Thanks to everyone for all your many prayers for Jaylen and our family. The past month has been difficult and I havent posted updates lately. Jaylen has had many tests to check the progression of Batten disease. Thankfully, he is strong and healthy. He has been so brave and we have been very blessed as all of the test results have been normal except for an EEG, which tests for seizures. No seizures were seen but it detected the potential for seizures in the left part of his brain. Jaylen, being stable at this time, with only his vision being affected so far, the transplant doctors at Duke felt he may be a candidate for an umbilical cord blood stem cell transplant, but now would be the time to try it since he is stable. Eric and I have prayed for God for direction, whether or not to try this. There is no guarantee, as a cord blood transplant has only been tried with two other children with Batten disease and it will be years to see if it had an impact. It is hard for us to take a quality year of Jaylens life, the best he has left, and try this but after two weeks and one day we finally decided to do the transplant. It is our only hope right now to change Jaylens future. Although Jaylen is currently healthy and full of life, the progression of Batten is just a matter of time. The hope of this transplant is to stop the progression of the disease, which would be a complete miracle! It will probably not restore his vision. Jaylen will be admitted into the hospital on September 2nd to prepare for the transplant. He will have nine days of chemo to kill all of his cells so that his body does not reject the new donor cells. It is a very long process and he will be at a high risk of infection due to suppressing his immune system. Jaylen should return home in 100-120 days but will have to still be very isolated for up to a year. He will not go to school at FO but will be in hospital school and then home bound. We will be in the hospital for a couple of months and will then have to live in an apartment in Durham for a few months so we are only minutes from the hospital because he will still have to go there daily. Please pray for Jaylen! Pray that he can first, get through this transplant and then pray that it stops this terrible disease. We know this transplant has the potential to save Jaylens life, but also to take his life. We love his team of transplant doctors, have faith in them and are very hopeful for a successful outcome. They have found a wonderful donor match for Jaylen, better than normal. God has opened every door to lead us in this direction and we fear if we dont take the chance we will one day look back and regret not trying it. Keep praying, have hope, and believe in miracles! God has a plan. We hope this is the miracle we have been praying for. I will try to keep updates as we continue Jaylens Journey. We love you all and need you more than ever.
Posted on: Thu, 21 Aug 2014 11:07:59 +0000