Safety Delay
Medical plans
We had to know if Sam’s new immune system from the BMT would be able to stop the cancer – we now know that it cannot. The results of the June12th PET scan simply sucked – the cancer had grown, and likely spread into two lymph nodes close by.
So we pivot and move onto the next plan which will be a combination of different immunotherapy drugs. Past research suggest that these drugs could be effective at 1) interrupting a key metabolic pathway in the cancer cells, and 2) disable some of the cancer’s defenses that allow it to hide from the immune system.
Last Friday we were hoping to see Sam start on this modified immunotherapy drug treatment plan, but it was not safe to do so. Since receiving his BMT1 Sam has had some level of GVHD2. One ongoing effect of GVHD is that fluid has built up around his heart (measured using an echocardiogram). To date this has not impacted his heart function. The challenge and safety concern is that the new immunotherapy treatment will likely intensify GVHD impacts that could put his heart at risk.
So instead of treating the cancer, last week Sam was started on a steroid to reduce GVHD effects. Yesterday, a repeat echocardiogram and blood metrics suggest that this GVHD treatment is working and this should allow Sam to start on the immunetherapy/cancer-treatment later this week.
Life together
We have all had our moments this past week. It has been emotionally challenging and at times each of us has had to confront our fears. We have also had beautiful times as we have been able to do that together.
We have received many notes of support and encouragement – thank you!
We have also enjoyed watching the hockey playoffs with family in the area. Uncle Cal also did his faithful visit after teaching in Richmond.
Victories and concerns
We are concerned as cancer treatments have been delayed. The effects of GVHD caused fluid build-up around Sam’s heart making it unsafe to proceed with immunotherapy.
At the same time we are thankful that Sam’s medical team continues to be diligent and thorough to protect him and to bring him to a healthier/safer place before starting this next treatment.Results from the latest PET scan are challenging. The cancer has grown. Though we remain thankful that it has not spread to other areas of Sam’s body.
Thankful for a great break at home and time to connect with friends and family! Thankful that Sam was able to connect with his friends and jump back into school work .
Thankful that the three new disease centers, treated using targeted radiation, have been removed (confirmed by April 5th PET scan).
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.