The Tests are Negative!

The doctor called us on Friday to let us know that Carlie's tests for cancer all came back negative!!! YEAH! They want us to keep a close eye on her for swollen lymph nodes, fever, and loss of appetite, BUT for now GREAT NEWS!!
Thank you to everyone who was looking out for Carlie with prayers and sending her positive thoughts. We appreciate it more than you know.

Carlie O Update

Well we went to the pediatric oncologist/hematologist on Friday at OHSU/Doernbecher Children's Hospital in Portland for Carlie. They don't "think" she has leukemia or lymphoma, but they find her case to be puzzling. 4% of her lymph node cells are clustered together with a special marker (this is not normal - this is what cancer does). They did some blood work and a chest x-ray to verify their diagnosis of no cancer. They will call us next week with the test results. Carlie thought it was really fun to go to the hospital. We got there early so we could ride the tram up to the hospital. She called it a rocket (those of you who watch Little Einsteins can understand why she thought it was so cool to be in a rocket ship). She also got a superhero cape (some lady makes them for the kid cancer patients and a Barbie for getting her blood drawn.
The saddest part was seeing all the kids there with cancer. Most of them at various stages of baldness and weakness. I suggest everyone say a prayer for these brave and strong kids who have to endure something NO kid should have to endure. It broke my heart.
Just an interesting side note. This is where they discovered and developed my cancer drug, Gleevec.

Pray for Carlie O

Here is another lemon life is throwing at my little family. I am not posting about this to freak anyone out, but I am posting because I want my little Carlie to have as many people praying for her as possible.

So here is the story...

When Carlie had her tonsils out last month the doctor did a biopsy on her lymph nodes. He sent it to the pathologist and didn't think much of it, he said it just was standard precaution. The pathologist then came back and said 4% of the cells were exactly the same size and shape which is a characteristic of cancer cells. He was confused by these findings and sent it to another pathologist in Portland for review. This pathologist's conclusions were also inconclusive and he sent it on to a pediatric pathologist specialist. This specialist was also puzzled. The next step was they were going to take the test results to their monthly board meeting to discuss with their colleagues. Our doctor kept saying no one thought it was cancer, BUT they were very puzzled.

Anyways, we had been waiting for these results when we got a phone message on Friday from the special children's hospital in Portland saying Carlie had been referred by her primary care physician and they needed to schedule her for next week. O.K. I was a little freaked out, especially since we couldn't find out anything until Monday morning since by the time we had got the message on Friday everyone was closed.

Monday arrives and Corey calls the primary care doctor and she knows nothing about it. So he calls her ENT that took her tonsils out and he is gone. So Corey calls the hospital to find out why she was referred, but they wouldn't tell him.

So Tuesday morning (today) the ENT doctor calls Corey and said he did not refer her (he would have called us if he had), BUT he had sent a question to them about what do we do now with all these inconclusive test results. They (the hospital people) in turn decided for reasons I do not know about that she needed to be seen ASAP.

So Carlie, daddy, and mommy (even though I have ZERO sick days) are going to an appointment in Portland Friday morning at 9 AM to hopefully figure out what is wrong with my baby.

I am hoping everything is fine, but I am pretty nervous.

Please pray that she is o.k.

It is Amazing! I am Loving My New Insurance Company!

Well I have some fantastic news. The state of Oregon made us (all the school districts) join a new insurance company and coverage started October 1st ( I was pretty annoyed about this because I liked my insurance company). I called this new company on Friday and talked to someone who could actually answer my questions. My cancer drug Gleevec still costs $700 a month, BUT I have a $1,000 maximum out of pocket prescription drug benefit. So the first month I will pay $700, the 2nd month $300, and then for the rest of the year it will be FREE!! So it will be painful the 1st month, but it works out to be about 84 bucks a month! YEAH!!! So much better. You can't believe the relief I felt when I found this out. Truly an answer to prayer! My old insurance company did not have this benefit!
I also did some research on Gleevec. The patent on it runs out in 2012. This means there will be a generic in 2012 and on my insurance plan generic drugs are only 5 bucks! They already have a generic in use in India with great results!

My Cancer Drug Costs How Much??????

Well I had some super news yesterday. We finally got my insurance company to approve my cancer medication. I have to take a drug called Gleevec everyday for the rest of my life. The speciality pharmacy (yes regular pharmacies do not carry it) called me to tell me they got me a "great" deal (can you feel my sarcasm?). I only have to pay $700 a month (no that is not a typo) for the medication that will keep me alive. They are giving me such a bargain since without insurance (heaven help anyone who doesn't have insurance)(and I actually have pretty primo insurance - as far as insurance policies go) it would cost $3500 a month. YIKES!!! What a great choice - stay alive and not be able to afford gas & groceries OR die. Awesome. I am having such a great day. They are going to try to qualify me for help through some foundation, but I am sure I am one of those people that makes too $$ much for assistance, but still really can't afford not to have assistance. Gotta love the lemons life throws you, but hey I am still alive and that is a miracle in itself.

I am so cool they make shirts with my name on them!