A chemical crutch

regular
post-BMT
It has been a tough week fighting a flu and changing medications.
Author

Colin C.

Published

January 11, 2024

The days since my last post have been rough. Whatever virus we all picked up is still lingering. Sam and I are mostly past it, and Tina is improving. Unfortunately, this cold also caused some confusion as the team cared for Sam – it was more difficult to discern what was happening with him while he was battling this illness.

Looking back

Sam’s medical progress

The challenges

Following New Year’s it was like someone flipped a switch in Sam … in that the power was turned off. Where prior Jan. 1st Sam had increasing stamina and activity levels, this past week-and-a-half he had no energy and spent most days in bed. The virus we all had complicated the picture. We did have a couple clinic appointments but making any changes were difficult as it was hard to know what was happening in Sam’s body apart from the illness.

Last Wednesday there was a decision to stop one of the steroids used during BMT. Initially, this did not seem to affect Sam … but at the time all he was doing was sleeping (>90% of the time). By the end of the weekend, Sam was mostly done with the cold but he was still sleeping… and not very responsive. It turns out the steroid was a chemical crutch and we had pulled in out from under him.

The next clinic appointment, earlier this week, a substitute steroid was introduced. Sam is now more conscious and is beginning to get moving again.

The positive

Despite the confusion and challenges above Sam has made some good progress having successfully dropped a number of medications from his list.

Symptoms of GVHD have been minimal with minor rashes. The medical team remains vigilant watching out for this.

Visits

  • It was great to see my parents this past week. They had a couple windows of opportunity to chat with Sam.

  • Tina and I were able to get out for a nice meal with Kevin and Shannon.

Upcoming

  • We will continue with the usual clinic visits to monitor Sam’s progress.

  • Sam will be seen Endrocrinology Team. This team specializes in steroids, hormones and all of the glands in our bodies that produce them. It is not uncommon for someone who has been on steroids and then stops (e.g. Sam for his BMT) to have issues producing their own hormones. I expect that this team will examine Sam to determine what hormones he may need in the short-term, consider strategies for getting his own system jump-started, and worst case to determine if there has been any damage to his glands.

  • There is talk of removing Sam’s central line!

  • All of the pre-BMT baseline tests will be completed

Victories and concerns

  • It has been a hard week watching our son sleep most day and not understanding why. His brief periods of wakefulness re-assured us that he was still in-there. This was stressful and exhausting for Tina and I. We now have some direction and started on some supports for him. The biggest underlying concern is the return of his body’s ability to produce and regulate natural hormone levels.

  • Sam has gotten past the his cold. His new immune system beat it back and we did not have to go into hospital. Our first challenge of 2024 seems to have been exposure to a flu. Sam has been feeling rough, with higher pain levels, and lots of fatigue. We initially attributed this as a response to increased activity levels … but then Tina and I started battling colds.

  • We have had an great holiday season celebrating Christmas, Tina’s birthday, and New Years with family in the area.

  • We are no longer having medical discussions about upcoming treatments. Discussions are now about weaning medications, removing the central line, and preparations to return home!

  • New blood cells in Sam’s body are all from the donor! Sam’s bone marrow is pumping-out/generating new blood! The engraftment process is working! We have seen Sam’s numbers come up and now stabilize!

  • We very thankful for the successful delivery and engraftment of the donated stems cells! To whoever made this donation I cannot thank you enough.

  • We are thankful to the medical team who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and care give us great confidence.

  • Thankful for friends who have chosen to meet regularly to pray for Sam. If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.

  • There is always concern if the cancer remains. We long for the day when Sam is clear of this disease. A PET scan will be done in February to evaluate how the cancer has been impacted by all the treatments. The expectation is that any remaining cancer, following the chemo and radiation therapies, will be removed by the newly transplanted immune system.