Brady's at 65k 2 yrs. after treatment

A little background: Brady was diagnosed 10 years ago. His treatments have included prednisone (didn't work), WinRho (worked, then stopped working), Rituxan (didn't work), IVIG (worked at first, then side effects got too severe), and back to WinRho. Brady's last treatment was two years ago, when he received Rhophylac, which is a WinRho-type product. He actually only received a half dose because they told us after they started the i.v. (he has terrible veins, so that's always a trauma) that they didn't have enough of the Rhophylac but we could come back the next day to receive the other half of the dose. We opted out of that and thought we'd see how he did on a half dose. Now two years later he's at 65k!

We're thrilled that he's hanging in there and never thought we'd see the day where he was this high without treatment. The first few years we treated whenever Brady went below 20k because that's what the doctor recommended and Brady often started bleeding below that level and we were worried. After the first few years, we mostly just treated when Brady needed a decent count to do something that would be dangerous at low counts; skiing, wakeboarding, amusement parks. We think that puberty has had something to do with Brady's counts improving . He just finished a very physical season of high school Freshman basketball and came through it without too many bruises or nosebleeds.

Of course, I don't want any of the other kids to go through as many years as Brady has with fluctuating counts. But wanted other parents to know that even after quite a few years dealing with ITP it's still possible to recover to safe levels. We haven't actually even been to his hematologist in the last two years, so we'll do that sometime soon and see what she says. We'll probably check Brady every 6 months or so, but other than not being able to play football or lacrosse, we're figuring Brady can do just about anything he wants at this point. So, hang in there and don't lose hope!

Woohoo!!!!!!

Thats so good to hear, and really encouraging, although I hope that Dougie hasn't got another seven years to go till it happens to him!

Its funny how 65 seems like such a good count now. I would totally happy if Dougie could achieve lifetime of 65. Who needs a count in the 100s anyway!

Ali

AMAZING!! I LOVE stories with great outcomes..one's that can give us hope;) . I am VERY happy for your son (and you)...I hope he continues to have good counts for a lifetime:cheer:

I am happy to hear Brady is doing so well! Wesley is coming up to 10 years too. He's had normal/near normal counts for about 4 years now. The hematologist is always disappointed when his count is not 'officially' normal, but a good safe number is just fine with me!

Cathy

Thanks, Ali, Crystal and Cathy for the good thoughts. It's so nice to share good news with people who actually understand what it means. I get the feeling that our friends and family lost interest in this whole ITP thing a few years ago!

Ali - you're right about perspective changing and how a 65k count feels great now. But I still wish Brady would go over 100k, even though I know that's a selfish thought with all the kids who are struggling with really low counts (including Dougie). And for the most part who does need platelets in the 100s? As a parent, we all just want our kids to be able to do whatever activity they want and not have to worry about their platelet count.

Brady struggles a little bit with not being aggressive enough during basketball; he's not the first person diving on the ground to go after a ball. We were talking about it the other day and he said "well, Mom, I've always had ITP when I've played basketball and I don't want to bang my head and die during a game!" I felt badly for him and I really thought he wasn't giving ITP any thought during this past season but I guess it's hard to forget and it makes him more cautious. But it's definitely not our focus any more, which is such a relief.

Cathy - I'm happy to hear that Wesley is doing so well!

Brady is not alone in the basketball thing. Dougie was having a rant about ITP the other week and one of the things he said was that he hated the fact it had changed the way he played football - he says he now thinks about situations too much with a view to being safe rather than just playing instinctively and its ruining his game!

Its not selfish to want normal counts, because although 65 is adequate for nearly everything, 150 or so has a much greater degree of resilience in it - you could get ill and drop 100 and still be fine. And if it was me, I'd want to know ITP had GONE FOR GOOD not just got a bit better, and that would be so much easier to believe with a count of 100s or more.

Anyway, I hope he's enjoying that count at the moment, diving for every shot!

Ali

Ali -

That's exactly it on both points.

Here's hoping for over 100k for both of our boys this year (and for all the other kids)!