July 19, 2009 Sorry for not posting over the weekend; had a hot date with my husband on Friday night and got home too late to write. Then, on Saturday, I was just too tired after the hot date the night before and had to go to bed early (that’s so sad!). We’re not sleeping so well again here at the Page house. Tanner has been doing so well that we decided we no longer needed to sleep in her room with her; but after six weeks of doing so, the transition is, expectedly, a little rough. I think she’ll do fine, eventually, but it has thrown things off for the time being and she keeps waking us up at night to fulfill various attention-getting requests… I’m cold, I’m thirsty, my tummy hurts, I lost my stuffed animal, I’m afraid… you get the picture.
My Aunt Debbie came in from Huntsville, AL, on Friday and stayed the night with us. John and I got to go have dinner at Red Pony (aka, the hot date)… alone… sigh. It was lovely. The kids loved seeing her and we had a nice visit. So sweet of her to do that for us.
Saturday morning, spur of the moment, we decided to take the kids to the zoo. Tanner’s counts were good this week and the docs are always emphasizing that outdoor stuff is more forgiving as far as germs go, so we decided we could just stay out of the crowds and off the beaten path. Unfortunately, the weather was so unusually pleasant for July (70 degrees!) that everyone else had the same idea. We managed to stay away from everyone for a while, but left after about and hour or so and vowed to come back the next morning to see the other side of the zoo (Jake was desperate to see Tigers). We did go back this morning at 9 am when all the good Christians were in church, which was much better and we had a great time. Even wiped down a carousel cheetah with a antibacterial wipe and rode the carousel. And, of course, saw the Tigers. Jake went to bed chanting, “Lions and Tigers and Bears, Oh My!”
I got away on Saturday to have a pedicure with an old friend I haven’t seen in a while. It was great to catch up. I confessed to her that when I used to get out by myself I had a million ideas about what I could do; now I just go to the grocery store. I can’t think of anything to do; nothing seems very important anymore. So, she promised to make me leave the house every once in while for something fun.
With the exception of some stomach pain and nausea, Tanner continues to feel really good. This month is a gift and we believe we will look back on the Consolidation treatment phase as a good time for us. We know we have harder times coming, so we’re milking this for all it’s worth.
The physical therapist came on Friday to evaluate Tanner. As we have noticed, she definitely has weakness in her legs, particularly her quadriceps when her legs are bent and her hamstrings with legs both bent and straight. Her right side is definitely weaker than her left; no one is certain why this is, but it was definitely the more painful of the two from the leukemia at the very beginning. It was very eye-opening to watch as she asked Tanner to skip and she just couldn’t make the right leg do it, and when she asked her to stand on one leg and then the other. She was able to stand for 26 seconds on her left leg before we just told her to stop. Then, we gave her the best out of three tries on her right leg, which was only 6 seconds… yikes! Scares me to think that the leukemia could have caused some permanent damage in that leg.
The good news is that the therapist felt like she was making great gains, doing well in comparison with many kids at this stage of the game, and that the activities we are already doing (biking, swimming, dancing) are all therapeutic in and of themselves. She suggested that we do home therapy with her for the time being and save our PT visits for a time when she may need them more, like when she is taking more vincristine. She is coming back next Friday to teach us a home program, which is based on play activities, and will check in on us by phone for the next few weeks.
We continue to have a really hard time with Tanner’s behavior. We are no strangers to challenging behavior from her… anyone who knows Tanner knows that her huge personality doesn’t come without it’s drawbacks. But, she is definitely pushing us to our limits. There is no punishment that she won’t take, at this point, to be able to have a fight with us; and she is picking fights at every turn. I can’t help but believe that fighting with us allows her to release some of the anger she is feeling but doesn’t know what to do with. We’ve decided to stop basing our discipline on punishment alone and just stop responding to her invitations to fight, a strategy which is very difficult for me. I’m also going to contact the social workers at Vanderbilt and ask how we can help her express some of this anger in a healthier way.
It’s so hard to know the right thing to do in this situation. It’s always hard, as a parent, to feel like you’re making the right decision, but this is definitely uncharted water and I feel more unsure than ever before that I’m doing right by her. I want her to know that the rules still apply, even when you’re sick, but also realize that I can’t even begin to understand what she is going through. Even though it feels like the whole family has leukemia, we don’t; she bears that burden alone.
It’s been a fun weekend, but also a trying one. It’s so sad to mar this time where she feels so good with all this discipline, but it’s just necessary. Ugh, ugh, ugh.
Pray that we have the patience to deal with her with firm love and understanding and that she finds a way to express herself to us, or someone, so she feels better.
Love,
Beth