Learning about Childhood Leukemia
- Christine Tylee and her husband found out their then-6-year-old daughter, Sophie, had leukemia after months of odd and worsening symptoms. Doctors originally thought she simply had ear infections that needed treatment, but they eventually came to the correct diagnosis.
- Thankfully, Sophie is doing well today and “making up for lost time.”
- Leukemia is a type of blood cancer. Symptoms vary depending on the type of leukemia, but general symptoms for the disease include: Fever or chills, persistent fatigue, weakness, frequent or severe infections, losing weight without trying, swollen lymph nodes, an enlarged liver or spleen, easy bleeding or bruising, recurrent nosebleeds, tiny red spots in your skin (petechiae), excessive sweating as well as bone pain or tenderness.
- Here at SurvivorNet, we're always encouraging people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
Tylee, 45, and her husband Paul Berude, 51, have three children together: Emily, 15, Sophie, 12, and Andrew, 9. But poor Sophie was the one whose childhood was turned upside down by a leukemia diagnosis when she was just 6 years old. Her cancer journey truly began before anyone knew anything was seriously wrong and she started suffering from a series of what doctors assumed were ear infections in 2016.
Read MoreOver the course of several months, Sophie’s condition grew worse, and antibiotics were making no difference. Eventually, Sophie grew constantly tired and struggled to even walk.
“I think that’s when we thought something else was going on and we were referred for ultrasounds and blood tests,” Tylee explained.
Just four hours after her blood test, Sophie was rushed to a local children’s hospital.
“I could tell it was serious,” Tylee said. “I thought of a million things, all racing through my head, but not one of them was cancer.”
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Brave little Sophie had to have another blood test, but she “really wasn’t putting up much of a fight.”
“She was remarkably good,” he mother said. “It must have been scary for a little 6 year old who wasn’t feeling herself. Usually she’s always bubbly and happy, but she’d been getting quieter and quieter.”
Eventually, Tylee and her husband were told Sophie had leukemia with “the highest counts [of leukemia in her blood] they’d ever seen.”
“It was such a shock, you never think it’s going to happen to someone that you love,” Tylee said. “We were also told the reason for the extreme emergency situation wasn’t actually to do with the leukemia, but because she had zero platelets so even a paper cut would have led to her bleeding out in four minutes.”
For treatment, Sophie underwent blood transfusions right away before having a port put in her chest for chemotherapy treatments that began the day after her port was put in. Sadly, chemotherapy was a really rough ride for Sophie, and a “very, very intense” year followed.
“She missed over a year of school,” Tylee said. “Then she was on treatment for another year, nearly a year-and-a-half. They wouldn’t remove the port until she’d remained in remission and off treatment for another nine months, because after that the risk of relapse reduces.”
Today, Sophie is doing great and “making up for lost time,” but her mother still keeps the worries of her cancer returning in the back of her mind.
“I think even now I still go into over-protective mode, overly concerned about bruises that don’t go away fast enough and my heart skips a beat if she develops a temperature,” Tylee said. “I think that I will probably always worry, but it is getting easier and easier the more I see her doing amazing things. She’s an incredible karate champion, she’s skiing and embracing life.”
Understanding Leukemia
Leukemia is a blood cancer that develops when the body produces large quantities of abnormal white blood cells. These cells prevent the bone marrow from producing any other type of cell including red blood cells and platelets.
"One cell got really selfish and decided that it needed to take up all the resources of everybody else, and, in doing so, took up space and energy from the rest of the body," Dr. Nina Shah, a hematologist at University of California San Francisco, explained.
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In a more general sense, blood cancer means that your bone marrow is not functioning properly.
"And when your bone marrow doesn't function correctly, it means that you can have something happen to you like anemia," she said. "Or you can have low platelets, which makes it possible for you to bleed easily. Or your immune system is not functioning correctly."
Symptoms of leukemia can vary depending on the type of leukemia. Common signs and symptoms of the disease include:
- Fever or chills
- Persistent fatigue, weakness
- Frequent or severe infections
- Losing weight without trying
- Swollen lymph nodes, enlarged liver or spleen
- Easy bleeding or bruising
- Recurrent nosebleeds
- Tiny red spots in your skin (petechiae)
- Excessive sweating, especially at night
- Bone pain or tenderness
These signs and symptoms are not exclusive to leukemia, but if you notice them or any other changes to your health you should see your doctor promptly.
Advocating for Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate.
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And even if you're called 'pushy' or people dismiss the concerns you have for your child, it's important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis cancer or otherwise.
"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
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In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake.
Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
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"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Figuring out whether or not you have or your child has cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.
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