Sad news :( But are not giving up !

[amyangel]

I have bad sad new to share with you . Amy did not graft with the new donor cells ... It could be many things that caused her not to graft .. Meds. they didn't give enough donor cells ... and the chemo that they did was a mild chemo . They did all low end of everything because of how fragile Amy's body already was. .
They were not sure if she could take the tougher chemo .and radiation she needs to sit still so that they only hit the spleen..Also because of her CVID= COMMON VARIABLE IMMUNODEFICIENCY .
They wanted to be care and not hit her to hard they weren't sure if her body could take it.
Well she proved them wrong and they should have done a little stronger chemo to kill off all of Amy's cells.

Right now Amy is still 75% Amy and only 25% donor .She is making her own cells just not like they would like to see them .. They will be sending us home sometime in Dec. before Christmas, and after she gets her down off some of the medications she wont need until we try this again,
. We have to come to Milw every two weeks to see Hari . . And we have one more try at this ,but he is giving her a little rest and it wont be until spring time . Chemo again ? Yes A Little stronger
And radiation of the spleen.
We knew going into this it was going to be a tough one and that the road might be long ..Amy's make up is different from others.
Or I can just have Amy live on blood transfusions the rest of her life.. ???
He may use the same donor ,but go for his stem cells which would be a SCT or he may use the donors bone marrow again . Amys donor gave enough to make two bags .
Risks? Yes just like the first time she could get really sick , lose hair , get GVHD , or death .
Dr. Hari thinks we should give it a 2nd try .he wants to see her well and healed too .
I am going to keep believing and Thanking God everyday just like we have been .

Amy is Day + 48 and her hemo is 8.9 , wbc 2.8 anc 2.06 platelets are 109 Mag 1.4 potassium 4.1 they all look pretty good ,but not for Day + 48
keep the prayers coming

Love you all Sue and Amy

[Neil Cuadra]

I'm really disappointed that the donor cells didn't take over. Everyone involved must feel the same way.

I'm glad the doctor is looking at all possibilities, with Amy's specific situation in mind, and that you'll get a little bit of a break before the next treatment effort.

I hope that this is nothing more than another bump in the road to success.

[DanL]

Sue,

I am very sorry to hear the news, but it does at least look like Amy is producing some cells at least even though her donor cells haven't taken hold. We are all rooting for Amy and will be praying for her to get stronger in the mean time while waiting for a second transplant. Best wishes always.

[amyangel]

Hi Neil Cuadra and DanL,
Yes everyone involved is very disapointed Dr. Hari has only seen it happen twice now .and Amy is the second it happened with .

Yes we are praying for a bump in the road . The nurses have not seen it ever happen in the Day Hospital ever until Amy . Everyone is sad ,but are all with us for the next time to make it work .

Like I said they were being very care this first time because of Amy fragile body up make is so very different from others all labs show this ... They have not found anyone anywhere in the world to even compare Amy with she is RARE , but her creator was good !

She Is Beautiful in everyway you can think of and she has touched so many peoples lives including the Doctors . God only makes beautiful !

My thought now is for the donor if they ask him to give stem cells will he worry about if what he gave wasnt good enough? Because in our eyes he still has saved my daughters life !! And I hope that one day I will be able to share our story with him.

And yes home is healing and rest we are both looking forward to that !
Thank you for the prayers I feel as if we know so many of you

[Sally C]

Dear Sue,
I have been keeping up with your precious daughter's journey. I just wanted to let you know that your faith and spiritual posts are so uplifting and inspiring. Please keep the faith - all please keep the faith. My husband was on his doctor's "death list" in 2009 - he had over 125 blood/platelet transfusions. Through God's Grace he has been tranfusion independent for over 3 years now. Nothing short of a miracle.
I wish you and your Amy all the best. With your strong faith you know that she is in God's loving and protective hands. May He heal Amy and provide comfort in the days ahead.
(((Hugs))) to you and Amy.
God Bless,
Sally

[Cheryl C]

Sad news, but as you so firmly believe, God has a plan for Amy's life (not that He causes these awful diseases). May He continue to be your Rock as you both have some rest soon, and may He give you wisdom as you decide what to do in the future (Ps. 61:2). Praying for you.