Jewell toddler battles leukemia
JEWELL – Jeff Scott called it every parent’s worst nightmare. It was in late April that he and his wife, Lily, noticed their two-year-old daughter, Nora, experiencing some concerning symptoms.
“Soon after Nora’s second birthday, she fell and bit her lip pretty hard,” Scott recalls. “Hard enough that she had to go to the emergency room to make sure she didn’t need stitches. It bled pretty bad. She also had a nose bleed and an ear infection that quickly came back. That week, she was really pale and acting really achy.”
A new symptom was soon discovered: a rash of thin red dots under the skin. “Lily told my sister, Mindi, who is a children’s hospital nurse in Texas. She said it was petechiae,” Scott continued. “We Googled this, and at the top of causes was anemia, and at the bottom was leukemia.”
The toddler, who loves Disney princesses, and her dad went to the Van Diest Medical Clinic for a check-up. Thinking she was just going to need a diet rich in iron, Scott didn’t expect the doctor’s response.
“Dr. Subhash (Sahai) came in and gave me a hug,” he said. “I thought it was because he hadn’t seen me in a while. He said, ‘You need to call your wife and have her start packing. I need you to head to Iowa City now.'”
They quickly drove to the University of Iowa Stead Family Children’s Hospital where Nora was put through a battery of tests that evening on the pediatric oncology floor. At around 1:30 a.m., the Scotts were given the difficult news that Nora did indeed have leukemia.
“The next day, they put a port in her, did a bone marrow biopsy and a spinal tap,” Scott said. “Unfortunately, it had already spread to her spinal fluid at that time.”
Nora was diagnosed with stage 2, high-risk pre-b cell acute lymphoblastic leukemia with central nervous system involvement. With the advancements in modern medicine, doctors told the Scotts that a diagnosis with a standard risk has a survival rate in the low 90s, while a high risk drops it into the 80s.
Following a few weeks in Iowa City, Nora was sent home after phase 1 of her treatment was complete. “The first phase is the induction phase where they annihilated her immune system [to kill the cancer cells],” Scott said. “The phase we are on now (fourth phase) is delayed intensification and we are essentially doing it over again, knocking it down.” This puts Nora at risk of being sent to the ER and being admitted with a neutropenic fever, caused by an abnormally low count of white blood cells. The current phase lasts 50-some days, and she will have her next spinal tap on Dec. 11.
Each day, Nora takes between 5 to 8 medications in syringes. Scott said it’s gotten to the point where she can tell her parents with almost 100 percent accuracy what she is taking, by the medicine color and the syringe size.
Currently, Nora is going through a lot of changes, like different taste buds. When she is on steroids, she craves only salty things like bacon or Happy Meals, and she gorges herself at meals. When she is off the steroids, she barely eats. Scott said they try to feed her a scoop of peanut butter or something high in fat or protein–anything so that she takes bite that day.
“Recently, she has had neuropathy, complaining of her fingertips and feet having pains,” he said. “Pulling at her fingers saying they hurt. She also has mouth sores; her skin is paper thin and starts bleeding. Try talking a two-year-old into pouring a rinse into her mouth and then spitting it out.”
She also can’t handle being around a lot of people because of her weakened immune system. A cold can be life threatening, spiraling into something serious, such as pneumonia.
“Nora has to be on a drug just because she lives in Iowa,” Scott continued, “Our state had a lot of mushrooms and spores in the ground. Living on a farm with harvest going on, if the wind blows toward Nora, it can be very dangerous.”
So far, Nora has been handling her illness like a pro. Scott says she walks into the hospital like she owns the place. “People see Nora walking in, she looks like she’s coming back from her vacation home,” he says with a laugh.
And she even took her shaved head with stride. “After the hair appointment, she was getting a bath and feeling her head with her hands. I asked her what she thought about it. She smiled, looked at me and said, ‘I look like grandpa!'” Scott continued. “I had to call my dad to tell him about that.”
“She knows that she’s sick but she doesn’t understand the magnitude of it all. To her, it is normal, and this is just what she does.”
Scott said that he and his wife face the future and the next two years of Nora’s treatment with optimism. He said the support the community has offered them has been amazing and humbling.
“We can’t look at anything but optimism,” he said. “We can’t let ourselves. It’s a rough couple years, and we hope that she doesn’t remember this down the road, and if she does, it’s just a faint memory. When we first got the diagnosis, it felt like getting the wind knocked out of you. It’s what every parent fears and never wants to hear. But when you hear it, you have to live off the positives.”
And it has changed them in some ways for the better. “It’s really given us a different outlook on life. I’m not taking anything for granted,” he continued. “Family time is important to us; family dinners are something we love. It’s not an inconvenience; it’s something great to have. This has taught us what is important in life. It doesn’t matter if you are late to a meeting. There is a lot of stuff that we were worried about before that just doesn’t matter anymore. It puts your life into perspective.”