Monday, April 19, 2010

Still on the mend

Amanda woke up full of energy today. Ocassionally there are moments where I have glimpses of the energetic person she once was. She breezed through some homework, headed off to school an hour earlier, and seemed quite happy. A long ago friend visited this weekend (sorry Ty, I forgot to pull out the camera). It made Amanda's day. His family made her a photo album of good times past. She's carried the album around all weekend. She's been talking a lot lately about missing her old life. She seemed to really need a walk down memory lane.
This picture is not the best of her, but shows off her sickly pale skin blending into the paint a few days ago. I think I'll ask the paint company to rename the color to "pale cancer." She looks much better today. I wish I could say the same for the rest of us as we continue to try and rebound. Sometimes I look at Scott and myself and think that we don't even closely resemble the same people. There are times I don't recognize myself in the mirror anymore from the fatigue and stresses of life. I know Scott is tired too. It just come with the territory.

As promised, here are some pictures.

Easter celebration - decorating eggs with Rick and Carol. None were eaten, but plenty were decorated.

Egg hunt at Grandma's house with the cousins. It was much nicer having it on Easter rather than Halloween.
Will and Scott doing their nebulizer thing.

It's easy to lament about fatigue and stress. I find a lot of healing and happiness with our little guy. He just discovered his tongue. He thinks it is the coolest thing ever. He sticks it out all day long, and it's really long. He's a man of many expressions - see for yourself how he just brightens the day.

Wednesday, April 14, 2010


I had a bunch of pictures to post but my computer is unwilling to cooperate and I don't feel well enough to take it on. An IOU is in order.

We have been non-stop sick at our house. I am sick (literally) of viral bugs. And the last few have been really bad. Both Will and Scott have been on nebulizer treatments, bronchitis abounds, antibiotics have been dished out, and the night is rattled with the sounds of coughs and the booger sucking machine. Whatever we've had, you don't want it! Now that we are trying to integrate back onto society the inevitable viral bugs are creeping in despite our best efforts. Amanda had about two weeks of coughing and complaining. Whenever she turns the same pale color as our wall paint color, I know she's pretty sick. Amanda has missed more school in the past month than in the past four months. Her accelerated school program doesn't slow down for cancer. She has moments of struggling to keep pace, but now that she is feeling better, she just glides through the work. She is starting to act like herself again, the sign that her body is on the mend.

I recently gave a talk in church on grace. I needed extensive study to feel confident in giving it. And despite the hours devoted to it, I can sum it up in one experience. A few days last week were devoted to ongoing fevers between all of us. All but one of us. Amanda never ran one. By all logic she should have. She is the most vulnerable. If she had run a fever, Scott and I would not have been well enough to take her in. I am grateful for God's tender mercies and for prayers that invite them in. It is so hard to take care of sick kids when you yourself are sick and overwhelmed by numerous responsibilities. After looking at the thermometer numerous times in disbelief I know that a little heavenly help is sent to get us through all of this.

Sunday, April 4, 2010

The Face of Chemo

"I've got a long way to run." - Collective Soul

Amanda continues with her monthly chemo treatment, daily oral chemo drugs, knock her out weekend chemo, and 5 days a month of "I don't feel myself" steroids. She had a great clinic day on Wednesday. We were in and out in a hour. Despite a great clinic day, she is giving us plenty to worry about. She has a bad upper respiratory infection and chemo isn't going to help her get over it easily. Her doctor thought she was healthy enough to push through, and her counts were surprisingly high. Her sinus and eye infection didn't bring her counts down as low as we thought. She developed an allergic reaction to the eye drops and ended up with a very swollen eye for several days (and a very ornery demeanor to match). So to be sick on top of it, needless to say, she is run down. Very run down. I'm just crossing my fingers that it doesn't turn in to pneumonia. She has lamented several times about being tired of being sick. She has every reason to complain. Unfortunately, she has a ways to go still.