Feb 9, 2010
OK, this is sort of a vent here.
My son has a serious life threatening disease!!! MY SON has a serious life threatening disease!!!
This is something I never thought I'd have to say. This is something no parent ever wants to hear. Many of us spend our days waiting for the other shoe to drop. We wait for calamity to befall us, and so it seems (and at the present moment feels as though) it has. I am taken aback by surprise, feeling as though the wind is knocked right out of me. My eyes blink away the tears even writing this. I can't believe this is our life now. I have seen alot of things and lived through some pretty terrible situations, child abuse, foster care, living in a domestic shelter with my grandmother, youth shelters being homeless as a teen, etc. They all pale in comparison to this... None of the things I have been through come close to this. My son, my sweet little huggable, exuberant, hilarious, amazing, joyful,silly affectionate, cute, daring, adventurous, spunky little son has a serious life threatening disease.
Here are some facts about Aplastic Anemia.
·Aplastic Anemia is rare with a worldwide variable annual incidence cited between 2 and 6 cases per million persons. Aplastic Anemia is so rare in the US, only about 200-300 people get it every year. We must be "the Lucky ones." Hey with these odds perhaps I should take up gambling! ;-)
·Aplastic anemia and myelodysplastic syndromes are non-contagious blood diseases that can strike regardless of age, gender, race or geographic location. They occur when bone marrow stops making enough healthy blood cells.
·Estimates put new cases of aplastic anemia at only 300 per year and of MDS at 20,000 per year. The diseases are too rare to be reported to public health agencies such as the Centers for Disease Control and Prevention. But AA&MDSIF keeps a patient registry database, one of the few sources for statistical information on the diseases.
·The most common treatments are transfusions, drugs that suppress the immune system and bone-marrow transplants. While transplants have effected some cures, a bone-marrow match is hard to find; even among relatives, an exact match occurs only about a third of the time.
·There is also a chance, that your child may reject the transplant, leading to life-threatening complications. Not everyone will have a suitable donor. This is referred to as Graft-versus-host disease. GVHD is a common complication of allogeneic bone marrow transplantation in which functional immune cells in the transplanted marrow recognize the recipient as "foreign" and mount an immunologic attack. THERE IS NO CURE FOR GVHD!
Because the disease is so rare, I am finding it difficult to find lots of information about statistics on which options are more effective and that have a lower fatality/complication rate. I am also having trouble finding alternative therapies to assist in whichever medical treatment options we will have to choose. We need to find support groups to help us find what is most effective.
We are desperately praying for provision. We have reached the end of our resources and there still isn't any work available for Huatzin or his co-workers. We pray for jobs to start and needs to be met. I am not sure what else to say. A good friend reminded me to take things moment by moment and day by day. I choose to follow the one who formed the stars in the sky, gave life to my sweet little boy, counted the hairs on his cute curly little head and numbered his (and our) days.
Psalm 3:3 "But thou, O LORD, art a shield for me; my glory, and the lifter up of mine head. I cried unto the LORD with my voice, and he heard me out of his holy hill. Selah. I laid me down and slept; I awaked; for the LORD sustained me.