A Cure for Childhood Cancer with The Leukemia and Lymphoma Society

10 min read

Representatives from LLS:

  • Kim Seely – LLS Children’s Initiative Ambassador and Vice Chair of the Board of Trustees for the Oregon and Southwest Washington Region of LLS. Her daughter is celebrating 7 years of survivorship from leukemia.
  • Charmaine Vazquez – Campaign Development Manager, Athletic initiatives for LLS.

Since its founding in 1949, The Leukemia & Lymphoma Society (LLS) has been dedicated to a single mission: cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable care. Driven by the tragic loss of their son to leukemia at the tender age of 16, the founders of LLS, the de Villiers family, has grown the organization from a small office in New York to now, the global leader in the fight against blood cancer. LLS is working tirelessly to find cures and provide more support for blood cancer patients and families than any organization in the world.

LLS provides free, one-on-one support to help blood cancer patients and families throughout their entire cancer experience. LLS’s Information Specialists are highly trained oncology professionals who provide free, personalized assistance to blood cancer patients, families and healthcare providers. LLS’s investment of more than $1.3 billion in blood cancer research has paved the way for successful and evolving treatment options for patients, many of whom are children. With a more than 70-year track record, LLS has supported virtually every advancement in blood cancer treatment.

In this interview, Rimini Street is joined by Kim Seely, Children’s Initiative Ambassador and Vice Chair of the Board of Trustees for the Oregon and Southwest Washington Region of LLS, and Charmaine Vazquez, Campaign Development Manager, Athletic Initiatives of LLS, to learn more about the work LLS is pioneering in pediatric global blood cancer research and treatments.

RSI Foundation: Thank you both for speaking with us today! Could you please start by helping us better understand blood cancer and how it affects the human body?

Kim Seely: Of course! Regarding leukemia and lymphoma specifically, leukemias are cancers that start in your blood and bone marrow.  It begins with blood cancer cells that have mutated. It acts like weeds taking over a garden, choking out healthy plants like tomatoes and green beans. That’s what happens with leukemia.

Leukemia really boils down to blood cells that mutate out of either the lymphoblastic or myeloid type of white blood cells. Thus, there are two main types of acute leukemias – acute lymphoblastic (ALL) and acute myeloid leukemias (AML). Again, the difference pertains to what type of white blood cell is mutating.

In pediatric cancer overall, the most common type is acute lymphoblastic leukemia (ALL). Because of LLS’s good work, the survival rate for ALL is over 90%. That is a tremendous cure rate. A majority of the research that led us to this cure rate was conducted by or as a result of LLS.

AML is trickier. There are only 500-600 cases of pediatric AML in the United States per year, but it’s the most prevalent type of adult leukemia. We are focusing our Children’s Initiative on AML primarily, as it’s a trickier disease with lower survival rates.

Rimini Street Foundation: Thank you so much for the thorough explanation. In terms of pediatric cancer, how many children are affected per year by blood cancer?

Kim: I don’t know the exact total number, but leukemia is the most common type of pediatric cancer, making up about a third of all pediatric cancers. The long-term effects of current therapies can create severe life-threatening complications. And survival rates for children with other high-risk types of leukemia, such as acute myeloid leukemia, are very poor. That’s why we are increasing investment in pediatric research.

One of the common symptoms of blood cancer is fatigue because the hemoglobin levels in your blood have dropped, and you are depleted of energy. Additionally, kids will bruise badly because the platelet levels that facilitate blood clots have dropped significantly. They get sick a lot. This is also what happened to my daughter, Anna, who fought against (and won!) an aggressive form of blood cancer at a very young age.

Rimini Street Foundation: What does LLS do to support children and their families going through something so heartbreaking?

Kim: I am so excited for The LLS Children’s Initiative. Through The LLS Children’s Initiative, LLS is taking on children’s cancer from every direction, disrupting the status quo with a bold vision for young patients – to not only survive their cancer, but thrive in their lives after treatment. The Children’s Initiative focuses on global collaboration, data sharing and international coordination across medical institutions, uniting doctors, pharmaceutical companies and scientists to reprioritize children’s blood cancer care and cures. The Children’s Initiative prioritizes pediatric research and new, less harmful treatments, utilizing global, collaborative research, as well as an even wider, 360° approach to patient support and advocacy.

What’s more, LLS is pioneering an unprecedented collaborative clinical trial, PeDAL to fundamentally change the way pediatric blood cancers are treated, while expanding the services and support we provide for children and families.

I call my daughter the “Rainbow Unicorn” because she was the one survivor of AML who didn’t develop any long-lasting health conditions. That is why I am so passionate about this. Survivors shouldn’t have to live with all these long-term impacts.

LLS is also working on expanding free education and financial support for kids and family members weathering this journey. When you are told your child has cancer, you think “I don’t even know where to start.” This could spiral into a very complex, frantic situation for the entire family. LLS’s Patti Robinson Kaufmann First Connection Program is a free service that introduces patients and their loved ones to a trained peer volunteer who has gone through a similar experience.

LLS also provides valuable resources and even financial assistance. Treatment for pediatric cancer is a marathon, not a sprint. In my daughter’s case, we spent 5 months straight inpatient in a hospital.

LLS also spends a lot of time on policy and infrastructure work to break down barriers to care. Many rural residents and people with lower incomes have a harder time accessing care when compared to those living in major cities. If my daughter had needed a clinical trial, we would have had to drive from Portland to Seattle just to get her treatment which is more than 170 miles (273 km) each way. We were lucky that we did not need to have access to a clinical trial, but you can only imagine how daunting of a challenge this would be for families living far from major pediatric oncology specialized hospitals.

LLS wants to help with these exact scenarios as well as removing barriers in insurance contracts, so all kids have equal access to treatments without issue. We have an amazing advocacy team.

Rimini Street Foundation: Can you explain the global aspect of this clinical trial versus if it were just US only?

Kim: Here in the US and North America, we have a premier organization that creates pediatric oncology protocols, the Children’s Oncology Group (COG). About 95% of the pediatric hospitals in North America are COG members. Through COG we have a consistent approach to clinical studies.

In Western Europe, there are 5 different study groups that deal with pediatric cancer protocols. The treatment might be different in Germany than in Great Britain. We want to bring these brilliant minds together to share information about what works and what doesn’t. It’s mind-blowing to me that no one has ever thought to do that before.

I am excited that LLS is a pioneer in this. We want to collect and share data from this worldwide clinical trial to battle all complex cancers. The survival rate is so low on AML and the side effects are so egregious, something has got to change.

RSI Foundation: I understand that there’s been very little advancement in the past decades in pediatric cancer. Can you please help us comprehend why this is?

Kim: Pediatric AML treatment has remained relatively the same for 40 years, with the same dosage of medicines and chemotherapy. On the AML side of things, it is effective about 30% of the time. Picture a castle – if the leukemia is an ugly castle and there’s a big door, in the old days they’d take a battering ram to the door and call that treatment. And it works about half the time.  Now LLS is beginning to collect data on the kids being diagnosed which is more like having a huge set of keys to the castle, one of which can open door instead of knocking it down. A softer, gentler way to open a door leads to higher survival rates and much less in the way of side effects. They’re starting to share that data freely now. It’s a HUGE INVESTMENT. The sheer amount of organization needed to manage data and coordinate genomic providers is staggering.

RSI Foundation: Wow, and you are a part of that history. This is huge! I’m still blown away by the fact that so little has been done to advance treatments and methods for 40 years.

Kim: I know, and they treat children and adults the exact same. They treated my 11-year-old daughter the same way they would have treated a 40-year-old even though there are differences in the cancers between children and the adults.

Pound for pound of weight, the treatment for kids is actually a stronger dose of the therapy than the adults because children rebound better than adults. Basically, what the treatment (chemotherapy) does is it obliterates every fast-growing cell in your body, like hair cells, skin cells, and all blood cells. The chemo indiscriminately kills all fast-growing cells. AML treatment basically kills everything in your body and lets it grow back every round of chemotherapy. For some kids, if they have an aggressive form of AML, they will do a full body irradiation and stem cell transplant in the hopes of eradicating the blood cancer, while allowing a new immune system to grow.

With regards to the choice of treatment, sometimes it’s about genetics. Doctors and scientists look to figure out where a genetic mutation started within a person’s chromosomes and that often predetermines how well people will do. Age also plays into it – with ALL, younger kids do better than teenagers. With AML, babies generally don’t respond as well to treatment as 3 to 4-year-olds. There are other traits that determine how well a child responds to certain treatments.

RSI Foundation: How does access to care affect the quality and timeliness of treatments for the patient?

Charmaine: There is a lot of socioeconomic impact. Our advocacy team has been doing tremendous work in providing access to care in low-income communities, reducing barriers that stand in the way of treatments and visits with doctors and specialists.

Kim: Sometimes, even things like making decisions on pushing out appointments can have material effects on the cancer. I was very fortunate that my daughter received care within 24 hours of her diagnosis, but that is not always the case.

RSI Foundation: We can only imagine how difficult it must be for single parents juggling all of this with grace.

Kim: Oh, absolutely. We say that blood cancer is a family cancer, no matter who gets it. Personally, we had to have one parent on kid-duty for our son going to school and all that, and one parent in the hospital with our daughter who was 11 at the time. Blood cancer is not isolated to just the child who’s going through it, it affects the entire family going through it. I lived at the hospital. I worked from my laptop and phone from there, I showered there, I ate there, I even exercised there. My life was at the hospital and my family’s too.

RSI Foundation: How long did The Children’s Initiative take to get from concept to reality?

Kim: This is the passion project of Dr. Gwen Nichols and it’s something she’s been thinking about for a long time. It took two to four years to get this initiative underway. It’s been groundbreaking to align all these organizations to come together. Doctor Nichols and the leadership team of LLS realized that pediatric cancer is a different animal than adult cancer. While they are related, they’re not really the same. LLS focused on this truth and said, “We’ve made dramatic strides on ALL and lymphomas, now it’s time to make strides on AML and apply the same learnings to all complex blood cancers.”

Much of the research that LLS does is applicable to other types of cancer. They make discoveries all the time that they can use for breast, ovarian, brain cancer. While it’s blood cancer research, it benefits everyone.

RSI Foundation: With cross-pollinating ideas, the data is powerful. But we are all overwhelmed with data.  Unless you have the right understanding of your goals and the analytic scientists to form hypothesis from it, it’s just information. The way you all are using this data is incredible – the sheer impact is really going to be something.

Kim: There’s an old saying – “D.R.I.P., or Data Rich, Information Poor,” which is what we’re trying to prevent with all these data repositories, the free exchange of information and ideas, and the clinical trial.

RSI Foundation: Could you please share your favorite stories while working at LLS?

Kim: I’ve got two. Because this is a family disease, it affects ALL the members of a family. It’s only fitting that my family has taken a proactive role in fundraising and spreading the word about childhood blood cancer, that it is survivable, and we need to make better headway into treatment. My husband climbed Mt. Kilimanjaro through the Team In Training Program that Charmaine is a part of, and he raised just under $60,000. We were thrilled and it was very cathartic for him. We likened his ascent of Kilimanjaro to my daughter kicking cancer to the curb.

My daughter, Anna, ran for the Students of the Year program at LLS. She raised over $130,000 at age 16. She did amazing things and was named the Mission Award Winner. She spread the word about LLS and was an excellent role model for others who are fighting it. To see her success was a really proud moment as not only a mom, but also a citizen.

RSI Foundation: It makes you happy for the future generations, right?

Kim: Definitely. Yeah, those are probably my two favorites. My son is already talking about how he wants to break his sister’s record and run for Student of the Year.

RSI Foundation:  Love it. How about you, Charmaine?

Charmaine: One of my favorites is very recent and it’s connected to how we met you [the RSI Foundation]! As you know, Sarah, who is our local teammate, is raising $100,000 to go to Kona and compete in the World Championship. One of our other teammates had been very similarly fundraising for LLS for years and participating in the Lavaman Triathlon. She was one of our top fundraisers, raising $10,000-$20,000 per year, all while not having a personal connection to the any of the diseases.

One year, she called me up and said, “My mom was diagnosed with leukemia,” and the entire team rallied around her. Her mom went through treatment, but then had to go back to work afterwards to pay for her treatment. LLS was able to provide her financial aid so she could retire again and focus on her health. The teammate said, “All these years, I fundraised for other people and now I’m seeing it come back to impact my family, I can’t thank you enough.” I’m happy to report, her mom is still doing well.

RSI Foundation: Oh, wow. That is wonderful. Thank you for sharing those stories and thank you for taking the time to speak with us on the wonderful and important work that you do. We very much look forward to seeing the impact of The LLS Children’s Initiative in fighting pediatric blood cancer, and to see your dream to eradicate this disease come true!

Rimini Street is a proud financial supporter of The Leukemia & Lymphoma Society’s Children’s Initiative. We welcome everyone to visit https://www.lls.org/lls-childrens-initiative-cures-and-cares-children to learn more about this $160M project attacking pediatric cancer from every angle.