strangers pray on your behalf.

Another incredible blessing has been returning home to Brigham City to live with the Frandsen’s. We have sincerely appreciated the genuine kindness and concern shown for our family at a time when everything normal in our lives was turned upside down. We would have experienced something very different had we not been able to have a place to live and focus entirely on simply enduring this trial without so many additional worries that our family was faced with. They have been nothing short of outstanding and exemplify charity at every turn. It has become a huge blessing that we will always hold dear and perhaps never be able to repay.

These are just a few examples of the blessings that we have witnessed firsthand through adversity. Despite the challenges that have shaken our foundation we are more able to handle these various problems because we have been strengthened repeatedly and felt the guiding influence of our Heavenly Father. I take great comfort in the opportunity I’ve been given to wait upon the Lord. In the New Testament, (2 Corinthians 12:10) the apostle Paul wrote “Therefore I take pleasure in infirmities….for when I am weak, then I am strong.” This statement is applicable to any situation because when things seem impossible they are actually achievable through Christ. I marvel that He willingly experienced the pain, suffering, sorrow and despair through the atonement that would allow for a much greater understanding of the obstacles we face.

I have gained a tremendous level of gratitude for the pure blessings of the gospel. The positive influence on our family has been manifest through numerous acts of compassion, love and service given through grandparents, parents, siblings, uncles, aunts and cousins. It has most assuredly provided a constant protection in the thick of the storm. Having this knowledge has reminded me of the amazing love that our Heavenly Father and Christ have for each one of us no matter the difficulty we face. I’m thankful for the blessings made available through adversity that demonstrate how the Plan of Salvation is meant to save us all. I love what the gospel represents that no matter how difficult things may be there is always hope.

Perhaps the greatest measurable blessing of adversity is being able to know our Heavenly Father and His son Jesus Christ. It’s this relationship that has provided a sure foundation, where waiting upon the Lord with faith and patience is a blessing that we should all strive for in our lives. The Church of Jesus Christ of Latter-day Saints provides safety with the knowledge that our Heavenly Father is waiting with open arms for our return. The lessons I’ve learned over this last year as we have battled cancer have assured me that developing patience and faith in God’s plan is a remarkably powerful means to overcome the problems we face in this lifetime. I am grateful for all of these blessings found through adversity, in the name of Jesus Christ, Amen.

Trent Hal Rasmussen/Stake Priesthood Meeting/July 17^th, 2011

Day 2 of Round 14

2011-07-14T18:21:00.000-06:00

We are here at the Huntsman receiving the second dose of the new chemo. Trent has done fabulous so far. He was a little tired yesterday but that was probably because we were up at the crack of dawn for a very long day of tests and infusions.

Today Trent had the echo done and it seems that all is fine with his heart. No alarm bells have sounded with anyone so we are going ahead with the chemo. They have to monitor his heart because there is a lifetime max with the doxorubicin. Once you have received a certain amount of the drug it becomes cardiotoxic so they monitor it very closely. He will have another echo in about three months I think.

Trent is feeling really good and optimistic about this chemo. When we saw Katie today he asked if the chemo could already be working because he is already feeling it less in his back. She told us that sometimes patients who are on this chemo and have superficial tumors, can see a difference with a day or two. That was exciting to hear! So we are going to go with that option-hopefully the shrinking has already begun!

The beeping has started and that is our cue to leave so we are outta here! Well, until 8:00 tomorrow morning. :s

Swallow

2011-07-13T20:20:00.000-06:00

Well today was scan day. We took Mallory with us so she could stay with Olivia. That was a nightmare. She threw up twice in the car on the way down and then all over the parking garage. Traveling with that girl is not the most fun. Trent had his scan done while Mallory and I cleaned up herself and the car. After that we waited. As the minutes ticked by I got more and more nervous. By the time we finally went to see Dr. Gouw I had used the bathroom three times. I am not sure how much of that was nerves vs. the orange juice I had for breakfast! To say the least I was anxious. Trent had not slept much the night before because he was so nervous. He had confided that he did not think the chemo worked because he can feel the tumor in his back.

Well, he was right. The tumor has continued to grow, albeit slowly. It is now the size of a golf ball, which explains why he can feel it in his back. Dr. Gouw was not too concerned about the size. He said we have at least six months, maybe up to a year before it would start to impair heart function. I guess that is good news. Because the tumor did not respond to the chemo we are changing agents. The results from the lab in Arizona indicated that this tumor should respond to Doxorubicin and Cisplatin. These are both agents we have used before and not had good results. We are also adding a third agent, Temodar. It is commonly used to treat melanoma, but the lab results also indicated it should be effective on Trent's tumor. So, Dr. Gouw is wrapping them up in slightly different packaging from what we have seen before and we are going to go with it. The new regiment will go like this. Three days of infusion then 18 days off with labs being done every four days to track how far Trent's counts-especially platelets-are going to fall. Today he had liposomal doxorubicin which is a 90 minute infusion, Cisplatin which is a 60 minute infusion, three hours of hydration, and Temodar in the form of two horse pills. Tomorrow and Friday he will only get the Cisplatin and Temodar. Tomorrow Trent will also have an echocardiogram to make sure we have a baseline to measure from for the Doxorubicin which can potentially damage his heart. This was a lot to swallow. But we did it. Trent even gathered us all in for "Go Team" before we left the exam room-which was a first for our doctor and nurses. What a goof. We are not defeated, just delayed.

We quickly went out to say goodbye to Mallory who was waiting with Jill, Olivia, and Claire. When we shared the news I was fine. By the time I had walked them down to their van I was swallowing. A lot. There is nothing to do but swallow that news and move on. After the girls left I sat on a bench in the lobby, put my head in my hands and prayed. I prayed for patience, endurance, a good attitude, strength, and of course success. I watered my toes pretty good with my tears as I sat there for about five minutes. After swallowing several more times I was pretty sure I could put on a happy face. When I got back to Trent in infusion, he was disappointed but determined.

We talked to Kelsie, who works there with a different doctor who treats GI cancers. She told us he uses the experimental lab in 100% of his patients and swears by the information he gets from them. That gave us both a lot of comfort. We are anxious and optimistic and eager to see what this next regiment can do for us. We are hoping that the side effects are minimal and that Trent will tolerate it well. We will scan in six weeks and see what the next step will be. Surgery is probably in the future but right now we are aiming for a decrease in size or at least no change. Baby steps and a lot of swallowing.

End of Round 13

2011-07-10T15:59:00.000-06:00

Round 13 was bad. Well, a few days were. They were as bad as any chemo was before Trent's surgery. But thankfully it was only for about a week. Trent got really sick again and was in bed for about five days straight. He was so weak he could hardly move but then he would go into a rage and have all the energy I have ever seen. Not good energy though. At one point he was yelling and screaming and throwing things as I was ushering all the kids out of the room. I have never seen him so mad! When I looked in his eyes I did not see one thing that resembled my husband. I was totally calm and not mad at all. I knew that he was out of control because of the chemo and I really don't blame him for any of it. I know he remembers what happened and feels bad/dumb about it but truly couldn't control his brain at the time. It is just another way that cancer/chemo is so ugly.

I took the kids upstairs and had the "damage control" kind of talk. Zach was pretty broken up about what he saw but we talked and I explained that the medicine in Trent's body affects his mind too. In addition to that it has got to be awful to feel so sick all the time. We talked about patience and how we just needed to pray for the spirit to be in our home and those kinds of incidences won't affect us. And no matter what, we love each other. I think the kids responded pretty well and were okay after that.

We were supposed to head to Idaho for the holiday weekend but as each hour passed it was becoming more and more obvious that was not going to happen. So we found ourselves trying to wing it and make a party of our own. We made some crafts and enjoyed some family time. Sunday afternoon we found a "Love Tote" on our porch. What amazing timing! It was full of fun 4th of July stuff and was exactly what we needed to save our weekend. (Thank you so much all you "Love Toters"!) Another tender mercy. :)

Monday morning we went to a small parade. Trent was not well enough to get out of the car so it was a good thing it only lasted about a half an hour. We had a fun BBQ for lunch which Trent was only able to eat a little of. We let him rest all afternoon and tried to lay low a little. That evening Keisa and her sister Kari treated us to pizza for dinner. We set up the new tent in the backyard and got ready for some fun! All the kids were so excited to sleep outside. Trent was kind of torn about it though. He didn't really want us to use the new tent without him but I assured him there would plenty of times in the future that he would be camping out with us. We made some candied popcorn and headed off to the neighbors' yard to watch the fireworks. Trent did not make it out with us. He was absolutely pooped and wanted to rest. By the time we were ready to light fireworks of our own Trent was able to drag himself out to a chair and watch. He mostly just laid there with his head hanging back on his chair. He looked awful. I felt so bad for him but I still needed to make it fun for the kids. We got everybody situated in the tent and Trent made sure we were okay before he went to bed. Our dog Scout, played the part of the watchdog and planted himself right outside the tent's door and stayed there all night long. I have to admit, that did make me feel a little better.

It took Trent until about Friday before he started feeling better. Thankfully he gets a few good days before we head back to the Huntsman for scans. Wednesday we will know whether or not the last two rounds of chemo have been effective on the tumor in his lung. We are crossing our fingers and hoping for the best. Who am I kidding? We are praying like crazy and exercising every ounce of faith we have. I don't think any crossed fingers ever resulted in a miracle!

Haircut 2.0

2011-07-02T09:33:00.001-06:00

It was just over one year ago that we cut Trent's hair the first time. In some ways I can't believe the time went so fast but then it also seems like this year has dragged on forever and I am shocked that we are still in the thick of the cancer battle. It was also one year ago today that Trent had the surgery on his hip. It was a day full of nerves, tears, and hope. He has done so much better than I ever dared to hope! Sometimes I hardly even notice a limp at all-just as Dr. Jones predicted. He rarely has pain in his hip anymore and nobody can really tell he has anything wrong except when he goes to church and has to tuck in his shirt. Airport security noticed as well but that is a story for another post!

Back to the haircut...he really did not want to do it but it was seriously time. Last night I finally convinced Trent that bald is more beautiful than looking like the Phantom of the Opera when his mask gets ripped off.

Before:

After:

Notice that his expression didn't change much between before and after. He was not feeling great at all. The neulasta/chemo was really hitting him right then.

This week has been a little hit and miss for us. Monday we took the kids to see a movie in the park and had a great time. Trent was feeling good and it was nice to do something as a family. We had just barely tucked the kids in bed and fallen asleep when we were woken up by sounds of barfing and screaming. Sigh. Jonathan had lost his cookies all over the bed that he and Mallory share and she was screaming about having barf in her hair. That was a long night. Over the next two days Mallory and Jarom also got the barfs.

Wednesday we went for the second dose of chemo and Trent was doing pretty well. We asked for more oxycodone and that got Grace all worried. She came in to check on Trent to see where the pain was. Really he is doing great but we know how hard Neulasta kicks so we wanted to be prepared. After chemo Trent had an MRI. We did not see Dr. Jones but Nancy promised he would look at the MRI and call if anything was wrong. So far we have not heard from him. Yeah!

We also stopped by Mark and LaDena's (if you don't remember them you can read about it here ) hotel for a visit and ended up getting a bite to eat with them. They are such interesting people! I could listen to them talk all day long. We had a really fun time with them and are wishing them all the best as they await results of their own.

Friday we were supposed to head out of town but the barfs landed on me and Zach. Trent was not feeling well at all so we decided to wait it out and maybe go in the morning. Hopefully we will be heading out soon with the camping supplies, necessities for 7 people for three days, treats, entertainment, masks, medical supplies, and pharmacy in tow. Between five kids and Trent it takes a lot of stuff to have fun! Better get packing!

Round 13

2011-06-29T10:00:00.001-06:00

We are heading down for the second dose of round 13 today. I have been so amazed at how well Trent has handled the last two rounds! When we learned he would be undergoing two more rounds of chemo we were both disappointed because he had been feeling so well. Some of my tears were for the fact that he would be so ill again. The memories of the first 11 rounds came rushing back and I must admit that most of them are horrible memories. We were not too excited to begin all of that again. However, Heavenly Father must have taken that into consideration because He has truly blessed us these past four weeks. Trent has had some really difficult times, been in bed some days, and had some horrible pain, but for the most part he has carried on life as normal-well, what was beginning to be normal. :) He has been able to participate in everything that we already had planned to do and he wasn't even slowed down too much. He has kept himself busy with some projects he had already started and has finished most of them. The whole experience has been so much better than before. I guess that is due in part to the fact that he was pretty healthy when he started chemo again and the amount of disease in his body is so much less.

Trent is starting to lose his hair again and he won't let me shave it. It comes off on everything and is starting to look a little patchy. He is adamant that he is going to just let it all fall out instead of shaving it because he hated being bald and looking so sick. I can understand that but I still want to shave it.

During the last round of chemo I experienced something new that I pretty much love-giving shots! I know, kinda gross but it was new to me and I kinda liked it! After the second dose of chemo in each round Trent is given a Nulasta shot to boost production of his bone marrow. It makes him very sore and makes all the bones in his body ache so it is not much fun. Last round we had the shot delivered to our house by the pharmacy but no one from home health ever called to make an appointment to give it to him. We were leaving for Las Vegas early the next morning and didn't have time to wait. I was pretty excited to try giving the shot and had offered several times before but Trent didn't ever want me to do it. What?! I can pack four feet of gauze in an open wound four times a day but I can't slip a little needle into his belly? I don't know what that is about! Finally Trent relented and I grabbed the needle and popped it in his stomach. It slipped in like butta baby! If you can't tell, I am excited to do it again tomorrow!

Relay for Life

2011-06-20T19:22:00.000-06:00

Just two days after learning that Trent had another tumor in his lungs we participated in the Relay for Life. We had already entered "Team Trent" and were so excited to help other people fight cancer. It was kind of bittersweet to go and see all the many people who are affected by cancer and who are willing to fight for a cure. It was very inspiring and we will definitely be participating in the future.

It started out with a "Survivor Lap" for anyone who has ever been told "You have cancer". Trent was proudly sporting his purple survivor shirt. I did just fine when he passed us the first time. I was videoing and taking pictures as he passed. But when he came around to the end of the first lap for some reason I lost it. The gravity of what we have been through and survived hit me. We were surrounded by friends and family who have given so much to support us this year and we really appreciate all that they have done.

The idea was to have someone on our team walk on the track for 24 hours. We had some volunteers but I ended having to recruit people from our ward to help us out. In the process I got to invite several ward members that I knew were cancer survivors to come join the Survivor Lap. I was so glad to see them there and get to celebrate their victories with them. I tried to take pictures of everyone who walked for out team but I missed some. We are so grateful for each person who supported Team Trent!

That evening they had the Luminary ceremony. We all walked a lap in silence in honor of the victims and survivors of cancer. Then the kids slept in tents with Trent at the park. There was music playing all night long to keep the walkers awake but that meant no sleep for everyone else. Our family was pooped the next day!

By about 2:00 the next day the walking had to stop because there was a gas leak into the pond that we were walking around and they had to close the streets. I didn't mind too much. We didn't have that time filled and I was going to walk it myself, but took a nap with Trent in the tent instead. :)

Trent on his Survivor Lap!

This is Becky. She was the girl I visited while we were both at the Huntsman. If you don't remember the whole story you can read it here. We were both doing well (not crying) until we saw each other. I ran up and gave her a hug and we both just bawled. I was so happy to see her as a Survivor!

The Original Team Trent

Jarom was a great walker for us. He probably walked a dozen or more laps.

More TEAM TRENT!!!!

Jeff & Belinda. Belinda is a breast cancer survivor!

Paul & Linda. Two of the most compassionate people I know!

Desmond -another survivor!

Rena -Lung cancer survivor!

Tom & Brenda. They walked for us for two hours!

Adrianne & Jami & Cannon-friends from the ward.

Nate & Suzy- our BFFs!

I overheard a conversation the night before Relay about "Mark & LaDena" so I jumped right in and said, "I know them!" We had only officially met two days before but how many "Mark & LaDena"s can there be? We thought it was fitting to walk a lap for Mark.

Matt-another one of Team Trent.

I forgot to rotate this before I uploaded it. This luminary was in honor of Nate's dad who died when he was about twelve.

Adam and Mallory double teaming!

Devri-lapping for Team Trent.

"Dancing Machine" aka Ethan and Jarom.

A very tired Trent all cuddled in his sleeping bag.

Jonathan

Megan and Whitney

This guy was walking around playing all kinds of songs on his bagpipes. He stopped outside our tent and played "If You Could Hie to Kolob" which just happens to be Trent's favorite hymn. Pretty cool.

Another unrotated picture! Josh and Jonathan.

Somehow I didn't get any pictures of Zach although he stuck by Trent's side the whole time-minus the many laps he did for Team Trent!

Our team raised $780 in just under two weeks. Pretty good for our first Relay! Way to go Team Trent!

Recurrence

2011-06-02T17:47:00.001-06:00

About three weeks ago Trent started having a little pain in his chest. We thought it might be due to the wires that are holding his sternum together. The surgeon told us that sometimes a patient's body rejects the wires and you have to have them removed. So last week we called and told them what was going on, that Trent was having some pain and there seemed to be a crescent moon shaped area at the top of his chest that looked a little swollen. The nurse asked me to take pictures and send them down which I did. We decided to make an appointment just to ease Trent's mind. He drove himself down to the dr and had an x-ray. Upon finding a spot on the xray they sent him for a CT which revealed a mass about 2 cm x 4 cm on his lung, right on top of his heart. They suggested we visit our oncologist right away because the spot was "suspicious". I immediately made an appointment for the following Wednesday (yesterday). I asked Katie, the nurse at Huntsman, "If the radiologist says a spot is "suspicious" they pretty much know it is cancer, right?" I knew the answer but was holding out a little hope for the spot to be just fluid, like they told us before.

We decided not to tell anyone yet because we had our son's baptism last weekend and we wanted it to be about him, not cancer. We cried a few tears that night, mostly out of frustration that we had to start over, just when Trent was feeling so well. Although I had been feeling very calm about the whole thing, my mind still began wandering to places it shouldn't. As I watched Trent interact with our children I would wonder, "Is he stamping this moment on his brain forever-should I be?", "Is this the last child Trent will baptize and confirm?", and so on. That is not very smart, and I know that. So, I changed gears. We are fighters...and it doesn't matter how many times we get knocked around, we get back up.

So Tuesday night we fasted and it helped me so much. Before we left for the hospital my dad gave Trent another blessing and again, confirmed the previous blessings that have promised that Trent will live to raise his children to maturity. He blessed the doctors and the nurses through Trent, that their abilities would be heightened to find the right medication to save Trent's life. He also said the things we would learn would be encouraging. It was another amazing blessing that had me in tears but my heart was calm. I never did get the butterflies that I usually get when we meet with Dr. Gouw. In my heart of hearts, I knew it was cancer-not fluid, and I am fine with that. Don't get me wrong, I still hate that cancer is in his body, but I know we can fight it. We did it once before and we will do it as many times as we need to.

We both received the news with calmness and asked what was the next step. He started chemo-gemcytobine and taxotere, immediately following our visit. He is going to do two rounds and then have another scan on July 13. In the meantime, Dr. Gouw is going to see if he can send the slides from the tumors that were resected from his lungs to an experimental lab in Arizona. They will study the slides and look for any molecular weaknesses that can be targeted with chemotherapy agents that we have not tried yet. Trent is on the last two agents that are known to work for sarcoma but if they can target a specific molecular breakdown they can hopefully kill the tumor. Many times in tumors the cells tell each other to reproduce, if they can use an agent that interrupts that communication the tumor dies. The experimental study is the next step if the current chemo does not work.

In the infusion room Trent had about a 30 second breakdown and then he was back to his usual jovial self, joking with all the nurses and telling them about the T-shirt he wants to make. I stepped out to get him something to eat and when I stepped off the elevator I immediately recognized two people I have never before met. I walked right up and gave them hugs. Mark and LaDena are in a similar battle and we find ourselves in very similar situations. It was so great to finally meet them! They came with me down to Infusion to meet Trent and it was like we were all old friends. Josh and Keisa also came to see how Trent was doing and it was really nice to have some family support there. It was wonderful to have them around and help take our minds away from the ugly reality we now face, yet again.

After Trent's infusion was finished we ended up going with Mark and LaDena to see "Pirates of the Caribbean" and had a blast! It was exactly what we needed and they helped our day end well. I don't for one minute believe that was a coincidence. I am finding that not many things are.

I Like to Ride My Bicycle

2011-05-17T16:59:00.000-06:00

The last few weeks have flown by! We have been very busy with birthdays and family and LIFE! Trent has been doing so well! He is still getting better and better everyday-with an occasional bad day here and there. He has been having some pains that worry me but I am not sure if I am just being a nervous nelly or if we are just a little bit hypersensitive to anything that has to do with his body right now. I really wish there was a "What You Can Expect Day by Day After Cancer" book. I have read a bunch of pamphlets and books that we were given but because everyone is so different, the things I read are somewhat vague. I would love to have a guideline that says "On day 62 Trent will have some pain in his chest but that is due to the burrito he had last night, not cancer." THAT is the kind of book I would like to read! It is hard to know what is normal and what is not, especially after 11 rounds of chemo and two surgeries. I think that is a guessing game we will play for the rest of our lives.

Last night we got out all the bikes to get them ready for summer. Trent jumped on his and started riding around. It was so fun to watch him! I ran for my camera so I could document the occasion. I am sure he was thinking it was not that big of a deal, but to me it was huge! I have sometimes felt bad for the loss he has suffered physically and wondered what his 'normal' will be. When we first went to Huntsman we spoke with a social worker, John, who suggested that Trent take up cycling. We kind of liked the idea but Trent could hardly lift his head off the pillow at that point so we didn't do anything about it then. But watching him last night made me think that maybe this would be his "thing". He never really did it before so there is nothing to compare himself to-which might be a good thing. He must have liked it too because he got up today and went for another ride. He rode a whole mile!

He has just now left to go coach Zach's soccer team. You can't imagine how nice it is to type something as normal as that! He is just filling in but he is really happy to do so. He has really loved being able to go to all the games every week and gets a real kick out of watching his kids play. I am sure all parents feel the same way but to us it is like a bonus, something that almost got ripped away, and we are especially grateful to have another chance to enjoy it.

It's Been a Year

2011-05-05T21:16:00.000-06:00

It's been a year. That is what I tell people when they ask me what we have experienced. There are no words to describe it. I find myself at a loss still, even after the question has been posed several times. It has been a year.

It was also one year ago today that Trent and I sat in a small exam room and heard the words, "You have cancer." Just thinking about it puts me right back there in that awful moment. I actually called that doctor today and spoke with his nurse, Lisa. I just wanted her to know that as grim and as ugly that diagnosis was, Trent is still here and doing great. I explained to her briefly about what we had been through in the last year and told her I would be calling her every year on May 5, hopefully telling her that Trent is doing great. She admitted that she and Dr. Hung had been wondering about Trent the other day and decided they would probably never know what happened to him. I was so glad to be able to tell her about our success thus far. I have a few other calls to make to other doctors and nurses who helped us. I don't mind making that kind of phone call as opposed to others I have had to make.

As I have reflected on the past year I realized something.  I spent many months trying to lead the Lord. I prayed so hard for exactly the outcome that I was comfortable with. Those were very difficult months. I was praying and praying and not seeing the answers I was "ordering". Finally, when I gave myself and the outcomes to the Lord, 100%, was I able to cope with the situation. That was an interesting realization for me. The Lord knows and wants what is best for each of us and what it will require to make us the best that we can be. He allows things to happen that will stretch us past anything we ever imagined we could live through and that is when the growth happens. I am so grateful for all that we have learned.

For a long time I have thought that in order for me to really appreciate what has happened I had to be able to say that I am grateful for cancer. That has really tripped me up. I CAN NOT say that I am grateful for cancer. I'm not! Cancer is horrible and I would never wish it on my worst enemy! But, I AM grateful for all of the blessing that come with it. The doctors, nurses, and countless volunteers that have blessed our lives will always hold a place in my heart. I have been humbled beyond belief.   The outpouring of love has been overwhelming. I have been lifted higher than I could have dreamed. We have truly been carried through the darkest hour and into the light. That is where we are now and hope to be for a very, very long time.

The past few weeks have been awesome. Trent is growing more hair and looking more healthy than ever. We are loving every minute of it! We have been able to enjoy time as family and have it be somewhat normal. We went to the bird refuge last week for spring break. I know, way nerdy, but it was really fun! Trent drove as I handed out treats, passed binoculars, pointed out birds, and helped kids fill out their worksheets. It was beautiful! For the first time in a very long time I was Mom, and only Mom. I did not have to be Mom, Dad, Driver, Nurse, and everything in between.   I was just Mom and I loved it.

We are looking forward to many more fun and exciting times in the future. We won't even be too picky about how nerdy our outings are. We look at life differently. We have a different idea of what is important and hopefully that will never change.

Last Week's Scan

2011-04-25T06:59:00.002-06:00

I have really been slacking on the blog lately. It is surprising how little time I have now that Trent is feeling better! I would have thought it would be the other way around becaus he is able to help out so much more. Trent has been baking, making dinner, and running kids to their soccer games and guitar lessons. It is HEAVEN!!!! But, because he feels better he wants to spend every minute with me and the kids, so I haven't gotten a lot of blogging done. I have a huge post in my head though-several things I have been thinking about lately and tons to catch up on.

But I will jot down the details of last week's scan and get to the big stuff later. We went in for a scan on Wednesday. Trent and I were feeling good about it but just a little nervous too. When we got to the Huntsman it was like a family reunion. It was so fun to see all of our friends there. They were all thrilled to see Trent doing so well and getting a little hair!

This is from two weeks ago---just starting to see a shadow of hair on his head.

The lab nurse, Stephanie, pulled us right back to the lab to have his port accessed and pretty soon there were three or four more people back there wanting to say hello. We were talking about Trent and I needing to take a cruise. I do want to go on a cruise with him! There was a time about a month ago when I thought I was losing it. I needed a vacation badly! But, I kinda got over that and life went on! I think the gravity of what we had just been through was starting to hit me. I was trying to process the fact that I was going to see a healthy Trent again...but with the deformities of cancer. That is something Trent is just barely starting to see too. I think that while he was sick it was easy to lump all of the physical changes and blame them on chemo, but some will never go away. It is not a terrible thing, but an adjustment nonetheless.

When we got back to the exam room it seemed like we waited forever. Finally Dr. Jones popped his head in and basically just chatted with us for a bit. He didn't examine Trent's hip but just asked how things were going. He is a great guy and it is so nice to relate to him on a religious level too. Shortly after his visit Dr. Gouw came in with Katie. He said the scans looked good on first inspection, but going over with a fine tooth comb, there is a spot to watch. It is most likely fluid on his lungs. I guess because it is right on the fissue between two lobes of his lung (can't remember which side they said it was) it is more likely that it is fluid, not cancer. But because we want to be extra cautious we are going to have another scan in two months instead of three. At that time we will have an MRI on his hip too. Dr. Gouw did confirm that we are still in the land of NED. We will take that victory and run with it!

The Healing Power of Music

2011-04-14T15:00:00.016-06:00

There's no question that music has always had a very calming influence throughout my life, whether things were good or bad. I have often found refuge during the storm in the messages delivered through this medium. It's almost as if the spirit of music cries out in a way that resonates stronger than the spoken word. I'm so thankful for being able to listen to music during my treatment of cancer. There were often moments while I was alone that listening to a song would strengthen me and provide the necessary encouragement to carry on. These types of messages continually provided reassurance that Heavenly Father was acutely aware of my situation, willing to care for me on an individual basis and furthermore deliver tremendous peace to my weary soul.

Imagine being trapped inside a body infected with a disease that was destroying you from the inside out. It's so very frustrating to be stuck, especially when you've been able to do everything imaginable before but now, because of cancer, have limitations placed on every aspect of life. The simplest tasks were so challenging; being able to move, to sleep, or to eat became very difficult. I noticed that physically and mentally I was spent, but was surprisingly calm and collected spiritually. There were so many times where it was difficult to think of where I had been, am now, or where I would desperately like to be in the future. In so many cases the music I listened to made a significant difference.

I found two songs that have provided great solace and, interestingly enough, the messages are directly associated with two people and their fight with cancer. The music groups were impacted directly with these patients and their stories. I would hope that everyone take a moment and listens closely to this music.

Erin's song. CASTING CROWNS

This next one is about the artist's husband and their struggle. He was diagnosed with a brain tumor shortly after they were married. LAURA STORY

A Picture is Worth a Thousand Words

2011-03-22T22:06:00.001-06:00

Sigh...Isn't it beautiful? A view of Trent's lungs minus cancer! He does have a little fluid but that should go away eventually. When we met with Dr. Karwande today he said everything looks great. He was all smiles and told us to have a great summer. He never wants to see us again. :)

Dr. Karwande and Trent all "thumbs up"!

Dr. Karwande and his entire staff have been so great to us. They were just as happy as we were to see such great results. Hopefully we never have to see them again...as a patient! Casual meetings would be welcomed however! We can't say enough good about Dr. Karwande. Whenever we tell someone he is our surgeon we get the same response; a knowing nod with a big smile. EVERYONE thinks he is great. And guess what?! We happen to be of the same opinion. :)

When we registered for the x-ray today the woman who helped us recognized our names. She was so excited to hear that Trent was doing well. I guess the story of the poor guy with a BAD case of cancer and a young family to live for traveled throughout the hospital. While we were at St. Mark's today Trent kept commenting on how good it felt there. It's true. It is a great place, and it's even better when you don't have to stay!

We are having fun watching Trent's hair grow. I am going to start taking pictures. Today he noticed hair is starting to grow on his arms and hands again. He is getting enough hair on his head to almost make a shadow. Someday soon I will have to buy him shampoo! He is even getting the beginnings of eyebrows. I can't tell you how much I have missed his eyebrows! I never really noticed them before but when he lost them, that is when he looked really sick to me. Then the eyelashes fell out and he was really a cancer patient. I almost don't remember what he looked like before. Tonight we were looking at some old pictures and there were some of Trent looking really healthy. The first thing I noticed was his nice hair. The first thing Trent noticed was color in his skin. It is a great feeling knowing he will get there again.

NED

2011-03-18T11:37:00.000-06:00

For those of you unfamiliar with NED, it is now my favorite place in the world! Wednesday we went to SLC for and MRI and to meet with two of our doctors. We have officially been welcomed to NED, a.k.a. No Evidence of Disease land! The MRI of Trent's hip looked fabulous. When Dr. Gouw asked the radiologist for his preliminary findings he shrugged his shoulders and said, "Well there is a big divot there." HaHaHa! I will take that divot any day over finding something else there!

When we met with Dr. Gouw he burst into the room and just blurted out, "Your scan looks great, that's what you want to hear right?!" Grace and Katie followed and were all smiles. We were both just beaming. I couldn't wipe that silly smile off my face the whole time we were in there. Dr. Gouw, Katie, and Grace were just as amazed and excited as we were.

I know they didn't expect this outcome when they first saw Trent. This one is definitely a case for the medical journals. We are going to do a chest CT in April and from there start the every three month scanning. I hear of so many people who make it to NED and then have a recurrence later on. I sincerely hope that is not the case for us but I have to prepare myself for that possibility.

Dr. Launce Gouw, Katie Thomas, Grace Noda- can't even express how much we love them!

Grace doing the "Your scans look great!" sign. The first time we got good results this is what we saw before Dr. Gouw even had the chance to say anything. After that, we looked for it every time!

This is Vanessa. She is sooo cute! She is a little chatterbox about sports with Trent and he loves that. On scan days she always found a way to find us after the meeting with the doc to find out how we did. That is one of the great things we found at the Huntsman. The people there are genuinely concerned about each individual patient.

This is Kelsey. Not a great picture, I took it with my Blackberry and I think I moved when I took it. Sorry! Kelsey is such a sweetheart! We both just love her to death! She is another one who would search us out to find out results. She is hilarious and was always a good laugh even when we didn't feel like laughing.

This is Stephanie Stapleton. We first met her in the Lab. She taught us a bunch about how to care for Trent's port and after that she was a lifelong friend. She is one of those people who makes you feel so good and positive. She is also the giver of a much loved Minion. :) Only wish it were real!

When we met with Dr. Jones he asked what Dr. Gouw had told us. We mentioned NED and he just threw his head back and his arms in the air and laughed. He was totally amazed. Again, we were both smiling like idiots. He would like to see us as often as he can when we go for scans so that will be good to keep in touch with him. He invited us to participate in the Sarcoma Walk that the Sarcoma unit at the Huntsman organizes each year. I have a feeling that we will be doing a lot of these types of walks in the future! Last year the walk was held just days after Trent had his surgery on his hip. It is quite satisfying to be on the end of it.

Dr. Jones and Nancy. Don't you just love that bowtie!? He has a son who is a total "mini-me". He brought him on rounds after the first surgery and he is adorable! Dr. Jones and Nancy are awesome. Again, no words. :)

As we were leaving, we ran into Jon Huntsman Sr. Trent called out, " Brother Huntsman!" He turned around and greeted us. We thanked him for providing such a nice facility for us and told him we were winning the battle. He told us he loved us and was so pleased things were going well. It was so satisfying to get to thank him in person. We have thought about him many times and been so grateful for his generosity. So to tell him that face to face was nice.

To celebrate we stopped at DQ for a blizzard. Can you say LAME!? We were both too tired to do anything else and it was raining really hard so we just wanted to go home. Surprisingly I didn't even shed a tear until we were almost home and I was listening to the song, "He Hears Me". Trent was fast asleep and I was bawling like a baby. I KNOW our prayers have been heard. I KNOW the Lord has heard every cry of anguish and caught every tear. I KNOW He is mindful of every fear, hurt, success, and joy that we experience. He is with us through it all. Our journey has many miles left to travel and we don't know what lies ahead but I KNOW we can face it because we are never left to do it alone.

Just Need a Little More Time

2011-03-10T11:01:00.000-07:00

Trent is SLOWLY getting a little better. I really thought the recovery would be faster but it is dragging on and on. The severe pain has subsided but the soreness and achiness is hanging on tight. Trent is getting really sick of only sleeping/or not sleeping on his back. It makes the nights long and sleepless. He just needs a little more time and happily we do have that!

Trent will see Dr. Gouw and Dr. Jones next week. He will have an MRI on his hip only. The thinking is that the chest x-ray post surgery is enough for now to say that the cancer is out of his lungs. Since it has only been two months since the last CT scan they would like to wait a little longer for a full body scan. He will have an MRI on his hip to make sure everything is looking good. He does have a small bump on that leg just below where the incision ends. It is most likely a permanent deformation because the muscles were cut and there is nothing to make them hang on to the bone anymore. When Trent was really swollen after surgery it got pretty big and it scared Trent a little. When I felt it it did not feel anything like the tumor there before. But to calm all the fears we are going to put a big X on that spot for the MRI so they can get a really good picture of that area.

The week after next Trent will see Dr. Karwande. I think we are both a little anxious to see him and have him tell us everything Trent has experienced is completely normal. We have already called his nurse a couple of times to get a little reassurance from her. :) It is hard to know what to expect and what is normal after such a big surgery!

Little by little Trent's body is recovering. He has had to shave twice now! It is like he is 14 again with the scraggly facial hair-usually gross but oh so beautiful now! He is getting a little-and I really mean little-hair on his head. You can't really see it yet but he does have a hair or two that are about 1 inch long! I keep a close eye on his eyelashes and eyebrows. I can't wait for those to come back! He will start to look a whole lot more like Trent when he has eyelashes and eyebrows!

So Trent just needs a little more time to heal and I just need a little more time in the day! I really need to add a bunch of pictures to the blog but just haven't found the time to do it yet. I will stop slacking and get that done!

2 Weeks Post Surgery

2011-03-02T13:33:00.001-07:00

In a lot of ways the last two weeks have flown by. But in many more ways it has been way too long. We are loving thinking that the cancer is out of Trent's body. In the words of a very wise Sarcoma nurse whom we love very much, "Don't take away from today while worrying about tomorrow." With that counsel we are celebrating today, this week, and whatever time we all have left.

Recovery is being slower than I had hoped. In my mind, the recovery was going to be super speedy because the chemo was over and good things would be able to grow in Trent's body. But reality is that Trent has had 11 rounds of chemo and recovery is a little slow. Nevermind the fact that his sternum was sawed in half! But little by little, and I mean little, he is feeling better. He is having a lot of pain and that makes him tired and want to lay down alot. The dr. said he should be getting up and walking laps 3 to 5 times a day but so far all we have gotten are a couple sessions on the exercise bike and as much walking as it takes to get around the house a little. We are hopeful that by his birthday in a couple of weeks he will be a new man. Birthdays are going to be a bit more important around our house after this. I can't wait to party like a rock star! Or a least, a CANCER SURVIVOR!

Pathology Report

2011-02-25T23:07:00.000-07:00

We got a call from Dr. Karwande's nurse today. The pathology is back on the tumors resected last week from Trent's lung. All three tumors were no longer viable which means that the chemotherapy did it's job. All the tumors were necrotic tissue so there is definitivelyl no more cancer in Trent's lungs. We are possibly going to have a PET scan in the next couple of weeks instead of waiting until April. Then we will know for sure if there is any cancer anywhere else. We don't have any reason to believe there is any more cancer but the scan will confirm this. We are kind of holding off on the big celebration and victory dance until the scans are done.

Trent has been feeling kinda yucky the past few days. He was doing really good at the first of the week but has had a few bad days. Hopefully that is short-lived and he gets feeling better soon.

Home from the Hospital

2011-02-21T17:11:00.003-07:00

Trent was discharged from the hospital yesterday afternoon, much sooner than expected. He is doing so well! He has some pretty severe pain when he coughs but we keep encouraging him to do it anyway. In the hospital they gave him an inhalation sporometer, or something like that, to exercise his lungs. He immediately figured out that if he covered the holes he could exceed his goal by four times. He impressed several people with how strong his lungs were before he revealed his sneaky little trick! After surgery he was almost immediately back to his joking. It was really nice to see that.

While Trent was in ICU he was hooked up to a million and one tubes and wires. Being "tied" down to his bed was especially annoying to him and he kind of had a panic attack. His nurse, John, was so great with him. He did the best he could to get all the tubes taken out as soon as possible. By Friday morning he was off the epidural and the pain pump. Then he had a little problem with his foley catheter being blocked. John quickly took that out and Trent was instantly "relieved" :) Shortly after that John took out the chest tubes. There were two of them and they were each about 16" long! They came out way better than the tubes from the hip surgery.   Then Bruce, the physical therapist came in and got Trent walking around the ICU so he could graduate to PCU. He had to teach Trent how to get himself out of bed using his body as a pendulum of sorts. It took a little practice but Trent pretty much has it down. I help him a little because he is still very sore but he is getting better and better all the time. I was quite surprised how much better he looked to me after the surgery. Dr. Karwande commented on that too. He compared what Trent looked like the first time we met and it really was a dramatic difference. Dr. Karwande just shook his head and said that Trent is a fighter and could go to PCU. Darn right he is a fighter!

He moved up to PCU on Friday afternoon.  I stayed with him after that. I am glad I did because at 4:00 in the morning someone came looking to draw blood from "Elaine". I had to shoo her out of the room cause she had the wrong patient!

While in PCU the only thing he was hooked to was the oxygen. It was so nice! They even accessed his port so they could take out the peripheal IV.   That was really nice for Trent.  He hates having tubes in his hands because it makes them so sore. While in the hospital he put on 20-25 pounds of water weight. We are still in the process of getting that all off. His legs were enormous! We put some TED hose on and that helped some but his thighs gave new meaning to the term "Thundo Thighs"! Even while he was walking he was irritated because of the "Chub Rub". But all in all he recovered pretty quickly because he only ended up being in PCU until Sunday afternoon. We were both really excited to get out of the hospital. I really hope that is a door closed that we never have to open again.

When we got home the kids were pretty excited to see us. They had made a big "Welcome Home" poster and had drawn little pictures of all the things they wanted to do with Trent now. It was really cute. Trent is trying to get some good rest and a little exercise. Right now I am listening to his voice from the other room and it sounds strong again. Little by little we are going to get our daddy back.

Successful Surgery!

2011-02-17T09:55:00.001-07:00

After many hours of waiting yesterday, it is over. The cancer is OUT! We hesitate to proclaim that Trent is "Cancer Free" until he has had a full body scan, probably in one month. But for now, we are shouting from the rooftops, THE CANCER IS OUT OF TRENT'S LUNGS!

We were schedule for surgery yesterday at 12:15pm. However, the case before us was a very difficult heart valve replacement and they had a few problems. So, we waited, and waited, and waited. Finally at 7:00 pm they took Trent and I both down to the pre-surgery room. I am sure Trent was FAMISHED by then! But, in true Trent style, he was not complaining one bit. We were informed what anesthetic procedures they would use and that Trent would have an epidural. Surprisingly, Trent was pretty nervous for the epidural. They gave him some loopy meds so he would be nice and calm while they inserted the epidural though. After they had fully explained everything to us they wheeled him away. I didn't even shed a tear. I really felt very calm and at peace.

During surgery I watched the Jazz game with my Dad, Josh, Joellynn, Tracy, Doug, and Rita. It was nice to have something else to concentrate on. We were told it would be at least 2 1/2 hours of surgery, possibly 6-8. But just two hours later the nurse came out and said they were done and that Dr. Karwande would be out soon to talk to me. Dr. Karwande brought me a picture of the tumors as I had requested. It was so comforting to see them on the outside of his body, even if it is a little gruesome looking for some. I don't mind looking at the pictures at all by everyone else, including Trent, is a little grossed out by it. To me it is closure. All the time I have seen those little blobs on the scans they have seemed abstract. But to see them for real is different. I guess I am still trying to wrap my brain around the fact that those little things tried to take my husband's life.

Two different nurses told me they had removed three tumors during surgery. That really concerned me because there were five on the last scan. But when Dr. Karwande confirmed that he removed three tumors from Trent's right lung it finally dawned on me. We finally got the miracle we had been praying for. Every scan day we would say to each other, "Wouldn't it be a miracle if the tumors were just not even there today?" It happened. Another miracle to add to our ever growing stack of miracles. The two tumors in Trent's left lung were gone. Dr. Karwande said his lung looked "pristine". As he spoke I just bawled. I asked him specifically, "Is Trent cancer free?" He said it appears so but the body scan would confirm that. He checked over both lungs very carefully and said that the two smaller tumors removed looked to be necrotic tissue. They were no longer viable. They will all be sent to pathology and we will know for sure in about four days. He said Trent did very well during surgery and I would be able to see him shortly. A few minutes after that the anesthesiologist came out and said Trent was awake and said to tell me he loved me. I wanted to run jump on Trent right that second but I am sure that would have been a little painful so I politely restrained myself. :)

We all got to go see him just after that. He was alert but in a lot of pain. He kept pushing his pain button every couple of seconds. I cried and whispered in his ear that all the cancer was gone. We made it! If not for all those tubes and the fact that he had just had his chest cracked wide open, I would have been in that bed with him squeezing him like crazy! He just kept saying, "I love you, I love you." Then he looked me right in the eyes and said, "Just remember the pickles." Uh...I don't know what that means, and neither does he. Must be one of those weirdo things you come up with right after being loaded to the hilt with all kinds of anesthesia and pain meds!

We stayed with him for about 1/2 hour and then everyone left. I went out to my car alone and had the most gut-wrenching, soul cleansing cry for about ten minutes. It was like a million pounds of weight had been lifted from my shoulders. I thanked my Heavenly Father over and over for allowing another miracle to be dropped down on our family. I am in absolute awe of the love He has for us. There really are not words enough to express it adequately.

I finally made it to Josh's house and shortly after I got there the nurse from ICU called me. She said Trent wanted to talk to me. Trent had called to make sure I got there okay. Oh my goodness! He has just had his chest cracked wide open and he is still concerned about me driving six blocks in the evening snow! It just doesn't get better than this!

A huge, heartfelt thank you to ALL of you who have been fasting and praying for this day! I know Trent's name was in at least 16 different temples yesterday. There is no doubt about the power of prayer. It is tremendous and has changed our lives permanently.

Just My Thoughts

2011-02-16T15:29:00.000-07:00

I don't want to take away from Trent's post so please read on down the page. I just really wanted to share some of my feelings and some memories prior to surgery.

We have looked forward to this day for so long. We have wished it to come so fast but I almost wanted it to never come. It is going to be such a difficult surgery. I have to push the reality of it all to the back of my mind so I don't go crazy. Trent has been a fighter. He is so strong. I am beyond lucky to be his wife. We have come so far and have this last hurdle to jump. I hope there is enough oompf in both of us to clear it without knocking it down! :)

We have been so blessed to have Dr. Karwande as our surgeon. It is just one more time that we can clearly see the hand of the Lord in our lives. We are being directed and guided through this trial, no doubt about it.

As we sit now, waiting for surgery to start, my mind is flooded with memories. We have shared so many wonderful times and so many more lay ahead. I love Trent so much more today than even last week! Sunday when he walked into Sacrament meeting I looked up as he came in and my heart skipped a beat. Still, after almost 16 years, bald head, no eyebrows, gimpy walk, and pale skin, he is still the most handsome man I have ever seen. I am eternally grateful for him and all he does for me and our children. We truly have a little piece of heaven on earth.

Last night before we left for the hospital, we gathered the family together for prayer. As we talked Trent was expressing his love to all of us and he got emotional. Jonathan jumped up on the bed and said, "I sorry Trent, I sorry." He and Mallory took turns rubbing his back and patting his shoulder. It was very tender. We are all just a little nervous. I think we would be naive if we weren't. But the overwhelming feeling has been peace. Peace in knowing that we are placing Trent in very capable hands, hands that have been prayed for and fasted for, to perform beyond their natural ability. Above all, there is such peace knowing that the Lord is watching over us. We are so grateful for all of the prayers, fasting, and concern for us. We can feel the difference the prayers have made for us. No matter what the outcome, I know the Lord is mindful of our little family and the struggles we have faced this year. We have learned many, many lessons and they have been life changing.

Praise You In The Storm

2011-02-15T14:54:00.004-07:00

It's rather unusual that I'm able to do much of anything normal, especially like posting on our blog. I have, for much of this last year, desperately wanted to share my thoughts, feelings, and testimony with all of you but the cancer that has ravaged my body to the brink of existence has greatly hampered my abilities. It truly seems that I have been ill to the point where I don't even recognize who I am because of the pain, nausea, vomiting, etc., that have taken a significant toll both physically and emotionally on my body. Interestingly enough, I have been strengthened spiritually in tremendous ways that have helped sustain me with the determination to see this through, no matter what the outcome. I have told people that regardless of whether it's good, bad, or indifferent, we'll be okay. I absolutely know that to be the truth.

It may appear bleak when great adversity is thrust upon us as mortal beings but with the limitless devotion and love of our Heavenly Father, all things are possible. I have a great respect for Him and the Plan of Salvation that was laid out to perfection by the Savior. I sincerely hope that we all get to know Him and love Him for His amazing sacrifice that is available to everyone. I have had a stunning image placed in my mind of the scripture reference to the Second Coming of the Savior that states "every knee shall bow and every tongue confess, that Jesus is the Christ" D&C 88: 104. I would love for that event to unfold now. It would be remarkable to have Him here on earth once again to establish peace and heal the wounds of us all. I know that it's through Jesus alone that all things are possible.

I am more like myself now than at any other time and it coincidentally lands on the evening of a major thoracic surgery. What a stroke of good timing! I love my family, friends, and the many strangers who have made countless sacrifices on my behalf. I am eternally indebted to my companion, my love, Holly. She has born the weight of this in stoic fashion. I will love her forever and am full of admiration for everything she has done.

This event has been completely challenging unlike any I would have expected in my lifetime but my faith has been enlightened and my hope has vastly improved. I heard this song on the radio just this afternoon and it speaks volumes about how I have viewed this entire ordeal. May those who read these words be inspired like I have to see life's challenges through. God speed.

Praise You In This Storm
Casting Crowns
Lifesong
I was sure by now
God, You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

Chorus:
I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry
You raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear You whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The maker of Heaven and Earth

Definite Date Set!

2011-02-06T23:08:00.000-07:00

We have the surgery date! February 16th Trent will have surgery to remove the remaining five tumors and anything else that is lurking in those lungs of his! He is finally on the upswing from chemotherapy. He was able to go to an amazing performance by the BYU Ballroom dancers last night. It was actually really fun, I think he was just glad to get out of the house. We also took Mallory and Jarom with us. One of the numbers was to a song called "To Dance with My Father Again". Halfway through the song Mallory leaned over and kissed Trent on the cheek and whispered, "I love you, Dad." How sweet! She is a sentimental little cutie.

After the performance we went to WalMart for a few groceries. I can always tell when he is feeling better because all he wants is food! I was thinking we were stopping for just a few things but we ended up going down almost every aisle. It is especially bad because those darn electric wheelchairs are SO SLOW! I usually end up pushing it to make it go faster. I am still a little bugged by all the people who stare. I am getting used to it but sometimes I would like to just say, "Yeah, he has cancer, move on!" It is a little awkward to watch people do a double- or triple-take. Maybe that will lessen when he has hair.

Trent made it to church today and he did pretty good. He has had little bouts with pain and some pretty severe stomach pain, but he is doing so much better today than even yesterday. Hopefully he will enjoy the next ten days of feeling pretty well before the surgery. I can only imagine the stomach pain is from all the pain medicine he has been on for the last year. It was about this time last year that he began really feeling the fatigue from undiagnosed cancer. It has been a long time since we have seen a Dad that wasn't tired and feeling yucky. I am really looking forward to a time when he gets up in the morning and gets dressed. This is probably going to sound dumb but I miss making my bed! I have probably only made my bed about 6 times in the last year. He never gets out of bed so it is always unmade. That is such a small thing but in our lives it means so much. It means we have a daddy and a husband who FEELS WELL! It means he has something to do besides lay in bed, sick. I can't wait for that day! If all goes well, that day is right around the corner.

Surgery is Coming!

2011-02-02T09:06:00.002-07:00

We met with Dr. Karwande yesterday. It was quite the ordeal getting Trent down there. This is his lowest point in his chemo cycle and he was pretty dead to the world the whole time. Dr. Karwande is supposed to be off work this whole week but he met with us because Trent is a cancer patient and he gives those priority. He looked at the scans and decided he would do the surgery. The tumors are all near vessels but apparently that is not as big of a deal as I thought They must not be sitting on vessels. Dr. Karwande said the major deciding factor in doing the surgery was the fact that no new lesions had popped up throughout Trent's treatment. He said the best surgery for Trent is to slice the breastbone and remove tumors from both lungs at the same time. He did bring up the possibility of watching the two small nodules in the left lung but ultimately decided he would probably just take them out. He could only see 5 tumors on the scan-that's down from the 9-12 that we started with. There is a chance that there will be more or less when he gets in there so he will just have to feel around and take anything that is suspicious. He will not remove any lobes of Trent's lungs, partly because he feels like he can get the tumors with taking too much tissue, and partly because in the event that Trent ever needs this surgery in the future, there needs to be as much lung as possible to remove at that time if needed. We are working out a few details with the insurance and as soon as we have that taken care of we will schedule surgery. We are still thinking that will be in the middle of February. So, Trent will have a couple of weeks from now to get stronger. He is hanging on by the skin of his teeth right now. A couple of weeks will make a big difference for him. We are anticipating about a one week hospital stay and then 2-4 weeks of recovery. That is way better than we thought it would be. We were really expecting more time in the hospital and about two months to recover.

We are still cautiously optimistic about everything. It almost seems too good to be true, like, if I get my hopes up it will jinx us and something bad will happen. Dr. Karwande said that Trent was between a rock and a hard place. Well, duh! All we have faced are "hard places". But, we have had awesome support and Heavenly Father has watched over and protected us the whole way. He didn't make it easy, but He has given us the strength to do it. We just need a little more...

Crazy Week

2011-01-30T23:24:00.000-07:00

Last week we started Round 11. The very next day was a crazy one. However, this time is was not because of Trent. Guess who, yep Jonathan-again. I was just finishing up work and taking care of a few bills when Mom brought Jonathan to me with an empty package of pills. She had no idea what it was but I did. It was Trent's nausea pills, individually wrapped in foil packaging. I can NEVER get those darned things open but somehow Jonathan did and started downing them. At first I panicked, then was like, "Can I handle one more thing right now?". I pushed all that aside and dialed poison control. I could only guess at how many pills Jonathan had taken but, as many as four possibly. I know he had at least one because I could see it in his teeth. It was Ondansetron, a sweet little pill that you dissolve under your tongue to get to your bloodstream fast. Great.   Poison control couldn't give me a lot of info on what might happen to him so he sent us to the ER.  I scooped up Jonny and headed out. When we got to the ER we were fourth in line behind a cardiac patient, a little girl with croup, and someone who had slashed his finger. I was a little miffed at first because of course I thought my emergency was the most serious. But in reality, it wasn't. As I watched Jonny play I knew he would be okay if he had to wait a little bit. But while we were waiting he stood up on the chair and took one step-right in between the seats and went crashing down. Luckily I caught him by his coat before he hit the floor. At least I was already in the ER in case he needed stitches too!

The doctor came out and assured me the levels of drugs Jonathan had in his system were not toxic and that of all the drugs he could have taken Ondansetron was pretty safe. Then he added, "They use this drug in really massive doses for chemo patients". Uh..yep, I know.

We ended up hanging out and watching Shrek 3 for a couple of hours so Jonny could be monitored. He didn't really ever show any symptoms except being little sick to his stomach and reaching for things that weren't there. I don't know what got into him but he started peeing all over the place. He peed his pants several times before we got out of there. I was too tired to even be ticked. When we got home I pulled him out of the car and that's when he lost it. He screamed like crazy because I didn't let him step out of the car by himself. That was it. I was done. I mechanically scooped him up and dragged him to the tub. I think he screamed for ten minutes, at least. I didn't even care. I could see he was going to be fine and I didn't even bother to try to console him. I guess the mommy in me had already checked out at that point.

The first week of Round 11 was actually better than we thought it would be. Trent struggled a little with some pain but mostly sailed right through. He even made it to the Temple just two days after chemo. That was a fiasco though. We only wanted him to go if he could not be a spectacle all night. Yeah right. It all started when he brought an expired recommend. Good thing my dad was with us and just happens to be our Stake President. Then he went upstairs when he should have done down, and I never saw him come out of the dressing room. I waited forever! I was sure he had fallen somewhere.   When I finally found him they took us to the room before everyone else to wait. We had to sit together because he was so weak and they escorted us first through the end of the session. Talk about all eyes on Trent and Holly. Sheesh.

On Wednesday he got the second dose of chemo for Round 11, also known as THE LAST CHEMO FOR TRENT! They sang to him and gave him a cute blanket as his graduation gift. The plan now is to see the surgeon and hope he will do the surgery. We meet with him on Tuesday and are very anxious to see what he has to say. This surgery is going to be very pricey and it is out of network for us. I am working on trying to get things worked out so we don't get surprised by the bills afterward. We have the Financial Counselor at the Huntsman working on it too. Hopefully her expertise will find a way to make it all happen.

Taxotere has really done a number on Trent this week. He gets really emotional and angry when he is on this drug. I have to remember it is just the chemo when he acts crazy and not let it affect me. That's kind of hard to do. But it always goes away and Trent is Trent again.

Today he tried to go to church. He looked terrible. He only made it through the sacrament before he had to leave. He basically fell out into the aisle while I was trying to catch him and get Jonathan to come with us. He made it out to the hall before he fell down into a classroom. He just laid there not wanting to move. He wanted me to shut the door and come get him after it was over. Finally as I was trying to hoist him up by myself a guy asked if I needed help. Yep, that would be nice. We got him outside and I ran for the car-did I mention that HE drove the car over? Yikes! I didn't have any idea he was planning on that. I finally got him home and got him to bed. What a mess. I wish he wouldn't push himself to do stuff like that because it always turns out crazy and everyone gets to see it. How dramatic.

So anyway, this week our meeting with the surgeon will answer many questions and set a clear plan of action.  We are crossing our fingers and keeping the prayers going up.

Sigh of Relief and Jump for Joy!

2011-01-19T22:18:00.000-07:00

More good news today! The tumors are still shrinking! We are so thrilled to hear this news today. What a relief! Trent admitted he did not think that was what we were going to hear today. I KNEW he was keeping something from me.

We had the scan at about 9:00 this morning. They had to do it twice because Trent coughed. After he was done the tech said it looked good. We weren't sure whether she meant the picture or the tumors. Then began the waiting game. Right before we headed to see Dr. Gouw we ran into our former bishop from Providence. It was good to see him and his wife and see that he is doing well too. We visited for a few minutes and shared stories of all the benefits that have come from both of our situations. Then we dashed off to hear the results. We even rode the golf cart all the way down the hall. That made a big difference for Trent and I only felt a little sheepish. I felt like I should have been doing the pageant wave...you know, "elbow, elbow, wrist, wrist, wrist, fix the pearls and start again". I will have to practice up before we ride the cart again!

We were waiting for Dr. Gouw and Grace popped her head in the door and just sat there smiling. Then she finally blurted out, "You do realize that when you see my smiling face it is good news, right?!" YEAH! Three times in a row! That took the pressure off, bigtime. When Dr. Gouw came we learned that he would be sending the scans to a thoracic surgeon in the valley. The tumors had shrunk enough that he felt surgery would now be an option. The small tumors that were BB size are now only specks on the scan, the smaller of the big tumors is the size of skittle maybe, it used to be the size of a shooter marble. And the big tumor that started out larger than a golf ball is now only the size of a shooter marble. Hallelujah! There also doesn't appear to be any new lesions and all the surrounding organs appear normal.

So we started Round 11 of chemo today. Trent will finish this round and probably see the surgeon around the 8th of February. IF surgery is a go he will probably be scheduled within the week following the visit with the surgeon. Hopefully the surgery will NOT include cutting through the breastbone. We are still hoping the doctor can go in through Trent's back and side. Well see...

While Trent was being infused Dr. Jones and his nurse, Nancy stopped by for a visit. They were all smiles and so surprised that Trent had made it this far. We are learning more and more every time we talk to the doctors that they really had very little hope for Trent when we first arrived. Dr. Jones said that with as much disease and as advanced as it was, Trent shouldn't be alive. MIRACLES DO HAPPEN!

We did take about forty minutes to celebrate with a quick little lunch/dinner at the Olive Garden on the way home. I know, lame. But we will have to do some serious celebrating when he is all better!

We are expecting Round 11 to completely kick Trent's bootie. Not looking forward to that. It has already begun. As I type this Trent is moaning and writhing in pain in his bed. Hopefully we are nearing the end of this trial...hopefully.

So, thank you all again for all of your prayers, fasting, love, and support. We are experiencing a miracle and are so grateful for it!

Another SCAN tomorrow!

2011-01-18T17:18:00.000-07:00

I am a little surprised the time has flown by so quickly. Tomorrow Trent is having another chest CT to evaluate the tumors in his lungs. The last two scans have shown significant shrinking and we really hope we will see that tomorrow too. There are many questions to be answered tomorrow and many more questions raised. Are we ready for surgery? Can Trent handle surgery? Are the tumors operable? Can Trent handle two more rounds of chemotherapy? Yikes! It is like overload when I think about all the possibilities. Some are ugly, some are not as ugly. But they are all ugly. Cancer is ugly. That's why we are going to get rid of it once and for all and move on with life!

Trent is still in bed from this last round. He has only been out of bed a couple of times in the last three weeks. He has been having a lot of stomach pain and more severe bouts with chest pain. Honestly, that scares me, ALOT! But, I have to just think that the stomach pain is from all the medication he is on and the chest pain is the feeling of cancer being kicked out of his body! I know it scares Trent too but he won't say it out loud because then I would have real reason to be scared.

I think that the adversary works extra hard on us when we are vulnerable. He starts tearing apart everything that is good or positive and replaces it with feelings of inadequecy and doubt. I have been having a hard time with that this past couple of weeks and have had to sit back and think, "What has changed?" Nothing, except that we are coming up on a very stressful time and are very vulnerable right now. Prime opportunity to be ripped to shreds.

But little by little, the Lord has reminded me that He is near and we are being cared for. I am reminded of words or phrases or feelings that have come as answers to prayer in the past. The blessings Trent has received are still true and valid. I have to hang on to that-with every fiber of my being. Cancer is not the only thing that we are fighting. We are fighting the adversary. Every day. And that, as well as Cancer, is a battle we are determined to win.

Just an update

2011-01-08T17:00:00.000-07:00

This second dose of round ten has hit Trent pretty hard. He has endured a lot of intense pain this week. We have just done our best to treat it the best we can and keep it under control as much as possible. Today is really the first day he has been out of bed. He is still very tired and has spurts of feeling good, but mostly he is just feeling pretty yucky. We are getting anxious and excited for the next scan. If things are still shrinking we will hopefully talk to a thoracic surgeon. If they are still the same they may want to do surgery immediately. They may give Trent a break for a while and then do more chemotherapy. We are really hoping that things are still shrinking so we can do surgery and get them out. The surgery is really scary and I don't like to think about that much, but it is a better thought than not being able to do anything about the tumors. Trent is getting really worn down from all of the chemotherapy and I wonder how much more he can take. We are not certain at this point that the cancer has not spread to other parts of his body. I assume there will be a full body scan sometime soon to make sure it is only in the lungs still. We are not counting out the possibility that the tumors will be completely gone :) :) when we have the next scan. Miracles DO happen and I really hope we get that one! But either way, we will just keep trucking along.