Dougie's count today

Not very interesting - 39.

He hasn't moved out of the 30-40s range for months now. I guess that stability is good really, because although he isn't getting the ups he used to get, neither does he appear to be getting much of a dip.

I KNOW that 39 is a really decent, safe count, but I am just bored with ITP now and want it to go away. I asked the Dr about Dougie doing rugby and he confirmed that he shouldn't be - so Dougie went back to school in a bit of a strop, and refused to say bye to anyone at the children's centre - maybe thats just pre-teenage behaviour though!!!

Hope everyone is doing well, Ali

Hey, Ali -
I guess I should say "that's great!" and "I'm sorry!" at the same time. You're right - it's good to be stable and safe, but it's a drag that Dougie can't be stable and safe at a higher (rugby-safe) count. I really know how you feel - we haven't checked Brady in a while, but he's probably in the same range. Which is fine, but not good enough for skiing or American football, both of which Brady wants to do. It's tough being an active kid with ITP. I've been feeling the same way as you lately - enough already, can we just move on to "normal"?!

But at least they can play some sports right now, right?! Brady played his first two basketball games of the season Saturday and I remember you said that Dougie is also involved in basketball.

I'll keep sending good thoughts your way and will keep praying for higher counts for all the ITP kids!

Beth

39 is a tease. It makes you say, "Whew he's safe" and at the same time it makes you think he's not so far from a count that would allow the rougher sports. At the same time, you are grateful there is no bleeding. So, congrats on the stability and hopefully he will find a full remission soon.

Hi Ali,

Although Dougie is probably not happy with 39....i know that it's a great relief that he is staying up and not dropping Great to hear!!!

Deanna

I'm so glad he's stable Ali, but I get the whole being "bored" with ITP! Camden has been stuck in the 35-50,000 range and is thrilled with his hem/onc that is letting him play basketball It does bring him so much joy, and gives me peace of mind that the assistant coach is an emergency room RN should we need immediate medical attention. I hope Dougie just had a bad day and finds some joy soon.
LaMonica
mom to Camden-10yrs
dx 6/09

Hi Everyone

Thanks for your comments. I was being really whingey on Monday when I wrote this post - today, on the other hand, its a great result and I am really pleased about it.

I think my problem is having to take Dougie to the haematologist every few months - maybe I should just stop eh! The rest of the time, I kind of put his ITP to the back of my mind and try not to focus on it. Sometimes, I persuade myself it could have gone away (he doesn't have many symptoms at the moment). Then you go to the doctors and whumpf, it is so definitely not so! Never mind. I told the clinic nurse that I had absolute confidence still that she would ring one day and tell me his count was 250!

And yes, like Brady and Camden, he is just loving his basketball. He's started playing out of school at a local club, and is hopeful of being picked for the team.

Ali

P.s. Donna, so happy to hear that Tims dental work is complete, cos I've been feeling sorry for his toothache!

Ali,

As I was reading all the posts on this thread my only thought is that I feel your "pain". When it comes to ITP, one of the words I use and hear most is "frustrated". It is so confusing and just when you think you may catch a break, you get those labs and realize that your child is very low again. My daughter was diagnosed 6 years ago. For a while, even when the platelets were okay, I would worry about when the other shoe would drop. Through time I have learned to enjoy the higher platelets and than just deal with the low platelets when it happens. One thing I know is that your frustration is normal and anytime we are dealing with our kids health, it is even acceptable.

Hang in there,

JJ

I was a little relieved to read your post and find that other parents feel the same way. I'm so ready for the day of the normal count. We test once a month and usually I'm able to put it out of my mind but then something happens and I'm sure that its gotten worse.

This board has been a God send and I'm thankful every day that I can get on and use as a reference.

39,000 is pretty good!!!

Christine

Ali, I also feel your "pain". Joshua was at 86 last week (still on 25mg of Pred) and this week down to 58 (which is simply delightful compared to the 2's and 3's he was at in July August...) but its the frustration of the ups and downs, just when you think hurray its up and we can wean some more pred or whatever the drug of choice, whump you get clunked in the side of the head with a good dose of petikia humble pie! That happened to me today AGAIN! Last few weeks have been like a yoyo and it makes it doubly frustrating when you ask hem what to do re pred wean and they say well what would you like to do!?!?!? Okay Id like to stay on the 25mg but Im TIRED of thinking and analyzing why the drop etc....thats why they pay them the big bucks...Anyways, I made the call to stay on the pred one more week and do a recheck, but Im so mopey and down....and really have no right to be with a number like that. Oh well, I share with you and everyone else the frustration and anger and sadness...
All I want for Christmas is a higher count....screw the front teeth *pardon my language* LOL LOL

Hey Angela

I'm feeling your pain more than mine!

ITP is really hard on parents at points, and Joshua and yourself have so much else going on medically too that it must all get magnified tenfold. I often look at your posts and wonder how you cope!

I am not sure that tellling you that things have got better over the last year is going to help, because that implies its a long term thing, and as I understand it, a good proportion of kids recover between 6 months and a year. However, I can say that compared to a year ago, things have got much much easier for our family as a whole. I panic less, Dougie has mostly got used to it, the rest of the family accepts it more........its just a much smaller part of any of our lives these days (all apart from when we have to go to the haematologist every couple of months, when my delusions of it having gone away get a bit shattered - but thats my own fault!). We are so lucky really, because Dougie manages to get decent counts without treatment. I often look at posts on these boards and think that the treatments are harder than the illness.

When it gets hard, I try to remember that firstly it could be so much worse, and secondly that safe doesn't have to mean normal - my expectations have changed a lot over time, and whereas I used to want Dougie to have a count within a normal range, I pretty happy with any count above 30 these days, because thats the count above which he has a normal life.

Not withstanding that, I hope that Joshua's next count brings better news for you.

Ali :lol:

Thank you Ali,
It is a touch more difficult because its not just the ITP...there comes a point when hem starts with the immunosuppression and there is a fine line where we go from treating the ITP to messing with his transplant. He's done so well transplant wise for 10 years, to have that screwed up now, to have come this far and to mess that up trying to treat the ITP would kill all of us. I don't think its the ITP per say that scares me half to death, its the fact that there is no rejection of his heart now because of all the supression drugs that he's on, BUT now that we are weaning, now is when we have to make sure that things in terms of his heart havn't gone sour. It makes me violently ill just thinking about it. Im not belittling in any way all the others who have ITP because I know that most people have other underlying medical issues, this is just me, I have high bp for a reason!!!!!! LOL Im to the point now where waiting for hem to call with a count Im having anxiety attacks!?! Anyways, I really should be happy with a count of 58 or whatever it was (brain is frozen and fried) and move on from there. Hope Ive made the right decision to stay on the 25mg pred for another week, guess Ill never know...
Thank you so much for all your support and Im so glad that you guys don't need any treatment that is so wonderful!!!!!!!!!!!!!!!!!!!!!!!! Im feeling your relief!!!! I don't want to share the pain, so Ill keep that to myself!

Glad Dougie's in the safe range without treatment, but I do understand! Wish he could just be in the normal range already so he doesn't have to miss out on anything! I am definitely loving not having to restrict Caitlin and I wish it could be the same for all parents!