Cleaning and scrubbing will wait ’till tomorrow, but children grow up, as I’ve learned to my sorrow. So quiet down cobwebs! Dust go to sleep! I’m rocking my baby. Babies don’t keep. – Ruth Hamilton

Wednesday, February 27, 2013

An Overview-Hepatitis Associated Aplastic Anemia

Some people have been confused about Mack and I know it takes a long time to go back through old blog posts, so  here is an overview of what has happened with our little man.  Maybe it can clear up some misconceptions.

I am not in the medical field-this is what I know as a parent.

It all started back in October when Mack had an ear infection.  He was on medication, but wasn't getting better.  I made an appointment on Monday morning, October 28th to have him looked at.  As I was getting him ready to go I noticed some yellowing in his skin.  As soon as the doctor saw him, he wanted some blood work. Here is more of the story: The beginning

He ended up spending a few days in the hospital in Columbia.  Then on Halloween night we moved by ambulance to St. Louis because they had a liver specialist.  While we were there Mack's numbers stayed about the same and didn't come down.  They tested EVERYTHING you could test.  Everything came back fine.  We went home with a PICC line in his arm and gave him steroids at home.  He was still not getting better as fast as he should have.  The doctors tried another medicine that children with an autoimmune disease would take and his numbers dropped.  They stayed down and were back to normal.  Then, because they were testing his blood each week and I brought up how bad he was bruising, they noticed his platelet count was dropping...

In those few weeks before we went back to St. Louis they began dropping to low numbers.  We had no idea what was happening.  We had a meeting with a hematology doctor that Wednesday.  When we left, we had no idea what was ahead of us.  In fact, we left Avery and Lincoln in Columbia so they weren't having to travel as much. 

Within 10 minutes of meeting our new Dr. he was able to explain to us what was happening.  He wouldn't know for sure until a bone marrow biopsy.  He told us about Hepatitis Associated Aplastic Anemia.  It is very rare-in fact there is not much research to compare to Mack.  It is caused from an unknown virus (we donated some of his biopsy for testing) that attacks his stem cells.  They were still able to keep up with cells and platelets, but the liver was affected first.  About two months later when the liver was healed, his stem cells weren't able to keep up.

It is treatable, but the journey is long and painful.  We first tried to see if he had a sibling match for a donor because his white blood cell count is really low and you can "get" or transfuse more white blood cells.  Unfortunately, they weren't matches, so it was on to the treatment.  This treatment is actually taken from horse serum.  There are side effects, but he did really well during the treatment.  It strips his body of everything to allow his stem cells to rest and hopefully they will begin reproducing cells on it's own. 

While we were getting treatement, we were the only non-cancer patient on the floor and our doctor was they only one to know about this kind of aplastic anemia.  We were confined to the room for five days and were thrilled to get out (Busting out) we made it home for three days!!!

Then on Sunday, February 17th, Mack woke up with a fever and was throwing up.  Mark took him to the ER and then they flew him to St. Louis.  It was the most terrifying moment to date...

He spent some time in the PICU and was later moved back to the ninth floor (oncology/hematology).  There he was given some medicine, but was worse and then started to complain about pain in his knees.  Our doctor had told us about this side effect-it's called Serum Sickness.  It attacks his joints and is very painful.  He slept a lot!  He was on a lot of morphine to help him sleep a lot. 

This was our fourth time to the hospital, so we have the drill down.  Except this time we used more help.  Between exhaustion, the stupid snow storms, and Mack we needed more breaks.  We had a friend stay with him one night, my mom stayed with him another night, and Nanny and Papa H. sat with him a lot. 

As of February 26th, We are out and at home (in St. Louis), but only because as parents we knew he would be better out.  It doesn't mean the medicine is working.  Not at all.  He had to have four platelet transfusions and one blood transfusion just in one week.  We will have to keep doing those and the doctors in Columbia won't let us do it there.  They claim it's too many cooks in the kitchen-I don't agree with that, but it's not for me to decide. 

It will be a while until we know if the medicine has worked.  Until then they have searched for a donor in case he will need a bone marrow transplant.   Kids wait months and sometimes don't find one, but he already has two potential donors. If you are interested in being a donor check this out: donor

He still looks like our Mack, but on steroids:).  He is still going to play like Mack, but gets a little tired.  As our doctor told the other doctors and nurses on his floor "Just because he has hair, doesn't make him any less sick than these other kids on the floor."  He is sick.  He is real sick.  I am thankful for everyone telling me how strong we are, but ANYONE would do this for their child or family member.  We will continue to be his advocates and there isn't much time for feeling sorry for ourselves.  Yes, there is the occasional "why us" moments, but it's our world and we have to step up and get our baby better.

I hope this explains our situation better.  There is nothing good on the Internet about this.  In fact, I tried to look and see if there were any other blogs out there and all I encountered was a story of a 13 year old boy who got a bacterial infection and died...yeah that was the end of our search.  Mack is going to live a normal, happy life!  Cheers to Mack getting home and being happier with all of us together.  There is nothing stronger than family!!!!

1 comment:

  1. Big, huge prayers, thoughts, hugs and hope for Mack! I just caught up and I just can't imagine. You ARE strong. And you will get through this. I am raising Mack and all of you up into God's arms.