It is the day before Thanksgiving, and even in the midst of Michael’s illness, we are very thankful for many things. His doctors were able to move the November treatment schedule around so that he could check into the hospital last Friday instead of Monday. So we were able to take Michael home late last night instead of this Friday. We are thrilled to be able to have him home for Thanksgiving.
Michael had another bone marrow biopsy last Wednesday, and we found out Monday that his marrow is currently cleared of cancer. This is amazing news, and we are thrilled. Of course, this does not mean that Michael does not have any active cancer. There are still areas of concern – primarily in his skull, liver and abdomen. And this type of cancer has a high relapse rate, so Michael’s battle is far from over. However, today we are celebrating. And we want to share that with all of you. Your prayers have been working.
Michael is scheduled to have another MIBG scan next week, and that will tell us more about the progress of the cancer in his skull, liver and abdomen. Then he will continue his clinical trial antibody treatment until the end of February. At that point he will have another round of scans and we will go from there.
Many of you have written to me asking about this trial, which primarily consists of infusions for 1-2 weeks each month for six months, and the effects it has on Michael. If you want to google it for details, it’s called a Phase III Randomized Study of Chimeric Antibody 14.18 (or just Ch14.18).
Regarding the side effects, this process has been pretty brutal – much worse than chemotherapy in our case. Every child is different. Michael responded fairly well to chemotherapy, and his side effects were less than most. In this case, he is one of the few that comes home with ongoing side effects. The nerve pain is extensive, and requires the maximum amount of morphine possible. So after 5-10 days of high levels of morphine, it’s quite an adjustment to his system afterwards. Some of the medicine he is taking also causes severe mood swings and emotional outbursts that are very confusing to him. He feels out of control, and keeps asking why he can’t stop crying. Michael has always been a very tender, kind child, so this has been particularly difficult for him. Luckily, he is not able to remember all of it.
The biggest side effect has been a decrease in his vision. Michael woke up one day unable to see anything clearly for about four feet in front of him. He could not read, write, draw, or even eat properly. He could watch a television from far away, but everything else was a blur. We had a brief scare when his doctor feared optic nerve damage or even a tumor behind his eyes, but a quick CT scan eliminated that possibility. After talking to the director of the clinical trial, we have learned that severe vision loss does occur in a few cases. And it is likely to be gone by this spring, a few months after the infusions are over. We did get him some glasses, which help, but obviously, this has been very difficult for Michael.
We wanted to keep you updated on everything Michael has been going through the last few months, but please know that as we enter this holiday weekend, with all five of our children gathered around our Thanksgiving table, we are thankful. The last 11 months have taught us a great deal, and we treasure our family and our friends more than ever before.
Thank you for your unending support, your love and your prayers. We will spend our weekend giving thanks for all of you.
With love and hope,