Sunday, May 25, 2008

Abundant Life

We are at the beach this weekend with lots of families celebrating our friend Bekka's 16th birthday. I got up early this morning and walked on the beach at low tide. I was amazed by the abundance of life. The rocks were alive with sea stars, urchins, anemoenes, mussels, giant barnacles, kelp and other sea flora. I haven't seen such rich abundance at this beach before, the rocks are completely carpeted, it's beautiful!

At a time in my life where people are constantly talking about global warming, the depletion of the earth's resources, impending lack of finances, and the constant wondering in the back of my mind about Aspen's health it was wonderful and reassuring to see such abundant life!!

Thursday, May 22, 2008

What's Old Is New Again

The old news is once again new news...there is really a tumor on her pancreas, and it's just sitting there smiling back at us.

We visited the pediatric gastroenterologist yesterday (the guy who thought it might be cancer who referred us to the surgeon in the first place). So, he said he doesn't think it's cancer (yay!!) and that he has only seen one case of tumor turned cancer in a child in his entire 30 year career...and he sees all the horrible stuff in the state and maintains the national pancreatic tumor record (did you even know that existed?). It's extremely, extremely rare. But, since we don't really know what it is or isn't right now....

We had more blood work! We still don't have results from the blood work 3 weeks ago (for Cystic Fibrosis and auto immune things). They did another MRI and they saw the tumor. It hasn't changed a bigger, no smaller. Why they didn't see it on the endoscopic ultrasound we may never know. So the plan now is to wait and watch. She is supposed to eat a more normal diet for the next 3 months...I hate to undo all the good habits and great tastes she has developed...but we need to see if the tumor is going to do anything under normal circumstances. After all she might grow up to raise cattle or be a restaurant critic or something, it's hard to say! We will go for another MRI in August, and will go in immediately if she experiences and pain, diarrhea, rashes, etc, etc

And so the grand experiment begins! It is going to make the summer so much easier in so many ways I count it as a blessing. We are going off to Girl Scout camp in June and I wasn't really sure what they would feed her if we asked for a fat free vegan diet...carrot & celery sticks? It will make camping trips much more pleasant as one will be eating smores in front of her!

I asked for prayer for perseverance on Sunday, little did I know how much I would need it! I guess this goes on for months and months now...I really thought we were going to wrap this up in a nice neat little package and be done with it, guess not.

I picked up a book today called "The Beginner's Guide to Saving The Universe" and it had the author's top 10 list of necessities in life. The number 10 thing was "Persistence. Joy. Persistence. Joy. Persistence. Joy. Persistence." I think I'd like to meet her on a train some day.

May Crazies

I've been extremely neglectful of my blog due to wacky hormones and the crazy May schedule. It is my fondest desire that every club, sport and activity not hold an "end of the year" party, recital, potluck, gathering, open house, etc, etc. May is the most insane month there ever was! Complicate that with birthdays, Mother's Day, doctor appointments, end of the year testing for the girls and Memorial Day and it is really just one enormous marathon where we run from festivity to festivity on an almost daily basis.

So here is how things have been shaking out....

We celebrated Mother's Day at the mongolian grill because Aspen can eat there and it is relatively quiet compared to all the brunch places. It was fun, here's a picture (Ken's mom and family had already left so they aren't pictured, but here's part of the crowd) Left to right: William, Ken, Sherrie, Pop-pop, Mom, Aspen, Mike, Cierra, Me and's the silly photo, they always turn out better than the serious photo!

Following Mother's Day I began mad planning for a surprise birthday party for Cierra. We told her we would have a party in June since Aspen was having surgery...but instead we surprised her on Friday with party at the putt-putt golf course. I'll post photos when I get them from Mom, we used her camera that day. It was hot, hot, hot and we had to make an emergency run for squirt guns as a matter of survival, but everyone had a great time!

Mixed in with all that we had the girls annual testing so the state can be sure we are homeschooling and not just having a great time (is there a difference really?)...I think it's silly. I had a doctor's appointment with the last honest doctor...he refunded my copay and told the receptionist not to bill my insurance after I spent 20 minutes in his office because he wants to refer me to someone else. Can you believe it, I've never gotten money back from a doctor even when I should have gotten a refund!! My hormone therapy is making me crazier than I normally am. Cierra is getting ready for her first Feis (pronounced fesh), it's an Irish Dance competition. We are preparing for a few more birthdays, finals week, Ken's graduation and Father's Day and then maybe we will collapse in a heap somewhere.

Here's the invite for Ken's Graduation...let us know if you'd like to attend so we can reserve seats for you. I know it's early, it's Sunday and it's Father's Day so we totally get it if nobody comes!!

Friday, May 9, 2008

Cool Shoes

We've had some busy days...Ken's Uncle Bob is in town from New Jersey. He's making the west coast tour and seeing all the family. He brought us citrus off of Grandma's tree in California. It's so much better than grocery store fruit! Thanks Grandma!!

Tonight and tomorrow is Cool Shoes, the girl's folk dance concert. It's in conjunction with a college dance troop that does a lot of swing and lindy-hop so it's lots of fun. It is at 7:30 pm tonight and 2:30 pm on Saturday. Tickets are $9 at the door. In the Corvallis High School theater.

Just in case you can't make it, here is a picture of them in their costumes:

Aspen says she is feeling better....hmmm. Maybe we have cured her with a vegan diet. Grandpa Ken and Grandma Syble were at the doctor's office the other day discussing something all together different and the doctor told them we could cure a lot of what we have in this country by eating a vegan diet. Who knows!!

Thanks to Robyn, Eroica, Connie, Stephanie, and Lauri who have showered us with pants!! I asked to borrow some smaller size pants for Aspen since she has shrunk two sizes since the beginning of all this hullabaloo, and we are buried in pants...thank you so much!! They all fit, most are too short, so it's nice to have a selection. I think she will start beefing up as we add more fats to her diet, so we won't need them for long, but everything in her closet is falling off of her right now and we got rid of the little sizes in January.

Tuesday, May 6, 2008

Still On the Roller Coaster!

The surgeon called yesterday evening and we have a concensus, at least between him and the female doctor. They think it is most likely an autoimmune disorder. So, no surgery, no blood least not for the time being. I asked him how he could suddenly think there was nothing there based on one test...he said he's not a radiologist, that when he meets with the radiologist and the radiologist says, "This is a tumor", he just says okay and takes it out. He said he thought all the lumps looked like just more pancreatic tissue, but the radiologist said it was a tumor. At least he's honest!!

So we go for another MRI, and more blood work soon...we are waiting on the appointment clerk to call. They have to be sure!

So, depending on the kind of autoimmune disease we are looking at, it could be very, very good news...most of them are treatable, she would probably need to be a vegan for the rest of her life, but she could start having nuts and seeds and some oils and tofu. Her life expectancy would be around 60, instead of in her teens to 20s and she won't have the world's largest scar on her stomach to prove how cool she is.

We go see the doctor who thinks it is cancer on the 21st. The most recent blood work should be back by then and we'll see if we can get a third person on board!!

I am at the point where I'm having trouble letting myself believe it. Every time I think things are great, they get really terrible again in a couple of days, then they go back to being good again, and so on, and so on.

Glad there are still some people on the roller coaster with us!! It's been a wild ride, more like Space Mountain...roller coaster in the dark where you can't see the end.

Sunday, May 4, 2008

Friday's Pics

Here are a few photos from Friday, beginning with "It's not Disneyland, but it's more fun than an endoscopy"...the tram coming into the station on top of the hill. Every time we go we try to take a picture of the tram going the opposite direction as it passes us, but it never comes out. Sounds like we might have a few more opportunities to try to capture that one!
The cousins came and sat patiently in the waiting room...why are the people waiting patient, but we call the people being treated patients? This is Elizabeth, Rebecca & Aspen riding the tram.

This is your brain, this is your brain on the Disney was good to have her video anesthetized while they put in her IV!

Saturday, May 3, 2008

Ken Passed with Flying Colors

I didn't get the details until late last night...he works nights and came home for lunch (which is in the wee hours of the morning). His team presented for about an hour and the board asked a lot of questions. Then they went in individually and the board questioned them further. He went first, so he was the guinea pig for at least one question that was modified for his peers later. But he did wonderfully!! I think his time before military boards really helped him prepare for this. It might have been easier than the military boards actually...he didn't have to stand at attention in a hot, scratchy uniform and recite obscure military history and exactly how far each kind of munition is capable of firing!

So now he just has a couple more case studies to write up and two finals to survive and he's done!! we're done, it's all over!! I think we will potluck in June...stay tuned for more details.

Friday, May 2, 2008

Three Blind People and An Elephant

Do you know the story of the three blind people and the elephant? One is touching the elephant's legs and thinks the elephant must look like a tree with a strong trunk. Another is touching the elephant's trunk and thinks the elephant must be long and slender like a snake. The third is touching the elephant's tail and thinks the elephant must be thin and hairy. Such radical differences, and all the same animal.

Well, little elephant Aspen had an endoscopic ultrasound by the doctor who believes there is nothing there today, and sure enough, she found nothing tumor at all! Her pancreas is enlarged and lumpy she says, she thinks it's a form of Cystic Fibrosis or an autoimmune disease and drew blood to test for those.

Doctor number two says cancer. And the doctor who is the surgeon of course wants to remove what he thinks is a benign tumor. And I am beginning to think Aspen doesn't have a pancreas at all, there is a crystal ball in there and people look in and see what they want to see!! It will be two months of guessing as of May 5th!

So, the blood work won't be back for two weeks on this one, we don't know if we will go ahead with surgery or not at this point...but how do you explain the tumor marker on her last blood work if there is nothing there?!! I'm good with nothing, really good with nothing...but we need to redo some blood work to be sure at least. It would be better to think it's something and operate and have it be nothing, than to think it's nothing and have it grow into something horrible because we thought it was nothing. Are you as confused as I am yet?

We need to go ahead and give blood this week just in case we go ahead with surgery. If she doesn't have the surgery we might need it anyway (I had to sign a release for her to get blood today in case they ruptured her stomach or intestines), or we just bless some other folks with blood, which is good too.

The female doctor who did her test today didn't do a biopsy because you can only needle biopsy a tumor, not the actual pancreas itself. So if we want a biopsy of the pancreas it has to be a surgical procedure where they take a slice of cells...unless there really is a tumor and we need a needle biopsy.

So now you know I am freaking out...Aunt Hillary says this is more my trial than Aspen's, she could be right, Aspen is a trooper. She did great getting her IV and blood draws today, maybe it was because the Disney Channel was playing in her room and she was in the Kim Possible zone. Either way, it was good. She chatted with the anesthesiologists and nurses and did really well with the whole thing. Afterward, she woke up, drank a bunch of apple juice, got dressed and walked right out...they wanted to wheel her to the door in a wheel chair, but she was already walking around. So the nurse walked us to the door and we went to Starbucks with a playground (better invention than sliced bread for sure) and rode the tram down the hill with the cousins, Rebecca & Elizabeth!!

Thursday, May 1, 2008

Big Day Number One!

Tomorrow is our first big day...Ken does his final thesis defense between 8:30am and noon. The term will be much easier once that is over. He is responsible for applying all the knowledge in all the classes he has taken over the last 2 years to his business plan. He has the leaning tower of Pisa of books that he is cramming from and a couple packs of index cards all filled out and he's just a little stressed out.

And to your right in ring number two...Aspen's biopsy will be happening at noon. We go up early and get admitted and prepped and then off to the biopsy. We will hopefully know immediately what they saw since it's a doctor doing it, and not a technician, she can talk to us afterwards. But so far what they have seen hasn't been particularly conclusive. So we will wait for the pathology on the sample they take...I don't have any idea how long that will take, and if they tell me it will take 2 days I'll count on a week minimum.

Today was spent on the phone...the entire day! We got the biopsy schedule, the directions to that building, the directions for what not to eat, talked to nurse Nancy about surgery and needing blood, talked to the Red Cross about getting donors, talked to a few potential donors, talked to the parking people at the hospital about long term parking, talked to parents and sisters and friends, and I just got off of my last call. It's after 10, I think I'm done.

So, the new news is that we need blood (between 2 and 4 pints, depending on the size of the surgery) and can donate our own so I am attempting to coordinate that. We find out Aspen's blood type and any RH issues tomorrow. Then we fax that info to the Red Cross and they call us and set up times. Blood has to be donated between Monday and Wednesday of next week in order to be processed in time for her surgery. Please consider giving blood with us, it will make it more fun, it's desperately needed and it's a cool thing to do. We will be giving in Portland and Corvallis... I will put dates and times out as soon as I have them!

Secret Helpers

You may have noticed the new link above Aspen's picture on the blog. Robyn has set up a secret helper blog called JoinAspensJourney. I am not allowed to go there, I am not allowed to ask anyone who goes there about it, I am not allowed to talk to anyone about it who talks to me about...and neither is anyone else in our family. She wants people to be able to help or give anonymously if they would like. She is orchestrating all kinds of things...she calls or emails and asks cryptic questions every now and then. So if you want to be a secret helper go there, and don't tell me about it or I'll have to answer to Robyn...she may be under 5 feet tall, but she's a formidable force.