Neutropenic

I just wanted to check in and let everyone know that, as promised, Eli’s counts have hit bottom. We went in on Tuesday to get his counts done and he was very low (although his platelets and his red blood have always been good through all of the chemo he has received). Friday’s counts were zero (his ANC wasn’t even reportable). His red blood was good though (9) and his platelets were really good considering (48). Those numbers will mean something to the other cancer families. Eli has always been a platelet making machine, he has received ONE platelet transfusion in the past 22 months (this is where parents with kids with cancer gasp because many of his friends have had dozens of platelet transfusions). I think he has only received red blood less than a handful of times as well. Since his white blood cells and absolute neutrophils are low, I have been giving him a nightly GCSF shot to try to stimulate his counts. Since he is officially neutropenic (no counts), any fever that Eli gets will be an instant admission to inpatient where he will stay until his ANC comes back up. They are predicting that this might happen at any time and that his counts might not come back on their own and we will have to give him a “stem cell rescue” with the stem cells we have banked here. Eli has to wear a mask now anytime he is downstairs and around a lot of people. We just appreciate every single day that we can be out of the hospital. Monday we will go back in and get his counts again. I predict they won’t be much better. He has lost about 2 pounds so far, so the chore of keeping his food intake up is back on. He has really been craving pizza lately, so Delizia has been getting our business the past couple of days.
We went to the NY Mets vs. Pittsburgh Pirates game Friday night with a bunch of friends from the Ronald McDonald House (with a mask of course) and that was really fun. Yesterday we went to Central Park to walk for a bit at the Kids Walk for Kids with Cancer event. It raises money for projects done by Dr. Cheung at Memorial Sloan Kettering. His idea for the money this year is to start working on a humanized 8H9 (the medicine we are about to do for Eli, which is also mouse based like the 3F8). It will be beneficial for brain cancers other than Neuroblastoma, so it’s a really good project (the humanized 3F8 is essentially done and just waiting to be rolled out later this year). They always have a great turnout and thankfully the rain stayed away today for the event. It’s always fun to see the Nurse Practitioners and Doctors there in a “non hospital” setting. Eli and I were also asked to talk about Eli’s journey a little bit for a camera crew that is doing a fundraising film for Memorial Sloan Kettering last Tuesday. We talked in front of the camera for about 30 minutes and Eli did a great job of sitting still, even though it wasn’t feeling very talkative. Ok, he MIGHT have been bribed with a trip to the toy store if he did a good job, but I’m sure that was of little consequence. He thought it was funny that the make up artist had to “de-shine” my head so it wasn’t glaring too much with all of the lights. I don’t know how much they got that they can use, but I was glad to be able to help out a little bit so they can get more funding for the great activities and such that they provide the kids/families at Sloan. It’s always good for PR when they can put a bald kid in front of the camera. 🙂
I discovered that a seventh Becker Underwood IT employee will be shaving his head in solidarity and since he is from Australia, it’s now officially a global event. 🙂 They are creeping up towards their goal (less than one week to go)! Thanks to everyone who has been supporting them and St. Baldricks. http://www.stbaldricks.org/participants/team_info.php?TeamKey=2009-64611 One of my coworkers that is shaving his head on Saturday stopped by with his new wife to say hi while they were on their honeymoon. They are even coming home early so they can be there for the event on Saturday! We had a great chat and they were able to experience some real NYC pizza and stromboli from one of Eli’s favorite restaurants. In an hour or so, one of Eli’s great buddies (Griffin – http://www.caringbridge.org/visit/griffinschager) is going to be pulling in, so that will be a great reunion and Eli is very excited about it.
This upcoming week we will be continuing the GCSF shots and waiting for the impending fever that will send us inpatient. Please pray that Eli’s counts will come back up (preferably on their own without the need of his banked stem cells)!