Rituxin update #2

This week's Rituxin infusion went a lot smoother, with zero reactions to the drug, and zero hospital stays. I'll take that! Beck was pretty ticked through out the process, but soon learned that the infusion center has a HUGE stash of goodies, to which he took full advantage of. I'm really liking this "outpatient" experience, but it does make for a long day because it takes around 8 hours for the drug to go in. During that time, Beck would only watch one Wiggles DVD over and over again. I brought quite a few others to choose from, but he would only watch the same one. Next week I will be purposely forgetting that DVD!

The only "bummer" news that I have is that Beck has tested positive for AIHA (Hemolytic Anemia). Currently, his hemoglobin is at 9.0 (normal is 10.5 - 15.0) and his platelets are at 350. At least he is getting the right treatment for both the Glanzmann's Thrombasthenia, and the AIHA. Hopefully we will start seeing results soon!

One last thing to post is that we'll be on the radio today at 3:00 PM, telling Beckham's story for the Children's Miracle Network radio-a-thon for Star 102.7. You can listen on the internet at www.star1025.com.

-Beckham & Co.

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.

A new diagnosis

I guess that the title of this post says it all....and the "all" is not the best news.

When I last left off with a "Beckham update," he had just gotten out of the hospital after an IVIG treatment, and since then he has stayed stable and had pretty good labs with platelets and hemoglobin in mostly normal ranges (yeah). We were thrilled with this news, but I became concerned when he continued to bruise (and bruise like he did when his platelets were 10 or below), but the odd part was that while he bruised horribly, he had the ability to stop bleeding. He actually would bruise so badly that he would burst entire blood vessels (not normal and not good). I finally got fed up when his home health nurse drew blood on Monday and his labs once again came back normal. She agreed with me that he did not look normal , despite his lab results, and so I took the initiative and called his hematologist personally. Beck's hematologist (who is fabulous!) became concerned when I told her his symptoms and she asked us to come in immediately. Once there, she looked at Beck, called his transplant doctor, and then sent us right up to Iowa City for a special sort of blood test (platelet aggregation test). The blood test came back "abnormal," which basically means "positive" for a new diagnosis. And that is where we are now.

Beckham now has a new condition called Glanzmann's Thrombasthenia. From my understanding (and what the doctor told me), Beck's antibodies are getting smart and have learned to attack his platelets in a different manner - attacking the protein layer of his platelets instead of destroying the platelets themselves. This, again, is a very rare disorder, and a disorder that requires special treatments. The plan for now is to check Beckham into the hospital on Tuesday for a dose of Rituxin, which will be administered weekly for the next little while. There is the possibility of more treatments, but we will cross that bridge when we get there.

Beck is back in his helmet and has strict instruction to be VERY careful and avoid any sort of falls or situations that would cause further bruising. If he does bruise badly, than we are instructed to head strait the the ER. This is all fine and dandy except for the fact that Beck is NUTS and loves to jump, tackle, run, and just act like a normal boy. I guess that means good luck to us!

That's all the info I have for now. I will keep you posted on anything new!

-Beckham & Co.