Saturday, January 15, 2011
This day is historic for us and for Elijah. Today is the day we signed the consent to search for a bone marrow donor for him. We left early this morning to meet with the transplant team...expecting a very different conversation than what took place. We thought we hadn't met the doctor before. We thought she would not know him in the ways that the other doctors who have been treating know him. We thought we would be hearing about several scenarios...that we would be faced with making a decision that included many options for us to consider regarding the future for Elijah.
Instead, God presented us with several gifts that we had not expected along some realities that we had not realized we would be facing so soon. The Doctor, Dr. Angela Smith, was a familiar face. We had not remembered her name, but she was there as a fellow at the University of Minnesota from before he was even diagnosed with SDS. She performed his first bone marrow biopsy as an infant. She has been with him from the beginning...she knows him well. This doctor is young...but she knows her specialty. We spent 4 hours with her and the team going over every detail regarding Elijah and his Shwachman Diamond Syndrome. Cincinnati is the center for kids with SDS. They see more kids with the very rare syndrome than any other facility. The University of Minnesota does about 90 pediatric Bone Marrow Transplants a year...one of the leading transplan/t centers in the Country. But, they only see 1-2 SDS kids a year. We had considered bringing Elijah to Cincinnati for transplant before speaking with Dr. Smith.
We learned very quickly in the discussion with Dr. Smith, that all the doctors agreed that the most optimal time for Elijah to receive a bone marrow transplant is this summer. There are some disturbing changes that point to bone marrow failure down the road. One of the more concerning changes is the cellularity of his marrow. Normal bone marrow is at about 100% at birth and decreases with age. The general rule is that your cellularity is about 100 minus your age. Therefore, if you are 80 years old, you would have about a 20% cellularity. Elijah should have a 95% cellularity but instead his is 20%...that of an 80 year olds. This is just one of the trends that they have seen in his blood that are pointing to something called Myelodysplastic Syndrome. It was clear to us that it is most likely time for transplant if we want to give him the best chance of survival. And the first step is finding a nonrelated donor.
We walked in with some concerns. We wanted to make sure that this team followed the same protocol that is being followed by the more experienced SDS doctors in Cincinnati. The new lower dose chemotherapy regime is most optimal in SDS kids and were so comforted to hear that the two hospital teams consult each other often. There was no sense of defensiveness or apprehension when we talked about the possibility of getting a second opinion from the Cincinnati team. Dr. Smith instantly made us feel comfortable...she spoke honestly and openly about the decision to be made as well as the process we were facing.
We were taken by surprise. We always knew that in Elijah's severe SDS case, that he would most likely need a transplant. But, we really walked in thinking that we would be talking about planning ahead and going to transplant when he was around 10 or 11 years old. I thought we had more time. Dr. Smith, in conjunction with her, laid out all the risks and possibilities, and we left, overwhelmed with all of the information...but confident that God has prepared us for such a time as this.
We are still in a bit of shock. We are also still in awe at the way God surprised us with peace of mind and soul through it all. He gave us a gift from the moment the doctor walked in the room and told us she had known Elijah since infancy. There were many other gifts along the way that gave us complete reassurance that God is in control and that Elijah is safely in His hands. It is going to be a long next year for Elijah, for us and for the whole family...lots of details that need to be worked out and lots of perseverance on our parts to get through this lengthy process. But, we are confident, that God will renew our strength each and every step of the way.
So, step number one--we need to find a donor. There are two options...the first is a donor from someone who has registered for the national bone marrow registry and the 2nd is to search the ambilical cord donor match lists. Preferably, they would like to find a match from a donor. We should know in a couple of weeks if a potential match is found. Because we have some time, we can wait for the donor to be contacted, screened and scheduled. If Elijah's disease had progressed more, we would not have that luxury. Yet another reason why in the next six months is an optimal time to consider transplant. Elijah does not have any full siblings and so there is no need to look within his birth relatives as a full sibling would be the only potential match.
I was struck by how overwhelming all of the information we received today was. But, I could not help but think of the families who found themselves everyday in an office like this. We are familiar with hospitals, with doctors and with medical terminology. We are frequent fliers in the medical world and yet we were overwhelmed. Tonight I am praising God that He has shown us that He is in control of all of the details of our precious Elijah's life...we are praying for comfort and peace for him and for the other children. I am finding myself praising God for Elijah's autism as well. There is no way we can explain to him what will be happening to him in this year ahead. We will just have to prepare him in the ways we know how...but, I really think his autism is yet another gift for him during this time. And I am thankful that God knew all of the details of his life before Elijah was ever born and I will trust that God will speak to him in ways that we can not.
Tonight, I am praying for the families today who are devastated by the news they heard regarding there child...praying that they are able to see God's hand in even the most unimaginably difficult times. That their fear and anxiety will not drown out the voice of God who is speaking to their broken hearts right now.
If you have not thought about adding yourself to the bone marrow registry, please consider it. I will post a link for you to follow in the days to come.
at 12:04 AM