Friday, October 24, 2008

Busy Days

Cierra is competing in a Feis on Sunday at the Red Lion at the Quay in Vancouver, WA at 9:30am...all are welcome to come see her dance!! On Monday she has the opportunity to be "graded" on some of her dances...there are judges here from all over the world for the competition, so they will grade dancers while they are here. She will go for her first 3 grades. If she passes all 12 grades she will have earned an Associates Degree of Dance!

Aspen started a pottery class this week and is absolutely in love with building things out of clay...there wasn't much doubt that she would. She built a castle. If you haven't heard about it she would love to tell you all about it...she has told us all about it multiple times...someone else, please ask her about her castle!

Aspen will have another MRI the first of December...we are working on scheduling that. Orders aren't in the computer, then the orders are in but the computer is down, etc, etc. We'll get it on the books eventually!

I accepted a job with the inpatient pharmacy at Good Sam here in town. I am waiting for my license to arrive in the mail before I can start...you can't legally enter a pharmacy to work without a license in this state. I hope it's a nice position with professional people.

Well, that's just a taste of what's keeping us busy...the usual is still happening too...school, lots of family, church, Folk Dance, friends, and we are starting the wonderful Fall holiday season. I love the season of settling in for the winter.

Thursday, October 9, 2008

20th Anniversary

I thought I should post an update, but I'm not sure what to say. One day I am elated that I only have myself and the girls to worry about, and the next I am so angry I could spit.

Saturday was our 20th Anniversary, not much of an anniversary. It was a horrible, sad day that broke my heart multiple times. I still cry thinking about it.

I am job hunting. I am trying to convince myself it's for me, but it's not...it's really because we can't make ends meet living separately. Ken has always said he would take care of us financially, but if he gets a part time job he won't be able to see the girls. Part of me says that's the price you pay for up and leaving, the other part says it's not fair for the girls. Either way I will walk into work and be sad every day because I have to be there because of this.

We saw a counselor on Tuesday...he's really good, but all I could think about was, "It's a dollar a minute, can't you talk faster?!!" I guess we can't not afford it right now. Ken did agree to try to work on things...so his heart has changed a little.

The girls are doing really well...we actually do stuff together with them. We just don't talk to each other about anything serious, so the girls think it's all good. We've gone for bike rides and bowling and as long as we only talk about bike rides and bowling everything is fine.

Part of me always wants him to suddenly be nice and apologetic, and the other part can't trust him at all because he's broken every promise. It's a frustrating stuck place to be...just waiting...I think I've said that before. Nothing like rounding out a year of waiting with a little more waiting...waiting for Ken to make decisions, waiting for the hurt to go away, waiting to see what happens.

Saturday, September 27, 2008

Tribute to Friends & Family


It is so far a wonderful weekend, my sisters, parents, Ken's step mom and lots and lots of church family have rallied around us whether in prayer, coming to visit to keep care over us, just calling to check in, offering any kind of support and so much more. We feel very loved and cared for and I know people are praying...thank you so much!

I wanted to post a little tribute to my Uncle Bill today...he called me Eli, was always making funnies, canned the best Tuna (that he caught) that you ever tasted, helped me to appreciate the ocean and sunsets as a child and I always remember him having a curl in the middle of his forehead and wearing a bow tie every day...he was dapper!

Here is the official obituary: William A. “Bill” Cook of Coquille died September 24 in Coos Bay of age-related causes at the age of 93. At his request, no service will be held.

Cook was born December 1, 1914 on a homestead in Silver Lake, Oregon to Frances E. and Olive Whitney Cook. He married Ora Dell Reed on June 9th, 1940 in Clatskanie, OR. She predeceased him in February 2005.

He attended public schools in Bend, Southern Oregon Normal School in Ashland, and graduated from the University of Oregon.

He served as a pilot in the Army Air Corps and flew the China Burma India “Hump” during World War II. Cook taught school in Junction City in 1941 before becoming a flight instructor in Fort Stockton, Texas; Wickenburg, Arizona; and Eugene, OR. He later managed radio station KWRO in Coquille, KCOY in Santa Maria, CA., and KOOS in Coos Bay, Oregon. From 1958 until his retirement in 1981 he was the general manager of Coos-Curry Electric Cooperative serving the southern Oregon coast. During his life he was active in the Chamber of Commerce, Elks, Lions, and United Good Way.

During his retirement, Cook enjoyed ocean fishing, crabbing, gardening, current events and spending time with his family.

Friday, September 26, 2008

Better News

Well, in better news, the girls will be folk dancing at the Fall Festival at 3pm on Saturday. The dancing is next to the Art Center. They have a booth in the Kid's Tent (across from the Art Center) where they are selling things they have made this summer to help them go on a trip to Savannah, GA to learn about our country's history, Girl Scout history and their personal history since we lived in Georgia for so long.

Stop by and say HI to make their time pass more quickly...it will be hard for them to sit in a booth for 7 hours a day two days in a row!

Thursday, September 25, 2008

9-24

We'll all be talking about 9-11 for years to come, but really for us it will be 9-24. Yesterday was a doozie....

My washer died.
My Uncle Bill died.
Ken left.

I'll be needing a job...maybe I can write Country & Western songs...good thing we don't have a dog, it might have died too!

I am mostly feeling abandoned, sad, not good enough, and ashamed. This isn't how my life was supposed to turn out...ok, so throw indignant in there too. I figure if I just throw this out there for the whole world to know then maybe I can avoid some of those awkward invitations for the two of us, questions about his job hunt, etc.

In the mean time life goes on...the girls are doing school in preparation for what they want to be when they grow up. Now I wonder what I will be when I grow up.

Sunday, September 21, 2008

Decisions, decisions....

Well, I have been putting off posting...mostly because we have had some big decisions to make. It didn't become clear until I spent today at church talking with people who have been praying like crazy for Aspen. They just have such objective opinions...it's nice to get those from folks who aren't emotionally involved in the situation.

So the biopsy came back with ALL NORMAL TISSUE!!!! Hurray!!!! That rules out a huge gamut of horrible things....cancer, cysts of all flavors, necrosis, etc, etc. We actually have two doctors who agree for a change...they think she had an acute case of pancreatitis and that the shrinking of her pancreas is the pancreas just returning to normal size. They now agree that there is NO TUMOR, that the head of the pancreas is very enlarged (still) and that is what we are seeing on the MRIs. But they don't agree on why....

The one thing the biopsy doesn't rule out is Cystic Fibrosis. We have one doctor who says it's definitely what she has and to not get tested for it.. because you will know she has it when it goes full blown if (it ever does...such compassion!). We have anther doctor who says she doesn't have it. And we have a third doctor who says she should be tested and to get ready for a bizarre litany of genetic tests...apparently if it is what she has it could be a mutation of her DNA in just the pancreas, that her DNA could be different in her pancreas than anywhere else in her body (so her pancreas could rob a bank and we wouldn't be able to trace it back to the rest of her...hope it doesn't go on a crime spree).

So in light of the fact that she seems fine right now, that we will be getting an MRI every 3 months for a long time anyway, that if she gets the tests and they are positive that she may not be eligible for insurance as an adult, that if she has CF she may have fertility issues as an adult and they wouldn't be covered, the fact that the savings account is empty, the fact that the bills are still rolling in and genetic testing is barely covered by insurance (we just got April's bills from the Children's Hospital...they're a little behind, but it has allowed us to pay things gradually which is a blessing), that she could get hit by a bus tomorrow (do I really need to know her life expectancy?), that Aspen is done being poked and prodded (she didn't get any immunizations this fall because she didn't think she could follow through on the series for Hep A and HPV), and as Pam says...humanity won't make it until Aspen is 70 the way the world is going. So, in short, we aren't going to get her tested.

I know there are going to be a lot of people who might disagree (like all the grandmas and aunties out there)...that think we need to know. That want to know for themselves. But please know we have agonized over this and sometimes the right choice is the hard choice...it's hard to not know, to think that we could get a ferociously unpleasant surprise at any time...but couldn't we anyway? And at some point we have to get on with life, quit wallowing in this mess and just keep living like today might be the last day or hour or minute, because it might be for any of us!

Wednesday, September 10, 2008

Chance Meeting

I recently took up rug hooking...not latch-hook from the 70's...rug hooking where it is a smooth carpet of loops on top. It's what you could call an early American art. Anyway, since I don't have clue what I am doing, I have been meeting with a group a couple nights a month and I get feedback and get to see what "real" rug hookers do. They have some really beautiful things they are working on!

By chance I sat next to a lady last night who has a daughter with a paralyzed stomach...so we visited about gastroenterologists, and how long it takes to get a diagnosis, and eating food in foreign countries. Which led to a conversation about Cystic Fibrosis. I always thought people who had Cystic Fibrosis died before the age of 30 of solidified internal organs. She said there are many more people in the world with Cystic Fibrosis than know it. She has a friend who is 55 and just figured out that her life-long battle with asthma is a very mild form of Cystic Fibrosis. It was a very helpful and hopeful chance meeting...55 is a ripe old age for having a terminal disease.

It's amazing, you never know who will cross your path and what they will bring to your life!

Monday, September 8, 2008

Waiting, waiting, waiting

Well, it was a big day of waiting...we waited at the children's hospital and then they sent us to the adult gastroenterology clinic, four buildings away, and we waited there. Then we found out there was a mistake and we went back to the children's hospital and waited there. Then they finally took us back and we got her all prepped and we waited. Only to roll her all the way back through 4 buildings to the adult clinic for the procedure, where we waited. Then we went back to the children's hospital for recovery, where we waited. And now we are waiting for results. All together we waited from about 8:15 am until 3:30 pm...that is a lot of waiting!

So in between waiting they did the scope and the biopsy. And this doctor has yet another opinion...he thinks she has Cystic Fibrosis (never mind that it doesn't run in the family, that we know of, and she has no other symptoms); and that gave her pancreatitis. He said he didn't see a tumor but the front of her pancreas looks swollen and he thinks that is what they are seeing on the MRIs. He thinks the atrophy is just the pancreas shrinking back to it's normal size after being swollen from the pancreatitis.

It sounds like partially good news, but I've heard all kinds of crazy news and I don't really trust it anymore. All this thinking is making me nuts! I really don't care what they "think" it is anymore...pink bunnies, purple hippos, big tumor...it's all the same. I want to "know" what it is. He did get some cells from it. So will it be just pancreas cells, abnormal pancreas cells, tumor cells, cancer cells, cyst cells...we'll just wait some more and see. It will be good to at least know what it is, or isn't.

He did say we could get the genetic testing done for the Cystic Fibrosis (the doctor who saw nothing didn't do it like she said she would because it has to be preauthorized by insurance...no wonder we could never get those test results!) But this doctor said Cystic Fibrosis has no cure, so why bother because it's really expensive...we'll know if she has it if she starts having heart and lung problems. Nice. It occurs to me that she might like to know if she's a carrier before she has children, donates genetic material, little things like that. I guess the results of the biopsy will motivate us one way or the other...her pancreas should have fibrous tissue in it if she has Cystic Fibrosis bad enough to give her pancreatitis I would think. (There I go thinking now!)

It should be about 5 working days before we get the results. So, will it be diagnosis number one (big scary tumor let's remove it), number two (strange tumor never seen before that may be somehow making her pancreas atrophy), number three (nothing), or number four (Cystic Fibrosis that created pancreatitis)...we will just have to wait and see.

Saturday, September 6, 2008

Preparation H

Preparation for the Hospital, that is. We found out several days ago (something happened to my last post it just evaporated into cyber space and didn't actually post) that Aspen is having her biopsy Monday morning at 9am. They were apologetic for taking so long to call us...I didn't think it took too terribly long, they are just so nice!

Well, the one and only complaint we ever hear about the children's hospital is that they do a test and it comes out positive and they whisk your child away to surgery, or chemo, or whatever and you aren't prepared and don't know what's going on. So...we went ahead and had a sleep over party with a few friends for Aspen's birthday Thursday night(hurray, we homeschool and so do most of her friends so we can do crazy stuff on crazy nights of the week!). It would be terrible to have to get treated for the outcome and not get to have your party, it was already two weeks late. (check that off the list)

We have already done the research and know the risks associated with almost any potential outcomes (check that off the list). We are packing overnight bags just in case (check that off the list). And we have restocked the bag of interesting things to do while waiting hours and hours and hours...we were told it was 5 hours from the time they start, not to mention the 2 hours of prep and interviews with doctors, anesthesiologists (they put her clear out), nurses, etc.

Now that we have all our bases covered Murphy's Law dictates that it will be a short, simple procedure with no complications and no overnight stay...right? I always prepare for the worst and expect the best.

She will be in the children's area this time...last time she had the ultrasound she was in the adult area. It was a little weird to be around a bunch of really sick people for her; even though she got a private room the walls were glass and she was wheeled past other people who were hacking and had tubes coming out all over. I hope it's not scarier to see really sick kids. So far it's been ok when a child is so sick or disabled they come in all strapped down and tubed up by medical transport, I think she just feels sad for them and not creeped out. It's certainly humbling...I am scared to death for her, but she is by far the healthiest kid there every time, we are so blessed.

Sunday, August 31, 2008

Thankful For Summer Fun

It has been a fabulous summer, not worrying about what to eat, enjoying a "normal" life. We managed to totally ignore Aspen's illness for three full months! (And it was even doctor's orders) It was restful and we are thankful. So here's our summer in photos...if you've been wondering where we've been and what we've been doing...

It all started with a flurry of activities...Great Grandma R. had surgery (I won't post her picture, she'll probably appreciate that), Ken graduated, Paul had a fun birthday at Bullwinkles...then we went off to Girl Scout camp! Nora, Aspen, Steffi & Cierra outside our yurt at camp.


We went camping as a family at Cascadia. It's a beautiful spot that means a lot to us because the girls were baptized in the river there.



We had lots of visitors this summer...Great Grandma S. came up from California with Aunt Carole, and cousins Suzanne and Bruce visited from SO California. The dad's took the girls on a backpacking trip into the Opal Creek Wilderness and they checkout out some old mines. L to R: Cierra, Hannah, Gretta, Aspen & Sarah








Aspen has taken up photography quite seriously this summer and gets some poignant & well composed photos.



Cierra competed in a Feis in Seattle...here she is all ready to dance. She took a second place medal there and then we stayed with Uncle Danny & Aunt Hillary for a few days. We saw Uncle Dave and his tribe while we were there, as well as Great Aunt & Uncle, Lou and Murray.



All summer the girls have been working on their Girl Scout Bronze Award ...the highest award Junior Girl Scouts can earn. They are collecting donations of items to go in Hope Kits
...toothbrushes, soap, combs, brushes, toothpaste, washcloths, chewing gum and gallon size zip lock bags...to help families with basic needs throughout the world in conjunction with Medical Teams International. They have put together almost 50 so far. Photo by Aspen of a home in a garbage dump in Mexico simulated at MTI.






















We spent a week at Dorena Lake with Aunt Sherrie, Uncle Mike, Aunt Stephanie, Uncle Blake, Grandma T., and Pop-pop where there was much skiing, tubing, boarding, fishing, reading, crossword puzzling, swimming and rescuing things from the lake...like Jake, the Fake Snake in the Lake. Aspen fished, but didn't want to touch her catch that Uncle Mike put back in the lake.
























































The girls attended Extreme Vacation...Vacation Bible School for Junior High kids. And I helped out at VBS. Then we went up to OHSU and Aspen got the perfect pic of the tram going in the opposite direction. It is a beautiful view from up there. And we met my father, Nathan and his wife, Diane for dinner.





The Girl Scouts also went together on a week long trip to Bend where they made it to the end of the lava tubes among other things.

Friday, August 29, 2008

"Normal" Vegans Sometimes Cry In Their Noodles

Today was a big step towards change...went on the vegan shopping trip, tried to get things Aspen loves: split peas, pita pockets for sandwiches, lots of peaches, tiny rice noodles, chocolate soy milk. She had a melt down yesterday afternoon because she thought she was going to have to have a vegan cake for her birthday party. All her friends love it, but she wants something "normal". It was the first time I heard her speak without hope, she said, "I want to have a normal cake because it might be my last birthday." I waited until Ken was up and around to have a meltdown myself. I think I just needed a good cry. We also got word that my great uncle has cancer and is dying. I could use a few dull moments in life right now.

I called the doctor yesterday afternoon to ask more questions. For some reason I didn't just have them all on the tip of my tongue while standing on the side of the highway with a flat tire, four children, roaring traffic and the shock of the news he was delivering. Hope I don't get the chance to work on that skill again! I would like to know to what degree her pancreas has atrophied, if it is consistent with anything he has seen before, if he is sharing her chart with colleagues at other hospitals/universities looking for answers and I will probably have more questions after I read the research from our family friend Mary who got right on the new development...thank you!! The nurse called today to say I won't hear from the doctor until Tuesday due to his schedule and the long weekend. That gives me time to get all my questions together...email questions if you've got them, you may have thought of something I haven't!

The girls are over at a friend's house playing and Ken is at work so after I finished grocery shopping I thought I would treat myself to a noodle bowl at a Vietnamese restaurant by the grocery store. God put a good friend in my path...literally! She walked out of a shop right onto the sidewalk in front of me and she just happened to be headed for Vietnamese by herself too! So I had a wonderful evening catching up, and didn't have to eat alone because I was a little worried about crying in my noodles in public.

Thursday, August 28, 2008

A Flat Tire & A Flat Pancreas

So we were on our way up into the wild blue yonder...actually we were just a ways outside of Sisters when our tire blew out...not just a little hole...but this huge gaping hole! Well the girls had just gone through a car care badge so we got out the spare, leaned it on the back of the truck as a sign to passing motorists that perhaps the two women and four girls on the side of the road could use a little help. We tried to get the tools out, but the latch on the door was broken...too much wood hauled in the back of the Suburban, never opened before and it rusted after all these years, I don't really know why (the manual didn't show a blow up of the latch). So we tried to flag down another Suburban...aparently having a spare tire and lots of children on the side of the road and waving both arms in the air means, "Please honk and wave". We got lots of honks and waves and smiles to bolster our mood while we tried, but alas, help did not arrive and we had to call Les Schwab to come change the tire. So while we were waiting the phone rang...

It was Aspen's doctor; not the nurse, bad sign. The tumor is exactly the same size, no bigger, no smaller, but her pancreas has started to atrophy. I don't know how withered it is, or how much smaller it is, but her records are being reviewed by a new gastroenterologist who will do a biopsy. She will be put to sleep and they will go down her throat and run a needle through the side of her stomach into the tumor and aspirate some cells. It's kind of low risk (you never really want a hole in your stomach though). It will probably be mid to late September.

I had so much hope that the tumor was gone. I was sure it was our last visit because every time we go we ride the tram and every time Aspen tries to take a picture of the tram car moving in the opposite direction as it passes our tram car. Every time it has been blurry or just part of the car...but this time she got a great picture...mission accomplished!

Thursday, August 21, 2008

Off Into the Wild Blue Yonder

We leave in the morning for a wonderful week in Eastern Oregon under (hopefully) beautiful blue skies. It is a Girl Scout camping trip with our little troop, I know the girls will have tons of fun...swimming, hiking, basketball, mini golf, volleyball, canoing, kayaking, shopping, museums, ice cream, roasting s'mores and hot dogs, and even more exciting...hot showers!

So now we just play rearrange the Suburban another time or two to squeeze everything in...girls are not light packers! You've just gotta do your nails in the woods, would it be a camping trip without nail polish?

Ken's idea of a camping trip is to bring as little stuff as possible and see if you can make it...it's tactical, it's MacGyver-ish. My idea of seeing if you can make it is to get in the car and drive to the closest discount store and see if you can afford all the stuff you forgot. Ken is staying home...Girls Only this time so we have to take everything but the kitchen sink!

We didn't hear from Aspen's doctor today, so maybe tomorrow...I don't know if there is phone service there or not but I am sure a message will be waiting when I come home otherwise. Once again God has provided an excellent distraction while we wait!!

Wednesday, August 20, 2008

Is Freud Overrated?

I was so distracted by all the thoughts racing through my head...will Ken have a job tomorrow, will Aspen be all right, will I get along with Nathan...that when we went to leave today I almost drove off without Aspen! Her foot was in the car but the door wasn't closed and I started to pull down the driveway and she was yelling "MOM"...so Ken drove to Portland. Did I subconsciously want to leave her behind to protect her? No, I think I was just way too anxious about the day.

I fidgeted and stretched and did all the little nervous things...tapped my fingers, bounced my legs, ran my fingers through my hair a thousand times, tried to sing the songs on the radio...all the while driving the people around me crazy. We got to the hospital and I suddenly had purpose in my life again for about 10 minutes, but quickly found out they were running WAY behind on the MRIs so we waited over two hours...trying to read, trying to sleep, trying to start a conversation that my mind wasn't on, get up, go to the bathroom and start all over...trying to read, trying to visit, etc, etc.

When we finally got called in they got the IV started almost painlessly and the MRI technician was the best we have ever had so that went really smoothly. All the waiting meant we were also an hour and 15 minutes late for our doctors appointment, but they had called ahead to let them know. We got up to the doctors and the receptionist was just waiting on us to arrive so she could go home, followed by the nurse who checks people in, and the doctor had no other patients other than us so we got right in! Have I mentioned how ridiculously nice they are?

So the verdict is that it's amazing that she has been symptom free all summer despite eating junk for 3 months straight. He believes that if it was anything horrible that she wouldn't be feeling this well. We got the results from the auto-immune disorder blood tests and they are all negative. We are waiting for the MRI results...please be nothing there, please be nothing there...and he opted for no blood work unless he sees the tumor. So, another opportunity for a miracle is knocking on our door, how many opportunities does a person get? That's an interesting thing to consider, it sure seems like we have had a lot!

Dinner with my biological father was really nice. It was uncanny, we walked in the door of the restaurant and the maitre d' knew exactly who was waiting for us without us even saying a word. It seems I have married my father...never mind that I never knew him, he and Ken are twins with the exception of the nose and the age difference. And to think I think Freud is overrated! We got along great and had lots to talk about, it didn't seem awkward at all.

And to top off the evening...Ken still has a job!

What a day, what a day...we are blessed, but I'm in no hurry to have another day like this any time soon.

The Brink of Change...not a bad name for a soap opera

I was just reading my last post...it's been a wild summer since then, I will have to post a recap of all the things that have happened this summer sometime soon. Tomorrow is lining up to be a day of excitement and nervousness.

We are excited to hopefully put this tumor thing behind us and move on with life. We have a doctors appointment, blood work and an MRI tomorrow. They didn't see any tumor in her blood work last time...so after a summer of eating funnel cakes, cotton candy, corn dogs, fettuccine alfredo, hot dogs, elephant ears and every other junk food imaginable, all culminating in a turkey dinner tonight...we are hoping the results are still good and that the MRI shows no tumor. It's back to the vegan life either way though, and I think elephant ears are vegan despite the name.

Following all our fun at the children's hospital we are going to have actual fun... dinner with my real/biological dad, Nathan. I saw him once when I was 14 and before that when I was 3, he has been living in Germany most of my life. The girls have never met him so we are excited, and a little nervous. We will meet his wife Diane for the first time ever too.

Ken was supposed to get the whole day (he works 6pm to 6am so call it what you want) off work, but tomorrow is the day he may be finding out if he has a job or not. So after our day at the hospital and meeting new people Ken has to go in to work to find out his status. We are a little excited and a little nervous...it will be great either way.

So, we are on the brink of change and there is a whole lot riding on tomorrow...why can't it ride on yesterday...it will be hard to sleep tonight! I know God has a plan for all this craziness, not that I have the slightest clue what it might be...so if you are still checking this and still praying that is wonderful, thank you!!!

Tuesday, June 10, 2008

A Wild Wonderful Week

We have had a wild week (I haven't slept more than two nights in a row in any one place in a week!). As a result I am pretty sick, cold stuff. The girls seem to weather it fine and had a great time.

We went up to visit Ken's brother Lloyd's, of course to see the cousins and all, but also to escape the week before finals. It really helps Ken if he doesn't have to make the choice between studying and family, so he can just study. They had a big surprise planned for the girls...an overnight at Great Wolf Lodge. It's a big hotel with an indoor waterpark, a giant arcade, a teen room with movies and karaoke, a craft room, and a cool interactive game where you get a wand and run all over the hotel finding things like on a scavenger hunt. It was great fun and we ran up hundreds of stairs...to the water slides, from the first floor to the fifth floor playing the interactive game. I have never gotten so much exercise on vacation!

We came back to their house for a night and a half, we had to leave at 5:30 am to get to Portland for Cierra's first Feis (Irish Dance Competition) that took place on Saturday and Sunday. It was her first time dancing in front of a judge, but she did extremely well. She competed against girls who were more advanced than she was but she took 2nd place in her Reel, 1st place in her Light Jig, 3rd place in her Single Jig, and 1st place in her Two Hand Reel so she will be moving up a level and will learn harder dances. We are really proud of her hard work and she is thrilled to have done so well.

We talked to some extremely talented dancers in the practice room while we were there and asked how much they practiced. They have two, two-hour lessons per week and practice from one to two hours a week. Needless to say we aren't there yet!!

Aspen had a great time swimming in the pool...she's not really an Irish Dance fan. It's not the dancing so much as the music I believe, but she was a trooper and watched Cierra and her friends compete.

On Saturday after the competition ended for the day we went out to Ethiopian food. It was a great experience! No silverware!! You just tear off little pieces of a big flatish pancake and dig into the piles of food which are served on more pancakes. It was really delicious and has motivated me to look up recipes on the web to try and cook it at home...one of the spice mixes is called Alisha, so of course I love it!

No Tumor?

This is very late news and some have heard through the grapevine already that the blood test for a tumor indicator came back totally negative this time!! We are greatly relieved. They still see something on the MRI, but the blood work says it's not there.

We will still have another MRI and a repeat of the blood work in August to keep an eye on things.

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 bit...no 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 well...no 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 Stephanie...it'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 donation...at 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 Channel...it 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 there...no 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.

Wednesday, April 30, 2008

Here we go again....

Our doctor is truly baffled and befuddled...Aspen doesn't have any pain anymore, isn't jaundiced, isn't running a fever anymore, and all her pancreatic enzyme levels are normal. It's really not quite right he thinks...I think it's the power of prayer and the vegan diet.

He called this morning to say he had been reviewing Aspen's records and discussing them with another doctor and the second doctor doesn't think the tumor is benign. He believes we are suppressing the cancer with the vegan diet (i.e. not feeding the tumor animal protein because that's what they live on). So they called in yet another doctor, and doctor number three called and discussed things with me and says she doesn't believe there is a tumor there at all, that maybe it's just a little inflammation. They are all excited and think we are getting a great deal...three doctors for the price of one...I don't know about all that.

So we are having a procedure on Friday or Monday, we don't know which day yet, it just depends on when the pediatric anesthesiologist and the pediatric gastroenterologist are both available at the same time. They will put her to sleep and put a camera down into her stomach and small intestines first, the camera will be followed by an ultrasound and the ultrasound will be accompanied by a biopsy (they put the needle right through the wall of the stomach into the pancreas and suck out a few cells). Doctor number one thinks we are biopsying a benign tumor, doctor number two thinks it's cancer, and doctor number three doesn't think there is anything there at all. Pick a number, any number folks.

I've wanted a biopsy for a while, so I guess we will finally find out what it REALLY is...will the real diagnosis please stand up! Doctor number one also said that it was his intention to make the incision for her surgery as if he were going to do the Whipple procedure and it would be very large, across her whole stomach in the shape of a boomerang. If we know for sure it isn't cancerous then he can make a smaller incision and recovery will be easier as well. Aspen wanted him to cut a nice heart shape around her bellybutton.

The biopsy is a good thing, every time they try to figure it out again is another chance for a miracle. We might get our miracle yet!!

Tuesday, April 29, 2008

Hospital Cruise Vacation & Ways To Help

We went to the hospital today on a mission...to visit the ward and see if they have the essentials. We checked it all out...the play room with the really nice ladies who will play with you and give you all the art supplies you can handle; the parent's lounge complete with video library for kids, refrigerator, microwave and some tables & chairs; the PRIVATE rooms with DVD players, VCRs and not just a recliner, but a window seat twin size bed for parents; and the "school" with bug zoo, lots of crafty stuff and educational games and tons of books; the Starbucks in the lobby; the library; the vending area; the computer areas (one for email, the other for games & research). It's almost like going on a cruise, it's the poshest hospital ever!

We got all the important questions asked....Can Pat bring his X-Box and hook it up to the TV in the room? Yes! As a matter of fact there is one that circulates the ward and they just got Guitar Hero if we want to use that one. Can she get mail? Yes.

I think Aspen is more comfortable now, so I am glad we went to visit. She didn't have any questions other than, "Can we play in the courtyard?". There is a teepee made out of a giant bronze fish there, you kind of have to see it to believe it. It does make you want to go in, but we decided to save it for something fun to do while she is there a few days.

We also rode the tram, because we could and it's probably the coolest thing about the whole hospital. So, we conducted a little man on the street interview with the tram driver to find out where they hired a tram driver since we don't have any arial trams for miles around...he's an elevator operator! I didn't know those existed anymore!! We don't get the spiel though, "9th floor: gift shop, skybridge to the veteran's hospital, restrooms".

In addition to the hospital being the most amazing one on the planet, my friend Robyn who is equally amazing called and offered to coordinate helpers. Here is an idea of things that would help: We probably need a meal on the day we are discharged and perhaps another the next day depending on if I can get away to the grocery store or not. I will need someone to teach my Sunday school class for a couple Sundays...they are 2nd graders, and are just too cute!! I will need someone to help make phone calls after the surgery to let people know how things went. I will need a few folks to send cards to Aspen to keep her encouraged, she is loving getting mail. I also need someone to feed and water our barn cat on a daily basis. There are some people at Ken's work who were interested in making some financial donations to help with medical bills and such as well. So...anyone interested in helping in any way, please contact Robyn at robynbuhl@yahoo.com Thank you Robyn...it's a big job!!

Basic Training Hospital Style

This is a great link for kids about what a pediatric hospital stay will be like.

Bandaides Hospital Information

It's interesting for adults too! It gave me more ideas of things we need to talk about beforehand. Today she asked about the liquid diet...we had talked before about needing to be on a liquid diet after surgery and she wanted to know if it would be forever. It's funny what kids think and understand. I told her no, it would only be for a day or so and then she would have to start trying more and more solid foods....somehow she never got past the liquids yesterday, is it possible to be stuck on popsicles?

Today we also talked about needing to work hard to get out of the hospital. That the doctors will want her to do some things that might hurt, but it would be important to do exactly what they tell us to do and it might be hard work. We talked about what she would need to be able to do in order to go home: eat solid food, use the bathroom, and walk for a little distance. Sounds easy, unless you have a giant hole in your middle, which makes things just a little tricky.

We practiced how to sit up and get out of bed with an incision in your tummy, (roll on your side, push up with your arm that's against the bed while moving your legs over the edge of the bed) we'll do that some more, it doesn't feel natural to her yet. It's no fun to forget and feel the stab of pain from moving wrong once you have the incision...better to learn beforehand and avoid the pain.

She said she wanted to try to do the things the doctor asked, but she either works hard or hates things and wants to throw them....I can relate! I have moments myself where I would like to throw things...I hope she will choose hard work over giving up.

Never, never, never give up. (and throw things) -Winston Churchill

Sunday, April 27, 2008

Not Giving Up, Giving It All Up

Pastor Denny gave the best sermon today...it was about trials that families encounter. He had several points from the lives of Abraham & Sarah. He said we might encounter one of those trials this week...that's good, because last week I encountered them all, one would be a blessing!

So Denny was talking in one ear and God was talking in the other and showing me that I needed to wait for those results last week. I kept getting stuck in the horrible thoughts. All the "what ifs"...what if this dress I'm making with Aspen is her funeral dress, maybe I should just stop sewing. What if she needs chemo? What if this is the last year of her life? And every time those thoughts came up I really just had to give them up because I couldn't handle them at all. So I really spent last week turning over all my horrible thoughts, which meant I was also giving up a lot of plans, control, ideas, designs on my life and Aspen's, and ultimately Aspen's future. And when I was in the place where there was nothing else to give up, we got a phone call from the doctor.

I need a Frequently Asked Questions page...here are a couple answers to the most frequently asked questions:

Laproscopy: They cannot operate through small incisions because the pancreas is wrapped right up close to the duodenum (the top portion of the small intestine) and snuggles right up next to the spinal cord. It's too dangerous to operate with a tiny incision because fishing around in there they could nick the intestine or spinal cord and there would be real trouble then. And he wants to be able to see things really clearly for reasons below.

Being Sure: No, they aren't 100% sure it isn't cancerous...they won't really know until they take it out and send it to pathology, and see for themselves with their eyes, not through the "eyes" of a machine. But if we look at the lab work, things look really, really good. We have been able to keep the tumor from growing for over a month now, so I am okay waiting the extra few days to have surgery. If things turned out bad, I would actually be even happier with my decision to postpone surgery a few days. I would be able to look back on perhaps my last mother's day with her and know that it wasn't spent in the hospital, and Aspen would have the thrill of her dance recital in her memory.

So the larger of the two surgeries, the Whipple, will be performed if the surgeon gets in there and thinks it might be cancer. He basically removes the tumor and anything touching it for 2-4 inches in every direction. So that's the other really good reason to pray for the small surgery because having the Whipple means that he found cancer that we didn't know was there. When will he decide? When he's in there, that's why he scheduled so much time in the operating room for us. He can do the resection, or if he needs to he has the leeway to do the Whipple.

Today's visit with Aspen was about food in the hospital...we talked about being on a liquid diet afterwards and then slowly adding solid foods back into her diet. She's decided as long as she can have popsicles life will be ok. We talked about the IV again, I explained that she has to have it in even after the surgery is done in case she gets an infection and they need to give her medicine, or if she needs pain medication, or in case they need to do more work or fix something she won't need to get another poke. She was horrified that it had to stay...that part of life won't be as okay, it's going to take a lot of popsicles to smooth that one over!

Saturday, April 26, 2008

What A Girl Needs In The Hospital

I had the best night's sleep I've had in a long time last night! Today the girls had a really fun play date with Hannah and Sarah while I hauled some dirt for my folks. Then we went shopping for some "hospital" things...soft nightgowns (we only have pajamas and I didn't think elastic would be good on an incision), some green nail polish?, you just never know what you might need on an overnight at the hospital! We did escape Target without the new game of LIFE...as life goes, so goes LIFE...now you get a credit card, you can get married as many times as you want, and you strive to get more and more degrees to earn more money. I think we'll keep our really old version!

I just discovered this evening that her big bear is wearing her bathrobe because it doesn't fit anymore. Her animals actually wear a lot of her clothing even if it does fit, so it's hard to know whether things fit Aspen or just the stuffed animal that happens to be wearing it! We'll pack a sweatshirt instead and it won't get all tangled in the covers.

I was gifted with a stack of new magazines that I never would have bought for myself today, thanks Mom!! It's odd, since I have worked in hospitals I am really good at telling Aspen all the technical stuff...we talk about her IV every day. And tonight we talked about waking up after surgery and how sometimes the anesthesia makes children afraid when they wake up, like spending the night at a friend's house and forgetting where you are for a second when you wake up in the morning. But Mom and Dad will be right there, and if she is afraid she needs to hold still and not panic and thrash around because she's going to be on a bed that's kind of high up with metal rails that could hurt her, and above all else she might pull out her IV and then she would have to be poked again. (Anything but that!!!)

But I'm not very good at knowing what I will need, everyone else seems to have a much better handle on that than I do. I keep getting really great advice from lots of people who have been there before me. Just keep emailing and asking if I have packed __________, or thought about __________, or share your encouraging hospital story!! I'll probably remember my toothbrush and underwear, but I have gone on vacation before and left my entire bag behind, I'm not to be trusted to pack for myself!

Friday, April 25, 2008

The Nitty-Gritty

We are really excited...it's benign!! Her blood work was good, really good...none of her pancreatic enzymes are elevated, no cancer markers showed, no kidney or liver problems. The doctor is surprised, but said it's because of the fat free vegan diet. I am so glad Aspen has been able to stick with it!

It's made me realize that we have this food that God made for us to eat and we are constantly trying to reinvent it...to make things better, but there really isn't any better than what was made to go perfectly with our bodies. Enhanced, enriched, fortified, homogenized, genetically modified, and hydrogenated are not better. So, the tumor hasn't grown at all since the last peek inside...hurray!!

The only oddity (other than the tumor itself, which is not a cyst filled with anything, it's a solid mass the doctor says) is that her Chromagranin-A level is elevated which is just indicative of a benign tumor.

It has to come out!! Since we can't seem to get it to pack it's bags and leave on it's own, surgery is scheduled for May 13th at 9am. The doctor set aside until early afternoon for her just in case he needs all that time. The planned surgery is what they call a resection. They will cut off the part of the pancreas that the tumor is attached to and then reattach the pancreas.

If he gets in there and finds out things are a bit more complicated than we thought he will do a Whipple procedure which includes resectioning the pancreas, removing the top portion of the duodenum, and perhaps part of her stomach and then putting everything back together. Think of your parts coming together in the middle like 3 slices of pizza on the pan (the stomach, duodenum and pancreas all come together in one spot)...then imagine cutting the center points off all the slices and putting them closer together again in the middle. That's probably not a very good description, but that's basically what the Whipple does.

Our hospital stay should be a week, give or take a couple days if we have the resection. It just depends on how she is healing, taking food and all that good stuff. If we Whipple it will be 14 days, and if there are complications it's an indefinite stay. We are praying for a nice simple resection with no complications!!

So, we definitely want people to come visit if they want to! Aspen will be thrilled to see people. Friends and family are SO important to her! We would like to ask that all but our family and pastors (which is over 20 people!) wait until the 15th to come visit. The 13th is surgery day, the 14th she will be sleeping off the remainder of the anesthetic, trying to get up and walk a bit, adjusting to any pain medication, seeing if she can tolerate liquids, making sure all of her parts still work and lots of other recovery focussed things...I think she will look better and be better able to receive friends and actually visit with them on the 15th.

After surgery she will be on two weeks bed rest and another 4 weeks of taking it pretty easy...we have to find out when it's okay to jump on a trampoline again and if we can go to the Girl Scout Mom & Me camp on June 27th. The doctor doesn't believe she will be insulin dependent (he said he thought it was about a 99% chance that she wouldn't be). There is a chance she might be enzyme dependent to digest her food...it really depends on where the resection happens and how good they get it reattached.

We were scheduled for surgery on May 8th and I asked them to delay it if they thought it was safe...can you believe that?! Aspen and Cierra have a folk dance recital on May 9th, it would have been kind of sad to miss it since they already have their costumes, and have done all the practicing for it. It's at 8pm...give me a call if you want to come and I'll tell you the location. I don't know how much tickets are yet either.

We are thrilled with the results, I'm glad you can be thrilled with us!! We are so greatful for the prayers, it just turns out for the best every time!! Thank you, thank you, thank you!!!

News Flash!!

News Flash!!! It's a benign tumor and surgery is May 13th, hospital stay of approximately one week. I'll post the details later tonight!

Wednesday, April 23, 2008

How Does Friday Sound?

Well, of course I got impatient and called, it's a whole 24 hours later than it should be...and I think of myself as being pretty patient...ha, ha, guess not under fire! So the receptionist said she would have the nurse give me a call, which could take up to 12 hours (that was at 4pm...I doubt I'll get a call at 2am, but stranger things have happened).

She did tell me that our doctor is in surgery all day tomorrow, so if we didn't hear anything today it probably won't be until Friday. So tune in Friday for another exciting adventure of Hurry Up and Wait.

Tuesday, April 22, 2008

Tune In Tomorrow

Well, no news is...no news. I actually called this afternoon because I couldn't take it anymore. And the ridiculously nice gentleman on the phone told me that our doctor has been really sick for the last two days. He also looked up Aspen's chart and discovered that her blood work isn't back yet either...so tune in tomorrow...same bat channel, same bat time. For another episode.

Sunday, April 20, 2008

Talking & Listening

Today was hard, it was the first time people at church looked at me and didn't know what to say. I don't even remember what we used to talk about before all this happened. As much as I don't want it to define my life and who I am, it seems inevitable. I am beginning to understand how people can pull away, and feel weird with people they have known and loved for years...I always wondered how people could feel like they wanted to leave a church in a crisis, with all these people rallying around them. But I get it now, having seen both sides of the coin. I wish someone had come up and told me, "People aren't going to know what to say. If they had the right words, they would say them and try to make things better. No one loves you any less, this is just a hard time." I don't mind answering all the questions a thousand times, and I'm happy to say, I can't talk about it right now if I can't. I wish people felt more comfortable asking!! I've always wanted to dye my hair candy apple red, maybe I will now, just so we have something to talk about!

On the flip side, Amy got up this morning and read the blog and had news of some other children and decided the women at church needed to pray. She called and talked to lots of women and we prayed...some at home, some at church. This is an odd set of circumstances: first Allyson was diagnosed and sent to the children's hospital, then Aspen, then Sarah (all from our church!) and then Micah. All these children from one church with different life threatening illnesses within two months time. We have to sit up and take note and ask, "What's the message God?". I hope we spent enough time listening!!

Spa Day or Quiet Time in a Public Shower

We are in recovery from Friday. The waiting, and not knowing, and wondering what has happened inside Aspen while the clock has been ticking for a month is pretty much torture. But there is an army amassed around us for support!

My sister had me and the girls, my mom and a friend over on Saturday and we went swimming...my favorite! They have an indoor slide at their city pool, the girls had a marvelous time. I swam and sat in the hot tub and took as long as I wanted in the shower. Yes, it was a public shower with no door, but the girls were in the pool and no one asked me how long to microwave anything, no one opened the door to ask if their outfit looked nice, no one said hurry, mommy we're going to be late.

We went back to Sherrie's house and she had a little foot spa for the girls with foot fizzies, brushes and soaps and lotions and wrapped it all up with toe nail and fingernail painting....while I vegged out on home and garden television. (We don't have cable, so that was a treat!)

It was wonderfully relaxing and by the end of the day I was feeling like I was recovering from Friday. Bed time brought tears though, Aspen didn't want anyone to touch her, she is feeling a little violated from Friday...overly poked and prodded. She is my hugger, her love language is physical touch, and it surprised me that she of all people wouldn't want to be touched. It was probably really hard to sort out all these hospital people being nice, and saying they care and are sorry, and hurting her. I asked if we needed to make her a special tag for church that said, "Please ask before you hug me", but she thought it would be alright. Lots of things are alright in the morning if you can just put your brain to bed at night.

Friday, April 18, 2008

Really Good or Really Bad

We knew today would either be really good or really bad...but we really never expected both. I guess I should have, it seems to be how life is dealt out at my house. There is rarely this nice, mellow in between time. Something is always happening and it's always really good or really bad.

So first I'll tell you the really good...Aspen got to ride the tram up the hill and down. Just once, but it was a pretty good ride! The surgeon is awesome!! He is honest, very personable, very patient, and very persistent. He was talking to Aspen and high-fiving with her, just what we prayed for in a guy who could have been really stuffy (this is the personable part). The hospital staff was amazing! From reception, to nurses, to people we asked directions from in elevators; everyone was nice, helpful and even went out of their way to make us comfortable. The building is amazing! There is fun stuff around every corner for kids, we were pretty busy so we didn't get to check it all out, but the stuff we did see/do was great. Ken's family is amazing! They endured hours and hours and hours of sitting in waiting rooms and acted like it's just what they expected to do...even with the 3 little cousins, who were cute and precious as always and incredibly patient!!

So here's the really bad part, we are at square one all over again!! The surgeon said it's not a pseudo cyst, it's a different kind of growth on her pancreas and he wasn't going to guess what it might be from a month old CT scan (the honest part). So he sent us to the lab to get blood drawn and for an MRI today...which as you can imagine was far less thrilling than the science museum or the zoo for the 5 kiddos. He also told us endoscopic surgery is not an option, it will be the real deal. We can't schedule until we know exactly what it is, so we wait a bit more. We also found out Ken's dad's cousin died of pancreatic cancer in her 30's...the surgeon wants her charts (from 30 years ago!) because he says he has to figure out why Aspen has this (the persistent part). I'm relieved some doctor is finally as gung-ho about this as I am!

The lab was good, but it took 5 tries to get the IV started for the MRI. We were at the point where I had to ask her if she wanted to quit and go home after try number two. She said no, she wanted to stay and get it over with, so stay we did and after an hour of squeezing, poking, and prodding they finally got it. And then she had to lay perfectly still for 45 minutes after being contained in a hospital for 5 hours already...that didn't really go so well. So she had to lay still for one and a half hours instead because they re-took a bunch of the scans due to wiggling. She thought it was too bad such nice people have such bad jobs. We should have results on Monday or Tuesday and if we don't, or if we're just worried on Monday we're supposed to just give nurse Nancy a call...they are so ridiculously nice!

Well, by now we are emotionally and physically exhausted and on the way home we stop by the church to pick up a prayer shawl that Sue knitted for Aspen. It is beautiful, and SO Aspen in bright, girly colors with a ruffled edge! Ken read the card out loud, Aspen snuggled up in it, and I was driving and trying to not cry so I could see the road. We got home and Ken is trying to leave to go work for 12 hours, after 7 hours at the hospital, and I am crying. I'm kind of a mess...I'm at the point where I want to just hold Aspen close and treat her like she's made of glass so she won't break, it's hard to let go. I think I need sleep..."Satisfy us in the morning with your unfailing love, that we may sing for joy and be glad all our days." Psalm 90:15

Thursday, April 17, 2008

Answer Day Is Almost Here!!

Tomorrow is the day we get our questions, questions and more questions answered! Our appointment is at 9:15, we'd love your prayers for safe travel, a good conversation with the surgeon, and most of all that the tumor is in a place where they can get to it endoscopicly.

This has been a really long week of waiting, life is coming at me quickly, but it's like being in a car accident...my perception is that it's moving ever so slowly.

Uncle Dave and family are going to meet us after the consultation and go to lunch and have some fun in the big city...zoo, science museum, who knows! We are SO glad they are willing to make the trip, being with family and friends seems to be when Aspen is happiest and not thinking about her illness.

I have been trying to find a place for us to go to lunch in Portland. Joni found a list of vegan/vegetarian restaurants in Portland and I have been surfing the menus. I am amazed...most things on the menus are created with lots of fat (mostly soy or nuts) and they are meat recreations. If you don't want to eat meat, why try to make everything taste like meat? One menu has exclusively "meat" items. And the nachos made with cashew cheese...someone else try that and tell me if it's good. Would your kid eat this...brown rice, beans, steamed kale, sea veggies, burdock & carrot with gomasio and would you pay $9 for it?

The best place seems to be the Seventh Day Adventist hospital cafeteria...who would have thought?!! They have regular food...vegetarian tostadas, black beans and rice, lots of veggies, split pea soup and corn chowder, and a salad bar. If we don't feel like driving there, we can just go for pizza. It's a little boring without the cheese , but she does all right with it...the cousins are going to be there, who cares about the food!!

Primal Scream Therapy

Aspen's frustration with her diet really came to a peak Tuesday. We went to the grocery store, she didn't want to come in, she just wanted to wait in the car. I really needed her to come in and let me know what sounded good to her. She came in and was okay when we were on the bakery end of the store, but as we progressed down the aisles she got more and more frustrated with the things she couldn't eat rather than joining the scavenger hunt for what she could eat. By the time we were mid way she was just waiting at the ends of the aisles and not coming down them, she had her arms firmly crossed, her head down and the scowl painted on really well. We were almost to the end of the store, I was in an aisle and she was at the end and she just snapped and came running down the aisle screaming, waiving her hands in the air with her eyes wide and collapsed in sobs in my arms. We stood like that for a while, me holding a sobbing girl in the middle of the aisle. All I could tell her was that it was okay and that I loved her. It's not going to change any time soon.

Guess we all just need some primal scream therapy from time to time, I know I wish I could just stand in the yard and scream some days.

Thursday, April 10, 2008

Hospital Vacation

Still working on things from this end...we need to schedule a place to stay while Aspen has her surgery. I have learned a lot once again! We don't really qualify for the Ronald McDonald house, and I'm not sure they would want us coming and going at all hours. I always thought everyone stayed there when their kids were having surgery...but it only holds 16 families, you need a referral from a social worker and you can't make reservations, you just have to see if it's available when you get there. Not to mention it's geared towards families with little kids...there is a giant Sully monster from Monster's Inc. in the living room, little tykes tables in the kitchen and a big play room with lots of toddler toys. Most people cook for themselves in the kitchen and share bathrooms. I would feel guilty hogging up a room that a young family really needed!

I think it will need to be a nearby hotel...we just need a place to crash for a few hours a night where we won't disturb people in the middle of the night when we come in. There is a bed and breakfast, but I can't see them wanting us coming and going in the wee hours either. I imagine staying with Aspen until she is REALLY asleep...midnight or later and coming back to the hospital prior to shift change at 7am. One of us might leave earlier and the other stay later, so it would be nice if it were walkable.

I am trying to schedule a tour of the hospital the day we see the surgeon. Hopefully Aspen will feel more comfortable. She is getting a little nervous, and insists she doesn't want a tour because it's all "machines and tubes". I think it will be a much brighter, happier place than our local hospital, which must think tiny windows and multiple shades of khaki are restful. They have big play rooms for all ages and encourage journaling, scrapbooking and art/collage making for her age group after surgery. We are waiting on a call back on that one.

This is a lot of work! Who knew it involved vacation planning?!! I just want to call a travel agent and book the Children's Hospital Package complete with hospital tour, shuttle to the hospital, and get well card on the pillow at night.

Wednesday, April 9, 2008

Silly Advice

As usual, just when you think you can't take it any more, that things just can't get any worse...you get a break! Yesterday and today were my break...

Monday, on the tail of all of Aspen's stuff I had an appointment with an OB/GYN, which included a biopsy and a recommendation for a hysterectomy. It seems that things would have fallen out by now were they not so enlarged! I am doing some hormone therapy trying to keep things at bay until well after Aspen's surgery...although I have it on good authority that all I need is a little Preparation-H!!

My surgery will be through my c-section because things are so messy. Ken doesn't have the slightest idea of what he's in for since he was in Missouri at Drill Sergeant School when Aspen was born and missed the two weeks of bed rest.

So tomorrow I will take a deep breath and pick up the phone again and schedule an appointment for myself with the Urologist and call the hospital and see if I can get the billing for Aspen's CT scans all straightened out. I was advised to not call, just send them $2 a month (in pennies in a dirty sock) forever...I have wonderfully silly advisers who make me laugh till I cry. But it could be worth several hundred dollars to do some negotiation, so negotiate we will.

Saturday, April 5, 2008

Taking Care

Aspen took care of herself yesterday afternoon...yes, it's a big deal!! I don't know if it's because she was really exhausted, or she just felt comfortable asking to leave. She didn't want to go with the other girls to play, she just wanted to go home and rest. I am so glad she could make that decision for herself and I didn't have to tell her it was time to go. I haven't told her, "you need to rest" or "it's time to go" yet, we have just talked about how she feels and I keep asking her to take care of herself. I want her to ask to leave or rest if she is tired...she is finally getting it...hooray. I really, really don't ever want any of this stuff...eating, resting, etc. to become a point of struggle for power in our relationship. I tell her when I think things are a good or bad idea, what the potential outcomes are for her choices, and then I let her make the choices...so far, so good!!

Getting rest and eating right are just critical right now and if I start telling her she has to do something she might very well tell me she's not going to, or do just the opposite of what I'm telling her to do. I want her to feel in charge of her body and her life, I don't want her to struggle to wrest control of her life from me, she is already struggling to have control over her pancreas that is out of her control.

Today was terrific, our friends Laura and Dennis and their kids had us over for lunch...they are vegan. She whipped up all kinds of good things that the girls both loved. They played board games afterwards, which was just the right speed for Aspen (who normally can't sit still through one board game, let alone 3!). It was very restful to not have to cook a meal, and not have to worry about Aspen getting worn out.

Laura gave me a great book, The China Study, that is about the health benefits of veganism...what is the right word here, veganality, veganness? Anyway, it would be interesting for anyone who is curious about veganism, who wants a scientific study and not the hippy well being talk.

Friday, April 4, 2008

Exhausting Day, Amazing Friends

I started making phone calls a little after 7am this morning...trying to get some answers...I was still on the phone at 10:30am when Ken's dad stopped by to drop off a book, and still in my bathrobe because I hadn't gotten a break to get in the shower!

So here's what we know now...it's a pseudo cyst (the doctor at the children's hospital knew what it was immediately when he saw the CT scans). It's a kind of cyst that turns into cancer if not removed. It's whole job is to grow bigger and take over, so the fact that it isn't bigger is really good. It is encapsulated and has not metastasized still, so that is good news. They want to remove it right away.

We have an appointment with the surgeon on April 18th...I have not researched him, but I had a choice of two and seemed to remember this guy's name, so I went with him. I can change if I want to, but it will push the appointment out another couple of weeks as well.

The surgeon will tell us, based on where the pseudo cyst is in the pancreas how we will get it out. They might be able to get to it with the endoscope, if not they will go ahead and do big surgery and take it out. I don't know any details yet, whether it can be laproscopic or whether it's a large incision, front or back, etc, etc. We will also find out whether they can take just the pseudo cyst or if they need to take part of the pancreas. Standard procedure is usually to take the cyst and a portion of the surrounding pancreas, or to divide the pancreas and remove the bottom section (it's carrot shaped). The pancreas will then try to recover and operate as normally as possible...it can turn out that she would be insulin dependent, or enzyme dependent after such a thing, but right now it all sounds so much better than chemo.

After talking with the doctors, nurses, schedulers, registrars, referral people, CT records people, and relaying to Ken (who was napping on the couch by this time), I was so exhausted. Her name was mixed up on the referral, and I had to call back several times to get it all straight...anyone know Daniel S. Aspen?

By that time it was 10:45 and the girls were supposed to be at girl scouts in 15 minutes for a potluck and award ceremony, and I hadn't made it to church to drop off a bulletin insert yet, and I was still in my bathrobe! And that's where friends and family swooped in and picked up the pieces!

My mom called and said I should have asked her to make a potluck dish, I received a bunch of supportive emails, Lauri took care of the bulletin insert, Joni took care of all the badges and patches and planning for the award ceremony, and life just got back on track and kept going! I have awesome friends!!! Cynthia emailed to remind me I'm not in charge of how things go, just how I respond...hmmm....

I'm really a control freak. I am having trouble having my life be so chaotic...those of you who know me well, know that I like life busy, so if I think it's crazy you can imagine just how wacky it is. I'm feeling like I can't keep my obligations because I suddenly have to spend 3 hours on the phone to take care Aspen, and letting people help...I'm really not used to that. I promised Amy that if we needed anything we would call. I don't know how crazy things have to get before I will call, but I obviously need to work on that and think about when that is.

So, Aspen is good with the children's hospital and surgery as long as she can ride the tram up the hill a few times. She's not worried about being cut open, just the IV, she doesn't like needles. She did ask if she could be asleep for the surgery though, she thought it might be a little freaky to be awake. She's one tough kid.

The girls had a wonderful ceremony and potluck! All the dishes at the potluck were things that Aspen could eat, people were so nice to cook bizarre food they wouldn't normally (thank you Joni and Meredith)! Cierra earned 23 badges, and Aspen earned 22 this year so far. Last year their big goal was cookie sales, this year their goal is to earn every award you can earn at the junior level of scouting. They are well on their way!

Thursday, April 3, 2008

Unraveling

I came home today and feel like things are unraveling faster than I can fix them...we have a mountain of paperwork for the Children's Hospital, our insurance doesn't want to pay for the CT scans because the hospital did the paperwork wrong and didn't collect the co-pay at the time of service, and our doctor's office called and said the head of pediatric pancreantology reviewed our CT scans and is referring us for surgery...how can we have surgery if we don't have a diagnosis?!

I think all I can do is fill out the paperwork and sleep on it. I will start making phone calls in the morning to find out what kind of surgery (biopsy, lumpectomy, transplant) and what exactly he sees in the CT scans that makes him think this is the way to go. Good thing I did a wee bit of research already, I feel pretty comfortable with this hospital, but I need a diagnosis to find out if this is where we really want/need to be.

I thought if we just needed to take the tumor out and have it done with I would be really good with it, but the thought of them cutting open my baby is suddenly really disturbing...I haven't really gotten used to the idea. I have no idea how my mom stood by my side while I had a c-section, but I guess I'm going to find out.

There was sunshine today though...we got a wonderful gift in the mail from Sally and Ron, and if all the stress wasn't enough to make me cry, that tipped me right over the edge. Thank you so much!! The wild, terrible times are tempered with love.

Where Crisis is Routine

We got news this morning from the doctor...it was ok, but not the extraordinary news we wanted. The tumor has not changed at all. The diet is really helping to keep the pancreas from spasming, but the tumor is still right there in the middle of it. So the good parts are: her pancreas may be more viable because it isn't being eaten up, the tumor may be removable, it could be a cyst. The bad parts are: it didn't go away, it could be cancer.

We are now on a waiting list at the Children's Hospital to take any available appointment that comes free, the doctor is trying to get us moved up a bit more. He did remind me that what we see as a crisis here is just going to be routine at the specialist's, the only people they see are in crisis. Good adjustment for my thinking, but it doesn't mean I will tolerate complacency.

I am frustrated, life seemed so sunny, but the sun just ducked behind a cloud...I feel like we have done all the right things up to this point: stringent diet, more focus on rest, more focus on family, putting aside extra projects, asking for prayer. And we still don't have a plan, an answer, a diagnosis. I feel like I did it all, and did it well, and it didn't work...yet.

So we continue our diet, and wait for our appointment at the Children's Hospital. I have been doing research on the best places to seek treatment. The children's hospital here is a very good one, it's in the top 50 in the country overall and is one of the very top hospitals for pediatrics. I am looking at all kinds of alternative procedures, blogs, chat groups for survivors, hospital rating sites, doctor rating sites and learning about all the latest and greatest procedures, where they are done and who does them best. Thank you grandpa Ken for getting me started.

I am trying to find out all the possiblities and all the possible treatments for the possiblities...so when we actually find out what it is we will know immediately what treatment we want and where we want to seek it.

The girls had a wonderful day playing outside with cousins and friends. They played pioneer girls all day long and raided the refrigerator for pioneer food...carrots, cucumber, apples, pears, quinoa, bean soup, apple sauce and more. It was great for Aspen, she got to go back to grazing all day with everyone making a game of it so she was just doing what all the other girls were doing!