Diego had a check up today at the clinic, and an infusion of IV antibiotics as well. The tumor board discussed Diego’s last week and Dr. Sharma was going to brief me on their conclusions. She asked if I wanted to have the child life specialist play with the boys while we talked. Dr. Sharma assured me that there was nothing new or scary, but thought it would be easier. Still, I felt my stomach sink. Ugh, more chemo I thought…Anyway, there weren’t any new developments but she took the time to go over everything with me to help me understand their decision. The board unanimously agreed not to treat Diego at this time- based on the biopsy results, clear CT scan and risk of additional chemo on a little boy who had so many complications. Chemo for relapse is much more intense and prolonged than what Diego received initially, so it’s not something to be entered into lightly. The third pathologist from UCSF reviewed the tissue and agreed with the other two- “dead” Wilms tumor. No malignant features were seen. Dr. Perlman, the national Wilms tumor expert was consulted but did not review the tissue. As I understand it, the hypothesis is that the tumors were fragments of the original tumor. Dr. Perlman said that sometimes treatment causes Wilms tumors to differentiate, meaning cells grow new muscle tissue that isn’t necessarily malignant.* Why weren’t they seen on the scan in December? Apparently they think it is because at that time Diego’s abdomen contained a lot of fluid in that area due to the bowel obstruction, and that fluid masked the growths (which would have presumably been much smaller). So they are, at this time, not classifying this as a relapse. It is not a clear cut case, and there is virtually no data on what could happen from here. Dr. Sharma offered that one of the pediatric oncology veterans had mentioned that he had seen something like this before, where the tumor resolved on its own. At least, I think that’s what she said. There was some vague encouragement there somewhere, I think. From here, Diego will get another CT in early July, and then every 3 months for an indeterminate amount of time. His doctor was going to leave the Broviac in until after another CT comes back clear, but I asked if we couldn’t just remove it and why it was such a big deal to take out. It is minor surgery under general anesthetic, but apparently if he needs it again it wouldn’t slow down treatment to get it put back in. It is a source of infection and as long as he has it in, anytime he gets a fever over 102.5 we have to bring him immediately to the ER for IV antibiotics. We did that once on a weekend in Tahoe. Not too fun. Besides that the Broviac is a bitch clean, requiring masks, gloves, a sterile field for Diego and I. That’s been twice a week lately, and sometimes daily in the hot weather. Also, he can’t really swim with it on, certainly not in the ocean, and I worry about it getting pulled out by Mateo or some other kid at preschool. I’m also tired of the Broviac “accessories” taking up all the space in the toy closet. So, yes, please take it out– I’m over the superstitiousness of it at this point. In fact, another thing this experience has taught me is that stuff doesn’t work. Thinking positive, thinking negative, none of it seems to have an effect on things in my experience. The IV antibiotics, in case you were wondering, are because Diego developed an allergy to Septra/Bactrim, which is an antibiotic they put chemo patients on because they are at risk for a certain rare infection. Today’s antibiotics were a replacement. The antibiotic regimen needs to be kept up while on chemo and for 6 months afterwards. But hooray- Diego will hit that mark in exactly one week- so hopefully that will be off our plate. I’ll say that perhaps prayer and good thoughts have made a difference, I can’t help wonder if this dead tumor is our little miracle. So thank you friends and family, keep the prayers and good vibes coming for our little boy. As I’ve said before- all denominations accepted. We have another 4 and half years to go before he is considered “cured” or in remission, so please continue to hold Diego close to your hearts.
* Addtional note added on 4/26.