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My daughter Marlee was diagnosed with cancer, more specifically, Alveolar RhabdoMyoSarcoma, also known as AMRS. It is a soft tissue cancer that affects about 350 children each year and only accounts for 3% of all childhood cancers each year in the U.S. More than half of them are diagnosed under the age of 10.
It's been a long journey from the start of everything and I'd like to share her story with those who'd love to read about it as well as open up about everything we've experienced thus far.
In May, 2016, I noticed a slight difference in her left nostril which caught my attention, so I immediately took her to her primary pediatric physician. He examined her, followed by explaining to me he thought her nostril was just growing a bit faster on that side and not to worry. Needless to say, I wasn't accepting that for an answer so I sought out an ENT specialist to further determine what could be the cause. At this appointment, they examined her and said they believed it was possibly a Hemangioma. Basically a growth that forms due to an abnormal collection of blood vessels. This doctor then referred us to another ENT specialist who specialized in Hemangioma's to decide if this is what she actually had. They did a few tests, but ultimately wanted a biopsy of the nodule in her nose to confirm exactly what it was. Over the next few months, and multiple trips to different hospitals for several scans and tests, they were able to officially diagnose her. We were fortunate enough to catch it early, so she was considered a Stage One, in which it hadn't metastasized anywhere else in her body, and was only localized to the small tumor located on her left nostril. So even in the midst of some of the worst news anyone could ever receive, I still had to take a step back and be thankful for the positives.
Now came the discussion of treatment. 9 months worth of Chemotherapy, in conjunction with Radiation at some point during the 9 month treatment plan. The duration of Radiation had yet to be determined, due to wanting to shrink the tumor some with the Chemotherapy and then potential surgery to remove what was left, to lessen the amount of radiation she would receive.
Over the course of the last 5 months, Marlee has exceeded expectations set by her Oncologist and the team setup behind her. She's fighting against the odds, every single day. She's rarely sick, even now with her immune system being compromised. She's had 2 surgeries to remove the nodule on her left nostril and both were a tremendous success. The transformation is unbelievable.
She's as healthy as can be, under the circumstances, and she's just as full of life, maybe sometimes more, in my eyes, as she was before this all started. She has shown a strength in herself, that I haven't seen in most adults I know. She has also given me the same strength, which in the beginning, I was unsure I could find. Never have I thought selfishly, nor questioned, "why me, why Marlee?" Because there are too many battling similar things, and too many who have lost their fight. Marlee isn't the first, and she most certainly won't be the last. I'm just thankful I get to see her fight another day, every morning she opens her eyes.
She still has about 5 more months of treatment. And I'm going to keep fighting this fight with her until she's cancer free. Late nights. Early mornings. Hour drives to the hospital. Overnight stays. Five day stays. Every Monday for her clinical appointment. Every Thursday for her labs to be drawn. And each and every single day in between. She is the reason I keep going, no matter how hard things may get.
For anyone willing to help, I appreciate it more than you'll ever know.
It's been a long journey from the start of everything and I'd like to share her story with those who'd love to read about it as well as open up about everything we've experienced thus far.
In May, 2016, I noticed a slight difference in her left nostril which caught my attention, so I immediately took her to her primary pediatric physician. He examined her, followed by explaining to me he thought her nostril was just growing a bit faster on that side and not to worry. Needless to say, I wasn't accepting that for an answer so I sought out an ENT specialist to further determine what could be the cause. At this appointment, they examined her and said they believed it was possibly a Hemangioma. Basically a growth that forms due to an abnormal collection of blood vessels. This doctor then referred us to another ENT specialist who specialized in Hemangioma's to decide if this is what she actually had. They did a few tests, but ultimately wanted a biopsy of the nodule in her nose to confirm exactly what it was. Over the next few months, and multiple trips to different hospitals for several scans and tests, they were able to officially diagnose her. We were fortunate enough to catch it early, so she was considered a Stage One, in which it hadn't metastasized anywhere else in her body, and was only localized to the small tumor located on her left nostril. So even in the midst of some of the worst news anyone could ever receive, I still had to take a step back and be thankful for the positives.
Now came the discussion of treatment. 9 months worth of Chemotherapy, in conjunction with Radiation at some point during the 9 month treatment plan. The duration of Radiation had yet to be determined, due to wanting to shrink the tumor some with the Chemotherapy and then potential surgery to remove what was left, to lessen the amount of radiation she would receive.
Over the course of the last 5 months, Marlee has exceeded expectations set by her Oncologist and the team setup behind her. She's fighting against the odds, every single day. She's rarely sick, even now with her immune system being compromised. She's had 2 surgeries to remove the nodule on her left nostril and both were a tremendous success. The transformation is unbelievable.
She's as healthy as can be, under the circumstances, and she's just as full of life, maybe sometimes more, in my eyes, as she was before this all started. She has shown a strength in herself, that I haven't seen in most adults I know. She has also given me the same strength, which in the beginning, I was unsure I could find. Never have I thought selfishly, nor questioned, "why me, why Marlee?" Because there are too many battling similar things, and too many who have lost their fight. Marlee isn't the first, and she most certainly won't be the last. I'm just thankful I get to see her fight another day, every morning she opens her eyes.
She still has about 5 more months of treatment. And I'm going to keep fighting this fight with her until she's cancer free. Late nights. Early mornings. Hour drives to the hospital. Overnight stays. Five day stays. Every Monday for her clinical appointment. Every Thursday for her labs to be drawn. And each and every single day in between. She is the reason I keep going, no matter how hard things may get.
For anyone willing to help, I appreciate it more than you'll ever know.
Organizer
Chelsea Nicole Reynolds
Organizer
Dayton, OH