Maintenance Day 81: One Year Since the Beginning

One year ago today was the day that started it all. On June 28, 2014 we went to a graduation party. At one point, Scarlett was walking along a planter and fell. It was about 12 inches high and no one really saw her fall. We heard her crying and that was about it. For the remainder of the party, she kind of snuggled with me and everyone babied her because she is just so darn cute and snuggly.

The next day, June 29, was her and Evangeline’s birthday party. When they woke up, Scarlett was crawling everywhere. She would stand if we set her down but she wouldn’t take any steps. We were busy setting up and cooking for the party so we didn’t have too much time to worry about it. But as we finished up, we took a closer look at her. This time when we put her down, she wouldn’t bear any weight. She immediately collapsed to the floor every time. Now I started to panic.

As soon as my sister-in-law, Monica, came over, I asked her to check on Scarlett. She is a pediatric physical therapist so I knew that she could at least help us figure out where she had hurt herself. She manipulated both ankles, knees and hips without Scarlett showing any discomfort. To me (and my inexpert opinion), I felt this meant her joints were ok. I was leaning more towards a fracture. But we couldn’t really find that either. During her birthday party, I don’t think she took more than a couple steps. There were so many people around and so much activity that she didn’t need to. But afterwards, we went to Monica’s house to play and she observed her for a couple more hours. Scarlett would stand occasionally but for the majority of her movement, she crawled. It broke my heart to watch my sweetheart, who had just celebrated her second birthday, crawling. Monica suggested we see Scarlett’s pediatrician as soon as we got home the next day.

On Monday, June 30, we saw Scarlett’s pediatrician for her first appointment for her leg. She watched Scarlett walk down the hall. While walking away from her, Scarlett limped on her left leg. While walking towards her, Scarlett limped on her right leg. Dr. C took a blood sample which came back quickly. She was slightly anemic but nothing too significant to worry about. Since we couldn’t figure out which leg hurt, let alone where in the leg her injury was, we decided to monitor her for two weeks. We didn’t do x-rays since we wanted to avoid radiation in such a small child. Besides, we were told, if it is a fracture, they usually heal within a couple weeks at this age.

Over the next week, Scarlett seemed to improve. By Friday, July 4, she was much better. She was even to the point where, just as we were leaving to watch the fireworks, she tried to jump off the couch. Something that I never would have noticed before was a big deal after a week of not walking. As soon as she landed, she crumpled to the floor in tears. I scooped her up, calmed her down, and we left. The entire night, I listened to her cry and watched her, again, crawling. She again refused to put any weight on either leg. So as soon as the fireworks were over, I took her to the ER. Probably not the best day or time to do so. I was interrogated by a police officer, waited a few hours to be seen and was rushed through her evaluation. By the time the doctor saw us, she was sleeping. He rolled her ankle around and took an x-Ray. He said, watch her over the weekend and follow up with her pediatrician on Monday.

On Wednesday, she was walking enough to go to swimming lessons. Unfortunately, a bigger kid crashed into her, knocking her down. Needless to say, that was her last swimming lesson. We returned to her pediatrician the next day. Dr. C took x-rays of both legs and her pelvis. She couldn’t find anything so she referred us to a pediatric orthopedist for the next day. Dr. K was very kind. He took more x-rays, watched Scarlett walk (or refuse to walk) and diagnosed her with a greenstick fracture. A greenstick fracture is common in toddlers because of their soft bones. The bone breaks like, well, like a green stick. Inside the bone and vertically vs horizontally across the bone. It heals within a few weeks and doesn’t typically require a cast. He made me feel better by telling me that his own daughter had one at about the same age. We were to follow up in a week for another x-ray because, sometimes, it was easier to see the fracture when the bone began to heal.

Scarlett seemed to slowly improve over the next few weeks. She was still not walking much but seemed to be in less pain. Then on the morning of August 7, during breakfast, we saw that Scarlett stopped using her arm. She wouldn’t lift her arm above shoulder level. If we lifted it for her, she didn’t complain but she cried every time she did it herself. We decided enough was enough. Our daughter was now not using three of her extremities. We asked for an immediate appointment with her pediatrician. Unfortunately, she was on vacation. Fortunately, Dr. H had an opening. For an hour and a half, we told her the whole story. We gave her our entire family, personal, pregnancy, life history. She gave Scarlett a check up. And, together, we came up with a plan. She was going to repeat her blood work and refer us to a rheumatologist. Perhaps, Scarlett had juvenile arthritis. Her lab work would include all of the markers that the rheumatologist would need. We left feeling better. I went to work and managed to get through the day. At 6:00 pm, I had a call from an unknown number on my phone. I answered it and, that was the moment that my life changed.

It was Dr. H. She told me that Scarlett’s lab work had come back and it was concerning. She wanted me to go home, pack a bag and get Scarlett to Children’s Hospital in Milwaukee within 2-3 hours. She told me all of the lab values but by then I was in a fog. She said that she couldn’t say what Scarlett had. Worst case scenario, it was cancer. Best case scenario, it was nothing. I went to my friend at work and collapsed. I couldn’t hold myself together. I couldn’t hold myself up. I had to find a way to tell my husband that our child may have cancer. And I had to find a way to tell our parents that their granddaughter might have cancer. Five weeks earlier, Scarlett had been mildly anemic. Today, she may have cancer. We were learning how quickly life could change.

(Just writing this gives me a panic attack. I cry and sob as I reread what I wrote. I can picture so many of those moments perfectly in my mind like it was yesterday. I cannot explain how traumatic those little moments are looking back. I don’t know if, as the years go by, those memories will fade or the emotions will diminish. Which is part of the reason why I write these memories and moments down.)