September is Pediatric Cancer Awareness Month. At PCFLV, we are committed to spreading the GOLD all year long. However, in September, we truly make it our mission. 30 Days, 30 Stories celebrates the children we know and love and the brave battles they fight and have fought, with their families by their sides. In celebrating these beautiful children and their stories, we hope to inspire you to join us in our mission to SPREAD THE GOLD in September and all year long!
On August 25, 2015, I called the pediatrician at exactly 8 AM to request another "sick visit" for Mary's persistent pain on her left rib. We'd been to the doctor so many times for this pain. I wanted a resolution to it before she started her freshman year of high school in a couple weeks.
On this particular doctor visit, Mary saw yet another pediatrician at the same practice. This doctor wasn't inclined to order another x-ray for Mary - she'd already had several clear scans - but I insisted, and so he agreed, along with ordering comprehensive blood work. We went straight to the lab after that appointment and got the scan and had the blood drawn. I stood with her in the x-ray room and can distinctly remember the trouble she had raising her left arm for the imaging tech. When the tech tried to position her properly, she flinched at her touch. She looked so thin in that gown. When she was done, she was exhausted and didn't want to go shopping. I was bummed because I had a 30% off coupon for Kohl's. We went home, and I gave her some ice water and a snack and went about my usual "mom stuff."
Within 30 minutes, my cell phone rang. It was not a number I recognized, and I was in the garage crushing cardboard boxes, so I almost let it go to voicemail. But, I got a hand free and answered the call. It was Mary's pediatrician calling from his own cell phone, during his lunch.
He asked me if I was able to talk, and if the kids were around. Mary was upstairs in bed, and Chris was over at a friend's house. I was alone. "I can talk. I'm alone." He sighed and said, "OK, good." I crouched down in the garage and felt a calming numbness take hold of me. I am not known - AT ALL - for keeping my cool in times of stress, so I have never felt an adrenaline rush like this before. I'm pretty sure it's called shock, but it allowed me to calmly listen to him tell me that two large - very very large - tumors were seen in Mary's chest, and that I had to immediately bring her to the 4th floor of Lehigh Valley Hospital for an admission. I thanked him, and we hung up.
That is precisely the moment that I became aware of the fact that I was a Cancer Mom. I knew it right then, during that phone call in the garage, that my daughter had cancer, even though that word had not yet been uttered.
All cancer parents, and cancer patients, have a BEFORE cancer life and an AFTER cancer life. And you can never again cross back into the "Before" territory once you're in the "Afterlands." Ever. You're permanently banished. There is no bridge you can build or gate you can open to go back. You're tossed into totally new and terrifying territory, without any warning, and you're left there. Sink or swim, baby!
Mary had her biopsy on August 27, 2015. During that long surgery, a nurse came out to the waiting room to update Mark and I on how things were going. She told us a port for chemotherapy had been implanted in Mary's chest. The reality of the situation began to settle upon Mark and I. Then, we had to continue waiting in a crowded surgical waiting room. I wonder how we appeared to those strangers?
Immediately after that surgery, before Mary was awake, the oncologist and surgeon met with us in a tiny, private room that featured a table and a box of tissues. He confirmed that small, blue cells were seen in the sample of the tumor they removed from Mary's rib. That meant the official diagnosis was metastatic Ewing's Sarcoma, as he had suspected a couple days ago. He had also drilled holes in Mary's hips to take samples of bone marrow. The surgeon had removed a piece of Mary's rib, and her lung had collapsed, which necessitated a chest tube. The oncologist bluntly answered my five-year survival question with a quick "30%." That is, only 30% of kids with Mary's type of cancer are alive after 5 years. Seeing our daughter awaken from that surgery was a low point for me, personally. I felt the deepest sorrow I've ever known. What I somehow remember clearly is the way Mary's tears collected in little silver balls on her eyelashes when she woke up. She'd lose her eyelashes a short time later. I tried to stroke her long hair, but she waved me away and grit her teeth in pain. She'd quickly lose all that glorious hair, too.
Childhood cancer, like all cancer, deeply affects the entire family. When children get sick, parents suffer. Siblings suffer. Grandparents, aunts, uncles, friends and communities suffer. All of my cancer-family friends (many of whom I've met through PCFLV) who wander the Afterlands with me used to live in "Before" world. We all used to be like YOU....we had our worries and our stresses, but we did not have kids with cancer in our lives. Then we got something like a phone call while we're in the garage, and everything changed. And I know my family and friends are part of the "lucky" group - the ones who aren't grieving. We have the luxury of worrying about whether or not we'll be grieving at some point in the future. But my bereaved peers...they're navigating a world that terrifies me. And the terror of that grief is something that will never end for us.
I don't want more families to join us here in the cancer Afterlands, but they will - they'll keep coming here until we find a cure for this horrible disease that takes so much away from so many people. Unsuspecting parents, who think the "Afterlands" is for other people, arrive here daily. The parents of over 40 children every single day join us. None of us can really believe we're here, but we are. It's real. And it's permanent. No one is ever "done" with cancer.
Mary went through a year of brutal treatment. During that time the PCFLV family helped us navigate very rough waters.. At a time when it felt like we were stranded on an island of misery, PCFLV gave us hope and understanding.. They offered us a lifesaver just when we needed one. Michelle and Lisa and the rest of the Foundation made themselves personally involved in Mary's road to recovery. Now, Mary is off treatment and showing "No Evidence of Disease" for over a year now, and PCFLV remains a constant companion in our lives. They've helped shaped Mary's future by allowing her to develop personal interests in public speaking, philanthropy and film. Because of PCFLV, Mary got through the worst experience of her life and emerged with a clear vision of what her future will be. There is no way to repay the debt my family and friends owe this amazing organization, but we are eternally grateful.
-written by Mary's mom, Kathy