Sometimes it’s the parking that threatens my state of calm. Then there’s construction blocking the ramp forcing me to maneuver my daughter’s wheelchair off the curb backwards onto a busy two way street. Always it is the moment when I have to restrain my daughter as the nurse draws blood. Laying my torso across Luisa’s, pinning down her hands with mine, my resolve wavers. I begin to question my decision to enroll her in an experimental drug trial. As the needle goes in her purple vein, I whisper in her ear, “I’m sorry. I know this hurts. This medicine is going to help. YOU are helping, Luisa. YOU are doing brave things.” A message for my heart as well.
Our Experience in an Experimental Drug Trial
Currently we are in Week Three of an experimental drug trial that aims to alleviate the symptoms of Rett Syndrome, a rare, severe neurological disease my daughter was diagnosed with in 2014 at 20 months of age. It might seem odd that I used the word “we” instead of “she” at the beginning of that last sentence. But I need you to understand this truth: drug trials are a commitment for the entire family, not just the patient. Drug trials are much more than adding an extra medication to your child’s daily routine. For caregivers, they require time off work for all-day appointments where your child undergoes numerous tests while you fill out detailed questionnaires about their current health and symptoms. Each trial may require six to eight different appointments ranging from a few hours in length to long days of six or more hours at the hospital. If you do not live near a research center you will need to travel to the experimental drug site and stay at a hotel with your child, who may or may not sleep well away from home. You will leave the doctor’s office with a diary for meticulous recording of your child’s eating habits, medication dosage times, and behaviors. The questionnaires, rating scales, and diary entries will require hours of the caregiver’s time.
In a previous drug trial, Luisa had to wear a complicated bodysuit under her clothes to measure breathing patterns and heart rate. Our current drug trial does not require such high zoot garments but does pose other inconveniences. Luisa, always picky with her drinking habits, has rejected the drug’s taste. I plead with her to swallow each milliliter.
This particular drug has proved promising in our Rett Syndrome community. While taking the drug, girls once unable to purposefully use their hands for their constant wringing and tapping (Rett Syndrome hand stereotypes) are suddenly able to hold a pencil, draw a circle. There are reports of girls speaking words after years of alternating silence and screaming. Reports of a steadier gait. Longer attention to tasks. Improved breathing patterns. So with these promising reports in mind we dispense pink liquid in a syringe, praying for improvement in our girl too.
We had our longest appointment two weeks ago, before our state had gone into COVID-19 precautions. This appointment consisted of a morning exam, followed by a lunch break, and then an afternoon exam. The morning exam included urine samples, EKGs, and a blood draw. Luisa has a reduced ability to process pain but this did not keep her from kicking and screaming through the morning’s blood draw. The panic at being restrained was evident in her eyes. Forcibly restraining your child feels entirely unnatural, so I mentally coached myself through the task. It was over in only a few minutes. After a brief neurological exam we took a break for lunch.
During our lunch break we left the clinic to traverse the numerous walkways leading to the over-packed hospital cafeteria. It was in the second corridor that Luisa finally broke down. She was exhausted from the morning exam, over stimulated and overwhelmed. I wheeled the chair to the side of the walkway and lifted my angry, screaming seven-year-old daughter from her chair. I sat down on a bench, my back to a long window that looked out on downtown Birmingham, wet with steady rain. I positioned Luisa on my lap facing me and allowed her to scream and cry and throw her head down on my chest in frustration. After awhile she ceased her protests, laid her head on my shoulder, and fell asleep.
It was from this place on the bench that I looked up to see a piece of artwork hung on the wall at the end of the corridor. It was a quilt made up of brightly colored hexagon patches. Stitched over the top layer of the quilt was a black line drawing of a mother cradling an infant; just as I was cradling Luisa in my lap. Life imitating art. Or perhaps art imitating life because parents have cradled their children this way since the beginning of time — carrying them in our arms to receive nourishment. Carrying them into new, unexpected places, holding them until they gather the courage to venture away from our safe arms. It struck me as I sat on the bench between clinic and hospital cafeteria that my life as a special needs mother would mirror the line drawing on the quilt far longer than I had once anticipated, when disability was an abstract term, not a living / breathing reality in my life. Looking down at my exhausted child, cradled in my arms, I wondered why?
Why We Participate
Why endure? Why keep carrying her into a voluntary pharmaceutical trial when tears and exhaustion are part of the package? Why keep carrying her only to lay her on an exam table, draw her blood to be studied?
Because the mother in me honors the mother in you. You — the mother receiving the diagnosis for your daughter today. Who is asking the question, “What is there to be done?” Who is hearing in response, “No treatment. No cure.”
Because my daughter qualifies for these trials while others do not. Her heart is healthy, her age meets the criteria. If those who can do something refuse, where does that leave future generations? I will not turn my back, allowing others to take our place, then line up to receive the drug when it is finally approved. If I can help today, I will.
Because I know the heart of the universal mother in that quilt. Mothers are a force to be reckoned with. We will do anything for our children.
Because I would give anything to hear her speak again. I would give anything to ease her suffering.
We All Sacrifice for the Greater Good of the Community
It was a short twenty minutes before Luisa began to stir on my lap. I transferred her to the wheelchair before continuing our trek to the cafeteria. Pushing her chair further down the corridor I passed the quilts, pausing to examine them further. To my left were elevators that go up to the Labor and Delivery Rooms where mothers, weary and drained, cradle their newborn babies — where I cradled my Luisa seven years ago. I imagine a few of those babies, like my Luisa, hold secrets in their DNA that, once revealed, will break their mothers’ hearts. Two floors below those Labor and Delivery Rooms, Luisa and I are doing what those mothers and babies cannot yet do — we are working towards solutions. We are offering hope.
Two weeks after this long exam, we find ourselves in a totally different world. Luisa is still participating in the drug trial, even amongst the fear of COVID-19. Our family is practicing social distancing and isolation to prevent the spread of COVID-19, a virus that threatens the most vulnerable, including children like Luisa.
Reading posts on Facebook and Instagram, I see that black-line drawing on the quilt played out in real life as mothers and fathers gather their children close, cradle them near, all for the greater good of the community. In this way we honor one another. We honor the vulnerable among us, the children with compromised immunity, the elderly, the ill. We sacrifice for the greater good.
We must pull ourselves in. Cradle close. Protect our community. Protect the vulnerable. Protect my Luisa.