Saturday, March 29, 2008

Scan Number Two, Not Juan

We are home and hurled back into our busy lives again...we came back to grandparents, a field trip to the dump (fascinating really!), girl scouts and of course getting everything put away, laundered and grocery shopping done. I will be caught up as soon as I make a few more phone calls and vacuum the living room...hurray!

We threw the CT Scan into the schedule this morning as well...there was a man there in the waiting room and the technician came out and asked if he was Juan, he said no, he was two. Aspen did great on scan number two! She got up early to start drinking her yucky barium (vanilla has been declared superior to banana in case you ever have to try it yourself). We went on to the hospital and had a great tech this time...much more personable, efficient and helpful.

She gritted her teeth for the IV...she has lots of poke marks. The technician asked which mark was the best; Aspen told her and she got the IV on the first try. I stood so I could see the screen during the scans but they didn't pull up the pancreas, so I couldn't see anything.

We will probably be waiting until Wednesday again for results unless there is a super speedy radiologist. I don't think I will hold my breath for that though. I am holding my breath and hoping there will be nothing there!!

I hadn't heard from the Children's Hospital, so I called the referral department at the doctor's office yesterday. The referral clerk was waiting until we had these CT scan results to fax the referral...what's another week, right? (Yes, that is sarcasm, I had a hard time being nice) I explained that the purpose was to get things going, and that she could fax these results later on, but we really need to get to see a specialist as soon as possible...she was very nice and apologetic. She must not have children.

Ken is back at work, and a little nervous about starting the term as usual...pre-term jitters...I don't know why, he got three A's and one B last term despite the craziness and lack of sleep. We considered applying for jobs this week, but it's kind of exciting and kind of scary to look at changing jobs right now. There are so many questions...can we get insurance with a new company with Aspen having a pre-existing condition, do we need to live next to a large hospital, etc, etc. It's be great if Ken could find a promotion within HP.

Aspen made the "Can't Be Beet" chocolate cake on the Fat Free Vegan site with Grandma. It is really quite wonderful! It doesn't taste like beets and is very moist and rich...tastes like a crazy cake...five stars for that recipe!! We also made parsnips with orange zest and honey...I had to eat them myself...but everyone tried them! Have I told you that Ken only eats iceburg lettuce, raw carrots and corn...those are his only veggies...this is a very exciting adventure for everyone!

Monday, March 24, 2008

Rejuvination & Relaxation & Sleep

Still at the beach...aah! We have to come home to reality tomorrow, I'm ready, the girls are anxious to see Grandma & Pop Pop who came home from Snow Birding early to see Aspen, and Ken has to go back to work on Wednesday.

Aspen keeps wearing these summer capri pants from last year and not her jeans. I finally asked why she isn't wearing her jeans. She said they are all too big and won't stay up. She was a little upset I hadn't noticed her hitching them up...we could have bought her a belt if I'd known. It doesn't seem like a big deal, but this is the day to day stuff that breaks my heart.

We are cooking at home mostly because it works for everyone. Yesterday we went out for lunch because you just can't spend a week at the beach and not go out for clam chowder. We checked the menu online before we left and there wasn't anything Aspen wanted to eat (as usual she could have salad, or salad). I took a chance and made her a fruit smoothie and we brought it along. The waitress was really nice and poured it into a restaurant glass for her and let her keep it. It made things a lot easier!

I slept all night for the first time last night!! It's been long enough that doctors and veganism are starting to feel normal, I'm not teary during the day when I am alone with my thoughts, I can talk to people about it without becoming an emotional mess...but I have been having nightmares about someone stalking Aspen. I never see them, but they are always there, waiting wherever we go...I toss and turn and wake up with my heart pounding feeling like I have to protect her and I can't. It was SO good to get a real night's sleep! I must finally be truly relaxed, so it must be time to come home.

Spring Break

We have been having wonderful days at the beach sunny and nice...the girls have been able to play in the sand, build cool stuff with sticks and shells and rocks, and geocache. It's been terrific to be a family again. Ken is out of school, so we have Daddy back. I don't have to make all the decisions, answer all the questions, cook and clean up after every's been very relaxing.

We drove back home for Easter...went to church with our church family and then over to Ken's Dad's for Easter dinner. Aspen hunted eggs with the other cousins...the tradition is that they are filled with chocolate and money. Grandma Syble had candy that Aspen could eat for her...LOTS of candy, so she just traded her chocolate in on butterscotch buttons, jelly beans and gummy worms.

When we have these big family gatherings, there are lots of food "requirements"'s just not Christmas, or Easter, or whatever without ___________ (you fill in the blank). It usually means huge meals with lots of person has to have green bean casserole, another broccoli salad, another au gratin potatoes and the list goes on and on. Aspen ate a dry baked potato and canned green beans for Easter dinner...and was's amazing what we can do with our minds if we choose to be content.

Friday, March 21, 2008

Best Easter News

I am writing to you from the beach...where it rained and blew all night. I hope it blew everything through!! The doctor called (getting tired of starting blogs that way, so moved it in a sentence or two :o)and there is really, really good news...

Her lab work came back nearly normal...her pancreatic enzymes are only slightly elevated, he is surprised at how well she is doing. There is no sign of high cholesterol or diabetes, so even though they don't provide us with a possible "why" we are greatful she will not have to be medicated for life to deal with either of those!

I am so excited and hopeful, what a great way to start Easter weekend!!

Wednesday, March 19, 2008

Doctors and Pancakes

Today, like many days these days, started with the doctor. We went for a checkup...I think he just has to be responsible and not take my word for everything over the phone...besides, he doesn't get a co-pay for phone time. He mashed around a little on her stomach, no pain, hurray!!

He ordered a bunch of blood work, he said it might not come back perfect, but we expect her pancreatic enzymes to be a little lower if we are doing the right thing. He is also checking some things he didn't check last time because we didn't know it was her pancreas then...her blood sugar and cholesterol levels. One of these could lead us to "why" perhaps.

He also asked us to have her eat a meal with a little fat in it, to test and see if her pancreas is still spasming. If she ate fat and wound up in tons of pain, it's spasming, if not it's still messed up, but done spasming...weird test. Since she was fasting for her blood tests, she wanted breakfast right afterwards and decided on pancakes. You would have thought she was eating some gourmet, 5-story high dessert...she oohed and aahed....the butter was SO good, and the pancakes were the BEST pancakes she had ever eaten!

It's bedtime now and we still don't have any pain, so she withstood the little bit of fat...hooray! I'm just not willing to set us back too far. If we get her pancreas irritated again, it could start making the tumor bigger again. We want to keep it quiet, so back to our vegan diet we go.

Cierra was concerned today about not getting the same treatment as Aspen these to help her stay quiet and rest, lots of cards and emails, etc. We offered to buy her as many gifts as Aspen got if she would eat the vegan diet. She wanted to know if she had to get the same kinds of things...girly stuff, ya know. We assured her we would select gifts that she would like. It would have been really good for her, but she declined and decided it wasn't worth it after all.

It's like swimming in a sea of peanut butter...we are moving forward, but it seems so laborious and so slow and we still can't see where we are going! I have faith that we will get to the other side if we just keep swimming though.

Ken took his last final tonight, so we have Daddy back in the family for a week or so...and the honey-do list is really short! We are heading to the beach for a few days, it will be nice to have a change of venue and a break from the schedule. Only 11 more weeks until graduation...but who's counting?!

Monday, March 17, 2008

Intense...Good News

This weekend was intense...there was event after event that the girls needed to be shuttled to, there were meetings galore for myself and Ken, there was the wacky diet thrown into the mix, and there was a wonderful Sunday with friends at church that was SO good and SO tiring. Sunday night we were all tired by 8pm, Ken slept on the floor, Aspen and her friend Steffi were piled in pillows on the couch half asleep, Cierra was curled in the afghan in the big was cozy!

Sunday was a breakthrough day...lots of prayer, lots of emotional sharing and caring. And Monday arrived....

More Good News!!! The doctor called first thing, and after visiting and finding out Aspen is really controlling what she eats and hasn't had any pain in a while he is moving her next CT scan to Friday the 28th instead of this week. It's kind of frustrating because I want to know NOW, but it's really good that he thinks she's doing really well and we can wait that long. He wants to be sure it's shrinking or not to get a solid diagnosis.

He thinks the pancreas digesting itself is really the diagnoses. This is "thinks", we won't "know" until the first of April after the scan. We are working on the paperwork part of the referral to the Children's Hospital and will have to wait until they call us with an appointment. More waiting.

We are hoping the specialist will be able to tell us what the extent of damage is to the pancreas. It would be nice to know "why", but since we know how to prevent a fabulous fruit and veggie diet...I'm not sure exactly how important "why" is at this point. So finding out the extent of damage will tell us how long we can expect her pancreas to continue functioning. I hadn't really wanted to put this on paper, but it seems important for people to know and it really kind of lets you know where we are....

50% of all kids who's pancreas digests itself to form a tumor live longer than 7 years

Here is the disclaimer...I am not of this world, just in it and I reject it's statistical data, but would be foolish to ignore it. My glass is more than half full, and my cup is running over...THANK YOU everyone for the cards and letters, gifts, support, emails, calls, e-cards, hugs, great stories of encouragement and survival, recipes, research, questions, caring, understanding, shared tears and most of all prayers.

Saturday, March 15, 2008


We went yesterday with our Girl Scout troop to the REAL. LIFE. exhibit at Medical Teams Northwest. They depict people in 8 different countries where life is horrible...war refugees, dump dwellers, orphanages, etc. I was a little apprehensive because life has been really real around here lately!!

It was hard to watch my 11 year old girl stand and read about the 11 year old girl who's parents were murdered by the LRA in Unganda. She, like hundreds of other little girls, was taken to be a "personal" slave and has escaped with her baby. Wow! We are live where we do, have wonderful medical care, many, many food choices and so much more!

We went to Sweet Tomatoes for lunch before visiting the exhibit...I thought Aspen would be excited that she got to eat out at a restaurant. Not many serve anything she can eat other than salad, and most don't have any dressing she can eat to put on the salad. Instead of being excited, she was really focussed on what she couldn't have. I wished we could have seen the exhibit first. I think it kind of put things in perspective....there are kids who only get to eat what others have thrown away as garbage days before.

The reality is that she will probably have to eat a vegan diet for the rest of her life in order to survive....that is the matter of fact statement. I want our reality to be a bit richer though, I want her to look at this change as an adventure! It is like moving to a foreign country and trying the foods a little at a time and getting used to new flavors. I'm not exactly sure why vegan food has to taste like sticks and twigs (Ken's comment), but so often it does! Nora suggested that Aspen write a would be wonderful to have a litany of flavorful recipes...maybe she will!!

Friday, March 14, 2008

The Perfect Smoothie

The perfect smoothie is fat free soy milk, ovaltine, tons of ice and protein powder! I can also tell you that the perfect smoothie for Aspen does not involve bananas or berries...has to be chocolate! Silly me.

Yesterday was the first day that Aspen was actually hungry in over 10 days. She was hungry all day!! It's hard to get enough calories on her diet. The doctor wants her to eat about 3000 calories a day to gain weight. Most of her food is 50 to 75 calories per serving...that's about 50 servings of food per day!!

She probably ate 30 yesterday though!! Hurray!!! She has lost 8 of the little 88 pounds on her body. We are striving to just keep the pounds on, even if she doesn't gain, she just can't keep losing.

We got the protein powder night before last and have been struggling to hide it in things ever since! It's kind of sweet and vanilla flavored, so it just isn't really compatible with bullion, cucumbers (her favorite veggie), other veggies or soup. It really only disguises well in sweet things....even tried to make popsicles with protein powder and juice. That was gross!

I had been looking all over the internet for low fat protein powder, called health food stores, and I found it at (drumroll please)....Costco!

Aspen's follow up appointment with the doctor is next Wednesday, we are waiting for the orders for the follow up CT scan and the referral to the Children's Hospital, it's looking like we won't have those until Monday.

Aspen continues to not know how serious this is, we haven't told her. She just knows she is sick and has to get well. We had a big discussion about the tests coming up...I explain what's next, she says, "I hate needles. I hate doctors." Please pray that we get referred to a very gentle, personable doctor at the Children's Hospital who is also a leader in their field and very aggressive about treatment. The two don't always go together, but that's what we need!

Wednesday, March 12, 2008

Good News...Sorta

Well, prayer is working!! We got good results's a really big tumor and they would expect a tumor that size to have metastasized to other parts of her body if it was cancerous...and it has not!!! They aren't saying it isn't cancerous, just that it might not be, and if it is, it's all centrally located.

So, we wait some more....the doctor wants her to be on the strictest of diets for the next week. Then next week we will get another CT scan to measure the tumor. If it has reduced in size we will continue the fabulous liquid concoction diet and see if the tumor will go away completely. One possible cause is that her pancreas could be digesting itself and the tumor is made of digested pancreas. That's what the doctor is going with right now.

If it doesn't shrink, then we will go to the Children's Hospital attached to the Health Sciences University and get a biopsy. They can do that by endoscopy, putting a tube down her throat and taking a little sample.

Frankly, I expected a referral to an endocrinologist or the Children's Hospital. I think I will go ahead and see if we can get an appointment at the Children's Hospital and get in the system. If we wait until after we eat liquid for a week, get another CT scan and wait for the results and then make an appointment we are really looking at a month down the road.

I asked the doctor if we could just make all the appointments for everything and cancel those we didn't need if it came time and we didn't need them...I might be just a little impatient...he said no...sigh.

I am encouraged!! The two worst case scenarios are both better than chemo for months on end...the worst of the worst is that her pancreas is eating itself and we need a transplant because we can't control it, the other worst case scenario is that it's cancer and they remove the tumor and we do a little radiation. I know it seems weird that anyone would be excited about either of these choices, but really they look so survivable, and so doable without months and months of torture.

I asked Ken how he was doing yesterday, he is having trouble seeing her in pain and being helpless to do anything about it. We all are. We just want it fixed...yesterday.


We are waiting once again. We waited for results from the blood tests, we waited for results from the ultrasound and now we are waiting for results from the CT Scan. I was blessed to wait with the women from my church at our Women's Retreat over the weekend as we anticipated having the CT Scan. I was so encouraged, so loved, so prayed for!! I cannot believe how much people care and take time out of their lives to pray for us, check in with us, send cards, notes, gifts, do research for us, is really, really amazing. What an awesome support network. I am starting to blog, not because I want the calls and emails to stop...but because I can't keep up!! What a wonderful problem to have! Thank you, thank you, thank you!!!

Several people have mentioned "bothering us" with their calls or emails...that couldn't be further from the truth! Your support is so welcome and so meaningful to us, truthfully I am worried that it will stop and I will feel alone in all this, or you will get tired of updates and hearing about this.

The doctor has been great, he called Monday afternoon to let us know there were no results yet and he would be out of the office on Tuesday so we wouldn't know until Wednesday. I am using this time to prepare for our next conversation. I have so many questions!

We are trying to go ahead with life as usual as much as possible. Life as usual makes her very tired. She went to dance class and spent the night with a friend last night. She is absolutely wiped out today....playing quiet things, napping at home group, in bed asleep when I came to tuck her in. She has dark circles under her eyes most afternoons. I am feeling the need to limit what she does so she has the energy to survive this, but I don't want to take away her freedom. I am hoping she will self-regulate as she recognizes she isn't feeling very well. She has a hard time telling friends she can't do things, but she can always blame it on mom.

Tuesday, March 11, 2008


Yesterday was our CT Scan...we didn't learn a lot (the results won't be in until Wednesday), just that it really is a tumor we are looking at. Aspen did really well with everything. She had to drink some thick, chalky, banana flavored Barium which made her feel like throwing up. We were of the understanding that if she drank the Barium she wouldn't need the IV Iodine....that wasn't the case. They started the IV as soon as we got there. Aspen was pretty scared, but did fine...she held still, didn't cry (she's pretty tough) and did everything she was asked without freaking out.

She just doesn't have much doctor time under her belt, and the times she has been have been traumatic. Just vaccines, and the emergency room (where she learned to dislike people in white coats, she was 18 months old the first time). She has never really been sick. So she really equates going to the doctor with pain. She was pretty petrified of going into the "giant donut" (CT machine), we stood there and looked at it and talked about it for a long time before they came to get her.

The fear caused her to really focus...she knows where every little bell and whistle on the thing is. She was telling me about the speakers and the transparent parts and how they are only transparent part of the time, etc, etc. She isn't really a techy girl.

Many thanks to Leslie and Allyson who went into the giant donut before us and warned us about liquid Barium!! The resources around us continue to astound us (ooh, that rhymes).

Going Vegan

One of the things the doctor told us to do was to have Aspen eat a liquid diet supplemented with only fruits and fat, no meat, no dairy. The first days have been difficult, finding things she can eat and wants to eat. She doesn't have much appetite, so things have to sound really good to her. The first few days only the guinea pig was loving the new diet...she fed him everything she wasn't interested in.

Uncle Dave called and suggested Popsicles...we have gone through LOTS of Popsicles. I associate Popsicles with hot days in summer as a child. I wonder if her memories of Popsicles will be of being sick?

She is losing weight rapidly and I am feeling a sense of urgency to feed her something that is high calorie. Uncle Dave also says Edamame from Costco is the way to go, that the cousins love it!

Uncle Dave and Aunt Kelly are unofficially in charge of thinking of wonderful vegan things that kids will eat, so far, so good...we really appreciate someone else taking this part of the research and thinking. There is so much research and thinking and rethinking to be done! We are wide open to other ideas...anyone???

A quick trip to the grocery store for Aspen today took an hour. It's good when she goes along, she can see things that look good to her on the shelf and read the ingredient and discover for herself if she can have them. I want her to be in control of her body and her choices as much as possible, that way family can just be the support, not the bad guy. It also means she is picking things that sound appetizing to her and she is in control right now. There will come a time when that might not be the case and any control we can give her right now is good.

It does mean that yesterday she wanted some chocolate gelato as a reward for surviving harrowing medical ordeals and it made her feel lousy and she didn't sleep well last night and hurt into this afternoon from her indulgence. But it was her choice. She probably won't choose that again.

She is making a list of things she wants to eat when she is well. It's something to look forward to. So far it is: cheese tortellini with alfredo sauce, burritos, macaroni and cheese, french fries...kid stuff. Her diet is very adult now, I hate how this whole ordeal steals part of her childhood away and causes her to grow up quickly.

Beginning The Journey.....

It all started with what we thought was the flu. Aspen had a stomach ache and a fever and walked around bent over like a little old lady. After 4 days, the fever passed, but the stomach cramps continued...she endured much motherly mashing to be sure it wasn't appendicitis. The pain was way up high, and on the left. After a week of this, I really thought it should be gone, so we took her to the doctor who mashed around on her tummy again. He thought perhaps her stomach lining had been irritated by the flu, and started her on Zantac and ordered a bunch of blood work.

He called first thing the next morning to tell us her amylase levels were elevated and that the problem was with her pancreas, she had pancreatitis. Like most parents I would guess, we ran to the internet to look up was terrible doom and gloom. We quit looking and began talking. We weren't really worried, we just knew it could get serious down the line.

At what point will we seek treatment? If there is a 50% chance, 75% chance or 85% chance of recovery? At what point do we as parents trump her choices about her own body...if she doesn't want to be treated any longer, do we say, "Sorry, you have to do this?" Ultimately, she is not ours to keep, she is on loan from God and it has been a privilege to be able to guide her journey through life to this point.