Saturday, October 15, 2011

Long Past Due

My name is Mike and I am the father of a wonderful 16 month old little girl named Saoirse and the husband of the love of my life Kezia. I have put off this blog for 10 long months because quite frankly... I was avoiding it and scared of the emotions it will bring up. I can no longer avoid it. I need to share my story.. no wait, I need to share my life during these past 10 months. Back in January of 2011 my wife Kezia was diagnosed with Stage 3b Hodgkin's Lymphoma. Back in the beginning of May of 2011 our daughter Saoirse was diagnosed with Stage 4 Neuroblastoma NYMC gene amplification. I am going to tell you about my life over the last 10 months, but first I need to say that Kezia and I are extremely stressed right now because we are currently deciding on our daughters next step in her treatment. Saoirse has had an excellent response to her induction therapy, which was 6 cycles of chemotherapy and surgery to remove tumors on her Adrenal glands, which were also removed. The next step is either a Stem Cell transplant, which includes 5 days of extremely high chemo therapy which will give her short and long term effects. The other option we are looking at is 3F8 antibody therapy at Sloan-Kettering in New York City, which has no known long term side effects. It is painful during the treatment though which is managed with pain medication. Both have similar results. But there is no guarantee that the cancer will return. Neuroblastoma is highly aggressive and has a high probability of coming back. I can not say that this will be the hardest decision we ever make, but it will rank up there and is currently number 1. I was leaning to the transplant. I think this is because i am a creature of habit and am comfortable with the staff at Children's Hospital Boston. The transplant is extremely hard on the patients. Kezia is leaning more torwards the less toxic 3F8 antibody therapy. We just returned from New York where we met the doctors who specialize in Neuroblastoma. Sloan-Kettering is a nice place and everyone was very friendly. Good bedside manors are very important to me. I was glad to find a warm place, not a cold one. I have not choice but to look hard at this therapy for Saoirse because it is less toxic and results are the same as Stem cell transplant. My conflict is why isn't Children's Hospital Boson doing this antibody therapy instead of chemo and transplant.. It may simply come down to cost and preference of treatment.

We must do what is best, or what we think is best for Saoirse, not us. After much reading and soul searching, I am now leaning more towards the 3F8. If i can provide her with a less toxic treatment and get virtually the same results, it comes down to quality of life.

Anyway, we are heading back to New York on Monday to meet again with the doctors at Sloan and to have a different marrow biopsy done for saoirse. I currently have a cold and need to get better by Monday so I am off to bed. I am sure this is very choppy for a first blog post, but I promise to be more detailed. Tomorrow I will also start telling my life during the past 10 months

Kezia blogs too..

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