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 will be hard for them to sit in a booth for 7 hours a day two days in a row!

Thursday, September 25, 2008


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'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'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 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 bunnies, purple hippos, big'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 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.