Victories and challenges – we battle on
Cancer war
Sam has summarized this the past two PET scans in the following way (parap hrased):
The PET scan in February was like someone dumped a load of bricks on me.
This last PET scan was like someone removed all the bricks but then threw a single one at me.
Sam is great spirits. As the impacts of radiation therapy are behind him, and the effects of GVHD1 are lessening he is seeing his energy return. Today he wants to go grocery shopping with me.
Review
The previous PET, back on Feb 14, provided really hard news. Following months of seeing a new immune system be established in Sam (Nov. - Feb) that imaging showed three new disease sites – it seemed that all of the previous efforts were for naught and that we were losing the cancer war. Despite all of the efforts of the BMT to establishing a new immune system, it did not seem to be effective at beating back the cancer.
Since the discovery of the new sites Sam has received immunotherapy (via the drug Nivomulab) as well as targeted radiation treatment to the new disease centers. The radiation therapy was straight forward and ended a couple weeks ago. With the immune therapy Sam was only able to have a single dose of the Nivomulab which triggered more GVHD2 than he had seen during his BMT3. Although this GVHD was not physically comfortable (e.g. hot rashes, GI4 effects) it was mentally comforting – if the immune system was attacking healthy tissue it meant that it was most likely also attacking the cancer. Most recently, the immune system started getting dangerously out of control by stressing Sam’s liver. In response, he was started on some steroids to put the brakes on his immune system and bring it back in-check.
This sets the stage for the PET scan this past Friday (April 5).
PET scan results
April 5th scan
Radiated sites
We have clear wins! No cancer was detectable in the three sites discovered back in Feb. The cancer in his T3 vertebrae, hip, and shin has been wiped out by the radiation therapy.
Central mass
The mass in the center of Sam’s chest, the one that brought us down here to start with, is stable. There is increased metabolic activity in the area but it remains the same size as previous – and potentially a little smaller. What is exciting about this is that the only thing keeping this site in-check would have been Sam’s immune system. The fact that this site is stable suggests that the immune system is able to battle whatever cancer is still in this area.
Challenges
A single new site has been located. The new site is located in Sam’s liver. For now we have to assume that this is new disease site (i.e. the same type of cancer in a new location). However, it is possible that is something else. The liver is a big organ, one that is hard to do surgery on, but this new site is superficial (near the surface) just below Sam’s lower rib on the right side. Given where this site is we are hoping that a biopsy can be completed this coming week.
Living Life
Friends and Family
Although not planned this way it was great to have my parents visit this weekend. Initial scheduling of the PET scan was not until next week. I am glad they were here to be with us – PET scans are often stressful. Nana Mary, Uncles Kevin and Cal were also able to come in the afternoon that we received the PET scan results.
Yesterday, Tina and I were able to visit with Brian, Beth, David, and Luke. A definitely highlight from that visit was seeing Sam have energy to talk with his friend!
Tragedy
Yesterday’s visits were filled with joy. But the day was also filled with sorrow. Our hearts break for R, and her whole family, as her daughter Dani passed away in the early morning. Dani had fought hard.
Victories and concerns
Thankful that three disease centers have been removed. Thankful that the original central mass is stable. We battle on to determine what the latest site is and how best to attack it.
Thankful that Sam’s energy has increased!
Thankful that Sam’s pain levels have been stable and generally easy to manage.
The new immunotherapy drugs seems to have released Sam’s immune system to hit harder. As the immune system was starting to get out of control brakes have been able to slow the immune system back down. It is good to know that the chemical brakes work, at the same time we do not want to suppress the immune system too long as it is the main method of battling the cancer.
We mourn the loss of Dani – grieving in solidarity with her family.
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.
The cancer remains and has spread to new areas in Sam’s body. The sites are a mass in the center of his chest (the original),
and newer sites in his back (T3 vertebrae), his hip (right ilium), and left shin (tibia just below the knee).Latest scan revealed a potential new site on Sam’s liver.We long for the day when Sam is clear of this disease.