Support Through Pediatric Cancer
- The Holyoke, Massachusetts community is rallying support for the 11-month-old son of beloved local police officer Crystal Conroy. Her baby boy Ashton was diagnosed with acute myeloid leukemia (AML), a rare type of blood cancer, last month.
- Despite the tough few weeks, alleviated by local fundraisers and generous online donations, Crystal has mostly been reassured by Ashton’s “constant smiles” and “constant laughter,” which signifies to her that he’s “got this.”
- Though AML symptoms can vary from child to child, the most common symptoms to look out for include: anemia, which causes a child to become pale and/or breathe faster as their cells struggle to carry oxygen, bleeding/bruising, bone and joint pain, abdominal pain, and/or recurrent infections.
“Like I don’t even know how we made through it without all the support we’ve gotten,” Crystal told local news outlet WGGB/WSHM. “The Holyoke department has been amazing. They have been helping in ways I can’t describe.”
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RELATED: Gunnar Peterson’s Brave ‘Warrior Princess’ Daughter 4, Begins Treatment for AML Leukemia: ‘Mommy and Daddy Are Always By Your Side’The site, which was started by a close friend, says that Crystal will understandably be out of work “for the foreseeable future” to be there for her boy, while his dad will be forced to reduce hours to take care of Ashton’s older sister Adriana, 8.
Taking It Day By Day
Crystal provided an update on April 6 as donations and words of support continue to pour in for the tiny warrior, along with live fundraisers held at a local ice cream shop and a popular bar/restaurant.
“Although this is not the update we were hoping for, here we are,” the former private investigator began. “The chemo is working great with Ashton’s Leukemia. The tumors are a lot smaller which is huge, however bc the tumors are smaller, they located a blood clot in the base of his skull that was caused by a tumor. It didn’t create a stroke or bleed but another thing we have to deal with & worry about… ”
“Then there’s the worse part,” she continued. “Ashton has a gene mutation called the Run X 1 gene.”
The RUNX1 gene typically helps to control the development of blood cells.
“That gene created his leukemia and COULD create further cancers through his childhood and his life. They took that gene to biopsy that today. That takes a few weeks to get back. If it is going to create further cancers then Ashton will have to have a bone marrow transplant if not he will need 4 more rounds of chemo. Either way, he starts round 2 on Monday.”
Pointing out the risks and side effects of a baby having a bone marrow transplant, which is medical treatment that replaces your bone marrow with healthy cells. Crystal shares that they haven’t quite gotten there yet. For now, she is leaning on prayer.
“This is all the news we really have for now. Please please please continue the prayers. We need them now more than ever. I don’t know what we would do without our support system.”
Despite the tough few weeks Crystal later updated her Facebook page on Ashton’s first birthday on Monday, saying that her son has been full of “constant smiles” and constant laughter,” which has been reassuring to his mother that he’s “got this.”
What Is AML?
Acute myeloid leukemia (AML) is a cancer that affects bone marrow, the spongy tissue inside of your bones. It’s a rare cancer overall, but it is the most common type of leukemia in adults. Children rarely get AML.
To understand acute myeloid leukemia (AML), you have to know how bone marrow works, explains Dr. Mikkael Sekeres, director of the Cleveland Clinic Cancer Center Leukemia Program
This disease is caused by DNA damage to the cells in your bone marrow that give rise to blood cells. Red blood cells carry oxygen to tissues, white blood cells fight infections as part of the immune system, and platelets help stop bleeding. Those cells are damaged in AML, and the damage results in an overproduction of unnecessary white blood cells.
AML Symptoms in Children
Though AML symptoms can vary from child to child, the most common symptoms to look out for include:
- Anemia, which causes your child to become pale and/or breathe faster as their cells struggle to carry oxygen
- Bleeding/bruising (which can also be a symptom of having the RUNX1 gene)
- Bone and joint pain
- Abdominal pain
- Recurrent infections
If your child is showing any of these concerning symptoms, it’s important to act fast to get them care. Additionally, during your baby’s check-ups, be sure to ask about genetic testing and alert any family history for gene mutations that you may be aware of.
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.
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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, 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,” Dr. Jackson explained. “Those for-profit companies sell drugs to help patients, but they also need to make a profit. 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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