Ughhh!

Spoke too soon. She had one of her chemo migraines last night. We are once again reminded that we are still fighting cancer and are not done yet.

Love her dearly, love the Packers, but......

It is two steps forward, one step back right now. Amanda's screaming headaches are becoming a thing of the past. For that, I am EXTREMELY grateful! I think its a lot easier for her to handle chemotherapy the healthier and stronger she gets. She's had one migraine in the past 4 months but it was a normal one that we could get on top of quickly. Her lumbar puncture last week was one of the easiest. But....here comes the one step back.....she is developing extremely itchy skin and bone/joint pain during her treatment rounds. Add that to roid rage and it makes for one very exhausting week of walking on eggshells for the entire family. Love her dearly, and I feel sorry for her, but she drove me crazy last week! It is really a hard process to get through. I was so happy to see her bounce back and off to school today as I find myself pretty worn out from taking care of her right now. I suppose after two years of going at this some burnout is bound to happen.

Will had his scope. We are very relieved to have several tests come back normal. As it stands the kid has some wicked heartburn that is the culprit for his weight loss. I'm finding that balance of foods and medication dosing that helps treat it. He's gaining weight and developmentally on target. We will still have to address his short stature if he doesn't gain enough (he's the size of a 7 month old at 16 months of age). Despite this, it is a relief to have his medical problems coming to more of a close. It will be a happy day at our house when we can manage going a month without a medical bill!!!
I do thank those that try and give Amanda some much needed attention during her treatment rounds. It is greatly appreciated.

97

I just gave Amanda her last dose of steroids for this month. It's always a sigh of relief knowing that it's the longest stretch of time before the next dose. Despite the screaming and itchy skin they induce I'm very glad she's on them. She was too sick to have a lumbar puncture at clinic this week. She's had a terrible cold for three weeks now. I think the steroids and antibiotics are finally helping her kick it. Much to her displeasure she's pretty isolated right now. She can't risk getting sick and being put on more medications. I filled her pill box for the week. It totaled 97 different pills to swallow, and that doesn't include IV chemo or pain medication. Her body's got enough to handle right now.
She will gladly report a very pleasant Christmas. We were very fortunate to avoid any trips to the hospital. She especially enjoyed a surprise visit from her first grade teacher on Christmas Eve. They enjoys some crafts and games together. Christmas morning was a real treasure to share as a family.
We really appreciated the donations made to Primary's during the holidays. Amanda was ecstatic to get a club penguin she has wanted. It really distracted her from the routine of the hospital. I have to point out the toy dog she is holding. She got it for Christmas as part of a pet hospital. The little dog is on IV's and is diagnosed with cancer. It's very cute. She has so much fund taking care of her sick pets. She keeps telling me she's going to be a doctor when she grows up. I believe her.

Based on the number of questions I get about Will's health I'll give a quick update. He's growing, but not enough. There are still foods that cause gut problems. When his gut is giving him grief it's difficult to get him to eat anything and gain enough. He will go in for a scope later this month. Hopefully some biopsy's will help answer why foods are bothering him. From there we'll try and narrow down which foods they are. In the mean time, I have to feed him everything bothersome to try and inflame his bowels in order to get a more accurate diagnosis. It's already making for more than one ornery child at our home.

Fabulous

"How's Amanda doing today?" - Dr. B.

"She's doing great. I've been so distracted by her brother's health that I haven't even noticed how amazing she is doing." - Me
"Doesn't it feel great to say those words?" - Dr. B.
"Yes!!!" - Me

Amanda is doing fabulous! I've been do distracted by Will's health that I really hadn't even noticed. She went an entire month without a migraine. She hasn't missed school. She's keeping up with her schoolwork. She even started art lessons. Having a meaningful creative outlet has boosted her moral significantly (thanks for getting it going Carol). She still has her Methotrexate crash on the weekends and her five days of monthly treatment are still very hard on her and the family. But overall, she is much better and we are starting to see part of our daughter coming back.

Primary's was so delightful to visit this last week. Amanda and I walked around and saw all the amazing Christmas trees and decorations. She rode in the elevator with Santa Clause. Donations and gifts for children were flooding in the doors. All of the staff were upbeat. Nothing radiates the Christmas spirit the same way as a children's hospital. It is charity at it finest.

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.