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Charlie's cancer returns and he undergoes a stem cell transplant at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Charlie will need to spend several months in the hospital in preparation for the stem cell transplant and for a period of time after transplant.
It is with the heaviest of hearts that we write to tell you our Charlie's leukemia has returned. Needless to say we are all – including his doctors – stunned. His new protocol will most likely include stronger drugs than he took the last time, and it may even entail a bone marrow transplant.
Charlie started treatment on May 23. His doctors worked very hard to get him into a clinical trial that includes a new experimental drug they are very optimistic about. The protocol includes three 36-day blocks of treatment.
After Charlie has completed all three blocks he will start the bone marrow transplant process. This begins with five consecutive days of full body radiation. If all goes well, he will have the transplant, then he will be in isolation in the hospital for four to six weeks. After discharge, he will be in isolation at home for six months to a year.
We have been teaching our boys how to play poker, and even as novices they realize we have been dealt a lousy hand.
Being in the hospital with Charlie for nearly five weeks is finally getting to me. At least Mike and I and Harry and Max get to go home, but home is a hollow and strange place. Every time I go in Charlie's bedroom or see his backpack hanging behind the kitchen door, I burst into tears.
Harry and Max were not bone marrow matches for Charlie, but the transplant team has found over 900 potential donors. They will cull the list to weed out all but the most perfect matches.
We have reached the end of the first chemo cycle, and Charlie has only gone into partial remission. Full remission is required for a the transplant, so his doctors have decided to bring out the big guns and change his current protocol to one that is much more aggressive.
The staff at Children's have been telling Charlie he has done so much with Legos that he should have a show. Well, now it is official. When Mike and Charlie returned to the hospital after Charlie's first furlough, they found the following invitation waiting for them:
Please join us for a Lego Exhibition by Charlie RiderMonday, June 29, 1 p.m. in the Resource Room Refreshments will be served
Today marks nine weeks to the day that Charlie was admitted to the hospital. The most important news is that he has gone into remission. Also, the transplant team found a donor who is a perfect match. He is a 27-year-old man from somewhere in the United States.
A big poster on Charlie's door reads "Happy Transplant Day" and it is adorned with stars and pictures of Legos. Charlie received his new bone marrow cells (also known as stem cells) right on schedule. The transplant took about four hours, and other than some nausea and fatigue, he is doing quite well.
It really hit me that a healthy stranger had checked himself into a hospital and suffered a few days of pain and discomfort in order to save my child. I wanted to hug him and tell him that I love him.
With all that Charlie has been through, getting his new cells was actually quite anti-climactic. The cells arrived in a bag (the same as what all blood products arrive in) and they went directly into his central line just like any other IV medication. As I am sure you can imagine, though, the process to get to the actual transplant is much more involved.
One weird thing I wasn't expecting was the change in Charlie's appearance after the transplant. Except for a couple of rogue strands, all of his eyelashes and eyebrows had fallen out. His skin was a decidedly blue color and his eyes were freaky. His eyes can look brown, grey or green, depending on the time of day and/or his clothing. However, after the transplant they looked translucent. It was as though I could see into his soul.
A "new normal" conversation I had with one of Charlie's nurses:
Nurse: "Charlie has been in a fair amount of pain today, so I think it is time to hook him up to a personal pump for morphine. Would you like him to get a continuous drip with that as well?"
Me: "No. I think we'll just start with the pump and perhaps order the drip later." We might as well be ordering bacon and eggs with a side of hash browns. I hate that I know this stuff.
Charlie's new bone marrow has engrafted, which means the new cells are taking hold. Of course there are still a lot of risks to face in the coming months, but this is a major step towards overall success.
CHARLIE IS HOME! He arrived at about 2 p.m. and immediately began playing with his brothers as though no time had passed. Charlie's return feels like a rebirth. We made so many preparations for his return, and we are exhausted. However, we are finally all together again and we couldn't be happier.
Next: Recovering from Transplant
Find out more about bone marrow/stem cell transplant at Dana-Farber/Boston Children's: