I have just realized that I haven’t written much about Joel’s current set of treatments (Interim Maintenance II). He has had a nice break from being pummeled with chemicals. First he was delayed two and a half weeks because of the clot and his low blood counts. Then on August 19th he only got half his chemo. They decided to skip that dose of Peg-Asparagines and the spinal completely and they will not be making them up at a later day. This has allowed Joel’s counts to recover very nicely which is good because he is now fighting a cough.
Joel started treatment on Friday, August 19th. We had a good long chat with Dr. David. We hung out in the teen lounge with S____ who was getting his very last spinal and his huge extended family. He only has one more month of Maintenance treatment and then his family is planning a huge celebration party. It was nice to see someone who is almost at the end of this journey. Just as we were leaving we ran into N____ and his family. He has just had a relapse and neither Joel nor I recognized him at first. We had lived at Ronald MacDonald House with their family all thru Christmas and the spring. The last time we had seen N_____ he was in remissions and was going home for good. It broke my heart and I still don’t know how to process the extremes of that day.
This set of treatment takes about 58 days and Joel will be getting increasing doses of methotrexate every 10 days as long as his counts don’t get too low. If the counts start to drop, he will still get the methotrexate treatment on the designated days but it will stay at a consistent dose and not be increased. He will also be getting a dose of vincristine on those days. On September 8th he will have another CT scan and if everything looks good then he will get the Peg-asparagines on the 9th. On the 28th they will also do a spinal along with the regular chemo. On October 8th he will get the last escalating dose of Methotrexate and a dose of vincristine in Kelowna. Then he gets a 15-day break until he starts Delayed Intensification II Therapy on October 24th or later if his counts need longer to recover. There is no oral chemo during these next few weeks, just the septra every Tuesday, Wednesday and Thursday.
Today he has gone to Kelowna where he is getting methotrexate and vincristine. He will come home and take a few medications to help him deal with the side effects. Hopefully he will sleep it all off over the next day or two and then he will have another week of fun at home with family and friends. We are hoping to check out the fair on Wednesday but Joel has already said that he is NOT going on any rides.
I refilled Joel’s enoxaparin this week. It seems funny to me but the price of the prescriptions seems to change every time I get them filled. This time the total was only $680.40. Fair Pharmacare paid $ 471.94, Blue Cross paid $207.46 and we paid $1.00. Last time the total was $730.40. Fair Pharmacare paid $105.79, Blue Cross paid $622.61 and we paid $2.00. I don’t have a clue how it all works, I am just very thankful for the medical coverage that we get.All the chemo is fully covered by medical, which I have learned is a very good thing. Joel often gets four separate types of chemo in one day, along with daily oral chemo and sometimes he has to go in up to 4 days a week for chemo treatments. Some comes in needles to be pushed in to muscle or spinal fluid. Sometimes it comes in bags and gets attached to his port so that it can flow directly into his heart. It often comes in small bags, some in huge bags; some need to be followed up by lots of IV fluids. Most chemo is a clear fluid; some is glow in the dark yellow, some red, blue, green, even purple. I do not know the cost of most but I have been told that the purple one cost a quarter of a million dollars per dose. We tease Joel that when this is all said and done, he will be worth a fortune. He is just not quite sure how to market it yet.