Living with Cancer
Sam was selected to be a Canucks for Kids Superfan. We had an amazing time at this game and it was great to see this win. Vancouver did an amazing job in the series. Sam has followed the Canucks closely during his cancer journey, and as they battled and exceeded expectations, so did he. Sam’s battle continues and we will look forward to seeing how Vancouver does next year. Additional photos are linked here
The last two weeks have been a whirlwind. Key highlights included: attending game 5 of the Vancouver versus Edmonton series, a CT Scan, and regular bloodwork, a new bike for Colin, some family visits, and all the regular clinic check-ins.
Current medical situation
Over the last two months we have been most concerned about getting Sam’s liver inflammation under control. There have been various medicines used in this. The meds likely helped, but perhaps what was also needed was simply time. Sam’s liver numbers have settled into a safe range and he is now off all immune suppression medications. This is great as, for the first time, his new immune system is able to fight the cancer without the influence of other medications.
The challenge is knowing if relying on Sam’s new immune system will be enough – will it be effective? In an attempt to answer that, last week Sam had a contrast CT of his chest, one week of being off immune suppression, and he will be scheduled for additional CT scans in the weeks ahead. He will also continue with regular PET scans to ensure that the cancer has not moved to new locations in his body. The great news is that there has been no detectable significant change in the size of the cancerous mass1. The last known change in the disease centre was between Feb. 14 and April 5.
For Sam the downside of being off immunosuppression is that symptoms of Graft Versus Host Disease (GVHD) have started to return. However, he knows that these pains most likely mean that the cancer is also being fought. I don’t know if it will stick but our current motto is:
Bring on the pain, kill the cancer, live life!!
To sum-up the current situation – Sam is now in a wait-and-see period. Our hope is that his immune system will, at minimum, hold the cancer back, and at best remove it. We are thrilled that it seems the cancer has not progressed. We are hopeful that the current plan could finally work. We also fear that the cancer will change and develop again. So now we wait and we try to live life with, and in spite of cancer.
Moving forward we will continue with Sam’s regular bloodwork and every few weeks complete further scans (CT and/or PET scans).
Living life together
The pictures above highlight one amazing evening that we had as a family. We have also been able to spend some time with the Fricker family and Nana Mary with visits at their place as well as here at the RMH.
I have been taking time to be refreshed riding my new bike thanks to a recent specified generous donation2! There are so many to thank for their support. Please know that all of your gifts are so appreciated. This journey is hard and I do not know how much harder it would be without the support, financial and otherwise, that we have received.
Victories and concerns
We celebrate that the cancer has not shown any significant signs of growth/progress since Feb. 14th.
We celebrate that Sam is not longer on any immunosuppression and that his liver numbers have stabilized.
The minor challenge to being off immune suppression is that symptoms of GVHD have returned. General itchiness and GI sores.
Thankful that the three new disease centers, treated using targeted radiation, have been removed.
Ongoing immune therapy has deregulated Sam’s immune system. Side-effects were becoming dangerous as Sam’s liver is inflamed. In order to continue with the immune therapy drugs, Sam’s immune system needs to be brought back to a regulated state. Recent bloodwork suggests that things are returning to normal function.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.
We are thankful for the gift of a place to stay so close to where Sam is receiving his care. 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. If you would like to join them talk with Beth H., Krista C., or contact the Westwood Church office.
We long for the day when Sam is clear of this disease.
Footnotes
The cancerous mass is actually very heterogeneous. Remembering back to early November targeted radiation had been used on the area. As a result, what we have now is a mass that is mix of healthy, dead, calcified, and cancerous/diseased tissues.↩︎
This gift was given in response to my other bike being stolen↩︎