CHANGING EXPECTATIONS

What are your hopes for your kids counts?

I remember when Dougie was first diagnosed, I used to think that a reasonable count was anything over 100K and I would definitely have been worried about anything under that. Then by the time he'd had a count of under 20K for 5-6 months, I can distinctly remember thinking that anything over 20K would be fantastic - the first time he got a count of 28K we went out to tea to celebrate! After the first 6 months his count started yoyo-ing all over the place, and I thought that was a bit of a nuisance (ever ungrateful!), and that I would happily accept a constant count of 60K and be able to not worry. As his count has yoyo-ed but at lower numbers for the last couple of months, I've changed my expectations again. Since 30K seems to be the "magic" number for getting on with life without restrictions, I've found myself thinking that actually a consistent count of 30-40K would be just great. I think I'm finding it more difficult to work out how to keep Dougie safe with a count that seems to dip into the twenties and teens every 3-4 weeks than I did when it was constantly low. I think he is low at the moment because of all the petechiae and bleeding under his skin - he has marks EVERYWHERE!

I know that Dougie would be completely satisfied with a stable 30K - mostly because it would get me off his back. LOL, I had a major worrying session when he went out on his bike on Saturday, and he quite rightly pointed out to me that he doesn't need a lecture on safety everytime he goes somewhere on wheels!!!

Of course, it goes without saying that a complete recovery would still be great......

Ali

I know how you feel Ali....i do the same thing!! At this point I pray for numbers to be above 20,000 so he does not have to have treatment, but befor i would ask for normal numbers. It's funny how your expectations change with ITP.

You've said to me befor that it must be hard with a toddler with ITP, but I think it would be harder with a kid who is Dougie's age. Devyn has no idea what is going on, he just know that mommy say "be careful" far too much!! I think it would be hard telling an older kid that they can't do what they love. It's great that you allow him to do the things he loves but with a watchful eye.....you'll have to give me some pointers on that. Devyn will be able to start soccer next year so i'm praying that his counts will level off at least to a safer number so he can do that.

I hope that Dougie's counts are better then you think....Devyn had some petechia and marks where he scratched last week when i took him for a CBC so i thought that he was really low, but to my surprise he was higher then i thought. But i can only assume that he was higher then 76,000 and dropped down to cause the petechia....who knows anymore!!! I take him on Tues afternoon and we are just doing a test at a local lab instead of going to the childrens hospital so we will probably get the results wed morning. Good luck and keep us posted!!

Deanna

Ali,
Since we hit Camden's one year mark this month we opted to take him to a larger Children's hospital in Seattle to see a different onc/hem and it made me think of you The dr's perspective was not to sugar coat it, but say that he is now considered chronic and will be dealing with this for several years or his lifetime. She said I can take off some of my bubble wrap and let Camden be active above the 30,000...not the 50,000 we had been told. She did reiterate that absolutely NO heading the ball in soccer, NO football, lacrosse, but said bike riding with a helmet, basketball, and hardball as long as he wore a batter's helmet out in the field. Best of all, no longer are we going to be doing lab draws every 2-3 weeks, but every two months-HOORAY
Praying Dougie's numbers hit and stay at an "activity" level!
LaMonica
mom to Camden (9yrs old dx 6/09)

You're right - as parents, we change our reactions and expectations over time. When Brady was first dealing with ITP, I remember the doctor telling us to just have him be a "couch potato" one weekend when his count had dropped to 24k but we wanted to wait a couple days to re-check him. Now we don't even think about checking him unless he gets several nosebleeds in a row or has other symptoms. Sometimes we'll go six months without thinking about getting a count. Our doctor mellowed over time, too. They definitely allowed us to direct Brady's ITP after some time had passed (we've since changed doctors and the current doctor is also great about letting us take the lead and not pressuring us to treat).

For me, I still keep hoping for consistent counts over 75k, even if that is unrealistic. I want Brady to be able to do anything (amusement parks, wakeboarding, skiing, lacrosse) without having to have a treatment. But after 8 years (ugh!) I like the fact that Brady usually stays above 30k and plays basketball, flag football, etc. just fine. ITP is not nearly as intrusive in his life as it used to be. He was at a friend's house last weekend, playing on a slip n' slide, swimming, bikeriding, etc. and he doesn't even think about ITP. But he also loves doing the higher risk things, so we sometimes have to treat him before his participation in one of these events. We're coming up on wakeboarding/tubing time, so we probably should check his platelets again. It's important to him to do these things NOW, when he's a kid, so we sometimes have to treat. But I am grateful that his counts seem to have levelled out and that we've mellowed out over the years!

Hoping that Dougie's (and all the ITP kids!) counts are higher when you check.

Beth - mom to Brady (age 13, diagnosed 1/18/02) and Matthew (16)

Same here - we would be ecstatic if Danica would stay above 30, but would also be happey if she stayed above 20. No such luck, but we can always hope.

LaMonica

How lovely for Camden. I hope he is out there enjoying all those activities.

I am singularly failing to get Dougie to take much notice of activity restrictions at the moment. He was low all last week and most of this, and I know that he has continued to play footie at break all the time (I asked him and he didn't even bother lying!). I worry about heading the ball, but he has forgotten on a few occasions when i've been watching the game and done it by mistake and he doesn't seem to have come to any harm (it must be quite difficult not to head the ball when you've spent the previous 6 years doing it). I have got him to wear a bike helmet, but only because I've threatened to lock his bike up for a fortnight for every time I see him without it.

I hope you have better luck than me!!

Ali

I have certainly changed my expectations for counts for Jordan after one year now. Still hoping that this crazy ITP will eventually resolve, but in the meantime, it sure would be nice to have stable numbers, even if they are lower, so that she (and I) could feel comfortable doing sports again for school. She definitely is going longer between treatments this year, but she still drops to the teens and twenties, just not as fast it seems. Her doctor would of liked her to take a rest for now but she instead asked if she could play tennis and she still dances for her school. I am more lenient with letting her do things but still worry all the time. Doctor said what about golf? and we both tried last fall, but she said she enjoys the tennis much more. I think she might go back to taking some dance classes this fall too. By the way, Ashley Galvan, who danced at the studio where Jordan danced, made the top 11 this summer in So You Think You Can Dance. This is so exciting for us. Jordan actually danced with her competitively in a few numbers a few years ago. It's nice to read that for the most part, our kids are keeping up with everyday life, its just hard when your kids know what they used to do and still want to do it!

Enough whining for me, we are off to the PDSA conference in Las Vegas. Hoping to ask some questions and hopefully meet others. Its about a 5-6 hour drive for us but thought we'd take advantage since it is do able for us this year.


Wishing more platelets for everyone here...

Karen
mom to Jordan