Wednesday, February 13, 2013

Eli seems to be doing very well. He has a runny nose that I am absolutely freaking out about inside because he had a runny nose that wouldn't stop when the tumors was originally growing. Is it even connected, who knows. Is it unusual to have a runny nose in this house? Absolutely not, but any little thing that is simliar to the time leading up to his diagnosis is terrifying. He is not as orange as he was when we had our last scan (from all the juice he was drinking) so he looks pale to me. I have a little knot in my stomach beginning to grow and it has a month to simmer. Please continue your prayers. The risk for relapse is highest within the first year, and it is completely out of our control We didn't do anything to get medullo, so we can't do anything to keep from getting it again. Please, remember Ryan's family, and if you can give a little toward a memorial for him at the UA libraries, I would appreciate it. Smilin' Jack is on my mind as he and his family are making decisions about his treatement after having discoverd that the tumors are growing during his current treatment. When it will not just resist, but grow, while getting chemo, how many choices do you have, really. I am scared for them.  But, I want to also share that I have seen several NED's on the support group site, so I am so thankful to see that.

My next guest blogger is Sharma Hamm, of Athens, AL. We met when our firstborns became classmates at ABS in Kindergarten, and I love being around Sharma, and if you know her, you do, too. She and her husband Joel have big hearts, and are great examples of community spirit. Sharma owns a little piece of Athens history - The Grasshopper, a beautiful children's boutique in downtown. "Like" it on facebook. Joel is the General Manager at Champion Chevrolet in Athens, "like" them, too. I appreciate Sharma taking time to write a post for me, and share the good news about her neice.

By Sharm Hamm:

My two nieces Kennedy and Kristen Pepper

 When Kristie first ask me to write something for her blog I must admit panic set in. First, because I have zero story telling ability and second wondering what I would write about. I decided I would write about my niece’s experience with St. Jude.

Kennedy was diagnosed March 7, 2008 with Ewings Sarcoma. Ewings can occur in any bone in the body; the most common are the pelvis, thigh, lower leg, upper arm and ribs. Kennedy’s tumor was in her femur, the large bone of the upper leg.
Kennedy had four chemotherapy treatments to shrink the tumor before her limb-sparing surgery. The affected portion of the bone was removed and a cadaver bone was spliced in. A steel plate wires the donor’s bone to Kennedy’s while doctors waited to see if her own bone fused with the donor’s.
After surgery, Kennedy had a 48 week chemotherapy treatment regiment.
Kennedy was 1 of 10 children chosen by St. Jude to go to New York to be part of the Thanks & Giving Campaign in 2009. While doing the promotional photo shoot she met Marlo Thomas. It was very exciting for her as one can imagine. It was the first time on an airplane for her and New York is pretty spectacular from what I hear.

The whole experience seems at times so long ago. Kennedy was diagnosed when she was 10 and is now 15. I am happy to report today she is cancer free!

The whole experience has really educated me on how wonderful places like St. Jude truly are. St. Jude is unique because you are never billed for any of the treatments that your insurance will not cover. Some may not even have insurance. I don’t know if you can fully appreciate that fact unless you are the one benefiting from it. When your life is turned upside down, it is nice to know there is a place that is more concerned with a child’s health than a paycheck. I am sure we all can relate to problems with co-pays, etc. I just really appreciate their concern because I have seen so many others in the midst of surgeries, treatments, etc. and they are having to have fund raisers in an effort to raise money for treatment in the midst of everything else.

Kennedy at 15 and cancer free!

I try to give back to St. Jude when I can. I order several items throughout the year from their online store. It makes me happy to participate when Kristie does all the nice things she does to give back. I will always have a special appreciation for St. Jude. When you experience what they do first hand it makes you realize how special they really are. If I see the words St. Jude I automatically want to give back any way I can.
 The following appeared on Kennedy’s Caring Bridge. She wrote it herself while undergoing treatment.
                C – stands for Courage
                A – is for Admit –  admit you are scared
                N – is for Never say Never
                C – is for Caring Bridge
                E -  is for Encourage
                R – is for ruining because at first you think this is ruining your life
She signs off: “But I believe that God will pull me through. BELIEVE!”

It is terrible when anyone gets cancer but especially a child. The devil knows where to hit us where it hurts the most. 1 Peter 5:8 says “Be sober and vigilant –your enemy the devil prowls around like a roaring lion seeking whom he may devour.” 
Kennedy did not write this but found it and posted it on her Caring Bridge on December 11, 2008:

                                The Littlest Soldiers     

The medals on our chest are chemo ports for meds,
Helmets won’t stay on
Cause no hair is on our heads.

Our weapons of destruction, we take everyday,
We fight the battle within us
 while we struggle on to play.

We fight with honor and courage
No Marine could do as well,
We are only little children, living in this hell.

So bring on the medals, The Purple Hearts of wars,
The Gold Cross, The Silver Star, to place upon our 
   scars.

For we are the children of cancer
No one has fought so hard,
But everyday we struggle on,
Our LIFE is our reward.

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