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!

5 Months Old Today

Berkeley is 5 months old today. I can't believe it. He is scooting around and is soooo close to crawling. He is so alert and happy. He loves to play on the floor, play in his Jump-a-roo, smile, and play with his mommy & daddy & Carlie.

He is really loud in every way - he burps like an adult, shrieks when he is happy, grunts really loudly in church, and screams bloody murder when he is hungry, and boy is he hungry A LOT! He also spits up ALL the time and slobbers a crazy amount.

His big, blue eyes just melt my soul and I love him more than words can express. It is so amazing to watch him grow and develop. I am truly blessed to have TWO amazing children.

Carlie's Surgery Day

So here are some more photos from Carlie's big surgery day back on September 11th. We had to be at the hospital at 6:45 AM - way too early! She had her own room before and after surgery. While she was waiting for surgery they gave her the green care bear and a care bear DVD to watch. I think we have watched that DVD at least a million times.
Well, Carlie was happy until they took her away to the operating room without mom and dad. She was pretty scared and didn't know what was happening so she started to cry, which of course made mommy cry (what a baby). When she returned to her room she was really out of it. She also threw up everywhere. It was super sad. After a few hours with no throwing up and being able to drink some liquids she took a ride in the wheelchair out to the car. When we got home she put on her favorite Christmas PJs, complete with robe and slippers. She even got to steal mommy's chair (mommy must love her!)! Then for the next week or so she got to eat all the Rocks (Dananimals yogurt) and pudding she wanted. The first week was NO FUN AT ALL!! She is doing better now, except her voice is a little strange. The doctor said we would not notice a difference in her sleep apnea for about a month so I am really looking forward to October 11th!!!!

1st Day of Preschool

I am kinda of a loser, because I am way behind on my blogging. This is a pic of my beautiful girl on her 1st day at preschool this year. It started a couple of weeks ago and she loves it. Her favorite part is riding the school bus, singing songs, playing dress-up, and playing with her friends Shane & Dominic.

Back to Work

I guess it is time for an update on my recovery. Well people, I went back to work this week part-time and it is kicking my butt!!!!!! I can't believe how every muscle in my body just ACHES! I had weaned myself off the pain meds, but now I am back on. All of my morning classes are super awesome and my afternoon classes are psycho.

I saw my new cancer doctor on Tuesday and things went well. They ran some tests (no results yet) and we talked about my treatment. I am going to be taking a drug called Gleevac. Apparently it is crazy expensive so my doctor was going to make some phone calls to get the best deal possible for me. Once I start the drug they are going to monitor me at least once a week for a couple of months. One of the major side effect is edema (YEAH - I get to be all puffy). After the side effect calm down and there is no sign of the cancer then I will be seen once a month for the first year.

This drug is supposed to cut the rate of the GIST reoccuring down to 3%. Those are some pretty good odds. The drug is supposed to be the most effective on high-risk GIST patients - THAT"S ME!!! I guess when your tumor is as ginormous as mine you are automatically considered high-risk.

Well, that's about it - just waiting on test results and the doctor getting the Gleevac in stock.

Very Funny

This skit from SNL is hilarious - check it out!

Carlie's Tonsils are Out!

Uploaded by www.cellspin.net

Berkeley is Four Months Old Today!

OK people. I am so in love with Berkeley. He is 4 months old today. He has such big beautiful blue eyes that melt my heart every time I look at him. The past 3 weeks have been so hard because I can't take care of him. I am finally am to the point where I can hold him for short periods of time, and oh how grateful I am for that. He is such a happy boy that smiles alot and is ticklish. He is SO STRONG! He always wants to stand up and I swear he is just going to take off walking soon. So here are some pictures for you to get a look at my beautiful boy.

Carlie Loves Berkeley

Carlie loves her brother. She is always saying he is "so cute"!

I Seriously Love My Chair!

Here is Carlie O modeling my new super fabulous chair.

Corey bought this for me a few weeks

ago to make my recovery more comfortable.

Corey ROCKS!

Daddy is Awesome!

Look at what Corey built all by himself! He has been working on it after work

and on Saturdays for several weeks and he is finally done.

What an awesome dad he is. Carlie loves it! Now for the rest of the yard......

I'm a Cancer Survivor

Well today was the big appointment with the oncologist. Things are good. It was a GIST tumor that was 25 x 20 x 18 cm large. Yes the metric system rules (inch is a bad word in my science classroom people)!! It was enormous or according to the surgical report - an extremely large tumor. The doctor told me that if this had happened ten years ago I would be dead within a year!! WOW! BUT, there is a guy in Portland (Go Oregon!) who developed a drug that has been used for the past five years that shrinks existing tumors and prevents new ones from appearing. They are saying he is going to win a noble prize for his work. So basically, he is referring me to a local medical oncologist (YEAH - no more long drives to Portland). He said I will have to take this drug everyday, get regular CT scans, and be monitored by an oncologist for the rest of my LONG life. I am not totally out of the woods yet, my new doctor will most likely do a full body workup to make sure there is no cancer anywhere in my body. BUT - for now this is SUPER AWESOME NEWS! I just need to recover from what my doctor called "seriously major surgery".

The only bad news is they have no pictures of my tumor!!

Carlie's Sleep Study

Carlie O has issues. She has allergies, asthma, & super huge tonsils. When she sleeps at night she tosses and turns, wakes up a ton, snores, and breathes so loud you can hear her outside her door with the door closed. So finally, at the insistence of her doctors we had them do a sleep study at our local hospital back in July. You go to the hospital at 6 PM and they put you in a room with a cozy bed for Carlie & and a not so cozy recliner for mommy. A sleep technician then proceeds to glue & attach a million probes and wires all over her head and body. This part took about an hour and a half!! Then Carlie is supposed to go to sleep, which she finally does after I read her a million books. So then they monitor her all night in the next room. It was the worst night of sleep I have ever had. Carlie was snoring the whole time and man was it loud. On top of that she woke up so many times that the sleep technician said she was one of the worst sleepers she had ever seen. There was even one time that she woke up and was talking to me (seriously - we were having a full-on conversation) and the technician came in a said she was asleep. CRAZY!

In the morning (5:30 AM!) they woke us up, detached Carlie, and sent us on our way. 2 weeks later the sleep study doctor called us to say Carlie has moderate sleep apnea and should absolutely get her tonsils and adenoids taken out. He said her sleep was so restless it was like she was getting about 4 HOURS OF SLEEP A NIGHT! YIKES! POOR CARLIE! So Carlie will be the third person in our family this year to rack up some major medical bills. It makes me think when is something going to happen to Corey???

My Big Fat Scar

Here is a picture of me in the hospital

trying to look as miserable as possible. Here is a picture of the awesome yeast infection

I have on my tongue from all the antibiotics I had.
And here is it is - the picture all of you have been waiting for. I know it is super attractive. Just be happy I didn't photograph the whole thing!!! That would have been a little too much information.

The Pathology Report is in!

Well, I talked to my doctor's nurse today and he read me the pathology report. The tumor on the colon and small intestine were benign (not cancer) and part of the watermelon tumor is benign. BUT, part of the watermelon is a GIST tumor (gastro intestinal stroma tumor - i think that is what it stands for). This is cancer, but it was the type of cancer that my oncologist was hoping it was because it is 100% treatable. Do I know what that treatment is or anything more - NOPE. I have a big consultation appointment with my oncologist on August 26th. This is when I will know details. But, the report is really good news and I feel very relieved. I have cancer, but I feel very lucky - it could be way worse.

If it isn't obvious I am home now. I came home Wednesday afternoon after 5 nights in the hospital. I just had my staples removed today. I am seriously thinking about posting pictures of my incision before and after staples - so watch out! It won't happen today because I am sooooooo tired, in pain, drugged up, and need to take a nap.

Update on Watermelon

Well, here it is Tuesday and NO pathology report. All I have learned since the last post is they took out 1/3 of my colon! Hello - that is a lot. Today was a really bad day, I felt really nauseous and yucky. My wonderful nurse gave me some fantastic nausea medicine through my IV and I feel much better now. I finally was able to eat something sort of resembling a meal. I had veggie broth, part of a small baked potato, chocolate pudding, and juice. It was like a small little miracle for me.
Well, the plan is to be released from the hospital sometime tomorrow, but it really does depend on how I feel.
I will let you all know when I know - good or bad. Let's just pray that it is good news :)

My Big Fat Abdominal Tumor!

Life is crazy. For about a week my stomach was a little painful - not too bad. I also was wondering why my belly was still so fat [I was pretty sure it was my lack of crunches or bad genetics (my dad always had a cute pot belly)] I wanted to go the doctor, but I was afraid he would just tell me I was a hypochondriac and should just exercise more. Finally, on Wednesday the pain increased enough where I was having a hard time picking Berkeley up and down and walking (again not that unusual for me considering all my arthritic pains), but it was different this time. I thought maybe I had appendicitis. So I called my sister-in-law Anne Marie who is the nurse for my primary care and she had just had a cancellation. So I immediately went in. The doctor examined me and said if he didn't know better he would say that I was pregnant. My belly was really distended. He called my Ob-GYN and he told me to come over immediately for an ultrasound. So as I watched my worried Dr. give me an ultrasound I could tell something was wrong by the look on his face. He told me that I had a huge tumor that was taking up the entire right side of my abdomen. WHAT!!!! I was in shock. He told me to get Corey down there right away. So I called Corey and cried a little and then we talked with the doctor. He called his mentor that he had trained under that was a gynecological oncologist in Portland. He was going to see me in the morning (Thursday 8/7) and they were trying to schedule surgery for Friday morning. It all happened so fast. My doctor was amazed. I had just had a c-section 3 months ago and there was NOTHING at that time. So my doctor sent me down to the hospital for a CT Scan and blood work. The CT scan showed a 21 cm x 18 cm tumor.
So here it is Thursday and I am at the oncologist. They think the tumor is my right ovary or my uterus. Surgery is scheduled for 9 AM the next day and I have to decide if I am going to have a complete hysterectomy. Yikes - things still do not seem real. But, I am not freaking out. I had a fantastic blessing Thursday night and I had said at least a million prayers - seriously.
So My kids are with their grandma at their Aunt Kimmy, Kimmy, Kimmy's house (yes three times according to the queen Carlie) and Corey and I stay at a hotel close to the hospital.
So Friday - surgery day. The surgery is supposed to be a 2 1/2 hour surgery. I pretty much remember nothing about that day. I was very DRUGGED.
But, here is what I know. The tumor was the size of a small watermelon (yes a watermelon). It was attached to my colon and small intestine not my ovary. They had to remove part of the right side of my colon and small intestine and appendix (it was wrapped all the way around my tumor). They also had to reattach the small intestine to the colon. The tumor was a solid mass. The pathology report will not be back until Monday or Tuesday to find out if it is benign or cancerous.
Due to the nature of my surgery I was not allowed to eat or drink anything for 3 - 5 days. But, because I am recovering quickly I was allowed to start having clear liquids today. My incision is huge and nasty. It goes from my pubic bone up to my belly button with some very attractive staples.
All I have to say is thank goodness I went to the doctor, for modern medicine, and for morphine.
I will blog some more when I know more. Hopefully this post makes sense - I am high drugged at the moment.

White Water Rafting

Well, on July 19th Corey (my hubby), Matt (bro-in-law) & his wife Kelsey, Anne Marie (sis-in-law), & Michelle (my sister) & her husband Ed - oh and ME too went river rafting on the Deschutes River in Oregon. Corey was our guide. We had so much fun. We went early to beat the river traffic and I must say that is the way to do it. There are lots of rapids, but these pictures are from the major class 3/4 rapids along the way.
Where did Michelle go?? Her and Anne Marie were in the front and got most of
the water action and man was it cold.
OOPS - there goes Corey (he was the only one who fell out the whole trip)
There is me ( in the yellow life jacket in the back)discovering that we lost Corey!
Look at Shelly go!
Where did the raft go?

Berkeley's Super Awesome Room!

Berkeley's room is finally finished. I think it turned out fantastic and wanted to show it off. Thanks to all who helped me especially my mom who made the bedding and curtains, gathered many monkeys, and helped me decorate & finish painting. My sister who gathered more monkeys. And my young women who helped me start this massive painting project (they stripped wallpaper and painted the base coat). The stripes took me forever, but they were not as bad as Carlie's polka dots. Everytime I walk in his room I am so happy.