Beginning of Round 3

Round 3 will be like the first two rounds. (But after this, there will be some changes to the schedule.)
1st week - overnight stay in hospital
2nd week - half day
3rd week - 6 day stay in hospital

Round 3 started Monday and we got home yesterday.  It was nice that John had had a two week break; he felt pretty good going into the hospital and coming home from it.  Coming home not sick was nice for me - I didn't have to worry about him getting sick from my driving.

We found out that chemo will not stop during radiation.  That was hard for John to hear.  He gets the side effects of both at the same time.  We will meet again with the radiation team next Monday.  I think that is the appointment where they are going to make his mask to mark all the spots they want to hit with the radiation.

Both times John has been in the hospital for fevers have been really hard on us because they haven't found any infections but we have to stay for undetermined amounts of time.  They don't let him go home until his white blood counts come back up to reasonable levels and so it's draw blood in the morning, wait for the results, if they are bad we have to stay and they won't test his blood until the next day.  And so we are stuck in that cycle until whatever day his blood count decides to recover. BUT during the first fever, John got some mouth swish that cured his mouth sores and during the second fever, he got some blood pressure pills that have really helped with the dizziness/blacking out.  So the last week and half John has been able to get around without help! That has been SO nice for both of us!

Because John has started having fevers, his doctor decided to back off the chemo a little bit.  This round, John got 90% of the dose that he had the last two rounds.  The goal is that this will prevent him from getting more fevers and continually delaying his chemo treatments.  The short delays he has had so far shouldn't negatively impact the progress that the chemo should be making.  However, if he is regularly delaying chemo then it wouldn't be as effective.  It is better to stay on schedule and get a little less chemo than it is to get the full chemo with a lot of delays.  The sarcoma nurse said that most sarcoma patients (maybe even all of them) get decreases in the dose they are given, but it is best to start out and stay really aggressive for as long as the patient's body can handle it.

Good People

We are surrounded by good people everywhere. First there are our family and neighbors who so willingly come at a moments notice to help watch our boys, clean our house, make us dinners, and come visit in the hospital. Then there are people dropping off tons of paper products so we don't have to try to keep up with cleaning dishes. Then there are students at The U who get called to serve in a cancer branch at Huntsman who are full of love for their calling and the people they serve. It's such a blessing to have such wonderful people in our lives and to meet kind-hearted people.

And I can't forget the person who dropped off the skateboards for Carson and Thomas when I posted something funny on facebook that Carson said about buying money so he could have money to buy a skateboard!

Another fever

We went home from the last chemo treatment a week ago hoping for two weeks of our new normal life. I guess that means we should have expected to be at Huntsman again. John had to have his blood drawn yesterday. This is standard procedure so many days after having had chemo. The nurse called to say they recieved the blood but it was frozen so he asked us to get another lab drawn. We got it drawn and they called again to say that he tested neutropenic, which means he basically doesn't have an immune system. So John started his antibiotics and we had dinner and put the kids to bed. John had started to have chills during that time. He had a high temperature. So we called Huntsman and asked for permission to come here instead of IHC in provo. They worked something out and said we could. It was a long night of chills and chattering teeth and dizziness but the fever seems to be gone for now. He has had fluids, antibiotics, and a blood transfusion. He is starting to feel a little better, but still really tired.

Something I have been grateful for the past couple of weeks is how grateful I am that I lived downtown for two years. With John so sick and/or tired, I do all the driving and I get lost really easily. I'm so glad that I know my way around. Plus the drive up to Huntsman is so pretty with all the old trees and houses. It's nice to have fond memories of simpler days as I drive around up here.

Special thanks to Carly at LabCorp. When she found out the sample was frozen she took action to make sure that if John made it back in for another draw that they would get the results again before the end of the day.

Long Week

John had a lot of visitors this week in the hospital.  Grandparents, a cousin, a co-worker, and family.  Our house also had some cleaning visitors.  I can't wait to go home and enjoy a clean house for a few minutes - thanks to all my Thomas relatives who helped with that!!!!

This round of chemo started Wednesday evening.  We saw the doctor late morning, then went out for lunch before getting admitted for 6 days.  We got to our room and had all the usual conversations during check-in about all John's symptoms and the plan for the week, etc.  In between those nurse visits, we had plenty to do.  John's sister had organized a count-down chain for every hour.  Each chain had something written on it for us to read.  It was a great way to pass time and now we are on day 5 and still haven't made it halfway through.  The first couple days are pretty ok for John, but as the week goes on he gets more and more sick and tired. It has been fun to read jokes from our nieces, conference talks, uplifting quotes or songs, stories from old friends, etc.  Thank you all who participated from the bottoms of our hearts!  The nurses here were all impressed too!

Wednesday morning we met with John's oncologist.  I think her main advice was don't break any more bones! She addressed all our questions, but overall she said "Everything about your case is unique." The game plan is:
1. Finish this round tomorrow and go home. (fluids will be delivered to help him not get dehydrated again)
2. Rest and get John's body feeling "good" by Christmas.
3. Enjoy Christmas and the weekend
4. Then John will start and finish his third cycle and then do scans sometime in January to see where radiation could be beneficial.

Radiation will be a lot more driving back and forth, but hopefully it will be a nice break from chemo for a while? I think they said it would be about 6 weeks of radiation.

Our boys are loving life with everyone else and their toys.  Whenever we all get home, they have to test the waters to see how much they can or can't get away with.  That's good, I guess; it helps keep me on my toes. Daniel is crawling now!

Fever

John was supposed to start his long week today, but he ended up with a high fever late Saturday night.  The doctors have told him that if he ever has a fever over 100.5 to head to the hopsital.  We called the on-call doctor since it was the middle of the night and he said we could just go to the ER in Provo.  We went to the ER and they ran tests and couldn't find the source for the infection, so they admitted us.  They gave John a few different antibiotics and within probably 18 hours, his fever finally broke late afternoon on Sunday.  Today he is still getting more antibiotics and they will let him go home tomorrow.  Huntsman will start his long week chemo regimend on Wednesday.

This whole hospitalization for a fever seems kind of over-kill, but really where John's immune system is close to non-existent, then it could be very serious.  We are happy that the fever is gone and that he seems to be healthy again.  Because this delayed his long week, then it looks like his week off of treatments will end on Christmas, which means he should feel pretty good on Christmas Day.  Usually the day before a treatment, he feels the best as far as nausea and fatigue.  So that will be nice for him to be able to enjoy Christmas Day.

Fractured Spine & Blessings

John has pretty much been sick in bed for the past two weeks.  On Wednesday he felt ambitious enough to help with the laundry.  I didn't realize that he was helping me out and I left to run some errands.  I got a text asking me to come home. I had been gone all of four minutes.  During that four minutes, he was on his way to the laundry room and blacked out.  He doesn't remember what happened except he woke up in excruciating pain.  He crawled to bed (where his phone was and texted me) and stayed there the rest of the day and night with major back pain.

We made an appointment at Huntsman for him on Thursday morning. John's parents were so kind to come down at a moments notice to help John get to the hospital.  I'm strong, but I did have to break one of John's falls (after his back was already hurt) and he required someone a little stronger than me!

When we got to Huntsman, they decided he was dehydrated, which caused low blood pressure, which caused him to pass out when he stood up.  So they gave him IV fluids.  They x-rayed his back and found a hairline fracture on the L1 vertebrae. Thankfully that means it's not a major injury.  It should heal on it's own over the next couple months. 

We are so thankful to our home teacher who helped talk us through what to do and then came to visit John Wednesday night. 

We have had so many people help us out in so many ways big and small and they all make a huge impact on us.  We are so grateful to all the people in our lives.

One of our tender mercies: Before we knew if Huntsman could treat this type of cancer, we tried to set up appointments with MD Anderson in Houston and Memorial Sloan-Kettering in NY.  Nobody would see us until we had a more specific diagnosis than what we had.  The same week we were finally able to get an appointment with Huntsman, we got an appointment with Memorial Sloan.  We found out that Huntsman was confident in treating Rhabdo and so we couldn't decide if we should keep the appointment in NY or not.  We prayed about it and we were still uncertain if we should spend money on a second opinion or not.  We ended up going.  On the airplane there were some last minute seat changes.  John and I were reading through his cancer binder from Huntsman.  After a while the lady sitting next to us asked us about the binder and told us that she is a cancer survivor and has been off treatments for 1 year.  I was scared to hear her story, but she was so kind to us and it was good to hear the things she had to say.  I think it was a tender mercy to have met her and then I knew that going to NY would be a good thing.  And it really has been comforting to have a second doctor show confidence in our doctor's treatment plan.