Recently I was asked to write a letter to be included in a presentation to the Penn State Research and Development team. This presentation was intended to bring real life stories to those who actually have the ability to start change...new treatment options for pediatric cancers and new hope for families.
My Pipers story was part of this and it was a pleasure to be asked...though gut wrenching to remember things that I must block out in my attempt to continue surviving. This is my letter. I hope it touches people and ignites the change so needed.
To whom it may concern,
After the birth of my second daughter I remember sitting for hours, staring at her. She fascinated me with her bright blue eyes so like her older sister. Her cheeks were the perfect plumpness to kiss on and her petite fingers naturally folded over mine. However each of these physical attributes paled in comparison to how much hope I felt when I held her. Who would this sweet girl become? What sort of personality would she have? What would her favorite color be or her favorite movie and how would she dance when her daddy pulled out the guitar and played for her and her sister?
What would Piper Jean Needham be when she grew up?
Many questions and dreams and hopes that I held for my daughter are left unanswered. Piper Jean Needham was diagnosed with a rare cancer called Infantile Leukemia at a mere 10 weeks old. From the first moment we heard “she has leukemia…and it’s not the best case scenario” we lived with a strangled fear. Piper’s cancer has few survivors. It most times includes a gene rearrangement called the MLL rearrangement that gives each of her leukemia cells partial characteristics of ALL and partial characteristics of AML. This was a crafty beast of a cancer. Each oncologist that we saw walk through our hospital room those first fearful days, came in with trepidation. Here I was a mother barely over birthing this sweet life and now I had to fight to keep this sweet life…how could they encourage me and my stoic husband when there was simply so very, very, very little information and research to show me in Pipers favor? There simply were few answers to our battery of questions and ugly answers at that.
So they came up with a plan. It was motley at best. It would consist of massive amounts of high dose chemotherapies as well as massive amounts of steroids as well as massive amounts of medications that would keep her body as safe as possible as we broke it down with the small hope of fixing it. Piper began treatment in September of 2009 and spent 80% of the first year of her life in that same hospital. Treatment did indeed break her down. The high doses of Methotrexate caused severe burns where it seeped out of her skin and broke down her fragile epidermis. This, despite the catheter she was given and the constant fluids to get the poison out of her system quickly without damaging organs. Piper would receive adult doses of Daunorubicin, Cytarabine and Vincristine in rotation as well as Dexamethasone and Prednisone.
Each chemotherapy that my spouse and I had to sign consent for included a list of possible and probable side effects. And each time chemotherapy was administered we knew it was damaging something, somewhere. But what else could we do…we must continue to follow the plan. As a result of monthly steroid use, Pipers bones were brittle and she broke her elbow at 8 months old. As a result of Vincristine, she struggled with neuropathy and never walked independently. After about 14 months of non-stop, intensive treatment Piper contracted a virus called Cytomeglovirus which caused her sixteen month old form to drop to a shocking 14 lbs. and once diagnosed, gained her almost two months inpatient on the rehabilitation unit to relearn the eating process and the strength to even sit up unattended.
By the time Piper turned two, she had completed treatment. Having been in remission from the very first round of chemotherapy, the doctors were finally smiling when they spoke of her future. She was plump. She had fine, wispy blonde hair that I daily pulled into the sweetest little piggy tails you have ever seen. She spoke and comprehended as well as any other little girl and used a significant amount of sign language in addition. Piper had a walker that we covered in pink polka dotted duct tape and attached a small purse to the front for her to carry all the normal treasures that a two year old comes across. Chemotherapy was over, clinic and blood counts were less common and life was as normal as it could be and as sweet as it ever got to be.
Unfortunately this sweet normal was quickly upended when a UTI causing a fever caused a CBC to be ordered and showed “suspicious cells”. Relapse was confirmed within 24 hours and once again we found ourselves struggling to breathe and walk and hope. Like Pipers first diagnosis, we were stunned. Unlike Pipers first diagnosis, we were not in uncharted territory. This time we knew too much. While an Infant Leukemia diagnosis typically had a less than 30% survival rate, we knew that a relapse Infant Leukemia diagnosis would halve that. So the there was more chemotherapy, some experimental and some not. There were more hospital stays, more medications, more hair loss and more unanswered questions. Piper prepared for and had an unrelated Bone Marrow Transplant on December 28, 2011 following a week of twice daily Total Body Radiation. At this point each doctor who cared for Piper was clear that they were putting all their proverbial eggs in the one basket. This was the final attempt to cure my daughter. The transplant process took our battered family and beat us even more. My husband and I took turns being with Piper in her solitary room and being home with our very busy 6 year old daughter. My husband dropped out of his Engineering program at the University of Georgia. Our first born cried for whichever parent was out of her arms and Piper physically needed us for every little thing.
And then, a month and a half after transplant my Piper relapsed again. This time there were no fragile hopes to offer to us. Her cancer had outwitted each of the cocktails of chemotherapy, total body radiation and a bone marrow transplant. We were sent to St. Jude for a experimental Natural Killer Cells transplant which further damaged her fragile body. After 4 weeks of treatment on the Bone Marrow Unit, Piper was transported to the ICU and sedated the next day. Her lungs were sick, her heart was weak and her blood pressure was unstable. For three weeks, we sat by her bedside and sang to her and prayed for her and waited for more lab results or blood work or a miracle of the biggest demand.
When your child is diagnosed with a rare cancer, you are isolated. Miniscule amounts of hope or information or successes are what you cling to. There are no other options when you are fighting for the life of something you conceived, carried and delivered into this world. There is always the knowledge that not enough has been done. For Piper and for children before her with pediatric cancers and for children who will battle pediatric cancers in the future. When it came to my own daughter, enough was done to give us some beautiful days in the midst of the ugliest of ugly and even this could not satisfy this broken mothers’ will to find a cure.
Healing. Hope. A cure and a future.
Three weeks after Piper was sedated in the ICU, she breathed her last breath. I was holding her in my arms just as I had shortly after she was born to me. This time there was few thoughts of whom she could or would be and in its place was a grief so tangible I still cannot believe I have survived. Piper was covered with IV lines and tubes and her beautiful blue eyes were closed to me though I spoke to her of my love, of the love of her Daddy who held her hand and the love of the big sister who wept openly. As I passed her battered and beautiful body over to the nurses I knew that we had done all we could.
But there is still so much more that you could do. You can support research. You can set aside money and time to learn more about rare cancers as you do common and popular cancers. You can chose to not turn away when you see a bald child and you can chose to instead save that child through new treatments, new medications and ways to lessen the risk of secondary cancers or side effects. You can do it. I could not do any more than what I did…love my daughter fiercely and daily but I sure as hell can ask you for more. I do and I always will. I’m thankful that some have not given up on these children. They are the reason I had the years I did have with Piper and not mere hours or days. They are the reason I was able to hear a sliver of hope and cling to it and for that, I am grateful. Grateful but never satisfied.
Piper Jean Needham lived two years and nine months. She will never see three years old or four or twenty-two. Piper will never have a crush on her next door neighbor or the chance to walk into her elementary school behind her big sister or the chance to scare her father while he teaches her to drive. Her life ended April 3, 2012 and though I do know that she was a spunky and fancy little thing that loved the color pink, the movie Annie and to sing along with Allison Krausse, and a million other details forever etched in my memory, this is not enough. Because when her Daddy pulled out his guitar and sang to his girls, Piper was the first to shake her hips and raise her arms and giggle and bring sweet tears to my weary and worried eyes each and every time and that memory shouldn’t be just a memory.