A Triumph of Hope & Science: Meet Ash, An 8-Year-Old Ohio Boy Who Beat Leukemia Now Celebrating Five Years Of Remission After A Successful Clinical Trial

SurvivorNet’s Guide To Clinical Trials

A study published in the New England Journal of Medicine in December 2024 found that the clinical trial Ash was a part of had “significantly improved disease-free survival, and it’s something Homan is incredibly appreciative of as her son was chosen to take part in it and is now thriving as he’s five years remission at eight-years-old.

“I cannot tell you how grateful I am. We finished treatment and I feel like we gave him everything that we had. I don’t have any regrets,” Homan told SurvivorNet, as she shared her story with anticipation of offering hope to other parents whose children are battling cancer.

Looking back on what led to her son’s diagnosis, Homan admitted she didn’t suspect her then two-and-a-half-year-old’s “off and on” fevers would be linked to cancer. She initially thought the fevers were due to an ear infection or teething, and her pediatrician had a feeling it could be fever syndrome.

Homan described herself as a “pretty relaxed” mom when it came to parenting Ash as a toddler, as he’s her third child—so she often wouldn’t rush to the doctor when he felt a little sick, but the persistent fevers were concerning, so when her doctor referred them to infectious diseases and rheumatology, a her son had a full work up to help figure out what was going on with his body.

Hours later, Homan was told her son’s his hemoglobin was very low, prompting his quick return to the hospital.

“We needed to pack a bag and we needed to go to the emergency room immediately for blood transfusions.”

Then, what Homan expected to only be a few nights in the hospital, testing revealed her son was “extremely sick” and he had leukemia.

“I just couldn’t believe it. I wanted proof. … It just seemed like such a crazy thing to say, ‘Are you guys sure? … Do I need a second opinion?’ That’s not how it works in pediatric cancer. They know what’s going on and they don’t let you leave,” Homan recounted.

“I thought, oh, are we starting treatment next week? And they said, no, Arthur can’t leave. He’s staying here for the next month, and we’re getting him stable enough to have a procedure to get a PICC line and to start chemo in two days.”

Ash’s treatment began with blood transfusions when his hemoglobin was six. Homan explained, “So that’s pretty low, especially for an active small child,” adding that his bone marrow was 87% leukemia and “the higher that rate gets, that means the other blood counts are getting significantly lower.”

She continued, “There’s not room for those cells. Yeah, there was weekly IV chemo. We had to do weekly spinal chemo and then daily steroids. They massively use steroids that first month. So you have a very hungry, heightened emotions little child who doesn’t understand why they have to stay at the hospital.”

Homan then revealed her son’ doctor informed her about a clinical trial going on that her son might benefit from, something which he would commit to following day 28 of his treatment, when he was due to get a bone marrow biopsy.

The first month of his treatment plan went well, his body responded well to chemo and he had no evidence of disease in his spinal fluid, so Ash was able to be signed up for the new study, which Homan said, “That was when we signed onto this study. And at that point, because they had used it for relapsed patients with great success, I really appreciated that if we used it earlier in treatment, maybe that would prevent relapse, especially for a case like my sons.

Unknowing whether her some would be randomized in the trial, she said, “Either way, I felt like we had gotten to have this standard of care because of past families who had been willing to be part of trials. And so even if we weren’t able to get the medicine, at least being part of it so that our data could be used.

Months later, after Ash had some delays in his treatment due to him having minimal residual disease (MRD), but a bone marrow biopsy in in January 2020 revealed he was in full remission, prompting him to be randomized in the new trial.

Ash then embarked on his new treatment journey, which was two, 28 day cycles with a phase of chemotherapy in between.

Looking back on how how “extremely nerve wracking” it was to care for her toddler son in her house as he began feeling better but had a PICC line on his chest for a port for the regular administration of the medication, she said her family didn’t go out much as they didn’t want to risk Ash getting an infection amid the treatment.

“I was very, very grateful just that our family could be together and that my son was able to do this treatment at home, even though it was difficult, being at the hospital is really hard. So just having us be together and able to do our homeschool and read books and do puzzles and was really good,” she

“It was really rough to leave my other children when he was first diagnosed. And then once they have their central line, if you get a fever, you have to be at the hospital within about an hour to start administering antibiotics in case their fever is because of something like sepsis. So it was nice to have a little bit of of a break from that.”

Overall, Ash praised blinatumomab how it’s helped children like Ash, insisting, “I cannot tell you how grateful I am. We finished treatment and I feel like we gave him everything that we had. I don’t have any regrets.

Understanding The Clinical Trial Ash Took Part In

Ash’s doctor, Erin H. Breese, MD, PhD, Co-Director, Leukemia/Lymphoma Program, who initially told Homan about the new study, offered us more insight on the clinical trial which was un through the an international organization called the Children’s Oncology Group, an organization known for running many clinical trials across the country.

She explained “Cincinnati Children’s is one of the large sites for the children’s oncology group. And so the study was looking at a medicine called blinatumomab. This is a newer type of immunotherapy and the way that this medicine works is very different from traditional chemotherapy.

“The way this medicine works is it actually uses your own body’s immune system to try to fight the leukemia. So what the drug is, is I think of it as like a little linker that recognizes the leukemia cells by a little tag that’s on the outside of the leukemia cell and then also recognizes your T-cells, which are one of the types of infection fighting cells in your body. And by tagging, using that linker to bring the leukemia cell and the T cell right next to each other, it activates that T cell to then essentially attack the leukemia cell. So it’s really using your own body’s kind of normal infection fighting cells to fight the leukemia.”

After pointing out how the drug Blinatumomab received FDA approval in 2014, she noted how it had “mostly been used in the setting of relapsed leukemia and had been found to be very effective and very promising in the setting of relapse. So this was one of the first.

“And so this drug had been really, really effective in the setting of relapse. And so there was a lot of interest in moving it into frontline therapy. One of the reasons there was a lot of interest in that is our traditional chemotherapies have a lot of side effects. They make you feel bad, they put you at risk for infection, they make you nauseous, they make you really tired, all of those sorts of things. And some of these newer immunotherapies actually have a very low toxicity profile and are really, really well tolerated. And so, it’s potentially a way to give effective therapy for leukemia but have much less toxicity associated with the therapy.”

The clinical trial, included 1,440 patients, who underwent randomization of 722 patients who were give just chemotherapy treatment and 718 patients who were given both chemotherapy and blinatumomab, which Ash received.

Dr. Breese noted out how there when the study was only at approximately half enrollment, there was “a very strong statistical difference between the patients who were getting the traditional chemotherapy only versus the patients that were getting the blinatumomab. And that was enough that when they saw that difference, it was a strong enough difference that the data safety monitoring committee recommended that the study be stopped.

“Because the thought was that it was no longer ethical to randomize patients that there was such an improvement with this new medicine, that it was no longer ethical to randomize patients and that everyone should be having the opportunity to get this new medicine.”

She continued, “When they were comparing the two groups, the patients who had gotten the chemotherapy only or the standard of care, their disease-free survival, which means kind of no relapse essentially, in the chemotherapy only arm was about 88% of patients who had not had a relapse in.

“The ones that who had gotten blinatumomab, it was 96%, a very, very big difference. And the other thing that the study showed was within this population of patients, we have other ways of risk stratifying them further beyond that kind of initial standard risk ALL and this improvement was across the board, no matter how you kind of divvied up patients and what their other risk factors were and that sort of thing, everyone across the board benefited from getting the blinatumomab and made the risk of getting a bone marrow relapse incredibly small for this patient population.”

Dr. Breese praised the new treatment as “a win-win” for patients receiving his medicine [blinatumomab], as its “pretty well tolerated and tends to have less side effects than our traditional chemo, is helping to work better and make the chance of relapse much less, and it has changed what would be considered the standard of care for pediatric patients with ALL, where we would recommend getting this medicine for the vast majority of patients with pediatric ALL based on the results of this [study].”

As for telling her patients, like Ash and his parents, about clinical trials, Dr. Breese said, “We typically encourage all of our patients if there is an open clinical trial to participate if they’re eligible within the pediatric world, I would say the majority of pediatric patients are treated on a clinical trial if one is available.

“But we always have to evaluate whether or not that is the best option for patients. So if there’s a clinical trial available, we talk to families about that upfront and talk about why the trial is being conducted. And it’s always up to the families about whether or not they’re interested in participating in that trial or not.”

Dr. Breese notes that the therapy Ash underwent takes approximately two-and-a-half years, and then it’s followed by about a year or more of intensive therapy, as well as maintenance therapy for a year-and-a-half, “which is essentially taking oral chemotherapy at home.”

She explained further, “After that, we follow patients very closely initially in our clinics. Initially they’re seen monthly and as they get further out from therapy, that is spaced out. But we continue to follow our patients indefinitely once they’re several years out from completing therapy and at least five years from their initial diagnosis, they actually transition into our survivorship clinic.

“And we will follow patients through adulthood in our survivorship clinic to make sure that we’re continually monitoring for any potential long-term side effects from chemotherapy and to help optimize their health in general and make sure they’re getting good healthcare and taking care of themselves and living the healthiest life they possibly can for the rest of their lives.”

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.

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.”

Coping with a Child’s Cancer Diagnosis

As parents navigate their young one’s cancer journey, it’s important to remember that children’s bodies may react differently to treatments because their bodies are still growing.

“They may receive more intense treatments…and they may respond differently to drugs that control symptoms in adults,”  the National Cancer Institute informs. Be sure to ask a lot of questions.

RELATED: Why Do Pediatric Drugs Take So Long to Develop? A Look into the Lag Time on Drug Approvals for Childhood Cancer & Other Illnesses

Remember, you’re not alone — your child’s oncologist and care team are there to guide you and provide information and answers. Oncological social workers can also be a vital resource to help you sort out the financial aspects of cancer treatment, as well as other cancer-related issues. Skilled psychologists and counselors can be accessed to help you maintain good mental health through your child’s cancer journey, to the best of your ability.

Additionally, don’t be afraid to reach out to your support system friends, relatives, etc. for help through this process. No one expects you to handle everything on your own.

Meanwhile, 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.

What Is a Clinical Trial?

A clinical trial is a research study involving volunteers that looks into using new drugs or therapies. The goal of these studies is to test if new treatments are safe and effective.

Why I’d Choose a Clinical Trial For Myself

Clinical trials can be an option for people with cancer at many points during the treatment process. Your doctor may have spoken with you about possibly enrolling in a trial if you have advanced disease or if there’s a drug that’s currently considered investigational that may work better than the standard for you.

A lot of patients may feel uncomfortable about the thought of participating in a trial, but the trials can provide amazing opportunities for patients. For one thing, they give patients access to a bevy of new drugs that are currently being developed by pharmaceutical companies.

Things to Consider

In the U.S., all new drugs have to go through clinical trials before the FDA will approve them. In addition to being potentially live-saving for patients, these trials are also necessary to advance science and cancer treatments.

However, participating in a trial comes with risks as well, and it’s important to talk to your doctor about this before getting involved in one. Some risks to consider are:

• The risk of harm and/or side effects due to experimental treatments
• Researchers may be unaware of some potential side effects for experimental treatments
• The treatment may not work for you, even if it has worked for others

Still, joining a clinical trial comes with benefits as well. You will be given access to treatments that could be life-saving, but simply haven’t made it through the approval process yet.

Clinical Trials Can be Life-Saving for Some

If participating in a clinical trial is something you think you may be interested in, the government has a list of trials that are currently ongoing. SurvivorNet also has a tool to help you find trials for your particular disease.

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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