Jim & I met with a doctor today that is part of the Bone Marrow Transplant team at SCCA (Seattle Cancer Center Alliance). We are now moving forward with the search for the best possible donor for Hannah to have a Bone Marrow Transplant. Since Hannah is a Caucasian American there will probably be a few "10 out of 10 donors" to choose from. That is huge!!!!!! The best possible donor needs to be located & contacted to see if they will agree to anonymously give some of their bone marrow to save Hannah's life.
There are too many potential complications to list. Hair loss is likely from chemotherapy. Survival rate is 75%.
If all goes well, the BMT is a cure for Hannah's disease. I am thankful for the hope of a cure & the hope that Hannah could go on to have a normal life after all of this is over. The SCCA has done 27 pediatric Aplastic Anemia unrelated donor bone marrow transplants (they are the center that pioneered BMT in the early 70's & have done over 10,000 bone marrow transplants since that time). To know that they have only done 27 transplants like Hannah's tells you how rare it is for a child to have Aplastic Anemia.
We will probably put Hannah in a clinical trial that uses a lower dose of pre-transplant chemotherapy (100mg / kg of Cytoxan). She will also receive total body radiation (200 centigrade / TBI) prior to transplant. Her transplant will be done at Seattle Children's Hospital and we will most likely have to be in the Seattle area for about 4 months.
As of right now, we are about 2 months out from transplant ... unless her bone marrow comes back in the mean time. It is still not too late --- but the doctor today was not very hopeful that she will avoid a BMT.
It is just unreal to me that we sat across the table from a transplant doctor today that had a huge file in front of him with Hannah's name & birth date printed on the front of the file. I know I have said it a million times but this whole thing is just surreal. Maybe I would feel differently if Hannah had been sick since birth but she spent 7 years & 2 weeks as the picture of health.
The doctor wished us luck for Hannah to stay healthy while we are waiting for her donor to be located. Oh my.
I am just hoping for days & days in my pj's at home ...or at Kim's. I have no energy for anything except sitting & doing a lot of nothing. If we can stay out of the hospital until her transplant I think perhaps I can gather myself for a "second wind" of more hospital stays in Seattle. I know a BMT will make the past 9 months of hospital admissions look like a cake walk. Hard to imagine but I'd be kidding myself to think that a BMT will not be a really rough road for Hannah.
Pray for the best possible donor to be found & that they would be open to donating for Hannah.
Pray for Hannah to remain her happy little self in the midst of all that she is going through.
And, pray that her bone marrow would just come back & we will not need to come to Seattle after all for a BMT.
Thank you ... I am so grateful for so many that encourage me & pray for us during this time!
Love on your kids tonight & thank God for their health!!!!
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I for one am praying for the bone marrow to come back - best possible scenerio but will also lift up Hannah and the possible donor out there. Pray that a match will be found soon and that it is a 10 out of 10. Will also be praying for you and Jim that that second wind will come and stick around for a while.
ReplyDeleteBig hugs,
Christy
We are praying. God is in control and has you all in the palm of his hand. I pray that Hannah's bone marrow would be healed and that He would continue to bless your family in awesome ways. love you all~
ReplyDeleteAs I said on FB, my heart is heavy hearing this news today. I know it is not what you expected or wanted.... But, I also know that you are seeking out the very best of care for Hannah. Your attitude and determination over this very scary and exhausting trial has been inspirational. You have blessed many along this journey. God is using you all in mighty ways that are glorifying Him. The One who created Hannah CAN move mountains.
ReplyDeleteDon't ever for get that!!!! I will be praying specifically for healing. And, if not that, for the perfect donor for your that precious girl!!
~Diana
I am praying for Hannah and for you and your family. God will give you the strength that you need. He will carry you in his arms. Is there a way we can be tested to see f we would be a match? Blessings to you.
ReplyDeleteMy mother's heart aches with you, it is heavy and hopeful. I believe that Hannah is in the loving care of the Father and that the outcome is in His hands. My prayers are daily and constant that God would use every port entry, every bad hospital meal, every disappointment, every time of joy, every moment of anxiety, every single little and big thing to His magnificent glory. That one day you, Hannah, Lilly, and Jim can testify of God's astonishing healing power. Your love and faith is profoundly touching me.
ReplyDeleteWhere do Sue and I get tested?
ReplyDeleteUncle Eddie
My heart goes out to you every day I read your blog and especially today. I joined the registry when you posted it on your blog and would be beyond thrilled to be a match for Hannah. My thoughts and prayers are with you all and I hope that you don't go to Seattle again until you're ready for a vacation!
ReplyDeleteCousin Kris in Portland