Damaged Souls

Damaged Souls

By: Kaitlynn Hamby

There’s a quote many parents use while attempting to bring awareness to childhood cancer, “The day before my child was diagnosed, I wasn’t a cancer parent either.” They’re right, you aren’t a cancer parent until you’re told your child has cancer. Your entire world changes in that one instant.

Childhood cancer is vastly different than adult cancer. For many, adult cancer isn’t a death sentence. There are plenty of treatment courses and options: surgery, chemo, radiation, bone marrow transplant, or some form of combination of these four. That’s assuming an adult decides to pursue treatment. And the patient gets to decide on a course of action. Adults also have their pick of oncologists, at least for the more common cancers, such as breast cancer. There have been so many advancements in treatment and there has been so much research that “cancer” almost isn’t scary any more. At least, if it was caught early, it isn’t. But for many children, cancer is a death sentence.

Many people have seen the stories on social media; a depressing photo of a “sick” child laying in a hospital bed, posted by the “parents” begging for prayers, or money, or cards. Anything that could help or make their “child” happy. Some have heard stories of scammers stealing photos of deceased children and passing them off as their own child for money. When people see these photos online, many people assume it’s a scam, but share it on the off chance that it’s real. No one wants to feel like a bad person for ignoring the photo, so oftentimes the photo is shared without the story being read.

Children don’t get to decide on a course of action the way adults can. They also don’t decide if they want to pursue treatment or not. Their parents and doctors make all their decisions. Treatment options aren’t as varied, either. Chemo is a necessity. This was especially true in the case of one brave and inspirational young girl aptly named Angel.

One day Angel was like the other kids her age: she was going to school, playing on the playground, spending time with her younger sister Lilly, and eating mac and cheese. Then, one day, she hit her knee on a table, resulting in a dark bruise. Her maternal grandmother began fretting that she may be sick when she saw the bruise, but Angel’s mother, Angie, told her that Angel is still a kid so she should stop worrying all the time. A little while after this, which was in early August, “We were up West Virginia and she just wasn’t really playing in the water like normal and was feeling tired. A few days later I saw three or four Petechiae on her face and something in my gut told me to take her to the pediatrician” (Angie).

When Angie took Angel to the pediatrician, she was informed that Angel’s symptoms indicated that she either had Anemia or Leukemia. “So obviously I thought it was the Anemia. They sent her for blood work. I was so proud of her she didn’t cry when she got her needle. The next day it was a Wednesday August 20^th, 2014 I got a call at work. I was told to take her to Hopkins right away; that they found Leukemia in her blood. And that’s when the hell started” (Angie). According to Cancer Treatment Centers of America, “Leukemia is cancer that originates in blood-forming tissue. The disease is characterized by the uncontrolled growth of blood cells, usually white blood cells (leukocytes), in the bone marrow. White blood cells are a fundamental component of the body's immune response. The leukemia cells crowd out and replace normal blood and marrow cells.” Angie couldn’t remember the exact prognosis given for Leukemia, but said she thought it had about a 98% survival rate. When Angel was diagnosed, the doctor told Angie that if your child had to be diagnosed with cancer, leukemia is the best cancer for them to have, because it is the most curable.

That was not what Angie wanted to hear about her baby. For Angie, it was a living nightmare. “There was nothing I could do to help her feel better. All we could do was take advantage of the good days. She couldn’t go to birthday parties, or to Chuck E Cheese. We could barely take her to the grocery store” (Angie). Angel didn’t get physically sick from the chemo frequently, but she got viruses and other illnesses often because she had no immune system. Whenever that happened, Angel got stuck in the hospital for a few days. A blood infection in her port resulted in spending three days in PICU because her blood pressure dropped severely. She almost died and ended up suffering severe weight loss. Angel’s sister, Lilly, told me a story about how the nurse, “didn’t insert the tube into Angel’s port all the way, so a clamp came loose and blood from the port went everywhere.”

This has changed their lives beyond imagination. Angie does her best to allow Angel to have freedom and to still be a kid, but they both suffer from anxiety, and Angie has suffered from depression since Angel’s recovery. As Angel got better, Angie understandably got worse. Not only was she depressed, but she was drinking a lot. She even contemplated committing suicide. She realized that she didn’t want to kill herself and did her best to get help, which wasn’t easy. “I love my loved ones more freely and I cut out those ones I don’t love more easily. Adult death doesn’t faze me anymore, but if I hear a cancer kid died, I’ll cry for days. I also don’t get as upset over the little things anymore” (Angie). She also suffers survivors guilt. When she is around a parent that lost their child, she feels like they resent her because her child survived. Angie stated that her contemplation of suicide as well as her surviviors guilt, is what helped her realize she is a damaged soul, “I’m a damaged soul, girl. Put that in your story.”

This was difficult for Angel, too. It was scary for Angel, but she freaked out the most if she woke up and was alone. She was so sick that she had to be homeschooled. She was a little upset about having to miss birthday parties, but not too much, because she was shy and didn’t really care too much about missing parties. While she was in the hospital she mostly watched TV and slept, because she was tired a lot. “When I was in the hospital, I would lay in bed with mom and listen to her heartbeat. That’s was how I fell asleep so quickly” (Angel). Angel hated when her hair started to fall out. After her hair started to fall out, Angel couldn’t stand looking at herself in the mirror, so they covered the hospital mirrors in coloring pages, so Angel wouldn’t have to see her reflection. Angel was so upset about it that Angie shaved her head along with Angel to show her that hair doesn’t matter. Once their heads were shaved, her confidence in her appearance, and in herself, returned. Her appetite and taste buds changed throughout her treatment, as well. When she was hungry, she usually ate a treat her dad made her: crackers covered in peanut butter and a piece of a banana with Hershey syrup. While going through chemo, she also wanted sausage and eggs, and stopped liking other foods such as mac and cheese. When asked if she wanted to add anything, Angel stated that she helps with fundraisers meant for other sick kids. There was one child that wasn’t going to make it to Christmas, so Angel sent him a card and cried when he passed. She cried when Austin passed, too, even though she didn’t know him as well as she’d known some other kids, such as her friends Bo, Richard, and Brenna. Now, Angel is in remission, but she still has anxiety. She’s afraid that every health problem is a worst-case scenario. When kids fight at school, she is terrified that they’ll hurt her. She’s had two or three anxiety attacks in school, resulting in her teacher phoning her mother about it. She’s a kid, just six when she was diagnosed. She’s ten now.

Angie and Angel aren’t the only people that do what they can for cancer kids due to a personal connection to cancer. “Tattoo” Tom Mitchell is another cancer parent that does what he can to help sick kids. Tattoo Tom goes above and beyond the ordinary and the expected for these kids. Tom’s daughter, Shayla, was diagnosed with stage 4 Hodgkin’s disease when she was 16. On his way to talk to his daughter about her diagnosis, he stopped in a store near the hospital, and purchased two feather bracelets: one for her, and one for himself. They spoke about everything and nothing, including bravery. They made a promise that they would remain brave no matter what. Shayla didn’t make it, but Tom kept his promise. His foundation, Stillbrave, and the feather logo were born from that promise. When asked why he started his foundation, Tom replied, “When my daughter died, I wondered why someone hadn’t done anything. Then, I realized that I am someone and I can do something.” Stillbrave provides nonmedical support with things such as rent, utilities, groceries, repairs, babysitting, funeral expenses, make a wish, travel to treatment, hosting events for siblings, and teen programs at Inova Children’s Hospital. Stillbrave works with a social worker at Inova Children’s Hospital to make sure the numerous families they help aren’t taking advantage of them, but they’ve still had people attempt to scam them. Another charity, Gold In Fight, has the opposite problem.

Gold In Fight is a childhood cancer foundation with a boxing theme that was started by six people, including Ms. Beth Wright Wheeler. Beth had no personal contact with childhood cancer when she started volunteering with Forever Fierce. She was empty-nesting and happened to see a child’s story online. After volunteering with Forever Fierce, Beth wanted a more personal connection to the sick kids she was helping, so she reluctantly agreed to form Gold In Fight so she could more directly help families instead of focusing on only research. Gold In Fight, especially Beth, briefly investigates the families they want to help, so they’ve been fortunate enough so far that no one has attempted to or succeeded in scamming them, but they do have families that take advantage of the help they provide. While Beth doesn’t like that some people take advantage, she finds the work very rewarding. She did state, however, that, “if I’d known about Stillbrave earlier, I probably would have started working with them instead of a different foundation.” Although different in some ways, the feathers and the boxing gloves both do their best to help families and children in need.

Stillbrave and Gold In Fight aren’t the only childhood cancer organizations out there. There are hospitals such as St. Jude’s that accept donations and organizations such as the American Cancer Society that don’t especially focus on children with cancer, but still do their best to at least make starting treatment easier for as many people as possible. When asked, the American Cancer Society worker interviewed stated that the American Cancer Society, “provides information, day to day help, emotional support for patients and their families, support services and programs, as well as funding research and providing grants.” The ACS splits their donations into different categories, “research programs, education, advocacy, service, and management and general (overhead) costs.” Nonprofits such as these are good to donate to, because you know that they aren’t keeping the donations or lying about what it is used for.

Childhood cancer is the number one cause of disease related deaths in children and about 43 children are diagnosed every day, yet childhood cancer receives only 4% of available research funding from the federal government. That’s probably why there are so few drugs that can be used to treat childhood cancer. According to a quote from Forbes, “around $170 million per year” is spent on childhood cancer, but most of it goes to research. Less and less is spent on clinical trials. The US spend more money on potato chips than it does on children. $170 million on childhood cancer compared to over $7 billion dollars on potato chips.

Next time you see that photo of the “sick” child, don’t just share it and hope someone else does something. You can do something. Take the time to find out if it’s a scam or not, reach out and see what you can do to help. Take the time to find a good foundation to donate to. Stillbrave, Gold In Fight, Alex’s lemonade Stand, the American Cancer Society, and St. Jude’s Children’s Hospital and just five of the many doing the best that they can. Speak up and speak out. Change doesn’t happen unless you make it happen.