September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics. The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action. Read more about this series and childhood cancer HERE.
By Susanna Needham
The first few weeks of Piper Jean Needham's life were spent bouncing and walking. I bounced. I walked. She screamed and wiggled and fussed and I did it all over again.
Bouncing and walking.
As I would walk laps around my house or yard or the grocery store, just bouncing her away, I would tell myself "she will grow out of this. Someday she will not need me to bounce and walk all day. Someday..."
So when the bouncing and walking became non-stop and a low grade fever followed suit and Piper slowed her bottle intake and her little bum got a diaper rash that wouldn't go away despite the bevy of creams and ointments I attempted, I bounced and walked her ten week old self right into my pediatrician's office for a fix her up. He checked her out, didn't seem concerned, but sent us to the local hospital where she was tested up and down and given fluids.
"Just an overnight stay, okay?" they said to me as I was bouncing and walking this clingy ten week old child of mine around the hospital’s Pediatric Unit. Just an overnight stay to get some answers despite no one really seeming too concerned. Just an overnight stay that required my spouse and I to take turns watching nurse after nurse try unsuccessfully to place an IV in her tiny little limbs. "Just an overnight stay" I told my beautiful and healthy four year old daughter as she skipped out the door with my mother for a sleepover. "Just an overnight stay," I told one or two people...nothing to fear...it's only an overnight stay.
Morning came and quite quickly followed a visit by our beloved pediatrician and a somber diagnosis of Infantile Leukemia.
I stopped bouncing for that moment.
Walking was not an option. I simply sat in the harsh and solid wooden rocker some kind nurse had brought us in the wee hours of the morning.
Within hours, Piper was aboard an emergency transport to Children's Healthcare of Atlanta at Scottish Rite and that same evening would receive her first platelet and blood transfusions. She would have an IV successfully placed by nurses who would become our favorite people in the world. She would be introduced to monitors and needle pokes and medical staff. Each morning from the day of her diagnosis we would receive more information about her cancer. Each oncologist would recite facts and plans and details that never brought us peace. They spoke of MLL-rearrangements, a poor prognosis, diaper rashes, NG tubes, developmental delays and all the horrible parts of having a child with cancer.
And from that date, everything changed. Each round of chemotherapy seemed more intense than the prior. She would develop 3rd degree burns on her legs and bottom from high doses of Methotrexate. She would lose her voice for 3 weeks as a very rare side effect of Vincristine. She would break her elbow when she rolled off the bed one day because her bones were already brittle from the chemotherapy we subjected her to. She would spend three and a half weeks in the rehab unit because a virus called Cytomegalovirus (CMV) had wreaked havoc on her already weary body and left her unable to eat or keep any nutrients in her little fifteen pound body and unable to sit up on her own...at 18 months old.
When other one year olds were learning to walk and eat and play, Piper was confined to a hospital room that we attempted to make fun and stimulating. And yet, no matter the day or circumstances, we were bouncing and walking and choosing to keep smiles on our faces for this little girl who deserved that and more.
After two years of this madness, infused with deliberate joy, Piper finished treatment. By this point, less was required of me. Piper had gained independence and pride in doing things on her own. Like most sweet two year old little girls she chose the glittery tutu, the fanciest hairband and as many bracelets as she could fit on her little arm each morning when she awoke and dressed. She knew where the cheese sticks were in the bottom drawer of the fridge and how to find the Annie soundtrack on my iPad when she wanted to dance and which books her big sister would most readily read to her while sharing their big bed each night.
As soon as we began to move past the horrors of her first two years, she relapsed. Once again, Piper needed me to bounce and walk. She needed me and I desperately needed to be needed by this child I so fragilely clung to.
Piper first relapsed in July of 2011. She had a Bone Marrow Transplant in December of that year at Children's Healthcare of Atlanta at Egleston which initially was successful, but she relapsed yet again a mere 6 weeks later. We uprooted our little family of four and left Georgia for St. Jude Children's Research Hospital in Memphis, TN for an experimental transplant using Natural Killer (NK) cells.
Shortly after Piper received her Natural Killer Cell transplant, she became sick. Adult doses of chemotherapy for two and a half years given to a child diagnosed at a mere ten weeks old was breaking her...her lungs could not keep up and she was moved to the ICU. My husband had spent the prior night bouncing and walking Piper as she struggled to get comfortable. When he made the frantic call to me to rush over, Linley and I dropped the school work we were doing and ran across a large parking lot, up stairs, into the elevator and through doors to see her little self waving. That evening she and her sister sat and played and colored while the ventilator did its thing...by morning though, she had declined enough to be sedated and placed on a higher setting...for three weeks we sat with her sedated body and sang and talked and watched movies. ..for two weeks we hoped and prayed for another opportunity to bounce and walk with our child.
On April 3, 2012 Piper Jean was dying. The nurse picked up her swollen and wire covered, warm little body and placed her in my arms. My husband curled himself around me. Linley kissed her little sister’s head before we quietly sent her to be loved on by the bevy of family and friends in the waiting room around the corner. The oscillator was turned off and through the weariest and grief stricken tears we spoke to her of our simple love and our God's infinite love she would soon see as she slowed her breathing and peacefully passed away.
Mommies should never have to pick out hymns for their child's funeral or need to walk down a long church aisle, near despair, in front of throngs of people who ache in fear of living out our nightmare. And yet, each day more mommies live this. More children die and more hearts break irreparably.
Piper Jean was a joy to raise and I would trade my kingdom for a chance to bounce and walk with her one more day, one more moment, one more time.
If you're looking for all of the posts in the Childhood Cancer Stories: The September Series, you can find them catalogued HERE.
If you don't want to miss a single child's story, you can subscribe to my blog. Please and thank you!
Type your email address in the box and click the "create subscription" button. My list is completely spam free, and you can opt out at any time.