The Wait Continues
I am writing from Sam’s room as my family sleeps. It was a good night last night as all of us slept the majority of it away.
We are now in the waiting period. Waiting for indications that the BMT is establishing in Sam’s body. In our instant world this is a long wait – 2-3 weeks of anticipation. This morning, knowing that many of you are wondering how we are doing – waiting in solidarity with us, I thought I would pass on a snapshot of what this waiting looks like.
Although in the big picture of Sam’s treatment we are waiting. In the day-to-day or hour-by-hour there can be a lot going on.
Regular check-ins
BMT and Oncology Doctors come and check on Sam daily and often twice daily and adjust orders as needed. They are satisfied with how Sam is doing as everything seems to be progressing normally. Medical orders from this team tend to address issues with:
- blood – as blood counts will continually drop until the graft takes. Sam has received and will receive numerous transfusions in the weeks ahead.
- bowels – mucositis has once again and as expected impacted Sam’s entire digestive track. However, where things were previously too slow now they are too fast.
- They also keep a watchful eye with daily physical exams.
The Acute Pain Services (APS) doctors visits 1-2 times per day. By the end of the previous six rounds of chemotherapy the suite of drugs was causing a lot of pain deep in Sam’s bones and muscles. In preparation, for the BMT Sam received higher doses of chemotherapy than he ever had previously. The APS ensures Sam is as comfortable as possible. Often his base pain management drugs are increased to match increasing pain levels.
A Nutritionist is here usually daily on weekdays. Sam receives his nutrition in a variety of ways. Eating is limited due to side effects of all the treatments but he still gets a little down. NG food delivery took a little while to get going but is going well now. Sam also receives TPN which is nutrition in a bag pumped directly into his bloodstream.
Physiotherapy regularly visits through the week. Providing exercises that are suited to how well Sam is feeling. Exercises range from squats and stretches outside the bed to simple muscle activations when he is too tired to leave the bed.
Incredible Nurses
It is the nurses that carry the weight of hour-by-hour activity. They ensure all of the orders from the various specialists are implemented. Sam now has over a dozen different pumps available to push drugs and nutrition into his body, and sometimes they are all running at the same time. On a regular basis alarms are going off (e.g. completion of a drug delivery, air-in-line). In addition, to ensuring everything is technically working, and that all the medical orders are being delivered, the nursing team is constantly available to trouble shoot with us and when needed advocate for changes to medical orders.
Mom, Dad, and Sam
What are we doing during all of these different activities? Given that Sam is living this experience and Tina and I are the ones constantly observing, the three of us are very much a part of each visit and conversation with the specialists. Tina and I are also Sam’s first line of assistance – calling nurses when alarms sound, and assisting Sam in an out of bed. Sam’s big task for each day is to have complete his shower. This is a chore and he needs to bring his IV system with him and it can burn the majority of his available energy.
When there are no task to do and when Sam is awake we are simply there to be with him: sit beside him, watch a show together, talk, and Sam often asks for prayer. Yesterday, Sam was able to enjoy watching the Vancouver vs. Seattle hockey game.
How are we doing? I think… tired but hopeful. This journey is exhausting at many levels and for Sam most of all. But we are also encouraged with how everything is progressing. It is like when you are on a long journey and the last hours of that journey seem to always take the longest. Or if you are hiking through the mountains, when you cross the final ridge and you can see home but is is still a long way to get there. The big tasks have now been done. We look forward, knowing that we will get back, but there are many miles still ahead.
Victories and concerns
Thankful that what Sam has experienced so far is within the normal for a BMT and that he has not had any complications.
We very thankful for the successful delivery 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.
We are thankful for all of the messages of encouragement and solidarity that we have received from all of you.
We are thankful that it seems Sam’s pain management is now mostly under control, including options to address any spikes in pain.
There will be ongoing concern are many known and unknown pitfalls that may present themselves during the BMT process. Potential illness, establishment/engraftment of the donated bone-marrow/ stem cells. Numerous potential complications.
It had been amazing to see Sam out from under the influence of chemotherapy. To see him return to strength of mind and to have capacity for more activity. It is hard to see him have this strength pulled away from him.
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.
It is flu season and covid is still out there. If any of us get sick it will add challenges to Sam and the BMT process as he will be entering a phase where he has no immune system for weeks.
In preparation for the BMT there are numerous items that need to come together:
- Done! Thank you!
Due to some timing and logistics we have had to change donors. We are thankful for this current donor who will provide a peripheral blood sample and is a good match for Sam. - Continuing: We are desiring that side effects both immediate and long-term would be limited. Ideally, that there would be no measurable side effects long term.
- Done!
The medical team has a huge coordination task ahead of them. From our meetings with them it seems all of the pieces are coming together, but with so many moving parts it is easy for things go wrong. - Done! Although it was rough at points the BMT conditioning was successful!
These last days leading up to the BMT are very busy with lots of drugs running all day. Concerns during this time are that everything is able to be delivered as planned and that Sam does not have any overly negative reactions to any of this.
- Done! Thank you!
We are thankful for the support of family and friends.
There is always concern as the cancer remains. We long for the day when Sam is clear of this disease.