Advocating for Your Child
- Imogen Darby’s daughter Tia, 11, experienced numerous worsening health symptoms for three years, having to visit around 30 doctors in total before she was able to receive a proper diagnosis: a brain tumor detected via an emergency scan.
- Over the course of her medical visits, Tia’s discomfort was continuously explained away as a stomach bug, migraine, or dehydration. Thankfully, Tia’s 3.5-centimeter tumor wound up being benign, but she had to undergo a 10-hour surgery to have most of the tumor removed, and still suffers from fatigue and balance issues.
- At SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, healthcare. When it comes to a child, the parent must become the advocate.
- Seeking multiple opinions is one way to make sure you 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.
Over the course of her medical visits, which included a few emergency calls, Tia’s discomfort was continuously explained away as a stomach bug, migraine… dehydration.
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In the meantime, at one point, Tia was holding her neck funny, which was noticeable by family, friends and even her school.
Her doctor said they could do an MRI for “peace of mind,” but it would be a months-long wait.
Then the little girl’s overall sickness became even more extreme. “It got really bad,” Darby said, noting that she was throwing up so bad that she was “projectile vomiting” every single morning.
That was when the balance issues started and the emergency scan was ordered. At that point, Tia had to be taken in by an ambulance.
Thankfully, the tumor that was discovered, a pilocytic astrocytoma, was found to be benign, or non-cancerous. Still, Tia had to endure a 10-hour surgery to have 96% of the tumor removed. Her mother said she is still suffering from fatigue and balance issues, but after she’s been through, thankfully she’ll be okay.
Tia will continually be monitored by MRIs every three years and is under the care of a neurologist. She is getting back to enjoying her favorite activities: reading and anything involving animals.
Understanding Brain Tumors
A pilocytic astrocytoma is one of the most common types of childhood brain tumors.
According to the American Society of Clinical Oncology (ASCO), brain tumors account for 85 to 90 percent of all primary central nervous system (CNS) tumors. The central nervous system consists of the brain and spinal cord and acts as the main “processing center” for the nervous system. Normal function of the brain and spinal cord can become difficult if there’s a tumor present that puts pressure on or spreads into nearby normal tissue.
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There are many different types of brain and spinal cord tumors. Some are more likely to spread into nearby parts of the brain or spinal cord than others. Slow-growing tumors may be considered benign, but even these tumors can cause serious problems.
General Symptoms of Brain Tumors
Symptoms of brain tumors, as a whole, are often caused by increased pressure in the skull. This pressure can be caused by tumor growth, swelling in the brain or blockage of cerebrospinal fluid (CSF), according to the American Cancer Society.
General symptoms may include the following:
- Headache
- Nausea
- Vomiting
- Blurred vision
- Balance problems
- Personality or behavior changes
- Seizures
- Drowsiness or even coma
But it is important to note that these symptoms are not exclusive to brain tumors. Still, you should always consult with your doctor (or multiple) if any health problems arise.
Advocating for Your Child
When it comes to your health, advocating for yourself is extremely important. It isn’t uncommon to run into medical professionals who will dismiss your symptoms, but you know your body best — and likely know when there’s something off.
The same goes for a parent and their child. Mothers and fathers know when there’s something wrong with their child, and since children aren’t able to advocate for themselves, it is crucial for the parent to do everything they can when their child’s health and well-being are at stake.
It is extremely important to take them to see a medical professional if you feel something isn’t right. And if you feel you’re not getting answers, seek multiple opinions if necessary and don’t stop until you find someone who can help you.
‘You Should Leave Each Doctor’s Appointment with a Plan’
“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 Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet. “And I think that that’s totally fair. And me as a health professional that’s what I do for all of my patients.”
Unfortunately, many diagnoses can take a long time to figure out, as cancers can have subtle symptoms, but never delay seeing your doctor so that their health chart is ready to go — if and when a condition worsens, your medical team can finally put it all together and get answers.
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