Thursday, March 25, 2010

Catching Up

First, I must apologize for the extended absence. Life has felt a bit more normal lately. Blogging reminds me of cancer - thus the inclination of avoidance.

Second, I must thank the many people who follow this blog, the many new people who find it (I don't know how, but welcome aboard), the people unknown to us , and the many people that continue to show support and encouragement. Thank you!

And third, the most important part, updating how Amanda is doing. I must say, whatever immune system she has left is working like a champ! She really is doing so well that I am amazed. She's super cautious at school and whatever she picks up from her sister (the biggest germ culprit) she's done quite well at fighting off with no fevers - which means no emergency trips to primary's! She finally succumbed to a bad sinus infection a few days ago. It went rogue and spread very quickly into her eye. So she's been out of school this week and is resting a lot. Grandma sewed her an eye patch and she is milking the sympathy of her plight to the best of her ability.

She has been keeping up with her drinking. It is making a HUGE difference with her overall health. So to any other cancer fighters out there, stay hydrated! It helps a lot. I figured out smaller water bottles are a lot more kid friendly and motivating to drink. Her teacher is helping with reminders, and she earns a pretty decent allowance for empty water bottles. Her shopping list keeps expanding, which increases her motivation. Getting it to happen takes some effort, but it's working.

She is having a lot of sleep problems again, mostly during the first five hours after going to bed. There are nights she's up till 1 in the morning, or she wakes up 6 times in a jittery agitated state, or she talks in her sleep and argues that she really isn't asleep. Waking up means crying and complaining that she can't fall asleep or lamenting about being alone. We started to notice an increased pattern on her antibiotic nights. She takes a weekly antibiotic to prevent pneumonia. Again we got the "that's not the normal side effect" lingo from her doctor. She's developed quite a list now. Deviating from the medication is taboo with a curable cancer so we just changed the dosing schedule. It has only helped slightly. Perhaps when her infection clears up it might improve a bit more. I'm running out of ideas. Alas, a good night's sleep is just not meant to be at our household. As a result of the insomnia anxiety she has developed quite the bedtime routine. Her bedroom illuminates from numerous nightlights, she now has to have the radio on, the hall light on, a Kleenex up the nose when stuffy, the song "You Are My Sunshine" sung, and her clan of proxy stuffed animals must be in just the right place. I call them proxy because I finally figured out they all represent the people most important to her. She "adopted" animals from Will and Erin (more like stole them). The rest were given to her. I think each important family member is represented somehow. Cute, yes. Cute after my 6th visit in her room telling her go to sleep, not so much.

Friday, March 5, 2010

Hair, Beautiful Hair

Amanda came up to me recently with a comb. I asked her, "What do you want me to do with this?" With surprise I realized that after 8 months of baldness, she once again has hair to take care of. We both commented about how we'll miss her scalp. She was very cute bald. Her new hair is thicker, darker, and has a bit more wave to it than the old. We'll gladly take it.