Conner received stem cells 87 days ago from an unrelated young woman who turned out to be a 7/8 match. It was his only chance to cure his NEMO primary immune deficiency.
I took the text below from his Mom’s blog at cure4conner.org where she describes the “AHA moment” regarding transplants. What she describes is true not only for transplants but for medicine in general and that is why we need to support research like the one being done at very important labs.
Politicians and religious extremists should spend a couple of days at a stem cell transplant unit to witness what children go through and maybe then they will understand the importance of funding life saving research.
Day 87
Well, there is a lot of stuff that I should be doing right now, such as forcing Conner to take medicine he doesn’t want and methodically wiping down surfaces with Clorox wipes. But instead I will share some things I’ve been thinking about.
Most of you probably know the story of David Vetter and how his life touched future children with immune deficiencies. Maybe you’re more familiar with David as “The Boy in the Plastic Bubble”. He was born with a severe combined immune deficiency, referred to as SCID. Although SCID is somewhat similar to Conner’s immune deficiency, it is more severe and most children do not live to see their first birthday without a bone marrow transplant. This was true in David’s family, his parents lost their firstborn son to the disease at seven months.
David made history by the fact that he was able to live to the age of 12 by remaining isolated in the hospital and his home in Texas (in a sterile bubble). I can’t even imagine! Although they were never able to find a perfect match for a bone marrow transplant, in 1984 they decided that with the advances made in unmatched transplants it was worth the risk to use his sister’s unmatched marrow. Reports say that the transplant went well and there was hope that he would eventually be able to leave the bubble. However within a few months, David became sick for the first time in his life. It appeared that the screening for his sister’s marrow had missed the dormant EBV (Epstein-Barr virus). He was so sick that he had to be removed from isolation so that he could get the proper medical care. For the first time in his life (12 years!) his parents were finally able to physically touch him! He eventually went into a coma and passed away a few weeks later. His cause of death was determined to be Lymphoma, brought on by the EBV. It was the first time in history that doctors had proof that cancer could be caused by a virus. This knowledge was ultimately beneficial for other BMT patients, including Conner. When Conner became infected with EBV post-transplant, he was given one of the drugs used to treat Burkitt Lymphoma, the particular cancer caused by EBV. After just a few treatments Conner’s EBV is now dormant and hopefully it stays that way!
Conner has been very interested in David’s story for a number of years and I remember watching the movie very loosely based on his life with John Travolta. I have to wonder what David’s mother, Carol Ann Demaret, thought of that movie as it certainly minimized the trauma their family endured. I am thankful to know that Carol continues the fight today to help advance treatment and support for all families with immune deficiencies. Anyway, I have to say that’s a pretty awesome legacy for a 12 year old boy! Don’t you think?
Part of the reason I’ve been thinking about this is that I had a recent “aha moment”, when the realization hit me that doctors continue to learn from each and every BMT patient. We witnessed this happening while we were on the transplant unit where some new treatment or precaution was initiated based on things happening to other kids (and even Conner) on the Unit. We are so thankful that the team at Cincinnati Children’s is constantly striving to make transplants easier and safer.
However, there is still a long way to go. A bone marrow transplant is a treatment filled with terrible risks and can affect a person’s health (both positively and negatively) for the remainder of their life. We know that Conner still has a long way to go before he’s out of the woods. Our friends Jeremy and Justin are both now fighting GVH of the intestines. Some kids seem to almost breeze through transplant and others fight battle after battle. Please keep all of the BMT kids in your prayers.
Conner heads back to the hospital on Monday morning for Cidofovir and labs. We will see if his marrow was able to keep up with this weekend’s blood loss. We are really trying to not give him any more transfusions than absolutely necessary at this point, too much will make his marrow stop trying so hard.
Please continue to pray for Conner’s healing, sometimes the light at the end of the tunnel looks a little dim. Please pray for his bladder to heal, the bleeding to stop and protection from any other infections or GVH.
