I guess the last few weeks haven’t really been filled with nonsense so much as the usual medical garbage that we deal with. After having to postpone John’s third round of chemo due to low platelets first and then low white blood cells the following week he finally started round three. Two days after taking the CCNU pills that he takes the first day of the round his head started swelling bad. He was walking around with an ice pack ace bandaged over his right eye and was taking tons of pain pills and steroids trying to get the pain to go away. His face broke out in a rash again as well. It was pretty clear at that point that he had definitely developed an allergy to the CCNU. We called the oncologist to let him know and he said okay just keep doing what you are doing until your next appointment, go ahead and continue with the treatment plan. The CCNU is only the one day of pills so we figured it was over at that point. Did I mention I had the worst stomach bug I think I’ve ever had and during that day so he was taking care of the girls while I was sleeping on Colby’s bed. Colby would lift his arm up and put it on my face when his cartoon was over, I’d wake up enough to get him another one and then I’d fall back asleep. It was a fun weekend.
The following week John goes for his Vincristine infusion and that night he starts taking the Procarbazine pills. He is miserable. We figured he got the virus from me. What was really happening was his body was reacting to the Procarbazine. By the following Saturday he had broken out in hives. He was up all night. I finally convinced him Sunday morning (Mother’s Day) to go to the ER and get some Benadryl by IV because the Benadryl pills he was taking weren’t helping. He went in got the Benadryl, some IV steroids and an Epi shot. Convenient of him to not tell me his chest was starting to tighten wasn’t it. He said he didn’t want to worry me. UGH that man can drive me crazy some times! They finally sent him home and told him to call the oncologist in the morning. So he came home and felt much better.
Monday we talked with the doctor and his nurse and they want him to with the infusion he has scheduled for next Thursday since that one doesn’t seem to be causing him any problems. They’ve only ever had one other patient in the neuro clinic develop an allergy to the two pills he was taking. Everyone else has a hard time with the infusions. Figures right? We go back for his appointment on the 27th to see what the new plan is. The original goal was to do 6 rounds of this treatment knowing that they’d never had anyone complete more than 4 rounds. At this point he’s completed most of round 3. He didn’t take 5 nights of the 14 Procarbazine pill doses but he will finish with the last infusion.
Neither one of us is really sure how we feel about it at this point. The nurse thinks the doctor will want him to go back on the Temodar that he took his first time taking chemo. She seemed to think that was what he usually recommends if you can’t continue with the PCV therapy. John’s worried that by not completing at least four rounds that means the cancer will come back fast like it did last time. The PCV therapy in combination with the radiation he did this last time was shown to keep recurrence from happening longer than the Temodar therapy he did originally. That therapy should have kept the tumor away longer than it did the first time so who knows what will happen this time. We both try and stay optimistic but it can be hard when you can’t complete the therapy that had a better outlook.
During all of this cancer garbage all the kids had the stomach virus, Riley turned 7 and Colby turned 9. We had a joint Spider-Man/Hello Kitty birthday party for them. Colby was excited that two of his friends from school were able to come and another friend who couldn’t make it to the party came over earlier in the week and played for about an hour. He loved it. He never acts very interested in having friends over so we’ve never tried it before. It was fun to see him having fun with his buddies. I love that Riley thinks it is fun to share a party with him and that she doesn’t complain about having boy stuff with her girl party.
Here’s some pictures from the party to end with.