Caregiving for a Child With Cancer
- Former “90 Day Fiance” star Deavan Clegg’s 4-year-old Taeyang has been battling B-cell acute lymphoblastic leukemia, a blood cancer, since May 2021. Clegg has been open about her role as a caregiver and her son’s progress amid his cancer journey.
- Despite battling cancer, new photos show Taeyang having a blast at Disney World alongside his sister and Mickey Mouse.
- As a parent, it’s crucial to pay close attention to your child’s health and immediately take them to see a medical professional if you feel something isn’t right.
- Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities. The first thing to understand is that there is no shame in asking for help.
- Through interviews with expert oncologists, social workers, patients advocates, and more, SurvivorNet has come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
Just this week, Clegg took to Instagram to share some sweet memories after Make-A-Wish Foundation granted her son a family trip to Disney World in Florida.
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Explaining further on how the foundation gave Taeyang one wish, she wrote in the comments, “Taeyang got one wish which was Disney world. Make a wish usually throws a party to tell the wisher they are being granted their gift.”
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Referring to how her son met Diesel Dave from Diesel Brothers last month, she explained further, against any speculation that her son had two wishes granted, “Dave out of the kindness of his heart wanted to invite Taeyang to see monster trucks and tell Taeyang he would get to go to Disney world.”
In September, Clegg shared a celebratory post thanking Make-A-Wish-Foundation in Utah after her son had his “wish proclamation day.”
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Alongside photos of her son receiving his favorite toy truck and meeting Diesel Dave, the mom of three wrote, “It was such a wonderful experience. Taeyang got to learn that his wish was going to be granted by @the_diesel_dave.
“If you know a Taeyang you know his deep love for Monster trucks! He hopes to become a driver for Monster Jam one day. And Dave let him know dreams do come true. Taeyang got to drive his favorite monster truck the BroDozer!”
She added, “Thank you everyone for making his dreams come true. Yesterday will go down in the books and we will never forget it! Thank you to our wish grantees for putting this together. And a huge thank you to @diesel.brothers for showing my little boy he can become anything.”
The month prior, Clegg shared a cute video of her son eating cotton candy at a circus, revealing his health is good enough for him to go out and enjoy these type of activities with his family.
“Taeyang got to experience going to a circus for the first time! His health is improving and we are happy he was healthy enough to experience this,” she wrote.
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Taeyang’s Cancer Diagnosis
Deavan Clegg first shared the news of Taeyang’s diagnosis on May 31, 2022, via social media, and although she often takes to Instagram to update her followers, more information on his current treatment remains unknown.
“I have vowed to always be 100% transparent with you guys and I am choosing to share the most vulnerable and saddest point of my life right now in hopes it can help give anyone else dealing with a similar situation some strength,” she wrote in her post, featuring a photo of her son playing with toys in what appears to be a hospital.
“I’m overcome with so much emotion and devastation to announce that my beloved son Taeyang who just celebrated his third birthday last month was just diagnosed with childhood cancer, b-cell acute lymphoblastic leukemia just a few days ago.”
After announcing that her son had already started chemotherapy treatments, she explained, “This is every parents absolute worst nightmare and I’m trying hard to stay strong for Taeyang, Drascilla and my baby in my tummy. Taeyang will need around-the-clock hospital care and this will be a long two-year process that has a high success rate of full recovery in five years. I’m still processing all of this and asking for prayers, please.”
Meanwhile, Taeyang’s grandmother Elicia took to her grandson’s GoFundMe page, which has since raised more than $42,000, to thank everyone for helping amid this “long fight.”
She at the time, “Right now he is stabilized, and luckily only has to go to the hospital once a month now, and gets all other treatment at home. This has been good for his emotional well-being. I will keep you all posted, but for now, today, Taeyang is doing so well, and is happy, and I was happy for him.”
“It may seem silly, but just being around other children, and running alongside them was a bit of sunshine and put a much-needed smile on his face,” she added.
About a month later, Clegg took to her Instagram page to share another cancer update, saying “We’ve came along way since last year! Taeyang is doing much better. He only has to go to clinic once a month. His hair is growing back nicely and he is very happy. He’s gained the weight he lost back. He seems to have a lot more energy lately. We are thankful for everyone who has helped.
“Although we still have a long journey to go! We know Taeyang will beat cancer! Thank you everyone.”
Understanding Acute Lymphoblastic Leukemia
Acute lymphoblastic leukemia, or ALL, like Deavan Clegg’s son has, is a type of leukemia where the bone marrow makes too many immature lymphocytes, a type of white blood cell. It is also called acute lymphocytic leukemia, according to the National Cancer Institute.
Dr. Olalekan Oluwole, a hematologist with Vanderbilt University Medical Center, previously talked with SurvivorNet about ALL’s effect on the body and the type of treatments that work to fight it.
“ALL is a type of cancer that is very aggressive,” Dr. Oluwole told SurvivorNet. “It grows very fast. Within a few weeks, a few months, the person will start to feel very sick. And that’s why we will have to give it an equally aggressive type of treatment to break that cycle.”
Dr. Oluwole also says the leukemia often resides in the bone marrow, and because it is an abnormal growth, it just keeps dividing.
“It doesn’t follow rules, and it doesn’t stop,” he told SurvivorNet. “Not only that, because this is part of the immune system, the immune system is sorta like the police of the body. So those abnormal cells that have now become cancer, they have the ability to go to many places. They go into the blood, and they often go into the tissue or the lining around the brain.”
Advocating for Your Child; When to be Concerned
When it comes to your own health, as an adult, advocating for yourself and your own health is extremely important. It isn’t uncommon to run into medical professionals who will dismiss your symptoms, but you know your body the best. And you know when there’s something wrong.
The same goes for a parent and their child. Mothers and fathers know when there’s something wrong with their child, and children aren’t able to advocate for themselves.
As a parent, it’s vitally important to pay attention to your child’s health and take them to see a medical professional if you feel something isn’t right. But it’s also only natural to worry about your child and seek professional help for the smallest things.
Cancer Caregivers: The Basics
Assuming the role of a cancer caregiver when a spouse, parent, sibling, child, or friend is diagnosed with cancer comes with a unique set of responsibilities. The first thing to understand is that there is no shame is asking for help. This can be an overwhelming time for both patients and their caregivers, too.
Through interviews with expert oncologists, social workers, patients advocates, and more, we’ve come up with a checklist of helpful steps cancer caregivers can take throughout the journey.
Cancer caregivers may:
- Attend doctor visits with the patient
- Help the patient take notes/ask questions
- Provide transportation to and from treatment
- Accompany the patient during treatment
- Help keep track of side effects
- Link up with a social worker/patient navigator
- Help with day-to-day activities
- Provide emotional support
Caring for a Child With Cancer
Similar to Deavan Clegg, who sure has a lot on her plate right now, Jayne Wexler knows the simultaneous role of mother and cancer caregiver. Her son, Justice, was also diagnosed with ALL, but he has since recovered.
In a previous interview with SurvivorNet, she explained how she managed to be a mother and a caregiver all at once.
“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.”
However, that doesn’t mean it was always easy. Wexler 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 an incredible amount 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 really great way to process everything happening to her family. Regardless of whether its 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.
Meanwhile, there are many resources out there to turn to if you are caring for a child with cancer. If you’re wondering what you can do to ensure your child is getting the best treatment possible, consider the following recommendations from the National Cancer Institute.
- “Build strong partnerships” – Communicate openly and honestly with your child’s care team. You want to build a solid relationship with the people treating your child so you feel confident asking any questions and discussing your child’s treatment path.
- “Take advantage of the many specialists who can help your child” – There are many people who can help you and your child after the diagnosis arrives. Don’t hesitate to ask for specialists to help you and your child learn about their disease, understand how it will be treated and cope with difficult emotions.
- “If you get information online, make sure the source is credible” – Doing your own research is a great way to advocate for your child, but it’s important you’re looking at reliable sources such as (but not limited to) the National Cancer Institute, Mayo Clinic, Cleveland Clinic, National Comprehensive Cancer Network and American Society of Clinical Oncology, among others. Talk to doctors about what you’re finding and don’t hesitate to get multiple opinions regarding your child’s treatment path.
- “Make sure you understand what your child’s health care team tells you” – You need to ask for clarification if something about your child’s diagnosis or treatment is confusing.
- “Keep your child’s pediatrician updated” – Make sure your child’s cancer care team is sending updates to their regular pediatrician.
Contributing: SurvivorNet Staff