Danica is booked for splenectomy

Yes, you read that right - we have seen the pediatric surgeon, and we are just waiting for a surgery date.

We are still doing IVIg every two weeks, and much to our dismay, the Rituximab did not do a thing for her. We certainly do not want to try any other drugs. However, a drug like eltrombopag would be great, but it is only in the study phase for pediatrics in Canada. If she were 18, she could get it as it is approved for adults now.

She had her vaccinations on Wednesday, and another ultrasound on Thursday. She had two ultrasounds before, and things looked good. The spleen was just on the upper limits of normal. However, it turns out that she also has gall stones!! I kind of suspected that, as she has had quite a few bouts of abdominal pain in the last few months, but never had an extreme attack. I would imagine that they will take the gallbladder out when they take the spleen out. (two for one sale).

If the surgeon is in on Tuesday, I am sure that we will speak to him then when she has her IVIg.

Ali - I could not believe it when you spoke of Dougie's broken teeth. Do you remember last summer, when I spoke of Danica's boating accident where she got 7 stitches in her lip, broke one tooth and chipped six others? Strange that the two of them have been diagnosed the same length of time, and both had tooth injuries.

Take care out there, and I will try to keep in touch a little bit more -- okay A LOT more!!!

WOW thats a big decision to take!

I used to think that I couldn't understand people going down that route, but two years is a long time with fortnightly trips to the hospital and all the rubbish that goes with ITP. Danica has been doing that for a long long time now, and as you say, there are no other decent options. You've tried some and they haven't worked. If it were me, I'd be worried about it not working, but I guess you are not really worse off if that is the case.

I think that the two year anniversary must be having an effect on both of us too. We've decided to investigate treatment options for Dougie - although to be honest neither of us are convinced that there are any treatments that we would be happy with him trying. I just think that after two years, ITP has affected his life enough. Not playing contact sport seems like a reasonable option for a six month period,or even a year, but two years on and he is still having to sit out of stuff that he really wants to do. For example, he has wanted to do BMX since before ITP started, and I've kept saying just wait a few months and you will be better, etc etc. And at other times, I let him do stuff he shouldn't be doing with very low counts, and that just makes me worry - sometimes I feel like I am playing russian roulette with him and our luck is going to run out at some point. He's only going to be 12 once and I think its time he could do normal 12 year old stuff without worry.

Keep us updated. If I was a praying sort of person, I would put a few words in with the man upstairs to the effect that I hope it works. But I am not at all religious, so you will have to make do with my very best wishes.

Ali

As an ITP'er who let my spleen go (though an adult when I did) I can say that living without it hasn't been a big deal for me. But then I was blessed to be one whose counts returned to "normal" post surgery. I have to pay attention to high fever (101) and not tough it out as is my tendency. Monitoring for the high fever is very, very important and of course the 7y renewal of those shots.

Praying that all goes well for Danica and you.

Praying everything goes well.

I'm sorry to hear Danica has to take this route, but I hope it is successful for her! I can't imagine having to do IVIG every two weeks! Danica is a brave girl!!! I hope she achieves a remission for the rest of her life and will be able to do whatever activity she is missing out on! Prayers go out to you and Danica!! Keep us updated on how it goes!!

Hi Michelle,

I've been wondering how Danica has been doing. I am sorry to hear that you have to try the splenectomy, but hopefully this will put her into remission. Praying the surgery goes well and her count goes higher!

Take care,
Shelly

Wow, that is a big decision, but i know it would be a decision which has not been made lightly. Praying the surgery goes well and this treatment is successful for her. I also hope they do take her gallbladder out at the same time. I haven't had gallstones but a few people i know have had very servere attacks and it would be good to get rid of the gallbladder before it becomes a major problem for her.