Tuesday we met with Leukemia Lymphoma Society (LLS)
regarding a fundraiser they are attempting. As "Girl of the Year", Charly
and I attended and joined the "Boy of the Year" and his mother.
Already, the boy’s name is gone... it starts with an "A".... I'm
80% sure it's Ashton... and his mother is Krista. I'm positive about her
name, because I said, "Nice to meet you Kristen" and she corrected me,
"It's Kris-TA". That's great, I needed the emphasis. I
like when people do that. It takes me a while to learn names. I'm REALLY bad
at it.
Like Charly, Ashton was not very vocal. He is 8-years
old and is being treated for Lymphoma. His total treatment will take 5
years to complete. WOW.
We met with Bryan Fletcher. He is a cancer survivor
and an Olympic athlete. He was diagnosed at age 4 with ALL, the same kind
of leukemia that Charlotte has. He relapsed around age 8, and underwent a
then experimental treatment. The
treatment was ultimately successful, but he did suffer a lot of trials from the
treatment – he mentioned suffering a stroke. He started ski jumping while
undergoing chemo, and said skiing was very motivational to him. He had to
travel to Denver from his hometown in Colorado and would have to stay for a
week or two at a time. He remembers thinking, "I will do whatever the
doctors told me to do, exactly how they tell me to do it because I just wanted to
go home sooner so I could go ski."
Bryan wants to have Charly and Ashton each draw a picture
that he can place on his ski helmet. He
will wear the helmet to raise awareness of leukemia and hopefully motivate
people to donate to the cause. After the
Olympics, he will donate the helmet to LLS to auction off. I’m not sure if he will be wearing the helmet
during the actual Olympic events, but regardless, it’s pretty cool.
Charly was hilarious during the meeting. Every time she was asked a question, she’d
turn her eyes to me and expect me to answer for her. I would just repeat the question to her and
try to get her to answer. She finally
opened up a little bit at the end of the meeting when I shared that she loves
Transformers and will watch them with her dad.
Bryan asked her which Transformer was her favorite. She told him Bumblebee. As we walked to the car, she grumped that
Bumblebee wasn’t her favorite and she should have said Grimlock, but she didn’t
think they’d know who Grimlock was.
I did share with Bryan that Charlotte was concerned about
the drawing, that the concept was a little abstract. Bryan would like the kids to draw what it
feels like to battle cancer. When I told
Charlotte this at home before the meeting, Charlotte sighed in disgust. “How do you draw that? I’m just like everyone else…except I have a
button” (that’s what she calls her port).
I love that she considers
herself like everyone else, and that battling cancer is no big deal.
2 comments:
She is just like everyone else. I love that she thinks that!! Maybe her picture could be of people alike and one has a "button"... Sounds very cool - very exciting for all of you!
I'm a friend of your sister Heather. Our son Spencer was diagnosed with rhabdomyosarcoma when he was 2. He had a port for a few years and was actually concerned/sad when they removed it. Heather just told me about your blog. We're almost 10 years since diagnosis, and Spencer is doing great, but I know there are new and different concerns that come after remission. Your family is in our thoughts and prayers.
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