Hello, everyone. The last few weeks have been somewhat of a fog while Mike and I have been passing each other on the tollway each day driving back and forth between Children’s Hospital and our home to cover both of our children. But today we have some very good news. We were able to take Michael home yesterday after just 23 days in the hospital for his stem cell (bone marrow) transplant. The normal time spent in the hospital for this process is 30-50 days, so this is very exciting and uplifting news for our family. Michael has made a stellar recovery, and as I type this, he is on his 12th hour of sleep upstairs.
The first couple of weeks were very difficult. He developed a bacterial growth that often leads to infection, and the doctors expressed concern and put him on four powerful antibiotics until the day before we left. Mike kept trying to explain to me that this was not a life threatening infection at any point, but when the doctor called and told me he had some concerning news, I’m not sure that I heard anything he said after that.
Then the worst part of the transplant process began, which was the mouth sores. They lasted a little over a week, but the worst of it was probably about three days. And I must say that, in all of my life, I have never seen a child suffer that much up close. I know that children suffer tremendously all over the world each day, but this was horrific, unspeakable pain. He could not talk, eat, drink, or get out of bed to use the bathroom. It was a very dark and frightening time for Michael, and for all of us. But it passed, and he rebounded like a champ, as always.
He also experienced many of the normal side effects of his chemotherapy and transplant, like nausea, vomiting, diarrhea, and body aches. But if a visitor or volunteer walked into the room, he perked up and was eager to play a board game or work on a craft.
And speaking of arts and crafts, thank you so much to all of you who sent so many fun projects for Michael. We used them every day at the hospital, and we now have enough at home to last us through Christmas. I could open up a preschool with everything we have now!
Thank you, also, for all of the meals. I don’t know what we would have done without that help. We barely had time to sleep or shower, much less prepare meals.
As for the future, we now enter a period of 30-60 days of quarantine. The doctors have asked that Michael, Emmy and myself not go to restaurants, grocery stores, or anywhere for that matter until they feel his immune system is ready to endure a potential illness. Mike will, of course, have to continue to work. If it were up to me, he would have a tube of sanitizer wrapped around his body that would spray a shower of antibacterial liquid every time someone approached him. But I suppose that might be offensive to some of his clients.
We are settling back in at home, and if he does as well in quarantine as he did during transplant, we may be out and about in a month or so.
The next step for Michael is radiation, which will probably begin in 3-4 weeks. Then he will enter a clinical trial to help prevent relapse. That is scheduled to begin in October, and will last six months. He will be in the hospital for five days every 3-4 weeks during that period.
Needless to say, we have a long road ahead, and we will not know how many residual tumors he has until we get the results of his next set of scans, which will be in 2-3 weeks. But today, we know that his transplant was successful, and for that, we celebrate. We celebrate our son, who is courageous, kind and relentless in his fight against this cruel disease. We celebrate being his parents. We celebrate our other four children, who have been the reason we have been able to endure this nightmare with Michael. And we celebrate our friends and our family, who have surrounded us with unending love and support.
We wish you a wonderful fourth of July.
With love and hope,
Alison & Mike