New Donor Cells are not grafting

[amyangel]

Good morning ,
Yesterday we were told that the Dr. didn't think the New Donor cells are grafting .. Amy is now Day + 36
Has anyone in this group gone through this ?
Dr. wants to send us home in 3 weeks and bring her back in 6 weeks do radiation on spleen and start the BMT all over again .
Scared really scared

[vickij]

I will be Praying for Amy and you. She is young and can beat this. When I was going through transplant I remembered all the people Praying for me and that helped a lot.

[Barbara K]

I'm very sorry to hear this news. My nephew had a MUD BMT in 2001 for Chronic Myelogenous Leukemia. He was 14 at the time, and the donor cells did not engraft. It was a truly horrible period of time after we reached the point where it would have been reasonable to expect that donor cells would have taken up shop, and then day after day after day it didn't happen. But he had no functioning bone marrow of his own either because of the chemo and total body radiation (heavy doses to eradicate his leukemia, which had started to accelerate prior to diagnosis). My memory is blurry now, and probably I have repressed a lot, but maybe around day 60 or so his own bone marrow finally started to come back. He was in the hospital for over three months and then stayed nearby in a residential hotel for another couple of months after that.

I think part of the reason I complete freaked out when my husband originally turned up with pancytopenia and they started talking possible AA was the lingering family trauma of my nephew's ordeal.

It doesn't get much tougher than a failed BMT, if that is indeed what is going on. But even after being subjected to an extremely grueling conditioning regimen that had completely wiped out his marrow, my nephew still had youth and determination on his side, and high quality medical care, and the love and support of his family, friends, and community, and he got through it. And he has since that time graduated from college, begun a career as a teacher, and gotten married to a lovely young woman.

His doctors did initially want to do a second BMT the following summer, but he had been diagnosed just before the "miracle" drug Gleevec moved from the clinical trials (for adults) into front line use for CML. So when the first signs of his cancer returned (the "Philadelphia chromosome"), he decided to opt for Gleevec since it was by then available to him, and that medicine has kept him in remission ever since. In the meantime, new drugs have become available as well.

Since his illness was not MDS this experience is not right on point, but do know that others have gone through a failed transplant yet still ended up with happy outcomes. In my nephew's case, one door closed but another opened up, and the chemo and radiation did knock back his cancer during the interval when Gleevec was not yet available to him because of his age. I can't offer any other advice than to say maybe try to take it one day at a time while you wait to see if the doctor's suspicions are confirmed. We'll be holding your daughter in our thoughts.

[JordanN]

Hi, Amyangel!

I just wanted to say that I'm hoping that your daughter's situation improves soon! I have two special needs children, and I know how difficult day to day life can be with the challenges these kids present (I wouldn't change mine for anything - they are perfect in my eyes and I cherish every moment with them but special needs do need special attention beyond the normal challenges all kids go through). I can't imagine how stressful it is for you to worry about her MDS and transplant as well! You are an amazing mom!! And Amy sounds like such an amazing young lady as well who is handling so much so well! I am hoping and praying for a quick recovery for her and plenty of rest for you!!

[amyangel]

Vicki , Barbara and Jordan

Thank you for all the encouraging words! God truly hold the answers and Thank you for lifting us both up in prayers ... Seems like I have been waking up early in the morning . I said ok God if I am getting woke up this early in the morning you must be to trying to tell me something!!?

So I started to pray and I thanked him for everything that he has done so far and is going to continue to do. I prayed for the people that we have met that are close and around us , I prayed and thanked him for the Doctors and Nurses who spend so much time thinking we are grateful . I prayed for all the sick . and I thanked him for giving me Amy, and for giving me another day with her .

When we Amys doctor walked into her room at the Day hospital he said, she looks good ... He had a puzzled look on his face and said , her counts are coming back slow ,but coming back . Lets wait and see what the Chimerism test tells on next Mon. This test will tell us if Amy has more Amy or more donor cells.

I feel very Blessed to be the one God chose to be Amys mom on earth she is has been truly a wonderful gift and I will love all the days of her life .
I'm not saying we don't have crazy bad days where she wants to make me scream and shout , because we do . I'm not perfect and God knew this .

One morning when she woke up she sat up in bed and looked at me with tears in her eyes and said Mom I don't want to die . She may be handicapped ,but she can hear people talking around her, and understands somethings We cried together . I reassured her that the Doctors and nurses are trying to do everything that they can , but that most of all we have to trust in Jesus and Thank him everyday for every new day he gives us .
So we wake up now every morning and say THANK YOU JESUS ! We say thank you Jesus all day long !!!!

I also shared with her as painful as it was , that if she would die that she will be at home with her heavenly Father. we both stopped crying and she seemed to have a peace . I'm not really sure how much she understands, but us moms seem to to take is much harder .

God is good !
God must have knew I would be able to handle cartoon movies everyday also ! lol

One day at a time Sweet Jesus one day at a time !

[DanL]

praying for strength and victory for you and amy.