Transplant

[kellym]

Hi all, I've been given ellas biopsy results today, and it's showing no improvement four months after atg.
Our consultant is now looking on the register for a bone marrow match.
The thought of transplant is very frightening, is there anyone on here from the uk with a child that's had one?

[squirrellypoo]

Hi Kelly.

Are they just starting the donor search as a backup plan? I was under the impression that you need to wait at least 6 months before deciding that ATG hasn't had an effect, as sometimes it takes a long time to manifest.

Having been through the donor search myself, it does take a few months to test yourself HLA tested (twice, just to be sure!), then find the broad matches, then have each of them get retested, and then assess who's the best match, and work around their schedule, etc etc. So it could just be that Ella's team want to get this started early.

Best of luck with the search!

melissa

[kellym]

Hi, our consultant said that her biopsy showed no improvement what so ever, so he now thinks it unlikely she will respond to the atg so wants to get the search underway now.
Yesterday was a shock even though I knew in my mind she hadn't got any better, the time between transfusions are still the same, it's like she's no better, or worse.
On reflection I'm starting to wonder if a transplant might just be the better option as it allowed seems inevitable in the end.
I've read a lot about transplants and what happens, but my consultant hasn't really told the risks or success rates, he just said wait to meet the transplant co-ordinater, but it's fustrating as I have a million questions racing through my brain, and the thought of the chemo and her losing her hair upsets me, even though I know I shoudnt be worrying about that compared to the bigger picture, but she will find it hard, but I feel confident she will win this fight she's a tough little thing, even with hb at 6 shes still running around!

[Hopeful]

Hi Kelly,

I'm just putting this out for comparison. My 4 month BMB showed absolutely no improvement as well. In fact, it was more discouraging. This was despite the fact that I had seen some improvements in my counts. My 7th month BMB was the first to show some signs of a recovering marrow. My doctor had told me that my counts would improve before I would see it in the marrow. It seems counterintuitive to me though!

In any case, it's still wise to start a donor search in parallel.

[evansmom]

Hi there,

Sorry to hear about your little girl's lack of response to the ATG, four months out.

I've been in your shoes with my then ten year old son here in Canada three years ago. He too was a non-responder and we were given the choice of repeating the ATG treatment or going to transplant if a donor was available. For us, in a way, it was easy. We learned that we had a donor available about four weeks after we had the "the ATG treatment didn't work" meeting five months post ATG. Given that we had a well, though not perfect (9/10), matched donor, we agreed to transplant. We didn't see much point in repeating a treatment that didn't work in the first place. ATG is the appropriate first line treatment in a child (or adult) who does not have a good sibling match, however, it is a treatment used to 'reset' the immune system. Not every case of AA is auto-immune and I hope we get to the point where immunologists can quickly determine this at the time of AA diagnosis. If the AA is auto-immune in nature, then there's a good chance that the ATG and cyclosporin wil work. If, however, the AA is not auto-immune driven, then the medical team will know that doing the ATG will be a waste of precious time, and transplant options can be identified right away.

Look into transplant options now, kids tend to do very well and going in now rather than later has the advantage of fewer transfusions and thereby fewer antibodies circulating and less ferritin (iron overload from RBC transfusions)puting liver and heart at risk with the cytotoxic drugs that need to be used in transplant plus less risk of picking up a nasty, hard-to-get-rid-of fungal infection from time spent with a low neutrophil count. Fungal infections without neutrophils are difficult to treat, fungal infections in transplant without neutrophils or an immune system, are often deadly.

Evan's journal, start to finish of his AA/BMT journey is linked below.

Best wishes,