Sunday, January 13, 2013

The Most Incredible Gift!

It's with unbelievable joy, happiness and gratitude that I'm finally able to share with the world our incredible news; we have a kidney donor! I apologize for not sharing the news sooner, but we didn't want to share the news too soon and jinx ourselves or share it before the entire process was completed. And also out of respect for the donor and her family.

The donor has given me her permission to tell you all about this, so I guess I might as well start at the beginning and tell you everything. Billy's best friend from college and roommate at South Carolina is Matt Freeman. His wife is Kristin and they have three adorable little girls. The Freeman's have been following Stephen's story from the beginning and Kristin told us long ago that she was O+ and wanted to get tested when the time came. We of course greatly appreciated her concern for Stephen, but have all along hoped that it would not come to the point where we needed a friend, especially one with three small children, to donate to Stephen. But as you know, we had a few false alarms, a donor fall through, and then the cdiff.

But Kristin maintained her assurance that she wanted to be tested and so the process began in late Summer/early Fall. It took a while logistically to get everything coordinated between CHOP, UPenn and Kristin who is in Wilmington, NC (the hospital's sometime seem to move at a snail's pace), but some time around October after Kristin has sent in her blood work multiple times, we got the confirmation that Kristin was an initial match. And not only was she a match to Stephen, but she was a near perfect match! Dr. Baluarte described the match as one he would actaully expect to see between a parent and a child. We were shocked!! Albeit a very pleasant shock. It just seemed to good to be true. So we maintained a quiet excitement between ourselves and our family.

Then came the actual medical evaluation at UPenn. In early November, Kristen and Matt flew up to Philadelphia so that Kristin could complete the two-day medical evaluation. The results indicated that Kristin still appeared to be a great match, but the doctors wanted to her to have a few things checked out just to be completely sure the surgery wouldn't cause any secondary health concerns for her.

Fast forward to this week. All of her additional tests came back good and she was cleared by not only her primary doctors at home, but the entire UPenn transplant team and has been given the "go-ahead;" so she's officially been accepted as Stephen's kidney donor. The team at UPenn met with our doctor team at CHOP on Friday to discuss scheduling the surgery and the remainder of the details. Which is just mind blowing to think about it! I cant believe we've finally got this far and I can now say we have a donor for Stephen!

Based on Stephen's current cdiff infection and timing for Kristin, we believe that the surgery could be in early April. Which would be great because it will give us time to get Stephen healthy while also avoiding cold and flu season. And then he'll have all Spring and Summer to recover and get things on track before school and flu season rolls around again. And it should also give us time to plan for logistical things such as where we'll stay in Philadelphia after the surgery but before they let us come home.

It's an awesome feeling to know that we've finally gotten through this huge hump and milestone, really, but I still feel some trepidation over accepting Kristin's incredibly kind and generous offer of her kidney. What I mean is that this is such a HUGE offer from someone! And although the risks are low, there still are risks that could have a huge impact on her and Matt and her daughters. I've really struggled with this and still do. As a mother, I feel like this should be my burden to bear, not hers. And Bill and I really did consider not allowing anyone to donate a live kidney. That we would either wait for a cadaver kidney or for a paired exchange. But ultimately, we have to do what's best for Stephen, and this is obviously what is best. Especially since Kristin is such an unbelievably good match with Stephen!

One day I hope I will be able to return the favor in some way or find a way to appropriately thank her, but for now, I guess I can just tell the world about what an incredible friend, mother, and human being she is to save my son's life and to give him the kind of life he so desperately needs and deserves.

I also want to thank every single person out there who has read our story, shared it with others, and who has offered to be tested and/or got tested for Stephen. The outpouring of support and kindness has been incredible and I sincerely have appreciated each and every message. And now that we've finally gotten over this mountain, we can start looking forward to the next climb and the awesome things that are to come for our little Superman!

11 comments:

  1. There really aren't any words sufficient to describe my happiness for you and your family. What a miracle!

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  2. This is the belated Christmas gift we've all been waiting for!!! Kristin is Stephen's angel!!!

    Love,
    Aunt LuAnn and Uncle Dick

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  3. I've waited so long for this good news, so happy for you. In some ways, I truly believe Lee and I got the easy path. Saying goodbye to Ellie was the most painful thing ever but we've never seen her suffer or been through the fear you have. I admire you so much and can't wait to tell Theo all about Stephen and Ellie! :) You are wonderful, all of you and I am just so happy.

    Naomi x

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  4. Kristin is not only a beautiful woman (we've met her), but she is one of the most warm, generous, compassionate women on this planet.

    As the winter and spring seasons progress, there is now time for Stephen to get very healthy and ready for the rest of his life. I've always thought that God allowed Stephen to be here on this earth for a reason -- and to do good things with his life. Now he will have that opportunity. The entire Schwartz and Noll families are grateful for this gift.

    All our love...Kathy & Chuck (otherwise known as Mimi & Popa)

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  5. Lindsey,
    I have never met you, but I worked with your mother at North Hills.I have been following your blog from the start. When I read this, my emotions got the best of me and I knew that I had to write you. I can't imagine what your feelings are now especially after all you have been through. Stephen is an adorable little boy and has amazing parents. Your prayers have been answered. Good luck & best wishes to all! My prayers are with you and your family. Vicki Kuhn

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  6. WOW!!! What a hero she is! You are blessed. GREAT NEWS!!!

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  7. This is totally wonderful news. To be able to save your little boy's life by dontating a kidney, reflects the type of person Kristin is. In addition, Lindsey and Bill, as parents and human beings, you have so much to offer, and can continue to do so through out your lives. This whole experience has so many down sides, but ultimately it is such a priceless life lesson. You are all very special people.

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  8. Dear Lindsey, Bill and Stephen,
    With tears of joy in my eyes, I have read this wonderful news. The three of you have achieved hero status with me over 2 years ago. I am adding another hero to that list-KRISTIN!
    Good luck and best wishes to all of you.
    Love,
    Sue

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  9. Tears of joy from this mama! God is good and I pray for awesome outcomes for both families. Congrats!!!

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