Understanding Acute Lymphoblastic Leukemia (ALL)
- Former “90 Day Fiance” star Deavan Clegg’s five-year-old Taeyang has been battling B-cell acute lymphoblastic leukemia, a blood cancer, since he was three. Now, he’s nearing the end of his intense treatment program and his mom is hoping he’ll be declared cancer-free by the end of August.
- Acute lymphoblastic leukemia, or ALL, 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.
- A child’s cancer diagnosis affects the entire family so when assuming the role of a caregiver, it’s important to remember to be your child’s biggest advocate so they receive the best care possible. This includes making sure any concerning symptoms are fully and expeditiously addressed.
- 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.
Acute lymphoblastic leukemia, or ALL, is a very aggressive 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.
Read MoreAlongside the sweet footage of Taeyang placing his star on the wall, Clegg wrote, “Taeyang got to hang his star at the Make A Wish Tower! It was such an amazing beautiful moment thank you so much @makeawishutah @makeawishamerica. The past two years have been the most challenging years of our lives.View this post on Instagram
“Make a wish has made this cancer battle so much easier. A special thank you to everyone. I wanted to give an update on Taeyang he is thriving and doing amazing and has surgery soon to remove his chemo port. We are hoping he will get to ring the bell in August and officially be cancer free.”
Clegg, a mom of three, noted that although her son has several more months of intense treatment they still “high hopes he will beat this.”
She continued, “A special thank you to all of you who have supported us as many know its been difficult and we only had support in one camp. And that camp includes all of you. Thank you so so much for your prayers, the gifts, the letters and support. It has meant so much to all of us and Taeyang.
“Over the past two years I’ve grown a lot and learned so much about how beautiful life is no matter the challenges thrown at us. I want to also say a special thank you to @hyu.nw [actor Topher Park, her fiance] thank you for everything you’ve done. You have worked so hard for our family and have made so many sacrifices for us. On days I cried you always stayed strong. Thank you for being the best father to our three children.”
After praising Park for always being willing to help with anything, she continued, “Without you, I don’t know how we would have gotten through this difficult journey. And Taeyang thank you for picking me to be your mommy. You’ve filled my heart with so much love and shown me the most beautiful world.
“I can’t wait to see you ring the bell in August! Thank you everyone for your support. Without your support especially when it came to the gofundme and you all donated it was amazing and honestly helped us so much. I still tear up.”
View this post on Instagram
Taeyang’s Leukemia Journey
Deavan Clegg first shared the news of Taeyang’s diagnosis with her Instagram followers on May 31, 2022.
In the post, which revealed a photo of her son playing with toys in looked like the inside of a hospital, she wrote, “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.”
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In the post, which revealed a photo of her son playing with toys in looked like the inside of a hospital, she wrote, “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.”
RELATED: Hard Times Deavan Clegg Like So Many, Struggling to Pay for Son’s Cancer Bills
“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,” she added.”
After announcing that her son had already started chemotherapy treatments, she informed her fans, “This is every parent’s 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.”
Clegg had previously indicated that she had to stop her normal job to become Taeyang’s full-time caregiver. Because of this, she was having difficulty paying for his medical bills something so many survivors and their families are familiar with.
Regardless, Clegg and her family have come a long way since her son’s diagnosis and Taeyang is coming closer to beating cancer, as per her most recent post.
On Taeyang’s fifth birthday on April 11, 2024, Clegg wrote on Instagram, “Happy Birthday to my warrior. I can’t believe you are 5 years old today. You are the strongest, bravest little boy I’ve ever met. Everyday I’m so thankful to wake up to you. You are amazing.”
View this post on Instagram
Understanding Acute Lymphoblastic Leukemia
Acute lymphoblastic leukemia, or ALL, 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.
What Is Acute Lymphoblastic Leukemia (ALL)?
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.”
All About Acute Lymphoblastic Leukemia: Answers to the Most Common Questions About the Disease
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.”
Navigating Childhood Cancer
According to the National Pediatric Cancer Foundation, 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.
Clinical trials are a critical tool when it comes to advancing drugs, as research obtained in these trials is required to get federal approval for any new treatment that hits the market. These trials play a huge role in advancing cancer care, as well as treatments for any other illness. But there is a huge lag in drug approvals when it comes to advancing therapies for children. In fact, the average time between regulatory approval and the labeling of new therapies for adults and children is nearly 10 years.
The Impact of Childhood Cancer on the Whole Family
SurvivorNet previously spoke with Dr. Cindy Jackson, a pediatrician and chief operating officer at the Institute for Advanced Clinical Trials in Children (I-ACT for Children), about why approvals for pediatric drugs take so much longer and what can be done to close that gap so that children can get the care they need.
Unfortunately, according to Dr. Jackson, there is not a whole lot of incentive for pharmaceutical companies to study drugs for children. Children make up a very small number of people with chronic illnesses or conditions that require serious therapies. For example, when it comes to cancer, the American Cancer Society estimates that around 9,620 children in the U.S. under the age of 15 will be diagnosed with cancer. That’s compared to over two million new cancer cases in total.
“Clinical development is done by for-profit companies. Those for-profit companies sell drugs to help patients, but they also need to make a profit,” Dr. Jackson explained.
“The market in pediatrics is very, very small. Only 25% of the population is less than 18, and even fewer of those under 18 years old have chronic conditions that will require long-term therapy—there’s no market advantage really.”
Because of this small number, the companies that make and study drugs may not see financial opportunity in putting resources into pediatric clinical trials and that’s a real issue. Legislation passed in the U.S. the Pediatric Research Equity Act (PREA) and Best Pharmaceuticals for Children Act (BPCA) aimed to incentivize drug makers to study treatments for children, and required these studies in certain situations, but there is still a lag.
“Were it not for those rules and regulations, these trials wouldn’t be done,” said Dr. Jackson. “There’s very little incentive for pharmaceutical companies to do those trials, but the laws are very helpful.”
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Contributing: SurvivorNet Staff
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