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July 25, 2005
By Margot | July 25, 2005
Holy Cow. What a week. We have been through an emotional ringer. I’ll start with the good news: SAM HAS NOT RELAPSED/DOES NOT HAVE PROGRESSIVE DISEASE! There was a mix up in radiology and there was an x-ray referenced in one of the scan reports that did not exist that led everyone to believe that there were two new spots on his leg that were not there upon diagnosis. We “redid” (actually did for the first time) the X-Ray this past Saturday on the recommendation of the doctors from Childrens LA. The x-ray was clear. The spots on the bone scan are spots that were there initially and the difference in the MIBG scan was due to the fact that we used a new dye that has much more resolution. They are calling these two spots “persistent” not “progressive” this is a BIG distinction in cancer vocabulary. Progressive means the spots have grown anew in spite of the chemo. Persistent means the spots have been there since diagnosis and though it’s not great to have two existing spots going into stem cell tranplant, the doctors believe they can be cleared with the stem cell transplant, radiation and accutane therapy. Two new spots would have made Sam ineligible for transplant.
A few words here about my amazing husband…
If ever you are in a fight for your life, Neil is a man you want on your team. He has researched every aspect of Neuroblastoma, found every specialist, defined every clinical trial and he has been working tirelessly on starting fundraising efforts for pediatric cancer (more on that in posts to come). When we got the news that Sam had progressive disease he was immediately on the phone to get a second opinion from the doctors at Childrens LA. When we met with them last Thursday, they thought it was not progressive (the scans didn’t add up) and that we should do an x-ray and then proceed to stem cell transplant if the x-ray proved to be clear. We then had a choice of doing an extra round of chemo first or going straight to stem cell transplant. We had these glorious, brilliant doctors calling us on a Sunday to give us their opinion of the two choices because Neil had tracked them down. He’s read every biology/DNA book he can get his hands on as well as books on anti-angiogenisis (Dr. Folkman’s War if anyone is interested) and other cutting edge cancer treatments. He’s read books on the mind/body connection and contacted the author for advice about kids cancer. He understands all of the complex biology of the tumor and treatments and believe me, Neuroblastoma is a bear of a cancer. In short, Neil is the Superdad of advocates.
We are waiting to get approval from City of Hope for transplant on Thursday. Woohoo (fingers crossed) I know, wasn’t I terrified of transplant three weeks ago? Ah yes, but that was three weeks ago before I fully understood that stem cell transplant is absolutely where we want to be ;-). I have been scrambling to get tests redone, scans collected, get Sam a dental check all before 9am tomorrow morning when we have an appointment at The City of Hope. We will have an answer tomorrow on whether or not we are approved. Big day tomorrow. I promise not to leave everyone hanging for another week.
Margot
Topics: Progress Reports | Comments Off on July 25, 2005
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