Feb 9, 2010

My son has Aplastic Anemia

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.


The Passionate Housewife said...

I am SO sorry Alida!

I cannot even begin to fathom what it must feel like to have a child this ill.

He is beautiful and my heart breaks for you...

Know that I am praying for your sweet little boy.

Aimee said...

I'm so sorry.

When David had his transplant, we met an Asian family whose daughter had AA. The girl had no siblings. She was about 8 yrs old. She had a little skin GVHD on her face but she did well.

We also met a Hispanic family whose son had AA. He had an unaffected twin brother who was his bone marrow donor.

Both of these families stayed at the Ronald McDonald House at the same time as David and I.

With 4 other children, you are likely to have a sibling bone marrow match. They say there is a 1 in 4 chance for a sibling match. I have not seen any adverse GVHD in a child with a sibling match.

God will provide.

Hoping for the best!

mom to 5 yr old David

Ransomed~Redeemed said...

We are praying for your little David! You are in our prayer box. (we pull names out of a box) Your blog is amazing. For your son having a arare disease, you have such vast amounts of medical knowledge. I am trying to be informed as well.
With having FOUR other siblings, the doctor told my husband he has only a 30% chance in finding a match! I find that hard to believe. I mentioned that we banked the cord blood of his sibling and they mentioned that it also has to be a match. I was unaware of that.

Thanks gain for encouraging me. Bless you dear sister in Christ, Alida w5

Anonymous said...

My son was diagnosed with Aplastic Anemia 7 years ago and is doing very well now. Please contact the AAMDS Foundation, as they can help you tremendously. You can email them at AAMDS.com. God Bless

Travis Julius said...

There is much better and much more natural help out there for Aplastic Anemia. My wife was diagnosed with it. I have just started a blog to try to get the story out, I'm new at this blogging stuff so if you can't get it, please let me know. The blog is star-hopes90forlife.blogspot. Or my e-mail address is 35dbantique@gmail.com. Please get a hold of me. It breaks my heart to see anyone suffering from this now, the solution for my wife was so simple. I will give you all the information I have. I'm not a doctor, I'm a mechanical engineer, but I think I can point you to more hope than what you have been shown so far. God bless David, you, and your family.

I will keep you in my thoughts and prayers.
Travis Julius

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