The doctors never did find anything to biopsy in Alex's neck, which is good news, so we may never know exactly what we were seeing in the PET scan. Their best guess is 'brown fat'. This is my least favorite and most distrusted term in the medical community. They thought Ian had 'brown fat' in his PET scan before his cancer re-emerged and we began the real battle to try and save him; so I think it's pretty obvious why that term only brings me dread.
Our poor oncologist, who probably knows me too well at this point, patiently went over every slide with me as I looked over his shoulder. "Wait, go back, what's that spot?", "hold on, why are his knuckles lit up?".....my questions and apprehension were endless but he answered every anxious query. He finally had to reassure me - "Stef, this does not look like cancer to me." I finally let it go......for now. 😌
Then we started dealing with Alex's ongoing infections. In addition to discovering Alex was being over-immunosuppressed, testing at Stanford revealed that his B cells (those little guys responsible for creating antibodies to help fight off infection), had been decimated by one of his cancer drugs. The only way to help his body fight off infections would be very expensive Immunoglobulin infusions (IVIG). Stanford and his oncologist here both agreed these needed to happen but our insurance saw otherwise. For the first time in a long time, we found ourselves in a battle with our insurance provider. Having world renowned specialists telling them this treatment was needed wasn't good enough (thank you CVS Specialty Pharmacy). In order to get around this, we needed to see another specialist at Stanford in Immunology. We ended up seeing the Pediatric Specialist because she has the most experience with this type of problem; a petite French woman with a lilting accent who spoke very quickly. I couldn't understand some of it but it was lovely to listen to. They ran more tests and confirmed this was the best course of action. The outcome of those tests revealed that Alex's system had no memory of the vaccines he had had as a child; only the chicken pox that he contracted twice. I had no idea something like that was possible. So every infection, every virus was a new one to his system. This was especially worrying as the outbreak of measles has been slowly gaining momentum. The immunologist wrote into CVS and they denied us again. Our doctors kept battling and finally in July Alex was able to get his first infusion. These infusions last 4 hours at our doctors infusion center in SLO and are done every 6 weeks. We have no idea how long Alex will need to have these. If his B Cells start producing again, this could be short lived or he could need these the rest of his life.
During this same time CVS decided that Alex needed to change the immunosuppressent he had been put on after his latest cancer diagnosis. The only problem was, the drug they wanted to change him to he had already tried 17 years ago and he had an adverse reaction to it. But again, his doctors giving them that information wasn't good enough. Loma Linda had to go back into their paper records from 17 years ago and find the one piece of paper that documented this adverse reaction and the justification for not putting him back on it. We were down to the last 7 days of Alex's current medication when the reprieve came from CVS and they agreed to continue covering his current medication. Can you tell I'm not a fan of CVS at the moment?
As usual, Alex handled all these ups and downs really well. We joked about seeing as many specialists at Stanford as possible, agreeing to forgo the Ob/Gyn department. And we are fortunate, we have good insurance that covers these horrendously expense medications and infusions. Alex went on with his bowling league, inching his way closer to a 200 average. He worked his shifts at the bowling alley, with only a few minor changes to safeguard him from infections. And we've gotten into our new routine of visits up to SLO for infusions and periodic check-ups at Stanford.
We have our next big annual check-up at Stanford in October where Alex will meet with his cardiology & oncology teams. He'll have a repeat PET scan and see where we sit as far as remission goes as well as a dobutamine stress echo. In other news, I've found a small Southern Baptist church in town that I like. We stopped going to church as often when Alex was sick and the flu was so bad but it was time to step back in and get our toes wet. It's small but the people are friendly and the preaching is good and it feels like the right place, at the right time. We're getting into a new flow.
A lovely friend of Ian's shared this with me and I thought I would pass it along here. I debated whether to post it here or on my original blog about Ian, but thought, both of my boys are so intricately interlaced it would be ok to share it here. Lessons of the lioness, there is hope beyond grief.
