Bring Deklan Home

After Evan and I found out we were having a baby, I dreamed of all the fun adventures we would have together - first trip to the beach, first outing to the zoo and aquarium, trips out of state to see family and friends, etc. But when Deklan was diagnosed with Severe Combined Immunodeficiency (SCID) in February of 2014, we quickly learned that our adventures would need to be put on pause. SCID is a rare genetic condition, where children are born lacking important immune cells needed to fight off infections. Because of this, even a common cold can be fatal for children with SCID. The only way to treat SCID is with a bone marrow transplant.

Many states in the U.S. screen newborns for SCID, but for us, unfortunately, North Carolina is not one of them. So we found out the hard way by Deklan catching 3 viruses - H1N1, enterovirus and rhinovirus - being in 4 different hospitals and ending up in intensive care with his heart and lungs failing. Once he was diagnosed, we were placed on isolation. Isolation is where Deklan could not be taken out in public around people, could have little to no visitors and having to be extremely cautious and careful about germs so that he would not get any new infections. Anyone who does see Deklan (including medical personnel) has to wear a gown, mask, and gloves.

Deklan received his first bone marrow transplant (BMT) on 3/27/13, with his Mother, Jenna, as his half-matched donor. After 10 months of waiting on home in isolation, the first BMT was officially claimed to be unsuccessful and we worked towards a second BMT, only this time Deklan would need to undergo chemotherapy to wipe out what little white blood cells he had and would be getting a BMT using an matched unrelated donor. He received his second BMT on 2/12/15.

Since then, a lot has happened. Deklan has engrafted and now we continue to wait and monitor his levels frequently to see how his new cells are doing and also to watch for any indication of graph versus host disease. He still has the flu virus H1N1, which he has had for over a year now, and we will be waiting for his body to clear that as well. We will be staying locally to the hospital for +100 days post transplant, all while still being on isolation. We will continue to be on isolation for about a year post transplant. It all depends on Deklan's levels and how he is doing.

I talk a lot about adventures in my posts on the Bring Deklan Home page on Facebook. But going through this, I have learned that life itself is an adventure, and that living is the biggest adventure of all. It isn't always fun or easy, but it is not a gift we take for granted.

Thank you so much for supporting Deklan's journey with SCID!