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T.G.Inspiration.Friday! – Josiah, 1 Year Old

October 15, 2010

TGIF everybody! Even though the following story has no “official” [happy] ending yet (which is a little counter-intuitive to the promise I made last week or the week before that), I’m excited to present Josiah’s “Inspiration Story” because I just ran across his parents blog this morning: http://josiah-updates.blogspot.com/

Josiah (who also happens to be the July 2010 St. Jude Patient of the month)
1 year old

Diagnosis:

Josiah was diagnosed with a glioma astrocytoma, a dangerous brain tumor, in May 2009.

Josiah’s Story:

Josiah hadn’t started rolling over by the time he was 4 months old. Then, when he was 5 months old, he suddenly began favoring his right side. He wouldn’t reach for anything using his left hand and he stopped sucking his left thumb. His parents started to fear that something was wrong.

Josiah’s parents came to his six-month checkup with questions about their baby’s behavior. During the visit, the pediatrician noticed that Josiah’s head was larger than it should be, so he ordered an ultrasound as a precaution. The results were devastating—the test revealed a mass on little Josiah’s brain called a glioma astrocytoma, a type of brain tumor.

“It was a shock to find out he has a tumor only a couple of hundred children have,” his mom said. “We didn’t know if he was going to have his first birthday.”

Josiah had surgery at the local children’s hospital to remove as much of the tumor as possible, then he was referred to St. Jude Children’s Research Hospital for his continuing treatment and care.

At St. Jude:

After arriving in Memphis, Tennessee, Josiah began receiving chemotherapy right away to destroy what was left of the fast-growing tumor. Josiah also receives occupational and physical therapy, which have helped him regain the movement in his left hand.

Josiah’s parents are thankful for the community of friends they have made since coming to St. Jude. His mom said, “You still want to cry every day—but you can talk to the other parents … it’s like a really big family at St. Jude.”

Josiah is a happy little boy. He likes muffins and going down the slide at the park.

___________________________________________________________________________________

I love Inspiration Fridays because I like reading the Patient stories [and sharing them with you] which instantly snaps a little perspective back into my life (sometimes it can get skewed during the work week). The thing is – honestly – those stories are there, you read them, you feel for the patients, and then that’s all you get. I know that might have been frustrating for you. They can be frustrating for me too! While they are a joy for me to read and share, I always wish there was more … more ways to show support, more ways to tell the people you don’t know that you care, more ways to know that the kids that you’re reading about wind up okay! (etc.) Anyway, perhaps now I’ve also secretly revealed a little bit about why I follow Brock’s story. But I digress …

So this morning, as I mentioned above, I came across Josiah’s parents’ blog: http://josiah-updates.blogspot.com/    and I couldn’t be more thrilled. Now there are two kids – who I would not have otherwise found if it were not for this personal endeavor of mine – who I am excited to be able to follow. Some readers know that trying to raise money has been a struggle. Sometimes I think, “Maybe I should have contacted the Ellen show in September? Maybe I should have contacted more [potential] corporate sponsors? Maybe … Maybe … Maybe …?” And yet … at the end of the day, I’m doing the best I can (and I finally accept this) but when the going gets tough and I need a little extra push – it’s the ‘interactive’ stories, the ones going on right now – as I type – that truly motivate me.  In essence, the ones that let me actually be able to say the following:

Hi Merri and Stephen! I read your story. You’re so brave! I know we don’t know each other and I know we’ll probably never meet but I want you to know that you and your child inspire me. Truly. Not to run a marathon; I mean, lots of people train for a marathon every year. And no, not necessarily to raise money. I mean, I like doing that but I don’t do it because I think it’s really going to make that big a difference … You see, you inspire me to be a better person. To be kind to the people I know. To be kind to the people that I do not know. To be patient. To always look at the big picture. To never complain. When I look at the photo’s you’ve posted of Josiah and I read your posts, I don’t care that my dog misbehaved a little. I don’t care that the mail didn’t come in time for me to pay a bill. Basically, I don’t care about anything that isn’t worth stressing over and for most of the things in this lifetime – that’s a lot of things.

St. Jude Children’s Research Hospital is my favorite organization because I think it’s a resource that we need in this life. Let me elaborate: I read that happiness can be equated to Reality divided by Expectations. That is – you can increase your happiness by either increasing your reality or decreasing your expectations. When I read that I thought, “But how do we decrease expectations we didn’t even know we had?” For example, I believe it’s pretty safe to say that most parents expect that their child will not be diagnosed with cancer or some other grave illness.  And really, is that wrong? Or hard to expect? No. So that’s where St. Jude comes in. We might all expect that children won’t get sick (even people like me who don’t have any children yet) but reality just doesn’t work out like that – so we have to mess around with the “happiness equation” some more to counter the negative effect. In short, St. Jude Children’s Research Hospital increases our Reality; Whether it be because of the great achievements they’ve accomplished through the years when it comes to childhood cancer and other illnesses or merely because the presence of St. Jude’s inspires Hope for those who need it most – St. Jude is a place that makes the unexpected (or, the expectations that we didn’t even know we had) easier to bear.

Whew! That was a really intense paragraph. Sorry! I digressed again (I can do that a lot sometimes). Merri, Stephen – getting back to what I wanted to say … I only have one wish for myself and other people in this lifetime: happiness. In that regard, you and your family are in my thoughts and prayers and – where physically possible – I’m doing the best I can to help (that’s where the raising money part comes in, even if it only helps a little). In return, I want to thank you for the help you’ve given to me. You see, I signed up for this marathon because it’s something I wanted to do. And yes, it can be hard. But the truth is, it’s not harder than what you’ve had to do and I think about that as a reminder when the going gets tough both in my running program and in my life. For your strength, courage, and bravery (even at times when you might disagree), thank you.

Tomorrow’s 16 Miles (which is my longest distance ever) is completely dedicated to Josiah and you two.

ep

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One Comment leave one →
  1. Melissa permalink
    October 20, 2010 1:36 pm

    You rock…I’m so proud of you, ep. XOXO

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