Last chemo
Monday morning, Sam is in a deep and restful sleep. Today is his last day before the BMT, and yesterday was his last dose of chemotherapy. It all goes as planned this will have been his last dose ever, and I look forward to a time when the memories of chemotherapy fade. Chemo sucks.
Yesterday was going really well for Sam. He woke up with a bright attitude and energy to take on the day. He really enjoyed his visit with his friends Chase and Caleb C. Ahh so good to see friends – what a bright highlight to our day! Following this visit Sam had a big nap.
Unfortunately, Sam woke up shortly after shift change in piecing pain – the side effects of chemo had set in while he had slept. When he woke mucositis had had left his mouth as an open wound, raw and full of sores. I am sure as many of you know from your own experiences it is hard to watch your child in pain. It took some time to get new orders but solutions were found. We had to wait an abnormal amount of time for the pain specialist team… we had to wait because they were helping some other poor child with their pain.
Between 10pm and 1am we had some needed victories:
Sam, knowing that the mucositis will only get worse in the days ahead, requested a NG1 feeding tube. We all knew this would be needed and this was likely last best chance to install it without much difficulty. Our nursing team was successful at doing this.
The oncologist on-call was able to find a temporary pain solution.
The pain specialist team changed his main pain relieve medication and placed it on a constant infusion. Sam will also have a limited amount of addition pain relief available at the push of a button.
A special thanks to our nursing team who advocated for Sam and took on all of the additional task needed to get Sam comfortable. Thank you especially to Ana and Molly.
Upcoming today
This morning we will prepare all of our stuff for the transition into the BMT isolation room. It all needs to be cleaned and stored following special protocols. The medical and cleaning teams here at the hospital will ensure that Sam’s room is spotless. We will need to make sure that anything we bring in does not contaminate it.
Sam should also be able to have one last outside visitor before the move into isolation.
We expect the actual move into isolation will be sometime in the mid-afternoon.
Victories and concerns
There are many known and unknown concerns that will present themselves during the BMT process. Potential illness, establishment/engraftment of the donated bone-marrow/ stem cells. Numerous potential complications. We are thankful for a medical team that has a plan for all of it.
We are thankful that it seems Sam’s pain management is now under control, including options to address any spikes in pain.
We are thankful for friends that are able to visit.
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.
We have completed a major chapter in Sam’s treatment. With the completion of this last/ sixth round of chemotherapy and targeted radiation. We now pivot to the bone marrow transplant – this current and upcoming treatments brings hope of removal of the disease but also anxiety about both the challenging process and the potential for long term side effects. We hope and pray that this treatment will be effective in beating the cancer for life.
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.
We are continually thankful for our medical teams here. They continue to provide incredible care. They are always open to conversation and answering questions. They have been incredibly pro-active and I am glad we are prepared for the next steps.
In preparation for the BMT there are numerous items that need to come together:
- 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.
- 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.
- 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.
- 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.
We are thankful for the support of family and friends. Thank you for your notes of encouragement.
There is always concern as the cancer remains. We long for the day when Sam is clear of this disease.
Footnotes
Nasogastric tube to facilitate pumping liquid food (e.g. Boost) into Sam’s stomach.↩︎