A Small Bit of Relief

The waiting is always the hardest part. I sat for the last 24 hours with what felt like a 2 ton brick on my chest waiting to hear simons numbers today. For all the prayers and thoughts we have been honored with increased percentages of Marrianas (donor) cells. Today the vntrs came back at 91% overall. Some numbers of broken down cells still in the 80's but the doctors are working on trying to find the right balance. The relief today is that we don't have to start iv steroids. So around 5pm I felt a relief from the worry for now. They did up the cyclosporine again yesterday and Simon gets it 3 times a day now along with all his other meds. He has been doing well. His skin is blotching up again today so that is always worrisome. I was able to contact our expert NEMO doctor in philly and he did inform me that Simon's NEMO mutation is very severe so we have no choice but to get him a new working immune system and keep it. So with that bit of news (which we were somewhat aware of) we march forward to try and save and keep this engraftment for the long haul. I've had some very weak moments the last few weeks and all your strength, kind words, treats and meals have helped pick us up. Its awful hard to continue to be on the receiving end of things when you so want to just be helping someone else out now. We ask that you continue to pray for Simons donor cells to completely return and to stay long and stay strong forever. Interestingly NEMO carriers, which is what I am, are living on a 50 - 60% working immune system. So I have to think since I've managed to get through many things we must know in our heart, Simon too, will prevail. Dr. Duerst likes to use the word hope alot and I really couldn't hear, or feel that this week but in search of pray and inspiration I came across this and it really struck me...."Hoping is not Dreaming. It is not spinning an illusion or fantasy to protect us from our boredom or our pain. IT MEANS A CONFIDENT, ALERT EXPECTATION THAT GOD WILL DO WHAT HE SAID HE WILL DO. It is a willingness to let God do it his way and in his time. So we Hope for Simons full recovery, in Gods time. God Bless you all. Tracy and David