June 5th is a date that always reminds me to count my blessings. It isn’t the birthday of a family member, or a romantic anniversary. It isn’t a holiday. It was an ordinary Wednesday.
In 2002 I started volunteering at Duke University Medical Center on the Pediatric Bone Marrow Unit. The year prior had been a tough one for my family and due to all the support from friends and family, I felt a strong need to give back. I ran across the Best Buddies program at Duke which enabled me to volunteer with children. They placed each volunteer with a family of a patient undergoing a stem cell or bone marrow transplant. My particular family was a family of four from West Virginia. Their daughter hadn’t been feeling well and after multiple appointments and tests, doctors from home determined she had Acute myelogenous leukemia (AML), a cancer of the blood and bone marrow. She was 7 years old. The only possible treatment was a bone marrow transplant. She was accepted into the program at Duke and the entire family uprooted to Durham, NC where one parent would live at the Ronald McDonald House with their 12 year daughter, and the other would stay in a small 10x10 hospital room with their sick little girl. A caregiver had to be with her 24/7 with no relief except for moments of a nurse coming in for vitals and meds. If the parent was lucky, the nurse would take a little extra time so they could throw laundry in the common area washing machine or run to the restroom. The nurses on 5200 (the peds bone marrow unit of the hospital) were amazing, but their primary job was to take care of the kids, not to relieve parents. Hence the reason for the Best Buddies program. Volunteers allowed parents to get in a shower, to run errands, to take a walk, to gain a moment in the outside world again.
I remember the day that I met Beth. I wasn’t sure what to expect walking in and, to be honest, I was quite nervous. What if I did something wrong? What if I couldn’t emotionally handle it? Was this a mistake? I walked inside the door and was greeted by friendly faces and a vivacious little girl who sat at the end of her hospital bed cheering while watching Nascar, her favorite. Most of her hair had fallen out, but she’d refused to let her mom shave the remainder. It was long and bounced around as she did, with excitement from the race on TV. She had multiple lines leading from a port in her chest to an IV pole that went everywhere she went. And she smiled, bigger than I’d ever seen. 5 minutes inside the room with her, I knew I was exactly where I was meant to be. We had an immediate connection.
Over the course of the next few weeks/months, her little body endured more than any one grown adult, much less 7 year old little girl should ever have to endure. There were great days and terrible days, but more days than not, she smiled and her spirit shined through. Even with the odds against her, the bone marrow transplant was a success. The day she was released from the hospital was a bittersweet one. Her counts were good, she was ready to move to outpatient, but she was so tired, she could barely walk. On release day, doctors, nurses, other patients and their families lined the halls and cheered as Beth made her final walk out the door. I was there that day cheering alongside everyone. She needed to be carried, her body weak, but her spirit trying to remain strong. Her mom voiced to me that something wasn’t quite right. Even though blood counts were good, her smiles were less and her spirit was broken. In just 3 short months of knowing her, I saw the difference as well. Release day was the last day I saw Beth smile. Shortly after, the discovery was made that despite the success of the transplant, her body had taken all that it could. With her immune system compromised, she had developed other complications. She was put in ICU on a breathing machine in the hopes it would allow time for her body to heal.
On June 5th, 2002 I was driving home from work when I had a feeling come over me like no other. I had no plans to visit her that day, but something told me I needed to go. I walked into the ICU waiting room and called back to the nurse’s station. Beth’s mom met me in the hall in tears. She and her husband had made the decision to remove her from the breathing machine and let her pass. She asked me to be in the room.
I needed a moment.
When I signed up for this I had no idea. I had no idea I’d fall in love with a little girl. I had no idea of the bond I’d develop with the family. I had no idea how it would change my parenting, my perspective, my life. And I had no idea how I could ever witness a mother selflessly let her baby girl go.
Yet I wanted to be there. I needed to say my goodbye.
I stood near the back of the room when the medical staff came in to explain the process. The parents listened, numb to the words, gripping the hands of their little girl. Moments later, the doctor turned off the machine and we stood in a room watching the life of a once, vivacious 7 year old little girl leave in a few short breaths.
It was the saddest, yet most beautiful thing I had ever witnessed. There are no words to describe. Then or now.
The nurses lifted her sweet body and placed her on her mother’s lap as she rocked her one last time.
The end of 2002, I discovered I was pregnant. It was a bit of a surprise but we were thrilled, nonetheless. While seeing my OB doctor for the first time, he gave me my due date:
The date came and went with no arrival of baby (he was a week late), but Beth’s memory weighed heavily on me that particular day….. in a good way. Her life was short, but impactful.
Beth would have graduated high school this year. Her mom and dad were never able to drop her off the first day of middle school, to nervously let her drive their car, or to take pictures before her senior prom. Some people would say they were robbed of that time. And while I don’t completely disagree, you can’t dwell on 11 years of what ifs. Instead celebrate the 7 years of Beth’s life. I only knew her for 3 short months, but she changed me forever.