Monday, July 23, 2012

Transplant News

I have been waiting a long time to write this post and I'm sorry for keeping everyone in the dark somewhat regarding our transplant process.  My hope had been to write this post with exuberation and in celebration of the fact that we had found Stephen a kidney donor; and up until Saturday, that was still the plan.  But unfortunately, things have changed, and our news, although not totally terrible, is not what I had hoped it would be.

I had not been sharing much of our transplant donor search with everyone until this point, out of respect for our potential donor and for their family's privacy, and also because I knew nothing was set in stone until we had an actual date schedule for surgery.  A few months ago, one of the few people that had done the initial cheek swab test, came back as a near perfect match for Stephen.  I think we found out right around Easter that they were an initial match.  It was around this time that we stopped testing other individuals, because once you have a potential donor begin the medical evaluation, insurance will no longer pay to test other possible donors.  And we didn't want to jinx anything, so we sort of stopped "announcing" our hunt for donor, but also didn't want to remove the information from the blog, because we didn't want people to forget that we were still searching for a donor.

After a few discussions, our potential donor graciously decided to go forward with the medical evaluation and traveled last month to the University of Pennsylvania to complete the two days worth of tests.  We still knew there was a possibility that they wouldn't be a medical match, but felt pretty good about our odds.  But unfortunately, we received the news on Saturday morning, that they were no longer a match for Stephen.

It's been a bit of a shock and we're definitely disappointed, but we have to move forward and start our search again.  We feel that maybe there was a reason it didn't work out and that there's still a perfect match out there for Stephen.  For those of you that are on Facebook, this is why there has been a flurry of activity over the weekend and the creation of a designated Facebook page to help find Stephen a kidney donor.  And like in the past, so many people have stepped up and shared our story and I've already received a handful of emails from people that are wishing to be tested.

This has been a setback, but I think a minor one in the grand scheme of things.

We just hope that through our Facebook page and the blog, someone with a HUGE heart and a perfect kidney for Stephen will come forward. So please share our story with friends, family, co-workers, etc and help us get the word that Stephen still needs an O blood type kidney donor.

If anyone is interested in being tested, the best thing to do is contact the transplant coordinator at CHOP; JoAnne Palmer.  Her contact information can be found on the right hand side of the page.

The easiest way to help us is "like" our Facebook page, Stephen's Journey, and re-post it to your wall or just simply share our blog.

We appreciate all the continued support and prayers for Stephen and are moving forward to the next hurdle ahead!


  1. Dear Lindsey, Bill and Stephen,
    Sorry to hear the news, but pray that another match will come forward in the near future. The three of you are always in my thoughts and I pray for a miracle for sweet little Superman.
    Love and hugs,

  2. Dear Lindsey,
    Sorry to hear about the set back. After 61 years of life, I know that everything happens for a reason. I also know that God has taken care of Stephen in the past and will continue to do so. The perfect kidney is out there and I just know it will find it's way to our Superman!! Have faith and know we are all keeping you, Bill and especially Stephen in our thoughts and prayers.
    Aunt LuAnn

  3. I am still ready willing and able to be tested
    ! This explains why I hadn't heard back from Joanne. let me know what to do next! - ciara