I first had the privilege of photographing Carly and part of her journey back in 2009. She was about to face another tough round of treatment and a double lung surgery to remove where her cancer had spread. This young lady is a walking, talking, dancing, fireball of a MIRACLE. I am SO grateful to know her, to know her story, to witness her strength, her testimony, her love of life and impeccable sense of humor. I asked her mom to write about Carly’s journey. It has been a long one, and one that still isn’t over. But, honestly all of our journeys are ongoing aren’t they? We are all on a path of constant changes, ups and downs, trials and triumphs. Carly’s tests keep coming back stable and we will keep rejoicing with her.
From her mom and dad:
Carly was diagnosed with a rare, aggressive form of sarcoma when she was 7 ½ years old. The name of this cancer diagnosis is a mouth-full…mesenchymal chondrosarcoma. There is no known cure, so she will live with it like a chronic disease, and there is no “roadmap” (or a structured plan) to treat this cancer. In Carly’s case, her tumor was resistant to traditional chemotherapy treatments so we had to think outside the box for her treatments. She now takes biological agents, which is a new alternative to traditional chemotherapy, to keep her cancer from growing or returning. Because she has microscopic disease, she will never be in standard remission; but we like to say she is a fighter even though she will never “beat” this cancer. The biological agents are working and I am happy to say she has been stable now for 2 years and 4 months, which is a HUGE blessing!
Carly has had a rough road, to put it lightly. She has had over 16 surgeries, 5 relapses, and 3 radiation treatments and has spent more time in hospitals than can be imagined. With every treatment and relapse, we had to come to the realization that the odds could be building against her. Some occasions we had to think about the inevitable and thought “was this it, are we were going to lose her?” But, of course, God had different plans! It does not matter what we thought. Through it all, Carly has handled every situation with strength, grace, dignity, and an amazing smile that lights up the room! We truly believe her spirit through this is God’s light. He lives in her and carried her through some of the hardest days anyone can experience.
The day she was diagnosed will always be etched in our being. To this day, I still remember hearing the words “Carly has a fairly large tumor in her sinus cavity”, and how these words knocked the breath out of me. Carly’s dad says he still remembers the blood curdling scream I let out when my worst fears had been realized by these words. Carly would tell you the worst surgery ever was the gruesome lung surgeries called thoracotomies. According to Carly, the pain is absolutely unbearable. After one of her procedures, a double thoracotomy (both lungs at once), she was lying in her bed in the ICU in pain. Our tough 9 year old child was standing strong, but I could see a tear rolling down her cheek. The pain from the procedure was so bad, and the chest tube took up so much of her lung capacity that she couldn’t even get a deep breath to scream. All she could do is lie there and let tears roll down her cheeks. So I held her hand and I told her how I wished I could take her place and that she didn’t deserve this. I told her I would do it for her in a heartbeat if I could. She looked me right in the eye and whispered, “No, Mommy, you aren’t strong enough. I can do this”.
Carly has always had an optimistic outlook of her illness and treatment. In the beginning of our journey, the song “Stand” by Rascal Flatts was the song that inspired her to fight every day! Carly’s journey has taught us how to appreciate every single day we have together. She lives her life like any normal teenager (15) and expects to live her life to the fullest for a very long time. Because of her positive spirit and her faith in God, she has taught us to be the same way. We are thankful for every single day we have with her, and we are even thankful for the emotional, teenage outbursts that occur more frequently these days! It’s all worth it because God has chosen to allow us to keep her here with us! And for that we are blessed and thankful!
All the procedures have given Carly many scars on her body. She never complains about them, seeing them as her battle scars. She maintains a positive outlook and is quite light-hearted about them. There is a large scar on her leg from a surgery where they used muscle in her leg to create reconstruction in her head. She tells people she was bitten by a shark. She will also be glad to show you the hole in the soft palette in her mouth that causes her speaks differently, but if someone comments on the way she talks she will just say that she speaks differently because she was born in Australia. Carly tries to find humor in many difficult situations, and is very open and honest with anyone that wants to know her story. To us, she is perfectly formed in the eyes of the Lord with surgical imperfections that only tell her amazing story. She is and always will be our Hero! She is proud to be a part of such a wonderful blog, Perfect Imperfections.