Wednesday, June 13, 2012
June 13 Day +27 - Chimerism Test Results
We received the worst possible news - the cells growing back are all Connor's cells NONE are from the donor! The Bone Marrow Transplant did not work! I am in Shock and don't understand WHY God would allow this to happen to him? Why give us this match? Why put him through 35+ days of Hell? The BMT Team is meeting this afternoon to come up with a new game plan -but we are now facing our worst fears and don't know how we will come out of this. IT ALL SUCKS!
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24 comments:
Ugh. I can't speak to how you guys must be feeling, b/c it makes ME sad and angry thinking about all of this.
So instead... you mentioned Cincy a while back. It seems like RIC was the less intensive approach that you wanted to try first, but is the other approach still an option?
I'm so sorry. I have been following Connor's journey and praying for him. This is just devastating. I hope for a miracle in the new game plan.
I am totally in shock... sitting at my computer crying... I don't have any idea what to say. And I don't have any idea what this means for Connor. I am so unbelievably sorry...
Take some time to rest and grieve, don't neglect the grieving process...
Tomorrow come up with a plan... a new plan, a new hope for Connor, because there HAS to be one.
Love you!!!!
Teri
We're not sure what to say. We are so unbelievably sorry about your news. It does all really suck. We remain hoping for a good plan.
Sending our love, Steve and Heather
So sorry to hear this news. My heart aches for Connor you all. Hope some more encouraging news comes soon. You're in my prayers.
We are so sorry to hear this terrible news. Keeping you in our thoughts and praying for all of you. -Susie
My heart is breaking. Can't imagine what yours must feel like. I am so very sorry. Our family continues to hold yours up in prayer, now more than ever.
Praying BOLDLY for a miracle,
Stacey Hartman
Utter shock! I have been following Conner's journey since Maggie told me about it. You all, and especially Conner, continue to remain in my prayers. xoxox
You don't know me, but I have been following your blog hoping and praying for Connor. Our 4 year old son just went through a second bmt for an immune deficiency disease after his first one failed to engraft last year at Children's Los Angeles. We did the ric the first time, and his old cells grew right back within a few months. For his 2nd transplant, we left our home in CA and are here in Seattle being seen by a team at the Fred Hutchinson Cancer Research Center/Seattle Cancer Care Alliance, where he received a trial drug for his conditioning that is full intensity, but less toxic than the traditional bmt conditioning (busulfan, etc). I know you are hurting. It was awful watching our little man endure everything that he did all for nothing. I am happy to say that Jacob is currently engrafted and we are 67 days post transplant. We get to return home around day +100. Just wanted to give you some hope when things look so dark right now. Hugs from a new friend. ~Kylene
Sucks is an understatement! You all must be devastated and heartbroken, I can't even imagine what you are going through. Do not lose hope! You've all come so far and endured so much on this journey, try and take it day by day...I know easier said than done.
@Kylene-
Thank you so much for reaching out to us, we can sure use a sliver of hope right at this moment. I have a million questions for you, did you use the same donor for the 2nd transplant? Our match was a 7/8 match but mismatched at the A loci and it was a bone marrow transplant v. stem cell which I think affects engraftment. Did you have a blot or caringbridge site that I can read to see what your journey was like? We are so confused at the moment. we are meeting with the team later today and would love to be more informed. What is the trial drug called? I am so happy that your son is fully engrafted. It must have been so difficult to make the decision to do a second BMT. At this point, we just want to go home but we know that we have many difficult decisions ahead of us. Thank you !
@Kylene-
Thank you so much for reaching out to us, we can sure use a sliver of hope right at this moment. I have a million questions for you, did you use the same donor for the 2nd transplant? Our match was a 7/8 match but mismatched at the A loci and it was a bone marrow transplant v. stem cell which I think affects engraftment. Did you have a blot or caringbridge site that I can read to see what your journey was like? We are so confused at the moment. we are meeting with the team later today and would love to be more informed. What is the trial drug called? I am so happy that your son is fully engrafted. It must have been so difficult to make the decision to do a second BMT. At this point, we just want to go home but we know that we have many difficult decisions ahead of us. Thank you !
Oh my goodness. This breaks my heart. Praying for a new plan and more hope for Connor. Sending you love and hugs.the worthingtons
Not sure what to say. This is past sad. Maybe somehow there is a way, Kylene or someone like you may have some lead or info to follow--the Drs. must be really trying to find a way. Don't stop praying, everyone.
we are....Next Door
So incredibly sorry to hear the news - we've been following your blog and praying for Connor. We'll continue to keep you in our thoughts and prayers and hope a new plan comes soon.
- Mark & Trisha Speakman
I am devastated. I had so much faith. I hope that Kylene and others with similar experiences can give you the solutions you need. You WILL find a solution for Connor. Take time to soak this up and feel sad, then pick yourselves up again and keep going. You have all shown so much courage and strength so far - don't let this get you down too long. Keep going for it.
So sorry that you have to endure this. We will continue to pray. There will be an answer! Keep the faith and know that many are pulling for you all. Take care, The Thompsons
I'm so sad and feel horrible that you all have to go though this. I wasn't sure what to say but was uplifted to read Kylene's post. I can't imagine what you, Steve, and Connor are feeling right now. There aren't any words I can say to make it better but I am always here to listen, research, etc...whatever you need. I will continue to pray and know that God has a plan. Just when you don't think you can do it anymore, dig deep to find a sliver of hope. Sending you lots of love!
We've never met before, but we are good friends with the Cho's and have been following your difficult journey. Our hearts ache with yours and can't imagine all that you're going through, but we will continue to fervently pray for a miracle and for a clear plan from the medical team. -Carol & Pat
You are in our thoughts every day. We pray for your strength, faith and hope. Most of all, we pray for the miracle that you so very much deserve. Sending a warm embrace to you all.
Tori, Allen and Madeline
I've been with you the whole time but having to get immediate knee surgery after a fall kept me from posting, but we can tell each other these stories after Connor is engrafted and well.
It's terrible, but see how kylie appears when there seems to be no other logical options. Life is more often than not mysterious and full of miracles. Metaphysics says there are more non physical factors than logical, physical ones, so don't lose hope. I hope kylie helps, i hope you will be introduced to new options and work your way through the many miracles ahead.
Always hoping and praying,
Stephanie, we met at Parkwood for the bone marrow registration drive, and I have been following your family and Connor's story; I am so sad for your current news and trials, but continuing to pray on your behalf for the Lord's guidance, comfort, and peace as you assess the new information ... and ultimately for full healing for Connor. Our God can do immeasurable more than we could ever ask or imagine. Prayers for you, your family, and Connor, in the name of our all-powerful and almighty God.--Helen Lee
We have been thinking about Connor and praying for you daily. We are in disbelief but will refuse to give up hope! We love you guys!
Just thinking about you guys and all the dad's with you today on this Father's Day! love, S and H
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