I’m not really sure where this story starts. In the days and months since her diagnosis, I have analyzed and re-analyzed all of the things that could have potentially caused Lyla’s immune system to attack her pancreas. At diagnosis, the doctor told us her body had likely been working on this for for quite some time. I have resigned myself to accept that I will never know when her diabetes actually began.
When Lyla was 17 months old, her baby brother Nicolas was born. Lyla had been a happy, but strong-willed baby. We had moved in with my parents while we were waiting to close on a house. Lyla loved being with Grandma and Grandpa and having an instant audience at every turn. When Nicolas was just a week old, we moved into our new house. I have a full-time job teaching health at UVU, but had taken that semester off to be home with the new baby. I’m not sure any of this is relevant, but that semester (October-December) was one of the hardest times for me as a mother. Lyla was not happy. I have many memories of sitting in the recliner feeding the baby with Lyla screaming at my feet. I blamed it on the terrible twos, adjustment of the new baby, and an unhappiness about leaving Grandma and Grandpa behind. In the back of my mind, though, I have to wonder if it was something more.
In January Lyla had two ear infections. These were not her first ear infections, but the first time it wasn’t quickly relieved by the medication. We ended up back at the doctor’s office for a stronger medication. It was also in January that Nicolas started sleeping through the night. After many long months of sleepless nights, I was thrilled at the thought of sleeping through the night. Oh, the irony.
I was back at work and more than busy with teaching, research and other projects. Greg was in his first year of a PhD at the U and was working there as a teaching assistant. With two kids under two, we were always busy and always tired. The kids stayed with my mom while I taught on Tuesdays and Thursdays. When I came to pick up the kids after work on Thursday, February 10, my parents told me that Lyla had continually been asking for a “dwink water”. I thought it was odd, but my parents have a pretty cool water cooler and all of the grandkids love it.
The requests for “dwinks” continued into Friday. I did a little bit of research online and discovered that excessive thirst is a symptom of diabetes and almost nothing else. I called the doctor’s office on Friday and talked to one of the nurses there. She reassured that it was likely behavioral, that Lyla was wanting drinks to get attention or because she liked water or because it was getting hotter outside. We even wondered if she was dehydrating at night because the heat was set too high in our new house. We tried a couple of basic modifications — I put a sippy cup easily in her reach so she could get a drink anytime she wanted and we turned down the heat and dressed her in pajamas that weren’t as hot. I thought it got a little bit better.
On Saturday morning she fell asleep while playing. While this may be normal for most almost-two-year-olds, it certainly wasn’t for Lyla. I remember thinking that she must not feel well. She had no real symptoms — no fever, vomiting, running nose, diarrhea — nothing. I remember going for a run that afternoon with my sister and talking about how I was worried about her. By the time we finished our workout, I was starting to panic. I called Greg, who reassured me that she had gotten up and was playing normally.
On Saturday night she was up at about 2 in the morning and had wet through her diaper, onesie, and pajamas. Greg changed her and put her back to bed. By morning, she wet through everything again. It was certainly weird, but she had been asking for lots of drinks, so we figured she was just over hydrated.
The pleas for drinks lessened over the weekend. On Sunday night as Greg was getting her in the bathtub, he put her on the infant scale that we bought when she was a baby and not gaining weight. She was at 22 pounds, 13 ounces. When we had her in for ear infection in January, she had been at 24 pounds. I started to get a pit in my stomach. That night she wet through everything again. She was up at 3 in the morning, shivering because she was so cold from being so wet with urine. I walked in her room as Greg was changing her again. The pit in my stomach intensified. Perhaps it was mother’s intuition, but at that point I knew something was wrong. It was like a bolt of lightening that went right through me. Her behavior was beyond bizarre. I thought back to my sister-in-law, Lisa, who told me how she knew something was wrong with her one-year-old before they got a cancer diagnosis. I am generally an anxious person and I am prone to worry, but something felt different Sunday night. I went downstairs and got on the internet to look up the signs and symptoms of leukemia. None of them fit. Then I looked up neuroblastoma, which is what my niece had. Again, it didn’t fit. Then I looked up diabetes. There were several symptoms that seemed to fit. I was planning to call the doctor in the morning anyway, but was thinking that it would be several days, if not weeks, before I’d be able to see him. I fell asleep that night thinking about how I would forcefully insist that she be seen by the doctor the next day.
Monday morning she seemed fine. She was happy and cheerful and didn’t ask me for water at all. Regardless of her good behavior, I couldn’t shake the feeling from the previous night. At 9 a.m. when the doctor’s office opened, I called. They could get me in at 3 p.m. I was thrilled to be seen that day. Even though it was Valentine’s Day, our day was pretty uneventful. We delivered Valentine’s to some of Lyla’s friends in the neighborhood and we watched Barney. Greg had the car in Salt Lake, so we had my dad come pick us up at 2:15, then we went to my parents and left Nick with them while I took my parents car to the doctor. We got right into the room, but then waited what seemed like a ridiculous amount of time. I have no idea how long it actually was — maybe it just seemed to take forever. When the doctor finally came in, I explained her behavior and told him I was worried about diabetes and cancer. He gave me a look like he was doubtful that there was something wrong, but he was respectful of my concerns. He looked her over for a bit and decided that he would do a glucose test and then check her urine. He told me that the blood glucose test would likely be normal, but they would follow up with a urine test to see if there were any problems.
The doctor sent in the nurse to do a blood glucose test and then said he’d be right back to put on the urine catch bag (because she was still in diapers). The nurse tested her blood and walked out. Dr. Johnson was in another patient’s room. Our door was cracked open, so I could hear the nurse talk to him when he came out. She said something about it not reading and they talked about if the urine test was necessary. Dr. Johnson came back in the room to tell me that they were going to fore-go the urine test and send us to AF hospital for full blood work. He went on to say that if the blood confirmed a diagnosis of diabetes that they would admit her at Primary Children’s and then explained in detail what would happen next. After he spent nearly five minutes explaining that, I asked what would happen if it came back negative. He said, “Then she’s fine and it’s behavioral.” That was it. I was expecting a much more elaborate response involving tests for cancer or something else. The brevity of his response made me fairly confident that the diagnosis was going to be positive.
The doctor’s office was only a couple of blocks from the hospital. At this point my head was spinning. Did he really mean to say “confirm the diagnosis”? Does that mean that he thinks she does have diabetes? I called Greg on the way to the hospital and tried to hold back tears while I told him. I continued to struggle to hold back the tears as we waited for what seemed like a long time for them to draw her blood. Finally it was her turn. Dr. Johnson had said that they would rush the lab work and he’d call within 30 minutes. Lyla and I went back to my parents and Greg met us there. We decided to order some pizza and wait for a phone call. I left to go to our house and pump milk for Nick. As I was pumping, Greg called to say that Dr. Johnson had called and confirmed the diagnosis. We were to hurry to Primary Children’s. We were told not to feed Lyla (it was about 5:30 or 6 p.m. at this point), but to head straight there. I finished pumping and then started packing things for us to take for the hospital and things that Nick would need at my parents and sister’s. Greg and Lyla came down to the house to finish packing with me. I got things loaded and headed to my parents house with Nick’s milk. Greg and Lyla walked next door to take Lyla’s little friend a Valentine and to let the neighbors know we wouldn’t be there for a few days.
Greg then met me with Lyla at my parents house. At this point, my memory gets a little blurry. I remember only limited snapshots of time, but have no recollection of the events as they happened. Several members of my family had gathered at my parent’s house. I’m not sure if they were visiting because of the holiday or if my mom had called them about Lyla. I’m not even sure who all was there. I remember my sister-in-law Lara giving me a hug and telling me that everything would be okay. I remember looking over at my sister who was sitting on my parent’s couch. She had Lyla laying on her shoulder and she was gently rubbing Lyla’s back as tears rolled down my sister’s face.
We left Nick with my parents and started driving to Salt Lake. Lyla screamed for the first little while. She was hungry and I’m sure she didn’t feel well. We later learned that her blood sugar was 560 (normal for her age is around 100) with the blood draw at the hospital. Greg got the internet on his phone to pick up her favorite shows and she calmed down and watched them. I called my boss to tell him I wouldn’t be teaching the next day and Greg called his parents.
We arrived and checked in at the hospital. They were waiting for us, and a nurse took us directly to our room. Dr. Lindsay, a pediatric endocrinologist met us and we chatted with him about the diagnosis for a while. He was a nice man with a little sarcasm. He looked like Santa Claus. Lyla fell asleep on my shoulder while we chatted. They checked her blood sugar when she arrived. It was 336. They finally allowed her to eat and then administered her first dosage of insulin.
Those of you who know our little Lyla are aware that she doesn’t sleep outside of her crib. We had a nightmare of a night trying to get her to sleep somewhere else, and in the same room as us. We finally got her down at midnight and she woke at 1:30 screaming. We got her back down by about 2 when they came in to check her blood sugar. Obviously the needles woke her. She screamed and wouldn’t settle down. We spent the next hour or so trying to settle her down. Finally the nurse came in at 3:30 and offered to take her for a walk. She brought her back a little while later asleep. I still remember tiny little Lyla in her footed pajamas walking the halls of Primary Children’s. We caught her diabetes early enough that she had no major complications. She was one of the healthiest kids in the hospital. We were lucky.
The rest of my blog posts from the hospital and in the time since, I have posted on the blog link. Like most stories, this one has no ending. The diagnosis was just the beginning for us. It was a day that forever changed our lives.