Fight on
Scan results
Once again the cancer has grown but we are still fighting. Tina captured it really well in her text to some friends and family yesterday evening.
Treatment review
If you have been following Sam’s story you know that in the current chapter of immunotherapy (i.e. post-chemotherapy, post-bone-marrow-transplant, post-radiation) the use of the drug Nivolumab has been challenging:
When it was first given at the end of February Sam’s liver became inflamed and it took a couple months before he was able to use it again. During this period the cancer grew.
Sam restarted Nivolumab in June paired with another drug, Ruxolitinib, to control side effects. Sam’s body tolerated this well but dosing was likely below therapeutic levels. At the beginning of August scans demonstrated that the cancer had continued to grow.
In the first week of August Sam received a single dose of Nivolumab at what was believed to be a therapeutic level. However, by this time the cancer was having impacts on Sam’s heart. In the weeks following Sam had two surgeries. The first re-opened a major vein returning blood from much of Sam’s upper body to his heart. The second was in response to a pericardial effusion that threatened his life. It is not clear to the medical team what exactly caused the effusion but Nivolumab and its inflammatory properties is suspect. Therefore the Doctors are hesitant to offer this treatment without us understanding this very real risk of reoccurance. Meanwhile, the use of Nivolumab had not been possible in the weeks following these surgeries – his body needed time to heal.
Yesterday’s scan showed growth of the cancer. However, the change in tumour size is less than expected. It is plausible that the single therapeutic dose of Nivolumab, received at the beginning of August, had controlled the cancer for some of the time. So we press on with treatment – understanding the potential side-effects. In our minds this is a better choice than simply allowing the cancer to kill Sam.
Looking back (the past week)
This past week Sam was discharged following his surgeries. Sam has enjoyed numerous visits with friends and family.
- Brian, Beth and David were here Saturday
- Uncle Cal, Aunt Tricia, and cousins Chris and Jane were here Sunday
- Nana Mary, Uncle Kevin, Aunt Shannon, cousins Kelsey and Kaden were here Monday
Sam has also enjoyed connecting with friends online through games and social media.
What Sam wants – looking ahead
“There is so much I want to do, Dad.”
- To continue treatment – we are expecting that he will receive his next dose of Nivolumab later today.
- Sam is excited about the start of school and re-engaging with his classmates and academics at Cedars. He wants to try to get going with his studies. He is hoping to take World History, Christian Perspectives, Math, and Chemistry.
- For years Sam has been looking forward to grade 11 and the YWAM Urban Plunge that the Cedars students take. Sam will not be able to travel from Prince George with his class but he is looking forward to meeting them here and joining in on the activities (that our Doctor must review and approve!) and serving the people of East Vancouver.
Victories and concerns
The cancer has grown (as of Sept. 3 CT scan).
Sam is looking to fight on despite continued growth of the cancer. He will continue with his immunotherapy – have another dose of Nivolumab. It is our hope that 1) The therapy will be effective, and 2) That there will be no further complications that could restrict the use of the drug.
Our energy levels, or lack of energy, come in waves. Sometimes the waves are strong enough to knock you over. We need strength for this journey.
Sam’s heart is healthy and strong despite having had fluid around his heart – a pericardial effusion. We are thankful that the surgery to drain all of the extra fluid went well. Recovery from this procedure was challenging but Sam has made it through again!
We are celebrating the success of Sam’s stent surgery (see here). The outcome was far better than we had hoped for resulting in a return to near-normal blood-flow! (for that particular major vein)
To date, the medicines and interventions that have been tried have not had any significant or lasting effect at controlling this disease. We need something that will work. We need a miracle.
It was amazing to see Sam join the Ness Lake Bible Camp team (July 28 - 31) . He served, ran, talked, played – he got to be fully there! Many thanks to the NLBC team who welcomed him in. When Sam needs to think of a happy place he returns here in his mind and he is quick to share stories of these days.
We are thankful to the medical team here at BC Childrens’ Hospital who have explained things incredibly well and who have worked professionally and confidently. Your clear communication, compassion, and medical care give us great confidence. Sam has never lacked for incredible care.
We are thankful for the gift of a place to stay so close to the hospital. The Ronald McDonald House (RMH) has provided us a home away from home. This place is an amazing example of charity at work.
Thankful for friends who have chosen to meet regularly to pray for Sam (we are also thankful for everyone praying for Sam wherever you are). If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
Thankful for such supportive family and friends caring for us all through this journey.
We long for the day when Sam is free of this disease.