Friday, January 6, 2012
I know. I know. I know. It has been ages since I have wrote anything about Katlyn. I think it is real time I got started at it again since it has worked so well in the past at allowing me to get all of these feelings off my chest. Things have been just a roller coaster over the past here. Here's hoping that 2012 is a great year for Katlyn. Here's hoping that she will finally get healthy.
So recently we had an appointment at NIH and things went pretty good. The much dreaded appointment was really going to be all about discussing how Katlyn's gene therapy is not working how it should, and what we are going to do as a plan B. Katlyn caught norovirus two years ago and she has been struggling with it ever since. Its at bay, but it just won't go away. It has really started to take its toll on her little body. She had been up to 57 lbs, and dropped down to 41 lbs. She is now anemic and does not absorb vitamin E. So Katlyn's parents, we decided it was time to do something about it, before the virus gets her very ill and its too late. Also, Katlyn has not been able to go to school this year. She is supposed to be in kindergarten, but it is just to risky to have her around so many children, so she stays home with me.
So Katlyn has been receiving IVIG orally. At first I thought it was outrageous!!! But it honestly has worked in making her feel better. Every time we put her on, she actually gains weight and doesn't feel sick all the time. Unfortunately it hasn't been enough to rid the virus from her gut, and she continues to live with it. So, our next plan of action is to put Katlyn back on Adagen. Hopefully that will be enough to rid her body of the virus. In the past we have always been told that giving Katlyn the Adagen would be deeming her gene therapy a failure. However, there is some new data that may suggest that there is a chance it may actually help the gene therapy to work. This makes us so hopeful!!!!
The problem with Adagen is that it is not available commercially and it is so so so expensive. Because it is not available in Canada, our insurance company said that they would not cover the cost. So our next approach was to ask the New Brunswick government for help. I was really shocked when they also said that they would not help with the cost. Typically this drug is covered under a provinces catrostrphic drug plan, but NB does not have one. So determined as we were, we appealed the insurance companies decision to not cover the drug. In the end they did indeed decide to cover the cost at 80%. At about $350,000/year, this would still be too difficult, but luckily there is a clause that says once our annual copay reaches $3000, the policy kicks in 100%. This is awesome awesome news!!!! Apparently we are supposed to come up with the upfront cost of the drug and then be reimbursed. LOL!!! Yeah, who has $30,000 just sitting around. Also, the $3000 copay would be on the first shipment. We still haven't figured out those little details yet, which stresses me out beyond belief. However, we did get most of it covered so far. I know its going to work out. I just keep praying!!!! We don't have that kind of money, even if it is $3000.
So once Katlyn gets this Adagen, she should be strong enough to get rid of the virus. This drug is a treatment for her condition, but not a cure. As her doctor recently told me, we need to look at it as a way to get her healthy enough to discuss the plan B. I don't even want to think about it. Every time I do, it just makes me so incredibly sad.
A bone marrow transplant.
For now, I am only going to focus on getting my baby healthy. Why she has to go through so much, I will never ever know. It seems so incredibly unfair. I am trying to just have faith in God. Its a challenge because sometimes I just feel so helpless, angry and sad. I have seen in the past though, that prayer is very very powerful. Now, she needs prayers more than ever. Happy new year everyone. May your best day of 2011 be your worst day of 2012.