Life After Pediatric Cancer

The banner with the #44 surrounded by a yellow ribbon still hangs at the Oakleaf Sports Association baseball complex. It’s faded by the sun but an important reminder that one of our own fought a battle two years ago after being diagnosed with Ewings Sarcoma.

The Breen Family was kind enough to tell me their story in the middle of treatment to help bring awareness to the Pediatric Cancer. We talked a great deal that day about Their New Normal. They were emotional, honest, and in awe of their son’s ability to weather this storm while our boys played video games in the room down the hall at the hospital.

charles-follow-up-2
Charles (right) with my son on the baseball field.

When I asked Holly if I could write an update, the most important thing to me was that I do their journey justice. It didn’t feel quite right to only focus on their cancer-free life. That would downplay what I know they face daily post-treatment. It also didn’t feel right to use my words because how could I possibly convey the feelings. So, on September 15th, the day of Charles’ 18 month scans to confirm the cancer hadn’t returned, Holly sat down and shared in her own words, what this cancer-free new normal is like:

Today is the day, and after 18 months you think it would be easy, but it’s not. My stomach is churning and it’s hard to breathe. Tonight, Charles will go to Wolfsons and have a chest xray and MRI to see if his cancer has returned. He has been in remission for 17 months now, and if his scans are clear tonight he will be considered 18 months NED (No Evidence of Disease). This is something we will do for the rest of his life, it will never end and this journey is never over. I will sit tonight in the MRI waiting room, like I did the morning of July 8, 2014 and pray he is ok. I panic that this time we will get the call like we did that afternoon telling us that Charles had cancer. No matter how old he is, I will always worry that this monster that invaded his body will return.  

After Pediatric Cancer, once chemo is done and their hair has grown back, people assume everything is back to normal and life goes on, but it doesn’t. The type of cancer he had requires a lifetime of scans. He will have scans every 3 months for 2 years, then every 6 months for 3 years and then 1 time a year for the rest of his life. He is facing surgery on both feet in the very near future due to damage from being in treatment for 8 months. He tries so hard to mask that his feet and hips aren’t quite working the way that they are supposed to. He gets on the field to play ball and hides the fact that his feet and legs hurt so bad when he’s done because of the damage; he just wants to be normal again. There are things that he deals with on a daily basis that people aren’t aware of. 

Due to the fact that there has been no pediatric chemo’s made available in over 20 years and the amount of proton radiation he received, he will be at risk for secondary cancers that may not manifest themselves until he is older. There is a chance he will never have children. There are many uncertainties he is facing for the rest of his life. When he says something hurts, like his legs, back, head; my heart stops and I forget to breathe. My mom always tells me that no matter how old I am, I am still, and always will be, her little girl and when I hurt, she hurts. I now understand what she means. Even though Charles is 12, when he is 18, 20, 30, 40, 50, as long as I am alive, he will always be my little boy, and I will always have this same fear that I have in my heart at this moment.  

charles-follow-up-1So tonight, I will sit and pray the same prayer I have for the last 18 months, that God prepares my heart for tonight’s results. He knows what those results will be and no matter how much I worry, it will not change the outcome. As much as I want to shelter and protect Charles, I can’t.  Tonight, I will sit in the waiting room and pray. This weekend, I will go to the ball field and cheer him on. Hopefully, over the next several years, I will watch as he continues to grow into an amazing young man, but I will always hide the fear that now permanently lives in my heart until the day I die. – Holly Breen

Update: I am happy to report that shortly after submitting this to post, they received the phone call that Charles is officially 18 month NED (No Evidence of Disease)!

Childhood Cancer

Christie Pettus
Christie Pettus is a full time working wife and mother living her suburban cul de sac dream in Orange Park, Fl. She is Mom to two awesome teenagers, McKenzie and Ethan, who have come to accept that certain parts of their lives will be blogged about, so they should act accordingly. As graduates of the University of Florida, she and her husband Ryan can be found rooting on their alma mater every chance they get including the more obscure sports. LaCrosse anyone? When she’s not judging her kids' questionable teenage choices, she can be found hiding in a room buried in a good book or writing, editing, and dreaming about being a full-time author.

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