Why I Climb

I climb for my brother, Dave, who received exciting news today that he is a confirmed match for a bone marrow donation for a 40 year old woman who is fighting leukemia. It’s been five long years since he registered and now, he’s finally getting the chance to give back.

Dave will be undergoing the procedure to help save this woman’s life by mid May. His bravery, compassion, and willingness to aid someone far away (and humility, too! He really doesn’t think anything of undergoing such a big procedure for a stranger. He just wants to help because it’s the right thing to do) inspires me, and I can’t help sending good vibes out to the recipient, too; I wish her the best in her cancer fight. I’ll be thinking of both of them when I take off for Kilimanjaro in almost two months.

Did you know you can register as a possible bone marrow donor with one simple swab of your mouth? Find out more at the National Marrow Donor Program’s web site.

Hard Times Happen. Remember to Go Easy on Yourself

“I haven’t run in at least six months,” said Justin Ozuna, who’s been fighting CML for 6 years. “I knew it would be hard, but I wanted it to be harder than sitting at home and wondering what was going to happen next. My legs kept moving. My body began to hurt, but my head began to lighten. I’m sure that I looked like the Lance Armstrong of zombies as I struggled up each hill, but I’m confident that nobody has looked less graceful running down them. It was just what I needed. I felt much better…The marathon of the mind is one that never goes away…It’s just another day, another lesson, another hurdle on the road to the finish line. I’ll have hard days, but that isn’t a prerequisite to be hard on myself. When I learn that lesson, things will be a lot easier in the future.”

Justin talks frankly about hard times, and the lessons that he’s learning along the way to get through them—like being too hard on oneself, and learning instead to focus on the present.

His blog also chronicles lots of other cool things happening in his life. He hasn’t let cancer, or his need for a possible bone marrow transplant, define him.

Keep fighting and please keep writing, Justin. Your honesty inspires me to climb.

Why I Climb

This is my next post for my “why I climb” series and is one of many reasons why I’m determined to climb Kilimanjaro with Survivor Summit to fight cancer…

Today I climb for Owen McMasters and all other children and adolescents suffering from Acute Lymphoblastic Leukemia (more commonly known as ALL). I climb to spread the word about the critical shortage of cancer drugs available, in the hopes that businesses, non-profits, and individuals can proactively work together with pharmaceutical companies to resolve this life-threatening issue.  

Owen seems like a pretty smart kid, and when you read his story, you’ll see that he’s got a great attitude and is doing everything in his power to fight cancer. Unfortunately, though, this shortage of medication has caused some issues for his treatment plan. Please read on below:

“Two weeks ago my main doctor told me I was doing better than he ever expected. He was honestly shocked with my latest bone marrow biopsy. But in the next minute he told my mom I would likely not be able to undergo my next phase of chemo.

The next phase is high dose methotrexate. I would receive this drug all the time - through an IV in my spine. It is the most frequent drug and the high dose is evidently going to be hard. I was ready for it because it is also what will keep my cancer from returning. It is what will make me live.

My doctor told me drug companies had stopped making methotrexate in the form I needed and that the shortage was so bad no one would be able to get it in the next few weeks unless something drastic changed. He said the shortage had been going on to some degree for two years, but that it was critical now.

I knew it was critical - it was going to affect me and all the other kids in the clinic that day and all the kids in the U.S. who also have ALL.

I asked if we could get it from other countries and was told it isn’t that easy. He also said that the shortage of chemotherapy drugs for kids with cancer was a constant problem and was not just with methotrexate. Six months ago there was a shortage of AraC, another drug I take frequently.

That very day the clinic nurses asked me if I had decided what I wanted for my wish from the Make A Wish Foundation. The people from Make a Wish had visited me the last time I was in the hospital, but I was so sick I only talked to them briefly.

I talked to my parents and told them I would feel bad asking for something to be bought for me but might consider something all the kids could enjoy at clinic or on the children’s oncology unit at Kosair Children’s Hospital.

After I got home from clinic, we researched the methotrexate shortage and found that my doctor wasn’t exaggerating. I decided my wish would be to fix the shortage of chemotherapy drugs so that other kids could get the treatments that they need to be cured of cancer.

I wanted to make the shortage of methotrexate known by everyone who could do something about it. I wanted the drug companies to share my goal of curing my cancer and cancer in lots of other kids by making these drugs, even though they are cheap and might not make as much money as some others.

The FDA has said that methotrexate will be available for now. But this problem is not solved for good. A permanent solution to this problem must be found. I don’t care how the problem is solved, it just needs to be solved.”

Keeping fighting, Owen. I hope for your sake, and so many others’, that we can fix this for you.

Today and every day, I climb for you.