Thanks so much everyone. Sorry I haven't been able to post any replies as it has been a crazy week. We are in Singapore now. We were in Malaysia last week when dd was diagnosed as having relapsed. DH works in Singapore (previously Malaysia) and his insurance was not accepted in Malaysia (despite being a global one, covering one of the biggest banks in the world), so combined with the fact that the doctor said he had not seen this before, we decided to seek treatment in Singapore. The doctor was happy for us to do so, as her test results are often sent to Singapore so they already have all her files, and he says they are more advanced in terms of treatments and transplants, and he has friends in Singapore whom he has referred several patients to before, when he could not cope and they could afford to go to Singapore. She has no siblings so in the likely event she may need a transplant, Singapore can do a half-match parent transplant from me or DH, which Malaysia cannot do. So we were discharged from the hospital in KL on Saturday, and given an appointment in Singapore on Monday, so I barely had a day to pack.
Northernlurker, yes googling was probably not a good idea, I could not eat anything after googling, I was sick to my stomach.
Acebaby, thanks so much for remembering. You have an amazing memory! I have been busy with chemo and trying to get back into 'normal' life, so I have not really been on MN much since dd was diagnosed.
Labtest, did he do chemo for AML before the transplant, do you know? So it is not that rare then? I hope all goes well for you and dd. Just out of curiousity, does anyone recommend taking any supplements or anything in the uk after chemo? Supplements are such a big thing here, almost all the other parents make their kids take all sorts, from wild cactus juice to pomeganate juice and such, but dd always refused to take anything, so I never pushed her. Am wondering if it makes any difference.
Letitsnow9, thanks so much for the info. I too am wondering if it is a genetic thing for my dd. It just seems so unfair that no one else in her ward has had this, why did it have to happen to her. Am so glad that the girl you mentioned is doing well. The doctors said dd does have the option of doing a cord blood transplant esp since she has no siblings. Either that or half-matched parent. Would you happen to have an email for the girls's parents? I would like to contact them if they are ok with it.
Lilymaid, thanks and all the best to you and DS
Dianatrent, thanks so much, I have joined them, and am trying to figure out how it works! It sounds very useful. What is nced, by the way? Sorry about your DD, hope she is well.