We have had a real break
It has been just over two weeks since my last post and in that time we have had an amazing break!
Current medical situation
Two weeks ago Sam’s regular blood work confirmed that his liver numbers were continuing to drop. This allowed us to continue to test if his new immune system would be effective, on its own, to battle the cancer. Sam was off all immune system suppressants for just over three weeks (May 15 - June 6). However, bloodwork at the Prince George clinic showed that liver inflammation was starting again. This past Friday Sam started on a lower dose of immune suppressant in an attempt to find a balance of allowing the immune system to do its work while protecting his liver.
Currently, we are near the end of this wait-and-see period with a PET scan scheduled for tomorrow.
The earlier improved liver enzyme numbers, coupled with the results of the previous CT scan, also meant that we had what the medical team considered a safe window of time to return home! On May 29 we checked out of the Ronald McDonald House and made the drive back to Prince George! It was an amazing break!
Living life
I can’t express how good it was to get back home – to be in our own space, and to connect with some of our Prince George friends and family (though not near enough time to see everyone). We spent the first couple of days at my parents home where it was great to see them and for Sam to be reunited with Buddy. After a couple of days our own home was ready to return to.
During this break it was most encouraging for me to simply watch our boy! He loved being home and jumped full into life there:
- Sam loved connecting with friends.
- He chose to jump right back into school despite having missed the last third of grade 9 and almost all of grade 10. Many thanks to the staff and students at Cedars who welcomed Sam back in and allowed him to engage with his academics.
- He pushed hard to catch up on a couple topics often spending 2-3 hours a day on homework. … Honestly he had seemed to have more energy than I did.
- This last Friday, after writing a three hour math test during the day, Sam even attended the school dance. His muscles are still sore from having had a great time with friends and dancing the evening away!
Tina and I were able to connect with various friends. So good to see you and we look forward to our next return!
Upcoming
We are now back at the RMH having finished our latest drive down yesterday. Tomorrow morning Sam will have a PET Scan at the BC Cancer clinic. Preliminary results may be available in clinic that afternoon though the full report may have to wait until Friday. Results of this scan will dictate next steps. If the results are positive then we can proceed with our preferred treatment option: to simply keep doing what we have been doing over the last number of weeks – let the immune system do its work and wait-and-see. If results are more challenging we will discuss options with the team here at BC Children’s.
Victories and concerns
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.
We celebrate that the cancer has not shown any significant signs of growth/progress since Feb. 14th. A PET scan tomorrow, June 12, will reveal the current state of the cancer. Scan days always carry some stress.
We celebrate that Sam was able to be off immune suppression for over three weeks. Recently, his liver started to become inflamed again. He is currently on a lower dose of immune suppression with the hope of finding a balance of protecting his liver while allowing the immune system to attack the cancer.
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.