Re: changes after chemo .. or long illness

[Guest guest]

I love hearing about Jan. Her story is always awe inspiring. Thank you.

Dolezan

[Guest guest]

Jo,

I can just give you one more parent's experience. Leukemia and chemo

really hit our kids, both physically and mentally. The physical of

obvious. After chemo there is little left of the fitness of the

remaining muscle which active children and adults have. That is

reversible, but it takes a lot of doing. There is also a lot of

emotional trauma from both pain and fear. The modern name for the

result is PTSD, and that takes both time and often help to overcome.

Like , but a lot older, my Jan was an athlete. She was a good

gymnast and sometimes the best S.O. gymnast in the state. She was a

swimmer and skier. She loved shooting baskets and was better at it than

her two brothers in spite of her being short. She hiked and even had

climbed Half Dome in California.

Jan was in her mid 20's when the trouble began. First was a very rare

autoimmune disease that had her in the hospital for three months while

they searched for what it was and then for a cure which was only tagged

experimental. It worked and she came home to a bed downstairs where she

could continue to get care, largely from her parents. We started with

walking. First just to the door across the room. Then to the bathroom

and to the front door and then outside to the end of the drive. Within

a week or so, it was the mile walk to the end of the road and back.

After that we were hiking trails in a nearby park.

Simple treatment, but the same thing Janet administered to me after a

hernia operation. Her job was to get me back on my feet and she did it.

Then came AML and another long hospitalization. In the hospital we

would take walks around a loop on the cancer floor with her pushing her

IV tree. When she got home, severely weakened, we did the same physical

treatment. She recovered and her strength came back. She grew her

hair back and wore a huge smile all day as bridesmaid at her brother's

wedding.

Then came a stroke which immobilized her left side and had a hit on her

speech. We went back to the same treatment. Her walking has recovered,

but she still has some balance and confidence problems on steep stairs.

Her speech isn't as clear as it was, nor is her handwriting as good, but

that is small.

The AML came back. She had chemo, followed by a six week wait until her

bone marrow transplant. Her brother was donor. In that time she built

back to being able to hike four miles in hilly terrain. The BMT was the

big set-up. The tiny wing with five beds for BMT patients had an

exercise spot with a treadmill. She used it only on the day she

arrived. When she was finally back home, she appeared to be declining,

losing a pound a week for about three months, but she was back to

walking for exercise. Then the outlook turned around and she recovered.

No, gymnastics are not in the future, but she is back to skiing, looking

almost like nothing has ever happened. I'm hoping to get away with her

for a few days later in the winter and ski hard for a couple of days.

She still shoots baskets, but not regularly. She needs a place she can

practice whenever she wants. Most weekends she hikes both Saturday and

Sunday, doing 3 - 4 mile hikes. She prefers to hike alone because she

likes to go slowly. She picks the routes and tells me in case I have

reason to come find her.

Your story will be different, but maybe you can start walking with him

... and perhaps even get to running. Getting the muscles toned will help

a lot toward him getting back to sports. I think that sports are a

wonderful place for our kids to develop a sense of achievement.

Rick ... dad to 37 year old Jan .. now on no medications at all and 5+

years post transplant