Understanding Childhood Cancer
- Luca was diagnosed with a spinal cord tumor. His most noticeable symptoms was struggling to lift his left arm, but doctors didn’t originally think there was any reason to worry.
- The survival rate for children with cancer has improved over the past few decades, but pediatric cancer is still an incredibly hard thing for a child and his or her family to go through. In a previous interview with SurvivorNet, one caregiver/mother of a cancer survivor found therapy to be a great way to process everything happening to her family.
- Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. But when it comes to a child, the parent must become the advocate and make sure any possible signs of cancer are fully and expeditiously addressed.
When Parks gave birth to her son Luca, she was excited to spend time with her newborn and his brother Zac, then three. But it quickly became apparent that raising Luca would not go as planned.
Read More"It showed he had a large spinal cord tumor around seven centimeters in length,” she said. “Due to Covid restrictions, I was sitting in the room on my own when they told me, miles and miles from home. I hadn't fully comprehended what I'd been told. I wasn't sure I knew really what was going on.
"Paul was back home. My world just felt like it had shattered. Time stood still and my heart felt like it had broken into a million pieces.”
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From there, Luca was rushed to a children’s hospital four hours away.
"They sent him for another emergency MRI and four days later they told me it was stage four and inoperable and that he'd possibly only have months to live,” Parks said. “We were in disbelief. I desperately wanted them to be wrong. I'd only just lost my dad to cancer in February 2019, and now we were facing this horrific journey again this time with our newborn baby.”
Luca got his first dose of chemotherapy on July 11, 2020, but it made him very ill. And another scan a few days showed that his tumor had only grown, so Luca’s prognosis was not looking good.
But against the odds, Luca is still here today.
"He's a little miracle," Parks said. "He's happy, cheeky, and he’s always smiling
"He's just started nursery. You'd look at him now and you just wouldn't know what he's been through and that he is still fighting for his life every day."
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As for treatments, Luca’s chemotherapy is meant to keep the tumor at the same size until he is old enough for other forms of treatment.
“There aren't many options for children battling cancer it's a waiting game,” Parks said. “That's why we want to do this to raise awareness that more research needs to be done to find ways to help young children with cancer.”
But now that he’s on the drug larotrectinib things seem to be going much better.
"There haven't been many treatment options for him. He really struggled for a year with the chemo he was having until August 2021,” Parks said. “He was spending more time in hospital than at home. It was no life for a baby. He’d lost his hair, he’d lost his appetite, lost weight, he was so sick and there was nothing we could do about it. The larotrectinib has given Luca the chance to lead a relatively normal life.
"We're so grateful this drug was available and we need more medication available for young people,” Parks said. “Luca is too young for radiotherapy so it's all about getting him through until he is old enough for other forms of treatment.”
Despite the fact that he’s currently doing well, Parks and Evans know the reality of Luca’s fight.
“The heart-breaking truth is that Luca is remaining stable for now but we are fully aware that one day his treatment options may just run out," Parks said. "He spent the whole of April in hospital and again lost all his weight and he had to learn to walk again. It is unbelievable how he continues to come back.
"I hope there will be advances in cancer treatment and one day there will be a cure for Luca. Until then we just do our best and hope he continues to prove everyone wrong."
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Now, with September being Childhood Cancer Awareness Month, Parks and Evans are sharing Luca’s story to raise awareness for childhood cancer.
"Cancer can happen to anyone, it doesn’t matter how old you are, we need to raise awareness so that one day all of the children fighting cancer will be given a cure instead of a death sentence," she said. "Children with cancer are given chemotherapies that are actually meant for adults.
“Luca continues to suffer with side effects from his chemotherapy. We desperately need treatments that are much less invasive for children’s bodies. We need to keep talking about it so that we can expand that research and ultimately find better treatment for our children who are fighting this disease."
In addition, Luca’s parents have been vocal about urging people to keep an eye out for signs of childhood cancer in order to promote early diagnosis.
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“Knowing the signs and symptoms of childhood cancer is so important along with early diagnosis,” reads a post from Luca’s Instagram page. “These two things could potentially be the difference between curable and incurable, life and death.”
In addition, Parks and Evans want more healthcare professionals to listen to parents when they’re concerned about their child’s health.
“So many of us have had to fight for our child’s diagnosis, months pass until our voices are heard,” reads the same post. “In that time our children’s cancers are taking over their little bodies. Time is precious. Early diagnosis is essential! Every child should have the opportunity simply to live.”
If you’d like to follow Luca’s story, check out the family’s Instagram page here.
Understanding Childhood Cancer
Treatment advances in recent decades have lead to 85 percent of children with cancer now surviving five years or more, according to the American Cancer Society. This is up from 58 percent from the mid-1970s.
But according to the National Pediatric Cancer Foundation, more than 95 percent of childhood cancer survivors have significant health-related issues because of the current treatment options, and only 4 percent of the billions of dollars spent each year on cancer research and treatments are directed towards treating childhood cancer in the United States. Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds of drugs have been created exclusively for adults.
Dr. Elizabeth Raetz, director of pediatric hematology and oncology at NYU Langone's Perlmutter Cancer Center, reminded us in a previous interview that there is still reason for hope.
"There are also targeted treatments and different immunotherapies that have been studied in adults and have now moved into clinical trials for children and there has been a great deal of excitement in the community about that," Dr. Raetz told SurvivorNet.
Caring for a Child with Cancer
Still, navigating a child's cancer diagnosis can be incredibly tricky something Jayne Wexler knows all too well.
She had to fill the roles of parent and cancer caregiver when her son, Justice, was diagnosed with acute lymphoblastic leukemia. Thankfully, he has since recovered.
In a previous interview with SurvivorNet, Wexler explained how she managed to be a mother and a caregiver all at once.
"I Try To Stay Strong, But Sometimes You Need To Cry": Playing The Role of Cancer Caregiver and Mom
"Being a caregiver is a huge job," Wexler said. "Fortunately, my husband and family were very supportive … it's really hard to see your child go through this. If it could be me, I would take it in a second. You just go on auto-pilot and you just do what you have to do."
Wexler also admitted that as a parent caring for a child with the disease, you don't have a lot of time to sit down and deal with your own emotions.
"You don't have that much time for yourself," Wexler said. "I try to stay strong, but then sometimes you just want to go and cry, and you need to cry… it's good to cry."
The survival rate for children with cancer has improved over the past few decades, but pediatric cancer is still an incredibly hard thing for a family to go through. In her own caregiving experience, Wexler found therapy to be a great way to process everything happening to her family. Regardless of whether it's therapy or participating in your favorite activities or something entirely different, it's important to find ways to also take care of yourself as you're taking care of your child.
Advocating for Your Child
Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate just as we saw in the case above.
The Impact of a Childhood Cancer Diagnosis on the Whole Family Jayne Wexler Shares Her Story
And even if you're called 'pushy' or people dismiss the concerns you have for your child, it's important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis cancer or otherwise.
"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 Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
Be Pushy, Be Your Own Advocate… Don't Settle
In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period.
Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Figuring out whether or not you have or your child has cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are 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.
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