One of our biggest questions we often receive is “How did you know something was wrong?”
First I want to talk about the main signs that your child may show before a cancer diagnosis, then I’ll share our story of Jocelyn’s symptoms. Now this goes I think without saying, but each and every child’s symptoms will begin in their own unique way. Also, just because your child has developed a certain symptom, doesn’t automatically mean it’s cancer. You will know what is and what isn’t normal with your own child. If you have any concerns about your child’s health please consult with your child’s pediatrician.
10 Most Common Signs of Cancer:
Unusual lump or swelling
Easy/excessive bruising or bleeding
Ongoing pain in one area of the body
Limping/change in walk such as excessive stumbling
Unexplained paleness and loss of energy
Unexplained fever or illness that doesn’t go away
Frequent headaches
Frequent vomiting with the headaches
Sudden eye or vision change
Sudden unexplained weight loss
Jocelyn’s Story:
Up until Jocelyn was around 16 months old she was your typical perfect baby. She had very minimal sicknesses, and no health concerns at all. I remember several weeks before her sickness began, my husband and I shared words of how lucky we were to have such a perfect, healthy child. We were so blessed. Until we weren’t.
At the beginning of April, Jocelyn and I took a trip back to New York to visit family. About halfway through the trip Jocelyn woke up one morning, running around playing like usual; then ran to a corner and vomited. No red flags went off in my head at this point. It was one vomiting spell, then she was fine, back to running and playing. It must be a stomach bug that will pass.
Over the next five days, she would vomit once each morning and then move on with her day like nothing had happened. On day 4 of vomiting, I began to worry. This can’t be normal, can it? We brought her to an urgent care in New York, were told “It’s just a stomach bug, give it another 5 or so days and it should pass.” So, we flew home to Utah with the thought that the sickness should almost be done.
Once we arrived home the vomiting continued each and every day, only once in the morning shortly, after she would wake. On day 10 we brought her into her normal pediatrician. At this point it was still only the early morning vomiting, no fever, no diarrhea, no other symptoms. Despite the lack of other symptoms we were told the same response.
“It’s just the flu. Give it another week and come back if symptoms continue.”
At this point the only thing popping into my brain was “Could this be some type of food allergy?” We started tracking and monitoring all foods she ate, but nothing was ever consistent; in fact most of her vomiting spells happened before she ate breakfast in the morning.
Seven more days went on, no changes, no improvements, still vomiting every day. Back to the doctors we went. We were approaching day 20 at this point. Same response, “It’s just the flu. Give it another week.” At this point I was starting to become very frustrated, very unheard.
“THIS IS NOT THE FLU”…
I wanted to scream at them. My mommy instincts started to tell me something was wrong. What flu could possibly last for 20 days, and only consisting of vomiting?! When you’re dealing with tricare and military doctors it becomes very difficult to change care, you have to follow a certain process without much of a choice who your care team is. Over the next weekend while her normal on base clinic was closed, we made the decision to bring Jocelyn into a pediatric urgent care in town. This visit left us still with no answers. All doctors were persistent this was the flu. They did however run one test, a diabetic test which came back normal and sent us on our way.
Over the next week Jocelyn had about 4 days in a row without any vomiting. We began to think maybe we were in the clear. Then everything hit the fan all at once. Over that fourth week the daily vomiting began again, this time once a day turned into twice a day. Jocelyn was being sent home from daycare almost daily due to the vomiting, we felt so defeated. On top of the increased vomiting she began developing other symptoms.
Jocelyn was always a phenomenal sleeper, but her patterns began to change. She would sleep between 10-12 hours a night, then instantly want to go right back to bed the moment she was done breakfast. She began to lose all interest in her daily activities. While at daycare she would lay in the middle of the floor or the ground outside and not want to partake in anything, this wasn’t like her. She was always the most playful, happy child. Her daycare began to show their concern. They even knew something HAD to be wrong… We brought her into the doctor’s again.
How many more times do we have to come here until I’m taken seriously!?
During this visit her normal pediatrician was unavailable so we saw another doctor in the office. He showed immediate concern for her lack of other flu symptoms, the excessive sleepiness, and lack of interest in her daily activities. He wanted to order blood work and more tests to try and find answers for what was happening. Before doing so he thought it would be appropriate to speak to her normal doctor about his concerns. Not to my surprise her doctor still insisted “This is only a flu. Send them home. She doesn’t need more tests.” I was furious at this point. I wasn’t crazy, I wasn’t overreacting.
SOMETHING WAS WRONG!
At this point in her symptom journey it had been over a month since her symptoms first began. My brain started scrambling to find an answer. Allergy? Something wrong with her stomach? Something wrong with her digestive system? Cancer was never a thought on my mind. It could never happen to my child.
Roughly 4 more days went by and Jocelyn’s symptoms were only getting worse. This was the turning point. My husband brought Jocelyn back into the doctors that day and demanded for more to be done. We wanted testing to be scheduled and we were not leaving without it. At that appointment it was decided the next best step would be to schedule a brain MRI, to check on “build up pressures in her head.” As a new mom I had no idea what that actually meant, what would cause these “pressures”, and why testing on her brain was needed for vomiting?
The day of her MRI my husband and I exchanged words of confusion. This MRI wouldn’t be showing anything and we would be back at square one of the unknown. We couldn’t have known how wrong we were and how life changing May 10th, 2019 would be for us. That’s a story for another day.