Threats – Scan Results
This past weekend was filled with the love of family and friends but it carried an underlying inescapable anxiety as we waited for scan results. Yesterday, the fears we battled through the weekend were realized – the cancer has grown. Today Sam received an elevated dose of Nivolumab in an effort to get the cancer under control and again we wait, hope, and pray that one of these treatments will finally work.
An anxious weekend
Last Friday was filled with numerous appointments the most important being a PET scan to determine the current extent of Sam’s cancer. However, it is a rare day that we get the results on the same day – so we had to wait-out this past long/holiday weekend before getting the results.
In addition, given that Sam has been on morphine for such a long time, on Saturday we attempted a plan (suggested by our doctors) to switch him over to methadone (i.e. start replacing morphine with methadone). I do not fully understand why it did not work but by mid-day-Saturday Sam was writhing in pain. It would take another 36 hours before he would start feeling himself again. During this time we were able be with with Nana and the Fricker family (Saturday and Sunday). We would have loved for Sam to take part more with the family but the medication switch had taken him down – he was able to see everyone but he had very limited capacity to be with the family.
By Monday Sam was feeling better, having returned to his regular drug regime. Mid-day we had a nice visit/lunch with friends, Donna and Ciaro, whom we had met through RMH. In the evening we saw the Townsends. It was great to see Sam feeling better and he was even able to enjoy a game with his cousins. We were back at the RMH for the night as we had clinic the next morning.
Scan results
It had been a long wait through the weekend to finally get to clinic yesterday and hear the results of last week’s scans. As always our medical team was amazing, especially given the hard task before them. The results are not what any of us wanted. The cancer had grown again. In retrospect, now that we have enough scans of the same type (i.e. not mixing results from different types of scans), it seems that the cancer has grown fairly consistently and none of the medicinal treatments have had measurable impacts at slowing the disease. Additional concerns were also raised as this disease is having further impacts on Sam’s vascular system as it grows into and around some of Sam’s major vessels and heart. The left and right brachiocephalic veins are blocked by impacts of the disease (the main veins transporting blood from Sam’s head to his heart). Sam’s body has adapted as he has an extensive network of smaller/collateral vessels that move the blood around this blockage. Flow is also partially restricted in the superior vena cava, the major collection chamber for blood returning to the heart from the upper body – again caused by the cancer.
Next steps
Today, Sam received a dose of Nivolumab at a rate 4-times what he has received previously. This increased dose was done in effort to find a level that may show some effect. However, in doing so we recognize that this may also cause side effects that we have been hoping to avoid. He will remain in hospital for monitoring overnight and if he remains stable he may be discharged to the RMH over the weekend.
Next week Sam will have another contrast-CT in an attempt to image if any impacts can be measured.
So how are we doing through all of this you ask? It would be a lie to say we are not scared. The disease has been a constant threat and now more than ever. However, there are great moments of joy. It is impossible not to smile when Sam wakes from a nap with a big smile on his face saying “I’m so happy.” He is happy – he knows he is cared for and he knows that he is loved.
Victories and concerns
The cancer has grown and the impacts of the disease are threatening Sam’s vascular system and thereby his life.
To date medicines have not had any significant 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.
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 (we are also thankful for everyone praying for Sam whereever 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.