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May 31, 2010 – Memorial Day

Hello, everyone, and Happy Memorial Day. Michael has had a wonderful weekend with friends and family, and his preschool, Meadowbrook, has arranged for him to attend the first week of their summer camp before he checks into the hospital for his bone marrow transplant on Tuesday, June 8th.  We continue to be so grateful to everyone at Meadowbrook for their support and love for Michael.

Last week Michael endured a grueling five day schedule of multiple scans and procedures in preparation for his transplant. He was under general anesthesia four times, sometimes for up to four hours, and had a bone marrow biopsy on Friday. However, we were able to schedule several of these procedures around his last week of school celebrations. He was especially thrilled to go to the end of school party splash day and spend the afternoon with all of his friends and teachers.

We will get the results of all of these scans and procedures on Wednesday, but do not anticipate any significant change from the last round of tests. Michael has been responding to chemotherapy up to this point, and he has not had enough of it yet to cause his body to become immune to it. But obviously, if there is anything to report on Wednesday, we will let you know.

Michael will be in the hospital for his bone marrow transplant for anywhere from 4-6 weeks. He will have surgery on June 8th to install a central line with two outlets for treatment, in addition to his port which he has had since December. Then he will have seven days of conditioning chemotherapy, which is the highest dose of chemotherapy that can be given to a child. It will wipe out his immune system and cause severe discomfort and pain.  Michael will not be able to keep food down after the chemotherapy, and his doctors have told us that he will probably only be fed intravenously for the duration of his treatment. He will be covered in painful mouth sores, and there is little they can do to ease this discomfort.  And overall, he will feel like he has a very achy, feverish flu for a little over a month. After the conditioning chemotherapy, he will receive his stem cells, and then we wait for his body to heal.

The main concerns for Michael during his transplant are infection and high fever. Catching a common cold can be life threatening during this process, so we will be very cautious about visitors this summer.  After he returns home safe and sound, hopefully by the end of July, he will be in isolation until early October. His doctors feel it will take that amount of time to ensure that his immune system is strong enough. Our daughter and I will be fairly isolated as well since I am the primary caretaker. So we will have to come up with some very creative ways to entertain Michael (and Emmy) that don’t involve leaving the house. For those of you who know me well, you know that I am so not the arts and crafts mom. But I plan to give Holly Hobby a run for her money.

After Michael recovers from his transplant, he will enter a clinical trial that helps prevent relapse. We will share more information about that with you when we get closer to the treatment.

On a lighter note, some families from Meadowbrook put together a fundraiser to raise money for neuroblastoma clinical trials, and it was a huge success. When they first approached me about this in March, they said they hoped to raise somewhere between $20,000 and $40,000. A month later they felt hopeful that they would reach $50,000. Last week they called to tell me that the gross figure to date is $183,000. Unbelievable. We are incredibly humbled by the kindness and generosity of our friends from Meadowbrook, from our neighborhood and from all over the country who contributed to this special evening.  These trials will benefit Michael and so many other children with high risk neuroblastoma.

As always, thank you for all of the notes, cards, emails and meals. They provide us a great deal of comfort, and remind us that we are surrounded by so much love and support. Take care, and have a wonderful summer.

With love and hope,


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