The Loving Family
For the Loving family, knowledge is power, and they are forever grateful for TrialNet.
Our story starts off similar to many others. The initial surprise Type 1 diabetes diagnosis. Our youngest daughter, Nora, was diagnosed on June 13, 2005. We have no history in our family of Type 1 diabetes; that we are aware of. We became aware of TrialNet, in 2006, at our local American Diabetes Association – Camp Tokumto; a day camp for Type 1 kids aged 5-8. In a quest to understand where this diagnosis came from, I signed our eldest daughter, Evelyn, myself and my husband to be screened. Evelyn was 12 years old and spending less time with us and more time with her friends. I knew I wouldn’t be able to catch the Type 1 signs (frequent urination, unquenchable thirst, shaky hands) like I was so easily able to witness with Nora.
"For our family, knowledge is power and signing up for the TrialNet screening was done without hesitation."
Evelyn’s results came back testing positive for 3 out of 4 autoantibodies. We were heartbroken but we were equipped with the possibility that she may develop Type 1 and we would be ready. The results didn’t scare us in that we changed how we lived. The knowledge armed us with the ability to assess a situation should Evelyn feel a low or a high blood sugar. With the test results coming back positive we then advanced to phase 2 of the screening; fasting bloodwork. The results from the bloodwork didn’t come back any better but we were able to establish base lines and keep an eye on her blood glucose levels. During our years in the TrialNet study phase 3 was oral insulin. To be honest, the idea of giving my daughter oral insulin made me hesitate. What were the side effects of taking oral insulin? Would taking this kick start her Type 1 faster? Would it prolong the diagnosis? So much to think about. At this time, we found out we were expecting our third child. There was so much on our plate as a family that we had to back out of phase 3. We were unable, at that time, to make an informed decision on what was best for our daughter.
"In 2011, Evelyn was 17 and we were at a diabetes event and TrialNet was there again. By this time, we had gotten to know our local TrialNet screening nurse, Tammy. We asked about having Evelyn screened again and went forward with the screening. Again, the results came back positive for autoantibodies."
From Evelyn’s initial screening in 2006 to 2011 she had carried fast acting carbs and sometimes tested her blood sugar when she felt “off”. So it was no surprise when she entered our bedroom late one night to tell us she didn’t feel well. I suggested she take her blood sugar and it was over 400. I asked when and what she had eaten for dinner that night. It had been a good 4+ hours since she had dinner and had consumed low carbohydrates. That’s when I looked at my husband and we knew another diagnosis was eminent.
One week after high school graduation and 5 days before her 18th birthday, our daughter Evelyn, was diagnosed with Type 1 diabetes. I had taken her into the ER that night while my husband stayed behind with Nora and our son, Jackson. When Nora woke up that morning she cried upon hearing of her sisters’ diagnosis. Evelyn took her diagnosis so well. Sure, she was upset, we all were but the shock wasn’t there. She was able to focus on what the Doctors and Nurses were teaching her on how to care for her diabetes and infusing what she witnessed Nora do with her diabetes for years. I like to say we had 6 years of borrowed time from initial screening results to actual diagnosis. It didn’t scare us or change how we lived; it prepared us for what was to come.
Our son, Jackson, is also in the TrialNet yearly screening. So far, his results have been negative. This hasn’t stopped me from occasionally testing his blood sugar if he seems to be going to the bathroom more or drinking lots of liquids, but having the test results provide some comfort for us; even knowing those results could change.
"I am constantly asked about the TrialNet screening and if other families should participate. I like to share our TrialNet story with others but preface that each family needs to make their own decision. Even though Evelyn received her official Type 1 diagnosis our experience was a positive one. For the Loving family, knowledge is power and we are forever grateful for TrialNet."
For more information about participating in TrialNet at Cincinnati Children's Hospital, contact Tammy Weis, BSN, RN, CCRP at 513-636-4212