The Stories of Fighters: Amelia’s story of “the blue guys” and life after childhood cancer

For this September’s Childhood Cancer Awareness Month we recognize that cancer is a battle, but it’s a fight that no child should have to fight alone. Follow along this month as we feature the Stories of Fighters.

Each donation means more research poured into finding advanced treatment options. Be a fighter in your own way this month by donating to the cause, or fundraising for us on Facebook. Together we can produce real change in the lives of these cancer fighters.

“Do your little bit of good where you are; it is those little bits of good put together that overwhelm the world.” — Desmond Tutu

At only 3 years old, Amelia Khounthikoumane was diagnosed with Stage 4 Germ Cell Tumor 3 and half hours after what seemed like a normal day, playing with her sister and doing somersaults. After she collapsed in pain they took her to the hospital and were shocked to learn about the diagnosis which had spread throughout her body.

Amelia’s mother Michelle explained that it “felt like their whole world was pulled from under their feet.” Thankfully they had family fly in to help and people to surround them in Charlotte. The support they received was a reminder of just how important community is in times of adversity, especially surrounding cancer.

Cancer comes with many challenges, especially when the child is just a toddler. One of Amelia’s parents’ biggest challenges in raising a child on chemo was figuring out how to get Amelia to eat since the chemo decreases her appetite and they did not want to put her on a feeding tube. Along with the current side effects, chemo has many long-term side effects as well that puts a constant worry on their parent’s minds such as hearing loss, nerve damage, and even other cancers.

In addition to chemo, Amelia was on steroids, which again is very challenging. Having a toddler on steroids is very difficult since it causes one’s emotions to fluctuate — this warped Amelia’s personality to where the family felt like they were walking on eggshells. Amelia’s mother explained that Amelia was behaving much differently than her usually sweet and endearing personality, and it was all a result of these drugs which no child should have to endure.

Along with the side effects of chemo and steroids, there is always the financial burden of cancer. This financial burden and the worries surrounding the drugs do not stop once the child is in remission. Thankfully Amelia went into remission in March of 2020, however, most people do not realize that for years post-remission Amelia will have to continue getting tests and scans done to make sure the cancer does not return. More appointments, more medical bills, more worrying if the cancer will come back,  and constantly being reminded of when Amelia had cancer.

When Amelia had cancer as a toddler, her mother explained that it was explaining to her daughter why she had to go to the hospital so often was a difficult situation to navigate. She was so little that she did not realize not every sick person must go to the hospital. To help explain the situation her parents described her sickness as “the blue guys” which she had to get rid of by going to the doctors. Now, as time goes by and Amelia gets older, her family is bringing out children’s books to explain to Amelia that what she had was cancer. Even after she went into remission, the family had to deal with the aftereffects of cancer.

Now imagine a world where children don’t have to have their little bodies withstand these intense treatments and where their families don’t have to withstand the constant worries that follow a cancer diagnosis. There is evidence that research can improve treatments for more common cancers and we believe that with collective support, we can do the same for rare cancers. That is why we need your help.

Help us help children like Amelia.

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