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!

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.

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. 



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.

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.

Recovery

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

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.

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

No News Is NOT Good News

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

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.