Understanding Aplastic Anemia

So today we sat down with Dr. Fair and he discussed with us exactly what Aplastic Anemia is.

There are three types: mediate, severe, and very severe.

They base it on the blood levels of the patient do determine the severity of it.  

Bella's levels are extremely low, having zero white blood cells, and very low red blood cells and platelets...

making her be titled: Very Severe Aplastic Anemia.

Aplastic Anemia is a rare disease where the bone marrow stops working...

not making any of the three blood lines: white, red, platelets.

Her bone marrow should be around 95% for her age, and hers is less than 10%.

There are many different reasons why this can happen, and doing testing is how to eliminate the different causes.

80% of the time, it is Idiopathic...meaning they don't know the cause.

10% could be Genetics, and 10% could be cause by a virus.

So they will be taking her blood and doing these tests to see if any of them come back positive.

So we will be waiting for about a week and a half to hear back from them...which is so hard to do! 

As Dr. Fair explained this all to us, and the treatments that could be used as well as the side effects,

my heart began to sink, and the anxiety and fear began to come back.

I didn't realize how sick she really was, and how there is no sure outcome in any of this.

It is different for every single person, and the side effects are different in each case as well.

I hate uncertainty, and this is one of those diseases where there just is no certainty.

They assume that Bella will fall under the 80% where we won't know the cause of this.

If that is the case, there are 3 standard ways to treat this.

1.  Same sibling bone marrow transplant

2. Immunosupression 

3. Donor bone marrow transplant

We will be testing Tyler when we leave the hospital to see if he is a match for Bella.

It is rare though (1 in 4) that he will be a match.

They do this line of treatment first because replacing her bone marrow with a sibling match 

gives her a 95% of working with no long term side effects and is said to be a "cure".

This is by far the best scenario.

If he is not, they will try immunosuppression therapy and try to suppress her own immune system,

assuming that it is attacking the bone marrow and not making it work.

This has a 85% chance of working, but in the 85%-there is a 10% chance of relapse 2-4yrs. down the road, a 10% chance of her getting Leukemia, and a 10% chance she could get MDS.

The last treatment is a donor, which surprised me, but it's because they can have a lot higher chance

of problems occuring in doing this.  

There is a thing called "graph-host disease" that can occur, as well as long term side effects like Leukemia, MDS, and other blood related diseases.

All of these seem overwhelming to me, and as I heard them it was like I was in a dream-once again.

How were we sitting there discussing something like this?

I know that this is what she has, and I know she is not well, and I know they can help her...

but it is not going to be easy and no one ever likes to see their children suffer and feel well.

My high of highs last night is definitely gone, and I am back to reality.

I am so grateful that is ok, that she does not have cancer, and that she has a loving Heavenly Father

who loves her and knows her better than anyone.

We get to leave the hospital tonight and go home...and I can't wait for us all to be home together!

Tyler has missed Bella so much, and has wanted to come see her.  

We feel as though seeing her in the hospital will just worry him more, 

and that seeing her at home will be the best thing for both of them.