Currently Evan is 9.8 kilos. He was put on the list when he reached 10 kilos, but then had some GI issues and lost a hard earned kilo in a month. Well GI is resolved and he's back in action! Up next, surgery #15, an incontinent bladder construction. His Urologist will take a piece of his colon, create a tube, and connect it to an ostomy bag where his urine will drain. 2-3 months later he will receive his kidney transplant.
As of now, I, Evan's proud mama, will be the kidney donor. My blood type is AB+, Evan, A-. Years ago this would be enough to disqualify me, but this is 2011; these days transplant centers can do what they call an ABO Incompatible Transplant. By using a technique called plasmapheresis they can physically remove Evan's B antibodies thus eliminating the blood type rejection. UCLA has done 30 ABO incompatible transplants, but they have never done this to a person with A blood typing. Evan would be their guinea pig. As a mom this isn't the most comforting news to receive. Why would they consider to venture into the unknown with a two year old boy? My boy?
While I am not an ABO match I am a perfect tissue type and I match 4 of the six antigens in the crossmatch testing. In short, Evan's body would be more apt to accept my kidney, not needing nearly as many meds to help with regection. It's such a sound match that my transplant team believes the kidney could last for up to 30 years in Evan. Most successful tranplants last for 7-10 years and that's considered a good run. 30 years? Well that certainly is a beautiful rarity.
If you know anything of Evan's past, regardless of what he looks like on the outside, he is certainly fragile. While the above looks all good and well it is surely not ideal to put a high risk case through something UCLA has never done, unless the reward far outweighs the risk. His team wants to consider the National Kidney Registry to see if there is a better kidney out there for Evan before making any decision. In this program we can participate in a paired kidney exchange. Simply put, someone may want to donate to their loved one, but aren't a match so both enter this program to find others like them and a more suitable kidney for all. The likelihood of Evan finding a more compatible kidney than mine is not very probable, but it may be out there and they'll be sure to know the best option for Evan before we proceed.
To say we feel blessed yet again is a complete understatement. With all that Evan has been through nothing has been routine or easy, but everything had been divinely inspired. The coincidences we've come across just don't exist if not for someone, something else looking out for our little guy. Deep down I rest comfortably in the awareness that all will be well and I am grateful. That's not to say that normal feelings of fear and anxiety don't creep up. Everything we've done his entire life has been for this. All our eggs are in this basket. It's normal to understand the entire picture and I am well aware of both ends of this situation. Every day as we get closer I feel the pressure, and understand how scary what we're going through is. I also know the track record. We've been to hell and back and he's prevailed. Evan's a brilliant warrior. I find peace in knowing there is nothing I can do to avoid what we have to go through.
Daily, sometimes more, I acknowledge the "normal" feelings; am thankful for them; and I let them go. They serve me not. The only control I have is of my outlook. I can be the best advocate and the biggest cheerleader for my son. I can pretend, when we go back into battle, this is how everyone's life is. He doesn't know any different and I will not be the one to open his eyes to it. I will tell him how strong he is and how proud of him I am. I will thank God for Evan and for the opportunity to "go under" that day with him, in solidarity; to give him a real piece of me that he can carry with him. It's the ultimate gift for me, to give to the boy who already has all of my heart and every bit of my soul. I prayed for this day. I thank God for this moment. I thank everyone that has supported us along the way. God bless you all. God bless my beautiful boy.
