Friday, February 28, 2014

Head in the Sand

"If I don't talk about it surely it will go away!"

"If still have checks in my checkbook, so surely there must still be money in my account!" :)

"If I don't answer the phone I won't hear the bad news on the other end."

I admit that I like to put my head in the sand. It's easier to let someone else figure out the problem. Well, the days of living with my head in the sand are over.

I used to think I had good insurance. I've never had insurance worries like so many other people with bleeding disorders. And when it came to advocacy (like going to D.C. advocacy) I never had a level of comfort with this kind of work.

Yes, I admit, my head has been in the sand. And now it can't be.

I thought I was about to have a heart attack last week during one of my numerous phone calls to my insurance company. I have been trying for weeks to get approvals for Xolair (an allergy injection) for my "Christian." The allergist we are working with thinks using this drug may help my son with his allergy to factor eight.

The insurance keeps denying the drug despite conversations with our hematologist. Their reasoning is "Xolair is not an indicated drug for hemophilia."

They are not listening.

And the part that absolutely blows me away is that the drug is approximately $800. $800 in the care of son is pennies in comparision to the millions of dollars we use in factor replacement! Yes, millions and he is eight years old. They don't stop to think that this $800 drug may help my son's body accept factor eight and use less factor in the long run.

The insurance had the nerve to ask, "Have you paid for it out of pocket to see if it works?" At that moment it felt like one of the veins in my head exploded.

I have to get out of my box and do what so many others have been doing for years...get out and educate others and make change happen, in a different way.

I am only a mom with two sons that have hemophilia. Only. Yeah, right. I should know better than to say that .

If you know a parent of a child with a chronic illness you know that there is not much that they cannot do :)

I am not going anywhere and I will do whatever it takes to make sure that my children get the treatment they need to live empowered, fulfilled lives.

No more sand for me.


Wednesday, February 12, 2014


My mighty warrior "Christian" is amazing.  He manages to be happy despite not being able to walk, despite missing so many days of school and even despite spending day after day in the hospital because of his bad knee.

His right knee started becoming a problem in January 2013 and here we are in the hospital again.  Again and again and he's not even walking.  It is so frustrating.  I sound selfish but the fact is that living with a severe bleeding disorder with an inhibitor is extremely difficult on the entire family. 

You try to keep a stiff upper lip and manage to tell people "It's okay, he's a tough boy, we are okay, we do what we have to do," etc. etc.  But honestly, I am exhausted.  Exhausted to the point that I don't know if I want to scream or cry or just crawl under the covers. 

One of the most trying parts of Christian's condition is that his treatment is being managed by a team out of state and getting that team to talk to our in state team and actively get on the same page is difficult.  They work well together, but right now we are running circles and always treating a bleed in a crisis management mode.  We need more and I think this hospitalization has opened the eyes of some of the clinicians working with us.  Finally.

With my oldest son hemophilia was a breeze.  I always wondered what the fuss was about.  I didn't understand target joints, pain and why some of the younger generation needed wheelchairs and walkers. 
For everything my "Lance" did not go through Christian is experiencing ten fold. 

I would love to see him run but walking on both legs without a walker would be amazing.
To see him walk up and down the stairs on his own instead of scooting on his bottom from step to step would be a victory.
And to watch him walking on his own without the stares a wheelchair brings would make my heart burst with joy and gratitude.
The time will come. 
I have hope and I'm not giving up.  I'm his Mom and I will do anything and everything possible to help him get to a better place!  I just have to look into his eyes, snuggle up with him at night and feel his breath on my face to remember that the pain will pass and the moments of joy and happiness we have far outweigh the painful moments of living with hemophilia.

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