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Anyone's DC had a bone marrow transplant?

(11 Posts)
hazlinh Wed 18-Sep-13 17:55:16

DD, 9, was diagnosed with high-risk secondary AML in May. She had ALL when she was 5. Was in remission for a year and a bit before being diagnosed with AML. As it is high-risk secondary leukaemia, the doctors said she needed a bone marrow transplant.

The doctors put her on a clinical trial and after several rounds of chemo, she is now undergoing conditioning for the transplant. The transplant, using cord blood from an anonymous donor baby in the US, is on 27 Sept. Today is Day -9. We are excited and nervous and anxious and really worried and just do not know what to expect. They have warned us about GVHD and late side effects. I do hope we are doing the right thing for her...

Am also worried as she is having more and more mood swings lately...she has been shouting at the doctors and nurses every day. she is probably nervous about the transplant but does not want to talk.
Has anyone's DC had a bmt? I would be grateful if anyone could share their experiences.

expatinscotland Wed 18-Sep-13 17:58:55

My daughter, age 9, had one for AML which was not curable with chemo alone in 2012 (FLT3 mutation and t 6,9). She suffered a series of infections which prevented engraftment (it was a cord blood donor as well) and GVHD. She died of respiratory failure from pneumonia a year ago in July.

I hope things go much, much better for your child and she engrafts quickly and stays in remission.

expatinscotland Wed 18-Sep-13 18:00:33

Once conditioning chemo is begun, there is no turning back, the patient much be transplanted the day it is completed.

For us, it was not the right thing but the only thing we could do for our child as her cancer was not curable with chemo alone.

hazlinh Wed 18-Sep-13 18:15:18

Oh god am so so so so sorry about your daughter...thank you for sharing your story...

yes I realise there is no turning back... it is supposed to be the best chance of a long-term cure for DD. I guess the reality of it all is only now kicking in because things moved so fast for us.

expatinscotland Wed 18-Sep-13 18:17:48

Yes, high-risk AML is not curable with chemo alone so a stem cell/bone marrow transplant is, so far, the only option for long-term survival or cure.

It is not without risk, which you know, even if successful, but hopefully all will go well for her.

BCBG Wed 18-Sep-13 18:23:50

hazlinh, I have no experience and Expat sadly has far too much sad but I just wanted to say I am one of thousands of MNers who will be praying for your DD. A friend of mine died this summer from leukaemia three weeks after diagnosis and has left young children. It is a bastard disease, but they have successes and with support and research will have more and more. I truly hope that everything works out for you and DD x

Andro Wed 18-Sep-13 22:56:20

I have a close friend who's sister had a transplant; it was touch and go for a while and she was desperately ill...almost 20 years down the line she is still alive.

I hope your DD has a good outcome, the next few weeks will be a relentless rollercoaster so try and be kind to yourself.

hazlinh Thu 19-Sep-13 02:39:59

BCBG thank you. So sorry to hear about your friend...

Andro thanks for sharing. Wow 20 years is a long time. That is great news.

lisad123everybodydancenow Sun 22-Sep-13 21:04:39

Message withdrawn at poster's request.

TabithaMcKitten Mon 23-Sep-13 01:34:37

My son has ALL and one of our hospital friends relapsed four weeks after finishing treatment. She had a BMT and has done really well. It's been a bit of a roller coaster for them, but has been a great success. I wish you and your daughter lots of luck and strength for the months ahead xxx

hazlinh Wed 25-Sep-13 15:20:16

Hi lisad, we are in Singapore right now, dh is working here. thanks for the tip.

tabithamckitten, thank you!

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