November 16, 2009 We continued our quest for uncrowded playgrounds today… neighborhood playgrounds are almost never occupied, just in case you ever need to isolate your kid who still feels good enough to play! Today we went to Liberty Downs playground in Brentwood. We had a contract on a house in that neighborhood when Tanner was diagnosed, which we let go, of course. It’s one of my favorite neighborhoods, though. The whole thing feels like a beautiful park.

They have a nice playground next to a beautiful lake and a little stage where they hold neighborhood events. There is lots of space for running and some beautiful trees, so it’s one of our favorite spots. Today, though, it almost proved too much for Tanner.

To get there, you have to park at the top of a hill and go down the grassy slope to the lake and then down another steep hill to the playground. As soon as we got out of the car, Tanner cried out in pain – her left leg. She wanted me to carry her, but I encouraged her to walk, hoping it might work itself out. It was most likely nerve pain, combined with some pretty marked muscle loss from the most recent steroid bout. She limped down the hill with a grimace on her face, but seemed to be moving a little better at the bottom. She began running, which is once again a real struggle for her. She can do it; it just looks very awkward and like she is running against a current that keeps her from getting anywhere very fast. Her legs don’t seem to really cooperate with the will behind them and her head jerks and bobs with the effort of trying to get her body to do this simple thing that she would like to take for granted.

She fell twice while trying to kick the soccer ball. I had to lift her up into and out of a low fork in a tree she would have scaled easily before the leukemia. She struggled mightily, and with typical Tanner resolve, to get up the “rock wall” on the playground that Jake climbed up in seconds. She fell again, dancing on the stage and scraped her ankle. And, finally, when we left, she had the two big hills to face in order to get back to the car.

Normally, I would have given her a piggy back. I’m all for using play as therapy, but she was beat from an hour of hard play and it’s about 125 yards, mostly uphill. But, I had two soccer balls and some coats to carry. So, I put my hand under her upper arm to help support some of her weight up the first hill. She worked so hard. At the top, she stopped, hands on her knees, to rest. She looked back at the hill, panting, and said, “Corinne could just run right up that hill.”

Corinne is Tanner’s best friend and Tanner is right; she could have run right up. She is strong and athletic and full of energy. While I would pit Tanner’s energy against almost any kid, her physical strength has waned to the point that I wonder whether she will ever fully recover from the damage the drugs and the steroids are doing. Her upper legs are so thin, she looks like one of those starving kids in Africa; there’s no muscle there.

She has never fully gained her physical strength back after the first round of steroids back in June. She gained a lot back, mind you, and surprised me with what she was able to do. But, it was never normal. Now, this second round, combined with the 10-day stint in the hospital, has put her almost right back where she was before. I worry what the five-days-a-month of steroids that she will take for the next year and 10 months of Long Term Maintenance will do to her. Theoretically, she has the rest of her childhood to get strong again, but I still wonder what 2 ½ years of not being able to use her body to it’s fullest will do long-term. Not to mention the possibility that the long-term steroid use can cause avascular necrosis, or bone death, which can have a permanent debilitating effect (one of our leukemia friends is dealing with this now).

It’s scary and seems unfair, but I try to remember this: someone (I don’t remember who) told me that they knew someone who had leukemia when they were young and that it was a miracle this person survived at all, because leukemia at that time was a “death sentence.” It’s true. Even just 10 years ago, Tanner’s chances of beating this would have been notably different.

So, I try to ask myself, “If a doctor came to me when Tanner was diagnosed and said, ‘She will die within a month without treatment, but the treatment is very tough and can have some lasting side effects,’ what would we choose?” Of course, we would choose the opportunity for life. If it means she’ll never be a super athlete, it’s still better than the alternative, right?

I’m trying to learn to be more grateful for the treatment. For the chemo, the steroids, the plethora of medicine. It’s so easy to despise, but really, it’s a lifesaver… literally.

Love,
Beth