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!
Vanessa was diagnosed at the age of 1 with disseminated primitive neuro-ectodermal tumor (CANCER!) in her brain and spine. Let that sink in. That sentence is powerful. And scary. And life-altering.
That cancer diagnosis came 10 years ago TODAY. 10 years ... a decade. That is how long Vanessa has been battling. That is how long our family has been immersed in the cancer world. This world has been full of chemotherapy drugs, MRIs, medicines, pokes and prods, hospital stays, puke buckets, hair loss, NG feeding tubes, physical therapy (to learn to walk again, and to learn to jump and run), and so much more. Vanessa is now (after over nine years) off of chemotherapy and is growing and stable. She just entered middle school.
There are fears, thoughts, scars and flashbacks that haunt each of us in our family. My life, my husband's life, our daughter Kyra's life and, of course, Vanessa's life have been profoundly affected by this diagnosis. Here are some of my thoughts, fears, flashbacks, memories and feelings:
- The horror of that first meeting to discuss the three-inch mass on Vanessa's spine brings tears to my eyes. The overwhelming fear took my breath away. I was unsteady on my feet; my mind was racing to places that were horrifying. It was like a nightmare that I could not escape from.
- Seeing my one-year-old sedated in a weird position so that she could not move since the gifted doctors had just cut her spine in two places, removed the piece they cut, scraped out as much of the tumor as they could get to, and laid the spinal bone back in place, was practically crippling.
- Each and every time Vanessa gets an MRI (so far she has had almost 50 of them), I hate when the gas kicks in and her eyes roll back in her head.
- Our family has met some of the most amazing, giving, honest and caring people along this journey.
- Every time Vanessa has an ache or a pain, I am practically paralyzed with fear that there is new growth on her tumors.
- The memory of Vanessa jumping and getting both feet off of the ground at physical therapy when she was almost three years old is vivid. The kid had learned to walk, had to learn to walk again after her surgery, and then had to build up strength and balance after her stem cell transplants. So jumping was a HUGE milestone! She was so excited. I was so proud!
- The gut-wrenching feeling each time I had to leave Kyra to go back to the hospital to stay with Vanessa lingers still today. Kyra went to live with our family during Vanessa's initial treatments and stem cell rescues. To be away from Kyra was more difficult than she will ever know. Many times I cried the entire way to CHOP, then cleaned myself up in the parking deck before going in to relieve Donnie so he could go home, go to sleep and then go to work.
- I always knew my family was special, but when Vanessa was diagnosed, it became even more apparent. This journey would have been so much more challenging without them rallying behind us every step of the way.
- Putting Vanessa in the shower every four hours for three days straight, for three of her rounds of chemotherapy was very challenging. She had to be "hosed down" because the poison/chemotherapy drug would come out through her pores and if it was not washed off, it would burn her skin. She cried each and every time. Then I cried after she fell asleep. She was 2 years old, bald, connected to tons of tubes and wires and oozing poison.
- PCFLV was my savior. Meeting the other moms and families saved me. I was at a very low point in our journey, and then I reluctantly attended a PCFLV event. It was an awakening of sorts ... a realization that there were other moms in the universe who knew the road we were traveling. Yoga, tea and conversation were exactly what I needed at that time. I can never thank PCFLV enough.
- I remember being so enamored by Kyra (who was three at the time) sitting on the sofa with Ness watching tv after Vanessa's surgery. They cuddled together under princess blankets and watched hours and hours of tv. They giggled and were so damn cute!
- The sheer relief last week when Vanessa's scan was STABLE!
These are just a few of my thoughts, flashbacks and fears. There are so many more. They sometimes overtake my mind, but I try to tuck them away.
Because of pediatric cancer, our family learned that each day is truly a gift. We learned to live in the now. We learned to spend the money and time to take that vacation, day trip, or hike. We learned that tomorrow is not guaranteed. We laugh, cry, and love more vibrantly now. We appreciate family and friends more. And, we face each and every day with hope.
Written by Vanessa's mom and PCFLV's Marketing and Community Relations Coordinator, Tracy