On a knife’s edge
In my last post I tried to keep things to a clinical picture. Here I will attempt to capture a little of what it is to live through this cancer journey and to provide more detail on what the upcoming process may look like.
From the latest results, last post, It feels like we are walking along a knife’s edge separating life and hope on the one side, from doubt, fear, and death on the other. This is not simply a feeling. This is a reality as the results are not great, though they are good enough to keep going.
Good results? Good enough results
Are the results good? Yes – in that we get to keep going, and that there is hope that the treatment will work. However, there are no assurances, and Sam is not in an ideal state for entering the next phases of treatment.
Sam’s cancer is unique, and our medical team is using their best judgment, but none of them have battled this cancer before. They have found a single reference to it, but that has only provided a little guidance.
The medical team is battling hard for Sam and their strategies to date have initially reduced, and more recently kept the cancer from growing. However, compared with known cancers this cancer has not responded as well as any of us have wanted.
Not an ideal plan
We are moving forward with a bone-marrow-transplant (BMT), but we are not in an ideal situation. Ideally, and for best results, when moving to BMT the medical team would like the cancer to be non-detectable. With Sam, starting from where he was back in April, the cancerous mass has been reduced in size, but a significant mass remains. It is not operable as it is in the lymphatic system; although it can be located, as I understand it, it is too amorphous and intertwined within his healthy tissues and bear vital organs (e.g. heart and lungs).
Challenges ahead
In the weeks ahead Sam will be facing a number of challenges (see The Plan).
- Radiation therapy – phase 1: Targeted radiation
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The objective here is to directly attack the cancer and destroy as much as possible. There are both immediate and long term challenges. The radiation oncologist is trying to balance attacking the cancer while protecting the adjacent lungs which are very sensitive to radiation damage. In the short term there will be fatigue and pain – think of a time that you had a bad sun burn. Now take that sunburn and put it on the inside of your body. Sam may feel it most in his throat.
- Radiation therapy – phase 2: Total body irradiation (TBI)
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Next, Sam will undergo three days of total body radiation (TBI). This radiation will not target his cancer, rather it is undertaken to condition his body for the upcoming bone marrow transplant. TBI has the objective of permanently destroying Sam’s native immune system so that his immune system will not compete with the transplant.
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There is a long list of potential side effects from the two radiation treatments. A few of these include: permanent scarring of the lungs, impacts on the thyroid, heart disease, changes to metabolism, secondary cancers, and others. Needless to say this can be scary.
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This step, in conjunction with the following BMT Chemotherapy, mark a point of no return. Once these steps are initiated a transplant must happen for Sam to ever have an immune system again.
- BMT Chemotherapy
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The previous chemotherapy that Sam has had focused on targeting and removing the disease. This upcoming chemotherapy has a different objective. In conjunction with TBI it will be used to remove Sam’s own immune system. Following this chemotherapy any cells that produce/create blood will have been killed, and Sam’s bone marrow will be ready to receive the transplant. As with most chemotherapy drugs this treatment will likely make Sam feel ill.
- The transplant/graft
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On Nov. 14th Sam is scheduled to receive the donated bone marrow. The donated cells will need to establish or engraft to start providing Sam his new immune system. In the 2-3 weeks following receiving the transplant we will wait in anticipation for signs that the graft is taking hold. The whole transplant process will take place in an isolation room – Sam will not be allowed to leave until his new immune system takes hold. Tina and I will be able to gown-up and be with him.
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This will be a hard number of weeks. Given the prior steps Sam will likely feel horrible for numerous weeks. It is highly likely that he will need significant intravenous supports for management of pain, nausea, engraftment of the new immune system, hydration, nutrition, and then potentially additional medication should he become ill without an immune system to support him. To provide all of these supports Sam may need upward of 15 different intravenous lines to all be connected at once. His current central lines should support most of this.
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Once the graft takes hold it will start generating Sam’s new immune system and start fighting for him, including battling the cancer. However, this is a foreign immune system and steps will need to be taken ensure that the graft does not attack Sam – potential graft versus host disease. The graft also must remain aggressive enough to continually attach the cancer.
Choosing hope
There are many reasons to be consumed by fear – to allow the beast of Despair to have a foothold in our lives. Sure we have our moments of anxiety – but we choose hope. Sam remains a champion. We have also laid out some great ideas for his time in isolation – I hope he will feel well enough to take part in the activities we have planned.
We invite you to choose hope with us. It does make this journey easier knowing that you are there with us in mind and spirit. Please continue in your commitment to care and prayer.
Highlights from this past week
- Visits
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David and Beth H. came down. So good to see Sam be able to spend time with a friend in person!
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We invited Nana over for a sleep-over. Although she now lives in the area it was great to have her here with us like before she moved.
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Gram and Papa C. arrived yesterday evening. Great to have them here and have their in-person support.
- Sam’s Energy
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We have not seen Sam have this much energy since well before we left home. The cancer has been set back and he has had a week long break between treatments. It definitely shows how the chemotherapy has been relentless.
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Sam has had renewed energy to take on some academics, to build Lego, to tease his parents (…I am happy about that? Right?…). So good to see him have more physical and mental capacity.
Victories and concerns
It has 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.
We have completed a major chapter in Sam’s treatment. With the completion of this last/ sixth round of chemotherapy we now pivot to the bone marrow treatment plan – this next treatment brings hope of removal of the disease but also anxiety about both the challenging process and the potential for long term side effects.
It is the beginning of flu season and covid is still out there. In the weeks ahead, as a family, we will be very cautious to reduce our risk of getting ill. If any of us get sick in the weeks ahead 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.
Thankful that the chemotherapy has been effective at initially reducing the cancer and lately keeping the cancer contained (as indicated by the PET scan). Thankful that these results allow us to move forward.
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 have a huge coordination task ahead of them. All the pieces need to fall into place for the best timing possible.
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.