Very sad and disappointed son..........

Platelet count today was 12.

So no skiing next week although I think I've persuaded Dougie that he should still go for the rest of the experience. Its still a week away with his mates in Italy after all. Just got to double check with the hospital that this is ok because I was so devastated for Dougie at the time that I am not sure I heard some of the conversation properly. Dougie was very upset at the time - he wasn't talking at the end of the consultation because he knew he would start crying. I also need to double check with the school that they are still happy to take him, although I did have the conversation last week and they didn't think it was a problem.

The one and only good thing about the visit was that the consultant has made an appointment for us to go back in March and arrange some treatment - probably Rituximab but possibly whatever promacta is called in the UK. When Dougie was talking about the other things he does and how he didn't think that skiing was any worse, I think it became clear to the consultant that Dougie wasn't really taking any notice of activity restrictions, or at best, paying lip service to them. He asked Dougie at one point whether he thought he could adapt his life to ITP, and when Dougie said definitely not, he said that they would have to do something about adapting ITP to fit Dougie's lifestyle.

I am gutted for Dougie...........and so is my bank account, because I was feeling so sorry for him that we went and bought an IPod on the way home! It did cheer him up somewhat though!!!!

Ali

Oops, wrong category yet again.....sorry!

Darn - that's a bummer. Hopefully Dougie will still go on the trip and have fun - there will probably be someone each day that wants a break from skiing and will hang with him.

I know Dougie hasn't treated much but I feel like I remember you saying that he had prednisone at the beginning of diagnosis. Do you think that would be worth taking for a short time, to get his counts up just a bit? Prednisone doesn't work well for Brady but way back at the beginning that's the first thing his hematologist prescribed when Brady was diagnosed with a count of 2k and we were scheduled to go on a Disney cruise the next week. It got his counts up a bit, so we felt safer going on the trip.

Good luck with everything - and I hope he's enjoying the iPod! I understand the impulse - these kids deserve the treats!

Yep, big bummer!!!

The consultant said that Dougie's previous response to steroids did not give him any confidence that it would bring him up far enough to be safe. I honestly believe that Dougie would be safe anyway, but I guess that there are times when you just have to listen to medical opinion regardless of how inconvenient it is. At the end of the day, we both have Dougie's safety as a priority.

The day got worse anyway, cos the school have now decided that they don't think he should even go on the trip as Dougie not skiing would "mess up their supervision ratios". So Dougie is going to visit his Grandma next week instead and hopefully we will get the ski money back and are going to use it to book a long weekend for everyone somewhere in Europe - I am thinking Rome, Budapest, or Krakow possibly. Hopefully next year, the ITP will somehow be under control and Dougie can rebook to go skiing then.

Somethings are just not meant to be........

Ali

Ali -

I'm sorry - ITP stinks.

But a family trip to Rome, etc. would definitely help cheer me up, so I hope you can make that happen for Dougie!

We have had such a warm winter that the skiing/snowboarding hasn't been great on the East Coast of the U.S., which makes it easier to avoid for us and Brady. Here's hoping that there's a lot of snow and high platelet counts next year and a rebooked school holiday for Dougie!

Sorry about Dougie's counts and trip cancellation. I am happy they are planning to treat him though. Maybe the Rituximab or promacta will help. Do you guys have NPlate?

Hi Donna,

Yes and no - I think that both are still at the clinical trial stage for children. Dougie's doctor is doing the Promacta trial. He said that he was going back to the ethics committee next month to get permission to extend and continue the trial and he is going to send me the paper that he submits so that I can read it.

I asked about low dose rituximab and he said that he treats with a low dose but for four weeks. I am not quite sure about the reasoning behind the four weeks, but its good that its low dose.

If he manages to open the Promacta trial again, I am tempted to go with that because it might not be available further down the line if Dougie needed it then. He said that he could get approval for rituximab at any point because of Dougie's count. So if the Promacta doesn't work then he could still try Rituximab but not necessarily the other way round.


I am quite happy that we've done watch and wait until now, but equally happy that now is the time to try some treatment. Just hoping it works now.............


Ali