I thought about posting an update yesterday that just said “April Fool’s!” and nothing else, but I didn’t think that would be very nice, so this is a legit update, albeit a short one.
Things have been going really well. We kind of have our routine down of going to our radiation appointment in the morning and then coming back so Eli can sleep off the anesthesia for a few hours. By noon he is awake and hungry and ready to play! As you may recall, Eli’s radiation called for 10 days of total cranial and spine radiation at 18 grade and then 7 days of a 30 grade “boost” to the very small primary spot where the tumor was. We have completed the 10 days of total cranial and spine radiation and today was the first day of doing just the “boost”. It should take less time to do the “boost”, so hopefully our 45 minute visits will go down to about 15 minutes. So, 11 days down and 6 to go! We’ll be done with radiation on April 10th, a happy day for sure! After that, we’ll see what his counts are doing and then blast him with high dose irinotecan and high dose temodar for 5 days.
On Monday, Eli’s counts were still hanging in there, but by yesterday his counts were officially in the neutropenic range (neutropenic means his ‘fighting’ cells are very low, so even a little cold could be very dangerous because his body can’t fight it off on it’s own like it can when it has high blood counts). Dr. Kramer isn’t a fan of using the GCSF shots to increase his white blood count during radiation for some reason, so we aren’t giving him any shots to make his counts come back up yet. This likely means he’ll just be neutropenic longer. Much to Eli’s dismay, he now has to wear a mask any time he wants to leave his room (unless we’re just going outside to the park or something). We are also cleaning and using hand sanitizer like crazy now. If Eli gets a fever while he’s neutropenic, we are automatically admitted to the hospital to be inpatient until his counts come back up. The big judge is the ANC. It needs to be 1,000 or higher and his was 600 yesterday. I think we’ll get them checked again tomorrow to see where they are at as well, although we don’t expect them to just start coming back up on their own.
The other major development is that the impending mohawk retreat has arrived. It seemed to happen overnight. Every once in a while I would tug on his hair to see if it would come out and it never did. Then yesterday I ran my fingers through his hair and got a fistful of hair back! His pillow has been covered with long hairs now, so I think we’re going to do some buzzing so we have less mess around here. I remember when his hair started to fall out in July of 2007 and we buzzed it to make the transition a little less traumatic. Remember this?
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We have come a long way since then and this time it feels different. We are very used to seeing bald heads around here (especially now that I have one) and Eli knows that he is going to look like Daddy and that it will grow back again some day. He laughs about how it is falling out now and likes to sneak over to my pillow and lay his head on it to get me ‘riled up’.
So, we are hanging in there and certainly appreciate all of the messages of support and prayers! I’ll try to check in again sometime within the next week.
PS, don’t forget to keep checking in periodically to my NYC Photo Album on Picasa (link below). I keep randomly updating it with shots from our day!
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