Not Good News

**UPDATE**
Thank you all for your comments thus far... really helpful.. keep them coming!

I have spoken with some fabulous nurses from Stanford, Seattle Childrens, Texas Childrens, and waiting to hear back from more. It's still the same bad news when it comes to antibodies. Some don't pre-treat, they wait for the perfect match and we PRAY that it comes. Other's pre-treat more agressively than other. Carson wants to check out Boston Childrens and some in Pennsylvania as well. It's all going to come down to parent's intuition. What the best options are for Owen. THANKFULLY, we have time on our hands and we continue to pray for more. I hope to spend less time on the phone tomorrow and more time PLAYING. What a stink of a day!
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I have had an aweful feeling in the pit of my stomach all day.

It started with me calling the transplant coordinator through our insurance to make sure they were going to cover Owen being seen at yet another transplant center. I expressed my concerns with UCLA, to which she immedietly called them. Surprise... I got a return call from UCLA just 5 minutes later. Not sure why it took an angry insurance provider to get a return call.

First is was the transplant coordinator asking if I wanted the transplant cardiologist to call me back with information... um yeah?

Dr. Halnon called immedietly after I hung up with the coordinator. She said she hasn't called because it's only bad news. All of the chemo and immunoglobulin treatments did NOTHING for Owen's antibodies. They didn't even budge a bit. Being the optimist that I am... I said "why not try it again?" OR "we can maybe try cellcept?"

The reply that she gave was "OH, do you want to try the treatments again? I can also sent a request for a perscription of cellcept to be written by your cardiologist if you want to TRY that. We haven't seen much success with either treatments, but it doesn't mean Owen won't be the first!"

She proceeded with asking me if I'd considered maybe selecting a transplant facility in the midwest? With Owen's antibodies, he would need almost an exact cross match right now, which means he definetly needs a caucasian donor .. almost a twin. So she suggested that the midwest may have a larger caucasian donor pool and his chances of getting a heart would maybe increase. The majority of donors at UCLA are hispanic or african american. She also stated that some transplant facilites don't run cross matches on antibodies, so they'll transplant any available heart and treat rejection after the fact.... no thanks.

The antibodies he has are common antibodies. Only a heart out of about 10% of the donor pool would be acceptable for him. Since he didn't show signs to the initial antibody treatments, it's discouraging to think that after he gets a heart, that the treatments to prevent rejection of the heart will work. Another option she gave was to simply treat his heart failure and forget about transplant. I don't like this option.

She said she would speak with their immunologist to get more ideas. She will also contact some other transplant centers to find out what their ideas are.

After our 45 minute phone call, I hung up feeling discouraged, and VERY DETERMINED! I know that UCLA is the "bad guy" and had to deliver the news. I also can't help but to listen to my instincts. There has to a transplant facility that has a little more optimistic news for me. Someone that sounds hopeful. A team that has dealt with this in the past and had successful outcomes. I will call every transplant facility and ask them how they deal with antibody treatments, what their opinons are and I will go anywhere!

I need your help!! Tell me your experiences with hospitals, transplants, antibody treatments.. whatever you know or have experienced. Good or bad. Anywhere in the US. At this point, I will do anything!!

Spread the word. Thank you.