Still holding on to hope..slowest road to recovery

Been a year and half since my little guys journey with ITP started..for the first 10months his counts were 0-3 EVERYTIME, no matter which clinic no matter how often unless on treatment which would maybe get him in teens for a day or 2.In May he went up to 9, fell to 7 once (I know not a difference) BUT EVERY count again..no matter where or often, his count was 9-11. In Oct while sick went to 19 than 21, back to 13..Dec sick again, 23, than 18..Monday 18 again. He is so consistent with his counts, and I thank god everyday since May I have never heard below 5 again(although it is still a constant fear, I know it could happen). He is taking baby steps for sure, but it is giving me a little hope. Something somewhere has to be changing...RIGHT??? If it continues this way it is going to be the longest road to recovery, but it would be AMAZING to hang out in 20's or higher..I feel we have come this far, if we can get to 20's we can do it!! He has come so far!

Today is his birthday!! Silly, but I am a little sad will never be 2 without ITP..but he is doing great we have alot to look forward too, and just maybe by 4 ITP will be in the past

Keep the faith Crystal! And I hope your son had a lovely birthday

Crystal,

Please post his name. I would like to add him to my ITP prayer list. Hang in there! We walk by faith, not by sight!

Jeffrey

Ali, Thank you, he had a wonderful birthday!! How is Dougie?

Funny I guess I have never posted his name..Bryan is my little guys name

I am pleased Bryan had a good birthday - kids are so cute at that age !!!!

Dougie is doing good thanks - finished the 4th rituximab with a count of 31, so who knows? We go back in two weeks for a blood test to find out whether its up, down or static - I am also keeping the faith! He has a mega bruise on his knee at the moment where he got caught by someone elses boot studs when he was playing footie on Sunday. But he said he really got whacked, so that might just be normal bruising.

If there is one thing that the last four weeks has taught me, its how incredibly healthy and lucky Dougie is. The rituximab drip was given in the oncology unit and he was generally the only person there with hair. Puts ITP well into perspective.

I sure hope Dougie is up, sure has been a long journey for him!

when Bryan was in hospital he shared a room with a little girl only 2 months older than him 1and a half at time. She had a rare cancer, she only lived 20 minutes from us and she was actually my science teachers granddaughter. Small world! It broke my heart and it was that stay that Bryan had bmb and we found out it was only ITP...I was sooo happy but felt I shouldn't show that. It really made me see it could worse. I know it is selfish but I hate taking him to his appointments

Hold on to that Hope!! We took that slow road to recovery!! Wesley was diagnosed in 2002 when he was 2. He's now 13 and had normal/near normal counts for several years. His latest count was over 300,000!! Not bad for a kid who was labeled chronic, severe and refractory to treatment. The hematologist almost released him in August - but we decided to get one more count next summer.