Feed your FAITH and your fears will starve .

Friday, December 30, 2011

Not Such a Bad Day

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.

Thursday, December 29, 2011

Still Not Defeated

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 but 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. 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

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.

Saturday, December 24, 2011

Merry Christmas!

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!

Thursday, December 22, 2011

Serotonin Syndrome

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.

Monday, December 19, 2011

Home Sweet Home

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!


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.


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.  

Thursday, December 15, 2011

Another Pretty Good Day

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!

Wednesday, December 14, 2011

Very Good Day

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.

Tuesday, December 13, 2011

Really Resting, Finally

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!

Monday, December 12, 2011

Day 7-Change of Plans, Again

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? :)

Sunday, December 11, 2011

Day 6 in Boston, Sigh

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.

Saturday, December 10, 2011

Day 5 Was Not the Best in Boston

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.

Friday, December 9, 2011

Day 4 in Boston

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.

Thursday, December 8, 2011

Update on Trent

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.

Wednesday, December 7, 2011

We Almost Lost Him

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.

Sunday, December 4, 2011

One of the Hardest Weeks Yet

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.

Monday, November 28, 2011

Out of the Mouths of Babes

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!

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!

Tuesday, November 22, 2011

Very. Long. Day.

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.

Monday, November 21, 2011

Welcome to Boston!

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. 

Friday, November 18, 2011

Plan? We Have a Plan? Kind Of.

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.

Thursday, November 17, 2011

Another Big One

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.

Wednesday, November 16, 2011


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.