The kiss of an angel..

It has been three weeks since Elijah had his bone marrow biopsy. Three weeks to again be reminded of the fragility of life for Elijah. When we were waiting for Maisy to come out of surgery, we received a call from the hematologist who ordered the biopsy. Some of the initial bloodwork is concerning..a condition called MDS (myelodysplastic syndrome) appears to  be developing. We have been waiting for the cytogenetics tests to come back that will confirm the extent of the progression. And so we waited...I would like to say that we have waited with patience, with faith and with optimism. And then I would be lying..
I have waited in silence with fear, and sadness and even, to my surprise, a little anger. I suppose they call that the stages of grief. We knew this could happen. We knew that Elijah's syndrome was filled with complications. We have always known that AML leukemia was a distinct possibility for him. Yesterday, we received a call that the cytogenetic results have come back and that things look stable on the chromosomal level. What that means is that, yes, Elijah has developed MDS which means he is going into bone marrow failure, but, no, it has not turned into cancer yet.

We, along with the doctors will be monitoring him closely with monthly blood tests that will tell us if he continues to be anemic, neutropenic, and thrombocytopenic. If you don't know what that means, it just tells us that three of the blood cells that should be working are not working properly. So the results were good and bad. We do not need to proceed with a transplant. A transplant that could very well prove fatal for Elijah. We may have several years before that time. That is an incredible blessing. The stronger and older Elijah gets the better his chance of survival.
But, the reality that Elijah will most likely (definitely from a medical prognosis but we know what God can do) progress into bone marrow failure that will require a bone marrow transplant, is now back into the forefront of our minds.

My favorite John Piper sermon is entitled "Don't waste your cancer." I didn't want to be asked to not to waste my son's cancer. I know that I am being asked to walk this road and I think now that I have stopped kicking and screaming inside, I am ready to face this challenge, this opportunity, this burden. I am ready to walk this road or be carried. My plea with God has been, as you can imagine, just let me be the one to deal with the cancer--not my precious little one. God is opening my eyes to some unique blessings. I am seeing Elijah's autism as a gift. I could not imagine having to sit with my sweet 5 year old son and having to tell him what the future may hold for him. But, for Elijah, I can give him details that he needs to know and is able to comprehend, and God will have to tell him the rest deep within his heart. And I will again, place the life of my son back into the arms of his creator...and I will trust that His Father will comfort  him, prepare  him and give him all that he will need to face the challenges that lay ahead for him.

And so now, we will appreciate each moment we have been given with Elijah. We won't waste a moment...We will celebrate his uniqueness, his gifts, his beautiful spirit. We will play more, read more, talk more about God and heaven. We will not waste Elijah's disability..or his syndrome. We will allow God to speak through his creation--Elijah. And Elijah's life shouts out to the world--"I am fearfully and wonderfully made."