Holden traveling to UK - I'm so scared!

Hi everyone,

It's been a few years since I've been on this discussion group, but my sudden fears have brought me back because I guess I need support right now! My son, Holden is almost 10, and he's had ITP since he was 2. He's been on N-plate for the past 2 years, and it helps, but it's not perfect or consistent. Without N-plate, his counts were always between 3K - 7K. On N-plate, his counts range from about 15K - 70K.

Holden is in a professional boys choir, and they are taking a 2-week trip to England this summer, and I am so petrified! I am so scared of him going on the plane with a low platelet count, and I'm so scared of something happening while they're there . . .

A nurse will be traveling with them, and he will be getting his N-plate while he's there (that was shockingly difficult to arrange, but I think it's finally arranged). My daughter and I will be going over one week into the choir trip so that we can follow the choir around and hear them sing during the second week, then we're going to stay an extra 5 days to explore a bit. It's going to be such a wonderful experience, I know, and rationally I'm pretty sure that he will be fine. But the trip is only 2 months away, and I'm already losing sleep over it!

I have lived for the past 7 years with the ongoing fear that I could lose my son, and that fear is always so close that if I allow my thoughts to linger there for a moment, there are tears in my eyes.

If anyone has any advice about how to handle my fears for the next two months until this trip is over, I'd be happy to hear it!

Thank you! I wish all the best for you and your kids!

Sheryl

Hi Sheryl

I know that I get more worried about my ITP son going places by himself than I do about his brothers, so I can understand your concerns (Dougie is scout camp this weekend with a count of around 20, so I am there with you right at the moment!). However, I think its really important to get your worry under control too, so that its proportionate to the real risk. Has Holden ever had a bad bleeding episode before that makes you concerned it is going to happen again, or is it just worry about what might happen?

Things I do when my worry overtakes me in this situation are to give the organisers of the trip/activity a copy of a letter in which Dougie's doctor outlined an agreed treatment plan for bleeding and to make sure that he wears a medical ID band at all times. Then I concentrate on remembering that he is a normal boy who needs to have experiences (good and bad) to grow up.

The UK has really good children's hospitals, and I think they have all the same treatments as the States (with the exceptions of Winrho?). The UK is a small place too, so in the event of an emergency, he could only be 1-2 hours max from a hospital (unless his choir are singing in the Outer Hebrides or somewhere remote like that). The only difference in the hospitals over here is that they prefer not to treat kids if there are no bleeding problems. However in an emergency, which is what you are talking about, I think they would follow the same route.

It sounds like it will be a great trip for Holden and you. What an opportunity! Have you got your sightseeing sorted out, and where are you going visit? If Holden is singing anywhere near Manchester let me know and I might come and watch....

Ali

Hi Sheryl! It has been a while! Glad to see Holden's counts are holding with the Nplate injections! Caitlin is still on Nplate, but she is only on the minimum dose and counts are consistently over 100, thanks to Rituxan. We thought Rituxan had failed, but a few months after her last infusion, she went back on Nplate and her counts soared!

I know it is difficult with travel. Try not to worry too much...at least a nurse will be with him and you will be joining him a week later. But he is young, so I can understand! I did not allow Caitlin to travel without me until last year and that was a little hard. Have fun in the UK!!