Again we wait
The past week has come and gone and in general it has been a good week for Sam (all things considered). The next wave of treatments and treatment planning has begun. Though we will need to wait several weeks before we know how well or if the treatments are working.
This past week’s medical journey
Just over a week ago, on Thursday, Sam was started on Nivolumab with the intention of ramping up his immune system to battle the cancer. We had expected to spend 3-4 nights in the hospital to monitor for potential adverse reactions to the drug. He did not have any adverse reactions! Sam was thrilled when the medical team offered to discharge him to leave hospital after one night.
On Friday morning, we made the quick trip down to BC Cancer where we met with the radiation oncologist. Initial discussions had suggested that radiation would only be used on the disease site in Sam’s back (T3 vertebrae). However, following a quick discussion the team at BC Cancer agreed to use radiation on all three of the new sites. To plan for this treatment, the radiation therapy team made some molds of Sam - his back and the front of his upper body - and then took him for a CT scan (this is a planning CT). These molds and measurements will ensure that Sam is in the exact same position during treatment – ensuring that the upcoming treatment is very precise.
Compared with my previous post, Sam’s health and pain levels have been quite stable with no significant pain spikes.
Next steps
- Nivolumab immune therapy
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This therapy is provided by IV once every two weeks. This coming Thursday (March 14) Sam will receive a second dose. This next dose will be double that of the first.
- Radiation therapy
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Targeted radiation of the three new disease sites will begin this coming Monday. Sam will receive a dose of radiation to each site every day for two weeks (10 business days). Assuming all goes well this will simply mean a short drive to BC Cancer clinic for the treatment and then a return to RMH.
- Results and effectiveness
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We are not going to know how any of these treatments are working for some time. It is too soon to tell if the immune therapy is working. Following radiation, we will need to wait a couple weeks for that treatment to take effect. … So we wait.
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For now the best indicator of how things are going is with Sam. How he is feeling. Where is pain levels are. How his body reacts to the treatments.
Life together
So how are we doing?
Last week, I felt beyond exhausted, physically and emotionally, this has been a long journey. Sam reminded me that we have been here five months longer than expected. He is right. The initial plan if everything had gone as expected/hoped would have seen us go home this past October. Next, the BMT process, should have seen us go home last week. Now, when are we going to get home? Simply, we just do not know.
In the meantime, we are enjoying life together. It is a simple life that includes medical care, meals, and time together. When Sam has the energy we get out of the building. Lately, he has enjoyed a trip to a local bookstore. In our room, Tina and I are thrilled when Sam has the energy to connect with friends and play some online games (which he has been able to do a couple times this week). Programs here at the Ronald McDonald House have been helpful. Sam has taken to playing the drums – I don’t know where he gets his rhythm from but he is a natural. I have enjoyed playing and learning a few new things on guitar. Tina has made it to a couple painting classes. We have also been able to connect with a number of other families including playing some board games together.
We are encouraged by visitors, Grace and Darren from Prince George, Tina’s Uncle Dave and Aunt Ruth originally from England but now in Abbotsford, and Tina’s family: siblings, Nana Mary, and Sam’s cousins are all in the Lower Mainland and we see some of them weekly.
One highlight from this past week was that we have moved to a larger room. This will allow us to enjoy our space more including providing some space for some anticipated guests.
Victories and concerns
Thankful that Sam has had a good week. Pain levels have been stable and generally easy to manage.
Sam has a chest cold. The upside is he has a new immune system to battle it. The downside, well it is a cold that is taking energy from him – energy we want him to have to battle the cancer.
The cancer remains and has spread to new areas in Sam’s body.
New battle strategies have been developed but carry some higher risks.
The new immunotherapy drugs will release Sam’s immune system to hit harder. Though we look forward to this pushing the cancer back, side effects of the new immune system attacking healthy tissues are also big concern.
We are thankful that Sam has not had any adverse reactions to this drug. The next dose will be double the first so concerns remain.Targeted radiation therapy begins next week. We are thankful this tool can be used to reduce the burden of disease on Sam. However, radiation also comes with risks.
We very thankful for the successful delivery and engraftment of the donated stems cells! To whoever made this donation We 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 that the cancer remains. We long for the day when Sam is clear of this disease.