Saturday, October 23, 2010


"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 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

Friday, October 8, 2010

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!

Saturday, October 2, 2010


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.