Stefany Shaheen

Friday marked the end of an era for our family. Our two-year journey into medical research is one that I am sure to draw on again as I continue to blog. But today, I find myself oddly nostalgic and deeply grateful as Elle and I reflected together on this challenging and compelling experience.

28 days to the day after Elle was diagnosed with Type 1 Diabetes, she enrolled and began receiving treatment in a clinical research trial at Yale-New Haven hospital. The protocol for this trial was demanding and required a serious commitment from her, first and foremost, but also from everyone in our family.

It all began with a search on the JDRF website in a desperate state of denial and with a naive sense of hopefulness that a cure could be found through my own research – if I just looked hard enough. After uncovering a few different trials I thought Elle might be eligible for, I made a series of phone calls to endocrinologists and any other expert I could find who would share an opinion about the way to approach this process.

Ultimately, I was looking for someone to help me shoulder the burden of responsibility that comes with making a decision to have your child engage in an elective and experimental treatment. My husband and I were torn between our feverish commitment to support the quest for a cure in any and every small way we could, while wrestling with the uncertainty of what this would mean for Elle. In those early days immediately following her diagnosis, we invited anyone who would listen to help us carry the weight of what it would mean to make this decision.

After I spoke extensively to the lead researcher for this trial, read all the information I could get my hands on and spoke to every other family member or friend or expert I could find – including Elle’s doctor at Joslin Diabetes Center – we were on our way to New Haven. Our first trip was a poignant reminder that life is unpredictable. Despite my tireless effort to weigh every scenario, assess the risks associated with undergoing treatment and carefully arrange child care for Annah, Caraline and William – I was unable to control the rapid spread of cold weather germs.

Thankfully, Craig and I decided it was important to make the first trip to New Haven together because while he was driving, I was holding the only grocery bag we happened to have in the car while Elle continually vomited over and over and over again. A virulent stomach bug arrived just in time for our trip. Now Elle was only one day away from starting treatment, which had to begin within 28 days of diagnosis, but could only begin if her white blood cell count was in a healthy range. Not to mention the fact that we were staying with our dear friends and their new born baby and agonized over whether or not we would be exposing their little boy to vicious germs. Thankfully, they were willing to take the risk and our first night at their home was spent in quarantine complete with a hyper vigilant approach to hand washing and disinfecting.

Every medical research trial is different and the protocols change depending on the trial. The trial Elle was in came complete with a rigorous regimen including fourteen straight days of IV infusions and extensive daily lab work. The stomach bug postponed Elle’s start date so what was going to be two weeks away from home, our family and school quickly became 18 days. While we were at the hospital waiting for the doctor’s to give the “go ahead” for treatment to begin, Craig had to return home to care for Annah, Caraline and William who had also contracted the stomach bug. He made it home just in time for the stomach bug to hit him and then me.Needless to say, you can see why this trial was a sacrifice for everyone in our family. Damn stomach bug!

Fortunately, every other trip to New Haven was much less eventful. Over the last two years, Elle has spent four weeks at the hospital receiving IV infusions, given countless vials of blood, participated in four mixed-meal tolerance tests, had two port catheters put in her arm, endured too many needle sticks to count and danced one too many times to the bathroom with an IV pole. Our family has had to cope with periods of separation, logged thousands of miles back and forth to Connecticut, missed too many days of work and school and paid too much for parking. And other than the dreaded stomach bug, I would not change a thing. And I am confident that Elle shares this sentiment.

We have had the privilege of working with an outstanding team of medical professionals. We met some remarkable families traveling far and wide to participate in this trial. Elle was cared for by a superb team of nurses who taught her how to test her own blood sugar and give herself shots at a time when she was completely dependent on me or Craig to give her shots any time she wanted to eat. We got free test strips! We enjoyed time with outstanding friends and watched their little boy grow in a more intimate way than would otherwise have been possible. We watched one too many romantic comedies – finding down time in the hospital strangely restorative. Not to mention, the handful of trips to NYC we had the privilege of taking to see a Broadway play or two or three. (Maybe we should bullet point these statements in this paragraph to further highlight the benefits. What do you think?)

Our first expedition into medical research had its shares of trials and triumphs. More than anything along the way, I find myself remembering all the amazing people we had an opportunity to spend time with and meet. I miss everyone already, but I know that our paths will cross again. We will are all connected now by a shared devotion and tireless commitment to curing diabetes. Please let me know if you have a story to share about participating in a clinical trial. If you do not yet have a story to share, I would strongly encourage you to explore the possibilities. It is true that you get what you give.