Scan results
Current medical picture
This past Wednesday Sam had his most recent PET scan. Scan days are always stressful. Our experience with this type of stress is not unique. Talking with other parents, we all recognize that scan days and at minimum the day leading up to them are intense. It is weird because the scans do not change anything, but what they do is reveal what is happening. They cause use to confront all that we hope for and all that we fear. To add to this, the results from the scan often do not align with either our hopes or the fears that we try to prepare ourselves for. This dissonance, just adds to the stress of it all.
The results of this last scan, like many others, has mixed news.
Cancer status
The good news is that since Feb 5th there are no new disease sites.
The difficult news is that the site in the center of Sam’s chest remains and has grown a small amount. The previous scan, April 5, showed no detectable change at that site and so to have this new growth strongly suggests that the cancer is active there. Options for treatment are limited and it is unknown if they will be effective.
Liver status
The previous PET scan raised concern that a more metabolically active site in Sam’s liver could be cancer. This has been ruled out via biopsy. We have known for sometime that Sam’s liver has been stressed due to side-effects of his immune therapy treatment causing his immune system to become deregulated. Latest metrics of Sam’s liver health have been improving. Recent ultrasound of the liver shows a minor increase in size. The Doctors want to continue monitoring this mass as it is not an urgent priority right now.
Next steps
We are in a hard place with two potential options for treatment – it is not known which is best or if either will be effective.
Option 1: Rely on the new immune system
Sam’s new immune system is fairly well established (although not completely until about one year after the bone marrow transplant). To date we have not had the opportunity to see what it can do. The previous treatments had side-effects that required steroids to calm/ suppress his immune system so that permanent liver damage could be avoided. If he was taken off the immunosupressants and just let his own (new) immune system work, this option would allow Sam to live and enjoy his life without medications and risk of side-effects. However, we do not know if his new immune system will effectively battle the cancer.
Option 2: Resume immune therapy
This option would require the use of Nivomulab (an immune therapy drug) again. We know that this drug can make the cancer in Sam’s body ‘visible’ to the immune system. However, this is also the drug that resulted in Sam’s liver being inflamed and the subsequent need for steroids to calm the immune system (Catch-22). If we go this route, the team would use the lessons learned from last time to modify their therapy plan in an attempt to limit side-effects.
- If side-effects can be avoided, this will likely be the more effective treatment.
- If side-effects cannot be avoided, this treatment could cause permanent harm (eg. the risk of liver failure).
Life together
Despite all of the challenges and the ongoing threat to Sam’s life, we have been able to enjoy life as a family. The cancer aside, Sam is healthy, regaining weight, growing, and getting stronger.
In the last couple of weeks we have been instituting Sam’s foodie-rehab plan. This is where we walk from RMH to the small mall at Oak and King Edward. Once there, Sam has been enjoying most items at Kim’s Express (Vietnamese food). One evening Sam led our family for a larger walk, one that I did not know he was capable of, down to Cambie Village about 1.5kms away. We had some great ice cream before walking back. This was an epic evening for our family.
Over this past weekend we were able to join some of the Frickers and the Townsend side of the family to experience the animals at Aldor Farms near Ft. Langley. I loved watching Sam take some time to groom Rob, a huge Percheron work horse.
Yesterday, we celebrated Mothers Day. Ronald McDonald House put on a beautiful brunch. In the evening, we took in the Canucks vs. Oilers hockey game (which Sam mostly slept through due to being tired from his big farm day Saturday).
Victories and concerns
We celebrate that a year following the start of all his varied treatments, and despite the ongoing cancer battle, Sam is feeling the best he has felt in a long time.
We are very concerned as the original central mass/ disease center is active.
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.