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 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 Thank you'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 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 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 goes, so goes 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'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 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 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 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 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 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 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 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 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'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 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


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 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 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 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!

Wednesday, April 2, 2008


Well, again we are waiting, and once again God has provided a great place to be while we wait. Last time it was women's retreat, which was scheduled almost a year prior. This time we are at a play we bought tickets for in August! I am so blown away by how things have worked out. We have been surrounded by friends and family starting with church Sunday, followed by a family birthday celebration, and then up to Puyallup to be with more family and friends for the has been wonderful to be surrounded by family and not sitting at home wondering while I fold laundry.

The doctor actually called today...on his day off, from talk about the results. I was watching a play so I had my phone off and missed his call. He said he would call again in the morning. So now I wonder what would make him call on his day off? It's either really good news or really bad news...praying for extraordinarily good news!!

Got the call from the Children's Hospital today too...our appointment is May 21st, I knew they were busy, but wow! I'm glad I pressed things or we would have been scheduled in June...we were scheduled in June, but as we were talking someone cancelled in May and it happened to be a new patient appointment, so we took it!

Aspen has had a little bit of a tough time being with cousins and having to eat her food...she wants to just not eat. I think she is a little bit embarassed. I just let it go and didn't say anything at lunch and afternoon snack, when everyone else who had eaten lunch was starving. I made her a big fruit, applesauce, fifteen bean soup, and jello. She ate it all and went back for more applesauce, I'm so glad! Up until today she has eaten all day long every day...I understand why animals who graze eat all day, it's just hard to get enough energy out of a bunch of vegetables to power a body (especially the size of a cow!).