On May 5th, 2011, I was given the chance to say a few words about my daughter's oncologist at a fundraiser hosted by Gregory & Jeannie Trunz, in memory of their daughter, Allison. This year the dinner happened to be honoring my baby's doctor. The 14th Annual All-Is-OnE Dinner raised over $100K for an incredible organization based out of New York City called Making Headway. Making Headway personally helped Minty and I in countless ways, big and small, expected and unexpected. I was drowning in help when my daughter had cancer, and it wasn't always good help. This is why Making Headway really stands out with what they do, from commissioning studies, to providing support groups for siblings, to providing a reikimasseuse in the hospital, and everything in between.
My daughter, Minty, had a brain tumor removed when she was 6 weeks old, in August 2009, and 2 weeks later she was diagnosed with brain cancer.
In the ensuing days, we had the privilege of consulting with top pediatric oncologists of the world, many of whom were not only in America, but New York City itself. (I have the Cheathams to thank for that list.)
We went through the motions of getting second opinions, not really expecting a different diagnosis than the initial one of medulloblastoma at Columbia. However, Memorial Sloan Kettering and NYU both came up with ependymoma. This of course resulted in more rounds of meetings with Columbia, Memorial and NYU, as well as a barrage of emails and phone calls with oncologists in other parts of America. We were immediately saturated with statistics & schedules, numbers & timelines, and protocol and drug names that sounded like a Dr. Seuss language.
Our first two meetings at NYU before choosing any oncology treatment or hospital, were with Dr. Allen and Dr. Gardner. Dr. Allen did most of the talking, while Dr. Gardner sat quietly in the corner of the room - in fact, one could almost have mistaken her for Dr. Allen’s assistant. So it was surprising to discover in further research at home, that Dr. Gardner had co-written the Head Start Protocol with Dr. Finlay. Head Start is a high dose chemotherapy regimen ending in an autologus stem cell rescue of destroyed bone marrow. The aim of this protocol is to avoid radiation in children under the age of 10 yrs old. It was currently in it’s 3rd generation, and was being recommended for either diagnosis by NYU and Columbia, as well as an option by Memorial Sloan Kettering if we did not want to use the radiation they were suggesting.
Already in awe of Dr. Gardner’s humbleness, Minty’s father asked the doctors at NYU during our final round of meetings, what their definition of success was, beyond being ‘5 years cancer free after treatment’. Dr. Allen and Dr. Gardner replied that it would be for Minty not only to be alive and cancer free, but to thrive, to have all of her faculties intact, in short - “...for Araminta to fulfill her destiny.”
Well, this catapulted them into being, not just doctors who were curing babies and children of cancer, but poets.
Sharon Gardner’s pager number entered my speed dial list on September 22nd, 2009, and she swiftly became a daily part of our lives. Dr. Gardner truly engaged with Minty, taking the time to talk & play with her, and make eye contact, even though Minty was barely 2 months old when they met. Minty loved the attention, and was always happy to see Dr. Gardner, Kelly Ann and all her other friends at the Hassenfeld Clinic. Throughout treatment, we could page Dr. Gardner twenty-four/seven and always got a call back within 15 minutes. If Minty spiked a fever at 5am, Dr. Gardner would answer the page and have us pre-admitted by the time we got to the hospital 20 minutes later.
Minty completed five of the six rounds of Head Start with flying colors, when a baseline MRI showed new tumors that had grown whilst receiving high dose chemotherapy. She was pulled offthe protocol in March of 2010.
Dr. Gardner navigated the impossible task of explaining this news to us, which hit me harder than the cancer diagnosis itself. This has to be one of the truest measures of a doctor - one who cares not just for the patient, but the person too. One who can be present not only when things are going well, but also when things fail.
Amazingly, Dr. Gardner would visit with us at home over the next three months, even though we were now under the care of a palliative doctor. She would simply sit, and hold my daughter, and see how we were doing.
The day of Minty’s death, Dr. Gardner went above and beyond; filling the role of hospice doctor, caregiver, and social worker. I had refused to accept the new palliative-hospice team into our lives, and Dr. Gardner, thrownintoasituation, on her one day off, quietly filled those missing shoes on July 11th, as we said our goodbyes to Minty in the apartment she had lived and died in.
While it would be wonderful to focus solely on the success stories, and survivors, I would like to commend Dr. Gardner for continuing her life saving work & research despite the high stakes. To face the reality of potentially losing patients, on a daily basis, yet still keep going, requires an unwavering dedication, strength, and compassion we are all lucky Sharon Gardner possesses.