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April 28, 2012

Dear Friends, Update: The results of Michael's recent surgery and chemo were not as good as hoped for. Michael's cancer has returned at the sites of his surgeries and a new spot has emerged as well. Yesterday's MRI confirmed that all are growing rapidly and no longer responding to treatment. The family had hoped to try and arrest the cancer with MIBG treatment - a high dose radiation protocol that requires the patient to be isolated in a lead lined room for 4-5 days with very limited exposure to caregivers and family members. Because of the advanced state of his cancer, and the risk to Michael and to his caregivers if something went wrong, the decision was made not to proceed. It is with a very heavy heart that after a courageous two and a half year battle I tell you that Michael is in the end stages of his disease. He now has a matter of months left. The family has been told to expect perhaps another 2 months where he can manage some semblance of the life of a little boy. However there is no real way to predict the progression of his cancer. Michael began experiencing significant…

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April 18, 2012

Dear Friends, UPDATE:  Michael was scheduled to begin MIBG this week.  However, it has been delayed due to a national drug shortage.  It will now be from April 30 – May 7.  Alison will take both children on the 30th and Mike will join them on May 4th. Michael had another round of high dose chemotherapy in an attempt to keep the cancer at bay while waiting to begin MIBG treatment. Scans were last week – CT scans, MRIs, MIBG scan and bone marrow biopsy.  The good news is that Michael's bone marrow is negative.  The bad news is that there are currently three areas where they can see active cancer growth – the same left eye socket, the same T2/T3 area of the spine, and an area in the lower back. The radiologist who analyzes the scans in detail has not met with Michael's oncologist, so we do not have specifics yet.  We do know that these three areas have grown quickly since his last scans in mid-February. The plan as of today is to move ahead with MIBG as scheduled.  However, Michael’s oncologist is concerned because he cannot be treated for six weeks after MIBG, and the rapid growth…

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