Friday, November 26, 2010


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!

Friday, November 12, 2010

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.

Wednesday, November 10, 2010

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.

Saturday, November 6, 2010


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!

Wednesday, November 3, 2010


"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.