Complicated

Amanda is doing well, so Will is going to steal the spotlight for a bit.

Will went to the Endocrinologist. Her exact words, "He is complicated!" Her jaw about hit the floor when she read his medical history. She couldn't believe that he survived and that he is doing so well developmentally. She fortunately did not diagnose a major disease or disorder. Rather his problems are a result of him not getting what he needed in utero. He'll start growth hormones after an MRI next week (a brain tumor has to be ruled out, but is not suspected). She talked about how growth hormone is produced and processed. She indicated that the low growth hormone is causing malabsorption of food, which would explain the many barf covered loads of laundry I've done this week and his weight loss. All of this stems from the liver. His liver took the brunt of his growth restriction as an infant. It was the lingering problem when he was born. And it is starting to make sense that it is what may be causing a good portion of his failure to thrive. It's a relief to start getting some answers. Everything that has been suggested so far has just made him more sick and miserable. The growth hormones should help him grow and digest his food better. We will still follow-up with a GI doctor to ensure that there isn't more going on. And I'd better come up with a good distraction for giving his daily injections in the butt. He's going to need them for 2-3 years, but don't tell him that!

SUPERHERO

"When you're stumbling

it's gonna take a little time
to make it to the other side
so don't miss the diamonds along the way."
- Sheryl Crow

Superhero was the theme among my girls for Halloween. Even their favorite dinosaurs joined in. I was glad Amanda was able to get out. Weekends have become a lot more challenging for her since her Friday night Methotrexate dose was increased. She's wiped out for most of Saturday and Sunday. I was happy to see her determination to be able to get out and enjoy herself so much. It meant a lot of naps and pain medicine. But she had a really good time. Her superhero costume seems so fitting.
I got such a kick out of Will in his costume. He waddled just like a penguin from all of the warm layers of clothing. It's hard to keep him warm because he's so skinny. And unfortunately, he is loosing weight. His doctor's are concerned. He tested negative for food allergies, and this means a huge expansion with his diet and a relief on my part (been there, done that!). But he's had allergy-like symptoms for some unknown reason. The doctor is leaning towards an inflammatory bowel syndrome. It's apparent something is wrong. With every increased food item he seems to struggle with vomiting, gagging, and a lot of indigestion. We'll meet with endocrinology tomorrow and the feeding clinic/GI doctor next week. I'm hoping between these visits we'll finally get moving towards a better diagnosis and treatment for him because what we are trying now isn't working for him.

Extremes

"What goes up must come down." -Blood Sweat and Tears
Amanda had, dare I say, one of her best recovery's from a lumbar puncture last week. She did puke in the car on the ride down from nerves (mental note to self, I took the vomit bucket out way too early!) But she looked really good going into the procedure. Now keep in mind, while she is asleep they stick a needle in her lower spine to extract cerebral fluid and replace it with a lot of bright yellow chemo (I've unfortunately seen the big syringe). It is not the easiest of chemo treatments. But she woke up looking pretty good, not groggy and uncomfortable like usual. She was eager to eat, play video games, and didn't need to sleep it off for as long. She was more active at home and eager to get out of the house, as you can see with her creative method of packing her hydration pack around outside. Everything went as well as hoped for after a lot of trial and error. A few days ago she had a 24 hour stretch of acting like herself again. She was bubbly, VERY talkative, friendly....everything that Amanda was before cancer. She has not acted like this for that long in over two years. It was wonderful to experience again. It was such a good reminder that once her body heals, her bright spirit will dominate once again.

But......there always seems to be a but........today I came home from a lovely luncheon with a friend that I haven't seen in about 10 years. Amanda had that look on her face. The headache hit for several hours with crying and cringing, the vomiting lasted for four rounds, and she looked a terrible shade of green. The reason she was doing so well a few days ago was because her blood counts were too high. She's had such a big growth spurt that all of her chemo doses were increased last week and today it hit. Despite a rough day today, the glimpse of her acting like herself again brought a lot of encouragement that makes bearing all of this a bit easier.

thought I'd share some pumpkin pickin pics

Growth Spurt

I can't take credit for the great pics. Dad, you can experiment on our family any time!

Amanda woke up today and looked like she's grown two full inches. She has been eating me out of house and home recently and it finally kicked into her height rather than her waist. She is changing very rapidly into a young tween. She doesn't like the changes. She wants to stay little forever. But her bright mind and rapidly growing body are taking off whether she likes it or not. I looked at a picture from when she first started treatment and it is just a faded memory of what she looks like today. I know when she was diagnosed that we were ending the little girl phase and she'd emerge as a beautiful teenager. We are right on track.

She's had a great week. She looks good. She is happy. She has a lumbar puncture next week and we will quickly be reminded that she is still being treated for cancer. She has made the connection that these procedures make her feel yucky and are no fun. I reminded her that we are on the home stretch. We are counting down the few that are remaining. And I reminded her that we finally we have a good game plan to help her be more comfortable. She's really come a long way in handling it all better as I can tell she is more confident.

Will met with his feeding specialists yesterday and they gave us some good ideas for helping him gain weight. I finally found a formula that he can tolerate - despite it's $$$ price tag (just google Elecare and you'll choke!) One can only lasts a few days. But he is well worth it.! We're going to start treating him for reflux and have special diet and eating instructions in place. If he doesn't gain weight within a few weeks we will go back for a bunch of testing. The goal is to avoid a feeding tube. Knowing personally how miserable they are, I am VERY motivated to get his weight up. We have some physical therapy ahead and several follow-up appointments. Because he's doing so well developmentally he has a very good prognosis. And knowing that eases my mind greatly. Now it's his turn for a growth spurt!

Tired

I know I have cute children. Some days I have to work harder at reminding myself of this. On the more challenging days I sometimes find myself wondering how I would react if I was observing them for the first time. It is then much easier to smile and be amused by their strong personalities and unique quirks. I find myself needing to do this when overwhelmed and tired, which has become the new norm for my life.

I've titled this "tired" for both Amanda and myself. School is in full gear. Keeping up is a challenge. After juggling and experimenting with activities and what she can keep up with, I've had to remind myself why we keep it simple. The headaches and vomiting have increased. It is her body's way of letting us know that it is exhausted, or fighting off viral bugs. There is no running to piano lessons, soccer, or gymnastics at our house. There are few if any movie outings or days at the park. Amanda is rarely involved in running errands or heading out to the store. All energy goes to school, homework, and a little bit of socializing. That is how it will stay for at least another year. She doesn't always know what she is missing, but it is discouraging when she does. It is just a season of our life. Seasons eventually change.

I've been on a reading kick lately. I really enjoy reading about scientific discoveries and research. I've read some great information pertaining to childhood cancers. I could write an entire blog entry on the interesting facts I've learned. But what stood out was the section on caretakers and the toll it takes on them. Particularly that it is quite common for parents to try to diminish to other people how hard it is and to sugar coat how they are doing. I am the poster child for this. Honesty opens up vulnerabilities. But lately I find that I cannot hide how tired I am. I have been for quite a while. I even switched to glasses from contacts to cover up the chronic bags under my eyes. Caring for Amanda while I was sick was physically exhausting. I've not had a recovery period. There were days I found myself crawling up the stairs asking God for help to make it up because I was too weak, only to find myself lifting her and bearing her weight because she was weaker than me. It was hard. Really hard. Then Will came and I found myself waking up every45 minutes to 2 hours for over a year. That's just the physical exhaustion. The emotional stress and worry have been great. Some days I feel that I will crack under the pressure. I am not super human. I still have and need a lot of help. It is easiest to open up to close friends and family. I appreciate their listening ears. Often I am asked "how do you do it?". The answer is always the same - I just do. I have to.

Will is starting to sleep better. He stopped nursing and for some odd reason that helped. But in doing so, he started loosing weight. I think it's because he started walking, but regardless he is heading the wrong direction on his growth chart. We're hoping to meet with some specialists next week to figure out what to do. I can't get him to eat or drink enough. We'll just do our best until the doctors can give us some answers.

"It smell's like a poptart in here"

.....says Erin to the furniture store clerk while shopping for a new bed. The comment has nothing to do with my blog entry. I just needed a good icebreaker to distract from my neglected, long absence. I do thank anybody still reading this as my dedication has waned a bit.

I am constantly asked how Amanda is doing. The answer is always the same...it depends on the day. It seems lately that she is starting to have many more good days than bad. Throwing up in front of everybody at Grandma and Grandpa's 50th anniversary dinner, well, that was a very bad day. It just depends. But overall she is more energetic, stronger and healthier. She is sleeping much better. She is also back at school and keeping up with a full day. I'm glad to have her back at school, even though it's reminded me of germs and the fear of fevers. The summer was somewhat challenging. She thinks she can do more than she really can. The heat was hard on her and it triggered more migraines, so a lot of down time was forced on her. She has every episode of Phineas and Ferb memorized. I was glad to hear her get more excited learning about the water cycle rather than the adventures of Perry the Platypus.

Anybody want a BIG castle? It will only take up half your basement - but keeps them busy.
We enjoyed a quick trip to Park City. A hotel swimming pool and the alpine slide were the highlight of the summer.
Will celebrated his first birthday. I can't believe a year has already passed. Birthday's have new meaning at our home. They are really reason to celebrate and be grateful for what we have. We find ourselves back in the throng of medical appointments again. He's not gaining weight like he should. When you have a one year old that eats like a six month old and seems to have a lot of food aversions, it becomes a bit of a problem. We're waiting to get in to an endocrinologist. I joke with Scott that we've been to every clinic on the first floor of Primary Children's between our three kids. Looks like we're expanding to another level! It's yet another challenge, but one worth taking on. We're totally in love with this kid!

Relay for Life Central Davis 2010.mp4

We were sent a link to this post on Youtube. Pretty cool job done by the people who put the Relay for Life together. You will see some familiar faces on there as well.