Friday, April 24, 2009

Work up week

What an eventful week. Dylan had a full work up this week, with a karate demonstration mid week to break it up. Karate was great fun, Dylan and I joined the rest of the "Kids kicking cancer" team for a demonstration in New Jersey at The Robert Wood Johnson Foundation. Dylan did so well and is just awaiting his arrival of his orange belt which he is very excited about.

Today we finalized the week with a MIBG scan and CT scan. Dylan had a restless nights sleep and so did I. Something just made today's scans a higher than normal anxiety level, I just put it down to the many friends we have, who have received news of relapse in the past few weeks, so I guess it had us all on edge. By afternoon we got a call from clinic that the CT scan showed a "spot" on his lungs and they wanted him to come in again so they could listen to his chest. My heart dropped and we went back to clinic. I knew that the last CT scan showed a "spot" on his lung and they concluded it was some type of infection and not disease. Hearing the word "spot" today freaked me out. So we sat in clinic, I had thoughts racing in my mind, was it the same "spot" and if so was it bigger, was it disease? What is it? Was it on the MIBG scan too? Then Dr Modak came to see us, he explained that there is nothing to suggest it is disease, in fact most likely it is another infection that he has no symptoms of and will just disappear on it's own. The "spot" was not in the same area, and the last one had cleared up. Just to be sure, we went and had an x-ray done too. Then Dr Modak read the MIBG scan and said it shows stable disease with slight improvement!!! YAY!!! His urine markers also came back VMA 13 HVA 24 which is basically the same as the last urine tests done in September 2008. All is great then, false alarm with the lung and better results to the last work up. Dylan will have his bone marrow biopsies done on Monday.
For now, the treatment of Perifosine will continue.

On Monday April 13th, we had a celebration of Devin Reid's 21st birthday. Devin would have loved nothing more than to spend his birthday in a NYC bar, so we gathered parents from the RMDH and had a toast to Devin. We released 21 balloons and it was a great way to remember his life instead of mourning his loss. You can watch the video HERE and view photos HERE

Cain plays at Carnegie Hall this Monday night, he is so excited, I am just disappointed that I cannot take photos or video to show you all, but I will make sure I write up a blog on the evening.

Dylan features on the RMDH Imagine fund raiser advertisements, I have scanned and the photo and posted it below. It came up fantastic, I just love it.