Rituxin update

Snapped this on the way home from the hospital. He was chewing on the straw beforehand and then fell asleep.
Love it!

Sorry to keep everyone hanging and not updating until now. Beckham's Rituxin infusion went fairly well, with only moderate reactions to the med. When he received the infusion last year he reacted to the drug with violent shaking, increased heart rate, and a high fever. This time around he seemed to do great until they turned up the infusion rate, at which time his heart rate spiked super high and he turned over and vomited all over the bed (and me). They quickly turned the rate back down and Beck did great after that. He actually did so well that we made it home on the night of the infusion! Beck was scheduled to stay for at least 24 hours, but as the night rolled around, there was no reason to keep us there when he was doing so great! Love it!

The hard part now is waiting for results. With the treatment last year we could view his results with labs - platelets rising, hemoglobin rising -, but this time, Beck, already has normal levels, and we will just have to watch him physically for less bruising. BOO! 3 more Rituxin treatments are planned in the next three weeks (every Tuesday for a month) with the possibility of an IVIG treatment thrown in there. We are hoping to do all of this as an outpatient, and in Des Moines.

Just a couple of pics to show the effects of this disease:

I snapped this of his legs while on our daily walk. This only shows a portion of his legs, and trust me, they look much worse on the other sides!

Not very clear (how do you get a 2 year old to hold still for a pic?), but it shows when he burst an entire blood vessel in his head.

All of these Rituxin treatments will severally immuno supress our little guy, which means LOCK DOWN! Yeah (ha ha)! Truthfully, this is nothing new to us, but I was loving the fact that I could take Beck to the store and to church, and that we were hoping for a vacation to visit family and to meet the donor family at the Transplant Games. Big bummer. Oh well. There's always next year! And, who knows, maybe our Beckham with surprise us and do really well this time around. Here's to hoping and praying!

-Beckham & Co.