GRATITUDE

Crazy hair day at school.

Everyday hair day.

It's nice to have hair again.

We are still reminded that Amanda has Leukemia. The side-effects vary from day to day. Sometimes her hair randomly falls out, right now it is growing in again. Sometimes she gets bowel problems. Other times she has insomnia. Her face is bloated from the long use of steroids. Headaches are still quite frequent. She continues to have worse than normal side-effects to certain drugs. Scott and I just about pulled out our own hair out of frustration during her last treatment round because she was so ornery. But.....she hasn't been to the ER since June. She hasn't been hospitalized this past year. She's keeping up in an accelerated school program. Even though she's getting tired of chemo and it's hard side-effects, she is the healthiest and happiest she's been in two years. That is something to be grateful for!

Will is making a lot of progress. He is tolerating Nestle Boost. He's more active, alert, his bowels are acting more normal, and he's sleeping better. I still have not found the balance of foods that are bothering him, but I have some ideas. I must thank my sister-in-law for the helpful advice. When you are a bit lost it is wise to follow the footsteps of others that have already gone down the path (how I wish I'd figured that out sooner). We'll follow-up with Will's medical team in a few weeks. I am far more encouraged that we are not facing major medical problems. And that is something to be grateful for!

And so I don't forget Erin.....She said a very articulate and long sentence yesterday. For a kid that screamed more than she talked two years ago, I am amazed and grateful at the progress she has made. Once again, that is something to be grateful for!

The Medical Mystery Tour

When watching mysteries I'm a bit clueless with figuring out who-done-it. Given that my ability to figure out a good plot is limited, I cannot expect to figure out what is causing Will's failure to thrive. We still don't have a good diagnosis for him. Each specialist seems to have their own theory and way to treat it. We're still among a lot of lab work. A lot of problems have been ruled out - no brain tumor, his liver is not the culprit, and whatever happened in-utero is not what is currently contributing to his growth problems. We are being told it's a nutrition problem, but we don't know what kind of nutritional problem. For now Will is to try a greater variety of protein based formulas. It could be as simple as just figuring out food intolerance's. So, if he reacts poorly and doesn't gain weight the plan is to do a scope of his gut next month. Growth hormones are on hold until the gut issue can be resolved since he has to be absorbing his food properly in order to grow from it. I'm a bit discouraged with the long process this is turning out to be and watching him go through so much discomfort. But it is manageable. Watching all the kids go in and out of the hospital this week reminded me what we've already been through and helped me reflect that our medical drama could be a lot worse.

That's a lot of beads!

Amanda had chemotherapy today. All of the staff were surprised at how good she looked. Her psychologist said he didn't recognize her because she's grown so much and looks so much healthier than the last time he saw her. Her counts are good, her health is currently stable, and she seems to be handling the chemotherapy well.
Amanda is eager to show off her Color's of Courage necklace. Each bead represents a specific action accomplished with chemotherapy. It includes such tasks as each steroid round, each time her port is accessed, each hospital visit, lumbar puncture, emergency room visit, etc. As you can see, she has aquired A LOT OF BEADS!!!! She is wearing it with pride.

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!