September is childhood cancer awareness month.
September is childhood cancer awareness month. And CityMom H never thought her family would need to know this. Her story follows below...
You hear a lot about awareness for different diseases/ailments and people sometimes wonder what awareness really means. To me, awareness about childhood cancer can save lives. Although cancer in children is not common, “it is the leading cause of death by disease past infancy among children in the United States.” I would like to share a personal childhood cancer story in order to raise awareness and to give parents who are struggling with their child’s diagnosis a sense that they are not alone.
In 2010 we had one child, a 2 year old named Ella. {Editor's note: Names and identifying features in this post have been altered at the request of the family}.
One morning, Ella threw up right after she woke up. No big deal, kids get the flu all the time. I took off work and stayed home with her. She got better throughout the day and was even eating by the end of the day, so I decided this was a 24 hour thing and didn't even take her to the doctor.Then the next morning, again she threw up again. I decided she was sick and to take her in. The pediatrician Dr. Smith, looked her over and decided she had the flu, just like I had thought. Give her fluids and rest, she will get better. And Ella did, for the most part. She was fine for the next few days, went to daycare, and was gaining her appetite back. But by the weekend she had begun throwing up again and had a new symptom: she was lethargic. Normally I could never get her to take a nap, she would fight it and then finally she would go down. Now she would sleep for 3-4 hours and I had trouble waking her. Since it was the weekend, Dr. Smith advised us to go to the ER.
I went to the ER.
On the way there, Ella complained that she was hungry. Anxious for her to eat anything, she asked me for McDonald’s fries so I stopped on the way to get her some. She ate the fries in the car. When we got the ER, we saw a very young-looking, very tired-looking ER doctor who wanted to do a CT of Ella's abdomen to see what was going on. The CT only showed constipation, and the doctor said the reason Ella was vomiting was because she was so constipated. As we waited in the small room with the nurse for the doctor to decide a course of action, Ella threw up the fries. The fries did not even have time to digest so it looked like she was throwing up McDonald’s fries. The nurse looked at it and took the opportunity to parent shame me, she told me that the reason Ella was so constipated that she was throwing up is because of the terrible diet that I gave her.
I didn’t understand was how she is the only child that was constipated, when she goes to a licensed daycare 5 days a week and eats two meals there, same as all the other kids. The doctor came in and kindly assured me that this is more common than I would think, given the diets of Americans today and that she sees about 100 cases a year. I resolved myself to feed Ella a high fiber diet and I was grateful that she didn’t have something more serious wrong with her. I worried that taking a care of a child was much more complicated than I thought. This particularly worried me because at the time I was 26 weeks pregnant with my second child.
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We stayed overnight while they treated her. In the morning, they did another CT and the CT looked good. But as she had done all week, as soon as Ella woke up, she threw up. I asked the doctor what was causing her to throw up now that the constipation was gone. She told me Ella must have contracted the flu during all this, so wait a few days and it would clear up. That did not sit well with me, but I believed the doctor. So we went home.
For the next several days, Ella got worse.
Throwing up all day, not eating anything, and lethargic, not playing, just staring at her friends playing. I brought her back to Dr. Smith, who was concerned Ella was dehydrated. She sent us back to the hospital for IV fluids, and we went home. The next day, Ella threw up again. This has been going on for two weeks now and Dr. Smith was very concerned. She sent us for labs, but they came back negative. No virus, no bacteria, nothing. So, Dr. Smith made us an appointment for the next day to go back to the hospital for another CT, this time it was of Ella's head to "rule anything out". By this time I had been googling “throwing up in the morning” and “brain tumor” and “brain bleed” kept popping up in the search results. Ella had been falling down a lot lately and I thought, I wonder if she got a brain bleed a few weeks ago when she fell. The night before her CT scan Ella was at her absolute worst. She was beyond lethargic and it was hard to wake her up from a nap. That night she was listless. I called the on call doctor in a panic. I told him her symptoms and that I was concerned. Knowing she was scheduled for a CT scan in the morning, he said we could go wait at the hospital now, but he thought it was probably nothing and we might as well wait it out at home. I had her sleep next to me in bed and I watched her sleep all night to make sure she was breathing. I knew something was very wrong.
The following day we went to the hospital and got the CT results.
The doctor looked shocked, perplexed and upset. "I looked at her scan," the doctor said. "She has a mass in her brain. She has hydrocephalus so badly that I am afraid to give her any more fluids. You will be transported immediately to a children’s hospital." That is what he said, but what I heard was "Your two year old has an inoperable tumor and she is going to die." What happened after that is pretty much a blur.We waited in triage for hours, until neurosurgeon Dr. Jones came in. He was the calmest person in a room full of hysterical people. His calmness calmed me. He said to me, "She has a brain tumor. We get these all the time. I have seen this before. We will give her steroids to bring down the swelling, and then I will do my best to remove the entire thing." He then explained to me that tumors do not kill people, hydrocephalus kills people. Hydrocephalus (or water on the brain) is when too much fluid builds up in the brain causing pressure. The skull is bone and cannot expand, so the buildup of fluid in the brain can cause brain damage or death.
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The neurosurgeon wanted to wait until this pressure went down to remove the tumor. So he put her on 2 hour neuro checks for 3 days. What that means is that every two hours, a nurse checks her neurological signs. If, at any time she failed this neuro assessment, they kept a kit outside her room, where they would immediately insert a shunt in her brain to drain the fluid. I don’t want the gravity of this diagnosis to be lost. What I am saying to you is, the night before {and arguably, the entire two weeks prior}, while she slept next to me, while we dragged her into doctor after doctor, while the nurse was lecturing me about eating habits, my daughter was in such immediate danger of death or severe brain damage that she could not be allowed to sleep through the night because she had to be monitored every 2 hours around the clock in case a doctor had to stab through her head with a shunt to relieve the pressure. The pressure that the brain tumor and ultimately the hydrocephalus caused on her 2 year old brain was the source of all of her symptoms. It affected her motor skills, which is why she fell down so much. It caused her to throw up every morning, it caused her large head size at her 2 year old appointment, and it caused her lethargy.
Ella had an 8 hour successful surgery to remove the tumor. She came out of the surgery slowly, with Dr. Jones standing over her the entire time. As she recovered in the Pediatric Intensive Care Unit (PICU), the doctors there were surprised and impressed that the pediatrician even figured out at all that Ella had a brain tumor. She stayed in the hospital for a few days, and then we took her home. Little by little, she got better and much happier.
To this day, she remains cancer free.
Not all kids are as fortunate as Ella that a cure has been developed for their type of cancer. The National Cancer Institute (NCI) only dedicates 4% of its cancer funding toward pediatric cancer research. Some brain tumors, such as DIPG, have had no successful breakthroughs for a cure in over 30 years and the survival rate for kids with that kind of cancer is very poor. You may see the hashtag #MoreThan4, it’s because many parents believe that their kids are worth more than 4% of the funding. If you are interested in helping bring Childhood Cancer Awareness to the forefront, the gold ribbon is the symbol for that, so go Gold in September! If you take away anything from this story, please let it be that as a parent, you need to be an advocate for your child. Cancer is not common and doctors are trained to look for common causes like, constipation, not exotic causes, like cancer. If you would like to learn more about the signs and symptoms of childhood cancers, here is a helpful link. Thanks for letting me share my story with you.- CityMom H
MORE INFO: September is recognized as National Childhood Cancer Awareness Month. Each day, 43 families in the United States will hear the words “your child has cancer,” including CityMom H's family. To get involved in the fight or to donate, visit childrenscancer.org/.
