Sunday, December 27, 2009

2010 - Cara's Relentless Search for the Good Life - One Year at a Time


2009 has been an unbelievable year! I just wanted to give you an update on how Cara has been doing throughout the year. We have traveled to Chicago with Cara four times this year: February, May, August, and November. She is currently still on Solumedrol Infusions, however, they used to be twice a week and are now only once every two weeks. They are trying to get her off of steroids which are damaging to her. She is taking 15mg of Prednisone every day also, on top of many other immune suppressant drugs. She is maintaining a fairly stable status so far on her treatments. I am sure you can see in her pictures how much these medicines are affecting her body.

In the summer we had a couple of scares, though. She had an anaphylactic shock reaction to one of her infusions called IVIG. Luckily, she was in the hospital at the time and they reacted quickly with an Epi-pen. Then shortly after that she had another allergic reaction to her Methotrexate injection which she has been getting for the last year and a half. Needless to say, she is no longer getting either of those drugs anymore. In August, she had to be hospitalized for an infection in her port. She was there for a week and then luckily they were able to clear her to go home for the remaining antibiotics to be administered through Home Health, which thankfully cleared the bacteria from her port. This was a close scare, because they were looking at possibly having to remove her port, which would have been horrible for her.


In October, we held two fundraisers for Cara’s medical and travel expenses. The overrun cost for all of her expenses not covered by our health care insurance runs somewhere around $15,000 to $18,000 a year right now, and we are looking at at least another two years of this. Throughout the year we receive lovely cards and donations scattered at different times from different people. It always amazes us that throughout everyone’s busy schedules, they take the time to think of us. It has been so heart-warming to know that everyone cares so much about Cara, and our family. These fundraisers and donations that everyone sends go directly to the medical fund in trust for Cara’s expenses when they arise, and every little bit helps.


Your help has saved our family from having to endure any other hardships along this journey that we have been on with Cara. It has taken away a huge amount of stress from having to worry about not being able to afford to give our daughter the care that she so much needs, and has to have. It has allowed Cara to see the very best doctor who has the knowledge of this disease, and I believe it has saved Cara’s life thus far. The only regret I have is initially waiting eight months during diagnosis, to get her where she needed to be in the first place, which has set her back a bit in this treatment.

Thank you, thank you from the bottom of our hearts. All I can say is when something like this happens in your family, you really find out how much support you have, and that has been our saving grace!


No one knows the future... certainly we are not alone in that regard. But one thing we do know... good people help others with good works... and we and Cara are so uncommonly surrounded with those who do those things.

Johann Schiller said : "God helps the brave".

Lord Dunsany said: "Good works make beautiful things. And good things last".

So it is... so it will be...

Happy New Year and God Bless you all!

CARA and ME... her mom, KRISSY