Las Vegas illusionist Criss Angel and his wife, Shaunyl Benson have shared their ongoing battle with pediatric ALL, as their son, 6, fights a relapse. Benson now shares an exciting milestone: “HE DID IT! Johnny Crisstopher made counts yesterday. So we've been in hospital for his Blincyto (Blinatumomab) hook up! He's doing amazing and staying strong.”
Immunotherapy For Pediatric Leukemia
Immunotherapy drugs harness a patient's own immune system to recognize and destroy cancer cells. Several types of immunotherapy drugs are now coming in to use against childhood leukemia, according to the American Cancer Society.
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Blinatumomab is given intravenously as a continuous infusion over 28 days. This may be repeated after 2 weeks off. Because of certain serious side effects, the child usually needs stay in the hospital for the first few days of at least the first 2 cycles.
Superstar Spirit Kicking Cancer’s Butt
Getting there wasn’t easy. Johnny Crisstopher had a “successful blood transfusion” last week, Benson reported. And low-blood counts have delayed this next step.
“Fingers crossed🤞ðŸ¼we will make counts this time!” she wrote. “His superstar spirit is kicking cancers butt, one day at a time. Just a few more months of intensive treatment and God willing, we will be in maintenance once again soon.”
Pediatric Cancer Care in the Age of COVID-19
“The last place we want to be is anywhere near a hospital,” Benson wrote, acknowledging the anxiety she feels as the country grapples with the COVID-19 pandemic.
“We have full bunny suits (hazmats) masks and gloves ready … Luckily the oncology ward is COVID free but I just can’t let my mind rest. I’m scared … we’ve come so far to let a virus stop us.”
In many hospitals across the U.S., only one parent is allowed to accompany pediatric patients to cancer treatment to reduce the number of people entering medical facilities. And chemotherapy can weaken the immune system, making patients more susceptible to illness.
Benson is not alone in her concerns. SurvivorNet spoke with Dr. Puvri Parikh, an immunologist at NYU Langone Health about the changing procedures designed to protect pediatric cancer patients.
Dr. Puvri Parikh explains precautions cancer hospitals are taking to protect pediatric patients.
“Most hospitals are limiting visitors in general,” Dr. Parikh said. “So, what we’re recommending is to work with your child’s oncologist to see what level of visitation is safe — and again, likely, it will be very limited,” she explained.
“The best way to explain to the child – and children are very smart – is basically to say, ‘this is to keep you safe and to actually keep your mom and dad and your grandparents safe, too,'” she added.
The Research Lag in Pediatric Cancer
Benson has been vocal about her frustration with the slow pace of pediatric cancer advancements. "Why is chemotherapy the only option after 40 years?" she asked in an impassioned Instagram post.
"Why is this still happening? … Why aren't there enough bone marrow donors? … Why are children dying from cancers that have high cure rates? Why do these kids need to wait for an approval number for treatment from an office clerk that doesn't care? Why is this ok?" Finally, she wrote, "how the heck do we fix this!?
According to the National Pediatric Cancer Foundation, only 4% of the billions of dollars spent annually in the U.S. on cancer research and treatments are directed towards childhood cancer. This funding lag has a ripple effect: Since 1980, fewer than 10 drugs have been developed for use in children with cancer while hundreds been created exclusively for adults.
The couple has long supported pediatric cancer causes through the Johnny Crisstopher Children's Charitable Foundation (a 501 c3 ) which Angel established "to raise awareness of pediatric cancer and provide funds for research, treatment, and ultimately a cure."
About Childhood Acute Lymphoblastic Leukemia
There are two main types of lymphoblastic leukemia: chronic and acute. While patients can live with chronic leukemia for a long time, acute leukemia can progress quickly, and if not treated, can be fatal within a few months.
Acute lymphoblastic leukemia (ALL) occurs when the bone marrow makes too much of a type of white blood cell called lymphocytes, according to the National Cancer Institute. However, it is the most common type of childhood cancer, and three out every four cases of childhood leukemia are diagnosed as acute.
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Signs of childhood ALL include fever and bruising, and the disease can be detected using tests that examine the blood and bone marrow. Chemotherapy, radiation, chemotherapy with a stem cell transplant, and targeted therapy are all considered standard treatment, according to the American Cancer Society.
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