Tuesday, March 18, 2008

5:04 AM 3/18/2008

Good morning! I know, I played hooky yesterday. To make a long story short, I woke up with an excruciating headache yesterday morning and hid in the dark until about 6:30 AM before I became even remotely functional. I was incapable of walking into the bathroom, much less thinking about what I should write in the diary. By the time I had semi-recovered the kiddos were stirring and, low and behold, a new day had dawned.
It has been a busy couple of days. It all started on Friday with a photo shoot. The CNCF had its final day of shooting for its neuroblastoma awareness campaign and collection. Over the two day shoot Geno took some of the best pictures I have ever seen. To say that they are incredible is an understatement. The shoots themselves were quite fun. The kids had a lot of fun and we did as well. I am biased but I have to be honest, kids with neuroblastoma are just down right adorable. There wasn't an ugly one in the bunch.
As you would come to expect on any photo shoot with that many kids with cancer there was also high drama. Lukas, one of our youngest models, ended up in a surprise 10 hour surgery and Ayla, another one of our fellow neuroblastoma survivors, ended up in the ICU and was never able to even make the shoot (for obvious reasons). In fact, I spent as much time up at the hospital with the families on Friday as I did at the shoot. Over the last few days many have asked how the both of them are doing. Although I have been by several times I have not been able to see them. Both are in the ICU and I figure that if I don't see them out and about then they probably don't need to see me. So, in short, other than to here that they were probably going to be moving Lukas from ICU soon, that is about all I know.
The weekend was splendidly average and normal. In fact, we did absolutely nothing out of the norm. It was perfect. The urchins spent their time in the trees and rummaging around the backyard. Lynley did chores and I (very wisely) did exactly what I was told. Complete bliss.
Yesterday was time to play catch up on about 10 projects that I have up in the air. It was a busy day but nothing to write home about. I am happy to say that my headache did finally subside. The kids were all late starters. Getting back into the swing of things after spending a week on spring break is always a little tough. I am happy to report that the kids all made it back to school and to reality without incident. As is usual, Sydney and I came home from speech therapy to find the rugrats perched in the tree. For the next hour they hung in the tree as my wife and I chatted up the day and prepared for dinner. All in all, it was a pretty good day. I will certainly take it.
Today will be another busy day. At noon we will be having CNCF's online seminar on bone metastasis which will be the first of what I will hope will be an entire educational series for families. Dr. Heidi Russell will be providing an hour long presentation on the subject for everyone who wants to attend. It will be valuable information for anyone that wants to know how neuroblastoma metastasizes to the bone and how it is treated. More information on how to participate can be found here: https://www2.gotomeeting.com/register/402147690
That is about all I have time to report. As you can see things are truly and completely, well, swell. We are still waiting on the final results on Sydney's marrows. The last test that they were going to do was a fluorescence in situ hybridization (FISH) for NMYC - think of it as "FISH"ing for NMYC. Oh, that was bad. I have become way too nerdy with this stuff. Anyway, this is another very sensitive way to test for the presence of neuroblastoma. I imagine that Dr. Russell will hear something today. Isn't that convenient? This will be our last opportunity to discover neuroblastoma at this point - not that I want to.
Purpose is chugging along at a fast clip.

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