Podcast Title

E1 | Using the pain of loss to help other kids

Akua Sarpong

If we don’t step in, we will lose our children. We will be sacrificing our future.

Suheir Rasul

That’s Akua Sarpong. She’s one of the founding members and the executive director of Lifeline for Childhood Cancer. They raise funds for the treatment and care of children with cancer in Ghana. Their story is next on St. Jude Around the World.

I’m Suheir Rasul, and I have the privilege of serving as a Senior Vice President for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. As part of the St. Jude Global Mission, we collaborate with nonprofit organizations worldwide to fight against pediatric cancer and other catastrophic diseases. This podcast brings you real stories of the life-saving work of our St. Jude Global Alliance partners.

More than 32 million people live in the small country of Ghana on the African continent. It’s estimated that 12 hundred children develop cancer each year in Ghana, with only 500 receiving treatment. That’s because there are only three medical centers in the country with a few dozen beds that treat pediatric cancer. And that’s partly due to the fact many people don’t really understand that cancer can be diagnosed in children. It’s more understood as an adult disease that is never talked about. Akua Sarpong from Ghana leads Lifeline for Childhood Cancer, and even she did not know cancer can impact children at first.

Akua Sarpong

So, for a country where education is limited, literacy is low and healthcare is difficult to access, cancer is a huge affair. Even for the frontline, health workers still do not even understand what the early warning symptoms and signs are. So, we have a huge number of cases where children are misdiagnosed because your first point of call is not trained in identifying cancer.

Suheir Rasul

Diagnosing the disease is difficult for many reasons. And explaining it is also very difficult because there is no word in the vocabulary. There isn’t a direct translation for the word “cancer” in any of the 70 or so dialects in Ghana.

Akua Sarpong

So, yeah (laughs). Where do you start where do you end in trying to find a definition in 70 different dialects. You know I would say “yare bone.”  “Yare bone” is a bad disease. And that's the closest you can come to in describing it. “Yare bone.” Bad disease.

Suheir Rasul

Describing it is not the only hurdle. Traditional cultural and religious beliefs are also a barrier to pediatric cancer treatment and awareness in Ghana.

Akua Sarpong

We have very strong traditional beliefs. We have very strong family systems. We still believe in our myths. We still have a lot of taboos around diseases. Childhood cancer is really not spoken about. It's a taboo. We still have to work very hard to demystify childhood cancer. So even for a child who gets cancer, the parents do not want to say it. Do not want their family members to know. Do not want the community in which they live in to know.

Suheir Rasul

Like so many cultures around the world, the shame and the fear of the disease forces many to keep the diagnosis a secret, isolating the families from getting the support they need, which often leads to worse outcomes for patients, including death.

Akua Sarpong

Because of the myth and the belief system, that is why we have such low survival rates, because normally if a parent hears that their child has cancer, they’ll convince themselves the child will die anyway. So, let's just take the child home. It is not the devil that gives you cancer. It's not a death sentence. If you do get cancer, it is curable.

Suheir Rasul

Akua unfortunately deeply understands these barriers and how they can affect a family dealing with pediatric cancer. She lived that journey, as a mother with her daughter. At the age of one, her daughter became lethargic and stopped eating. When she took her child to the doctor, the doctor told Akua she must be teething.

Akua Sarpong

And I believed it. Who am I not to believe what the doctor is telling me, right?

Suheir Rasul

But it wasn’t teething. Her daughter’s condition worsened. Her stomach began to bulge. And once again, back to the doctor’s office. And the doctor believed it was gas or constipation, but to be safe, ordered an ultrasound even though that was not part of the normal practice.

Akua Sarpong

I remember the radiologist telling me, Oh, there’s a lump – a mass in her stomach. So I went back to the pediatrician to show the report and she said, Oh, gosh, oh, your child has cancer. What? Your child has cancer! You should go to the hospital immediately! Slow down! My child is supposed to have constipation or gas, according to you. How does it go from constipation to cancer? I mean, I was traumatized.

Suheir Rasul

Akua explained how overwhelmed she was and said everything was such a blur. But she didn’t take her daughter home to keep the diagnosis a secret like many young mothers do. She took her daughter straight to the hospital where she learned her daughter had rhabdomyosarcoma, a cancer of the soft tissue.

Akua Sarpong

And so we did the first cycle of the treatments and it had gotten so bad. You almost felt like we had awoken something in her body. Because it was just a small tummy. In fact, if you looked closely you didn’t even see anything different. But after the first cycle, her tummy had just grown so big. Rhabdo is cruel. Rhabdomyosarcoma is cruel. It eats you up. It takes everything away from you. So for a beautiful bubbly, you know, one-year-old child, beautiful hair, suddenly she's looking like a 90-year-old woman. It was just bones and just a big stomach. It was really scary.

Suheir Rasul

Despite the fear, Akua wasn’t going to give up hope. She was fortunate to be able to look for treatment outside of Ghana. And so they flew to South Africa.

Akua Sarpong

And because the tumor was so large, we needed three months. We had to do chemotherapy continuously, about 12 cycles or 15 – I lost count – to be able to shrink the tumor because they couldn't even detect where the tumor was originating from. It just kind of covered all the organs. So they needed to shrink it, so not to sacrifice any of her organs. So after three months we did the surgery. And it had shrunk and was localized.

Suheir Rasul

And the surgery was a success. The family returned to Ghana happily. There they continued the routine maintenance treatments. Everything seemed to be going well. Her daughter even started going to preschool. Finally, Akua felt she could breathe again. But then, more bad news.

Akua Sarpong

We’re doing this scan, just randomly. And my oncologist at the time, she's kind of feeling her stomach. And she has this odd look on her face. Okay, what's going on? And she's shaking her head, and I’m saying no, don't, you know, don’t even speak. And she had relapsed.

Suheir Rasul

By the time they could travel back to South Africa, the cancer had spread to her lungs. Doctors said her daughter's body wouldn’t be strong enough to withstand more treatment.

Akua Sarpong

And so we asked, how long do we have? And said, with some luck, you know, we'll get through Christmas, we'll have a good Christmas. So we carried on. Of course, she's deteriorating slightly. We enjoyed our Christmas and everything just went downhill. And she passed away in April, April 28th, 2018. Of course, it’s devastating losing your child. It's no easy feat. I mean, your life is wrecked. Where do you start from? You have other children. You've got to carry on somehow.

Suheir Rasul

Akua heroically carried on, not only for her own family but for other families she got to know with cancer in Ghana. She thought of other mothers and what they were going through, and how they would have the same fears as she did. She also knew how expensive it was to travel outside the country and to get treatment.  

Akua Sarpong

I'm thinking this is such a wrong picture. It doesn't make sense. We keep saying children are our future. We believe in the children. But if you can't support the children who need it at the time they need it, then everything is wrong. So at the time, the pediatric oncology department needed to set up an avenue to be able to receive funding.

Suheir Rasul

Akua decided it was time to do something for the children. And that is what led her to be the co-founder of Lifeline for Childhood Cancer in 2018. Today, Lifeline raises funds to pay for treatment and operates a housing facility with 54 beds for families in need who don’t have the means to travel or live near a hospital during treatment.

Akua Sarpong

They come with nothing. They’ve left their family, they’ve left their children. And to start the process, they are already drained. They’re broke. They’re tired. They do not understand what is going on. So it’s a very, very painful process even from the very beginning.

Suheir Rasul

Akua understands the painful process. And that’s why she pays special attention to the mothers and provides the kind of emotional support she wishes she had received.

Akua Sarpong

You know, as parents, we blame ourselves a lot. How did we contribute to the child getting cancer? Is it something we should have done? Is it something we did? Is it something we ate? Is it something we didn’t do. And we carry that guilt. A lot. So even apart from, you know, ensuring that the child gets the treatment that they need it’s very important that someone also worries about the mothers, their mental health, their state of mind, because when the mother is happy, the child is happy, and the treatment gets better. And we've seen it continuously. When the mother is confused and unsure, the child suffers in so many ways they don't even realize.

Suheir Rasul

Having a place to stay is just one of those uncertainties many mothers fear. That is why providing housing for the families helps ensure completion of treatment and supports the chances of a child’s survival. Lifeline broke ground on a new 40-bed pediatric treatment center. And in order to build that center, the organization has to raise hundreds of thousands of dollars in a country that doesn’t even understand the disease. For Akua, she knows she has to push against the cultural barriers every dayt to make that a reality. She’s excited about the future for Lifeline and grateful to do the work that allows her daughter’s memory to live on.

Akua Sarpong

She was sweet. She was headstrong. She was beautiful, beautiful. Short, but very fruitful life. For me, I think I don’t want any parent to go through what I went through. If I knew now what I knew then, I mean I would have done things a lot different. I have managed to use the pain, and I think maybe that's where God wanted me to be. To use my pain into making change, into making an impact, into changing lives.

Suheir Rasul

Akua Sarpong has had an impact on many families. She is one of the founding members and executive director of Lifeline for Childhood Cancer in Ghana. The organization has been part of the St. Jude Global Alliance since 2020.

Thank you for listening to our story. We hope you enjoyed learning more about our partners in the St. Jude Global Alliance.  

This episode was produced by Geoffrey Redick. It was edited by Grace Korzekwa Evans and Evelyn Skoda. Recorded by Jason Latshaw. And I’m Suheir Rasul. 

E2 | Working across borders to increase survival rates

Alejandra Mendez

I cannot think how it would be for a family to know that there is treatment available to save your kid’s life, and you cannot access to it. 

Suheir Rasul

That’s Alejandra Mendez. She’s a board member of a foundation in Chile that works to help families of kids with cancer. Today we’re going to hear her story. That’s next on St. Jude Around the World.  I’m Suheir Rasul, and I have the privilege of serving as a Senior Vice President for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. As part of the St. Jude Global Mission, we collaborate with nonprofit organizations worldwide to fight against pediatric cancer and other catastrophic diseases. This podcast brings you real stories of the life-saving work of our St. Jude Global Alliance partners.

Many children and their families from around the world have come to St. Jude Children’s Research Hospital for treatment and leave not only cured but also inspired. That’s the case with a group of parents who came from Chile. And once they returned to their country decided to give back. They created a nonprofit organization called Fundación Nuestros Hijos, modeled after St. Jude. They understood that treatment alone wasn’t enough, and it was just as critical to provide the psychosocial support for the parents and the entire family. And Alejandra Mendez, one of the founders, says that’s where the foundation comes in.

Alejandra Mendez

Chile is a very long and narrow country, and we are centralized. So, the big pediatric oncology hospitals are located in Santiago and in another city. So, people need to relocate in order to receive treatment. So, we provide home away home. So, accommodation for those children and the family. We provide in-hospital schools for them to continue their education. We provide some medical services not covered by the State, for example, pain medication and some other medications to treat secondary effects like, you know, nausea and these are not covered. So, we provide that. Mental health is not covered by the State. And of course, adolescents or children need that. It's super important for their wellbeing. So, we provide a psychologist and mental health treatment for them and their caregivers as well. Survival rates are pretty good in Chile, so we have, our number of survivors are growing, but unfortunately 80% of our survivors present side effects like, could be cognitive or physical, right? So, we provide a rehabilitation center for those kids. We not only cure them or try to cure them, but we want them to have the best quality of life possible. So, we will rehabilitate them with physical therapist. And when they have cognitive issues, we will work with them, with neurologists, and we have 11 different specialties. So, we want he or she to have the best quality of life after cancer treatment.  

Suheir Rasul

Alejandra connects deeply with these families because she too faced the same uncertainty with her child. Pablo, her first-born, was diagnosed with cancer at the age of two. Just as her and her husband began their lives in Boston.

Alejandra Mendez

I honestly cannot think of a worst news for a mother to receive than to hear that your son or your daughter has cancer, not only to face the possible death of your child, but also you know that the only way of saving him is putting him through this extremely aggressive treatment, something that is long, that hurts, that is painful, that may leave secondary effects in him. So having to put him, in my case, him through this hurts. I don't recall how many times I would say I wish it was me and not him. As a mother, to see a child go through this, it's so painful. We then had two more kids and Pablo relapsed three times. So, they went through that treatment. So, we as a family feel like we went through cancer. Siblings, for them it’s very, very hard as well. They feel neglected. You as a mother need to make choices and choose to be with the sick one and the others are left behind. And siblings, parents, we all survive cancer. Pablo was diagnosed, but we all went through this. It's a thing that really, really marks each of us for good, for life.  

Suheir Rasul

When her son was diagnosed, it just so happened that they were living someplace that had treatment available. 

Alejandra Mendez

I feel so blessed and lucky that he could be treated here in the United States because there was a cure available here. And they did, they cured him. But that's not the reality in Latin America. So, it hurts. It still hurts to think, what if? What if Pablo, or what if we could have not had the opportunity to treat him here? So that's my passion now – the cause. I think that I want every child in Latin America and in Chile to have the opportunities that Pablo had. Because as a mother, if there is treatment available somewhere in the world, you as a mother would do whatever it is to save or to protect her son or daughter. I'm working in this field with such a passion because I want that every child has the same opportunities that Pablo. And I want every mother whose child is diagnosed with cancer to feel the way I feel, that if there was a treatment available, my son had access to it. 

Suheir Rasul

The St. Jude Global Mission works to provide that kind of access around the world. Alejandra says there is more work to be done in Latin America.  

Alejandra Mendez

In Chile, our survival rate is 78%. So, it's a very, very high survival rate compared to developed countries. But in some Latin American countries, like in Bolivia, it's up to 30%. So, in Chile, we are receiving children from different Latin American countries, we host them because they come, they travel to Chile to receive treatment. So, we are not only providing services to Chilean kids, but also for other Latin American countries. So, we are now expanding our coverage. We are building a new building because we want to improve our capacity and be able to host, receive children with cancer from different Latin American countries.  

Suheir Rasul

Reaching out beyond their borders to those who need help, the foundation is part of a chain of collaboration and compassion to increase the possibility that every child has a fighting chance.  

Alejandra Mendez

What keeps me up at night or my big worry would be that in the world many children are dying because of cancer. And it strikes me to think that in some countries survival rates are so high and in some other countries are so low. Most of the kids who are dying from cancer are dying because of reasons that could have been prevented. When they are diagnosed it’s too late. Usually, palliative care is the only outcome possible. Kids are dying because of treatment abandonment. They have to travel from one city to another. Like in my country they need to relocate to receive treatment either from another city or to another country. As I said, children are moving from some other countries to Chile. But then there's a point when they cannot afford to leave or to rent or to, you know, so they abandon treatment. So, kids are dying because of treatment abandonment. Kids are dying in some countries because of preventable reasons like infections. You know, their immune system is low. They get like this infection, and they would just die. So, all these deaths could be prevented. And there is treatment available. The scientific community is doing so much and we as parents are so grateful for every, you know, every person who came to the right protocol and they, you know, the right protocol that saved Pablo's life, for example, I know it came because of many scientists who've been researching and studying. But that treatment is not always accessible to every child. That's what really keeps me awake at night sometimes, because as St. Jude said, a cure for all. And I really, that should mean everybody, all the children.  

Suheir Rasul

“No child should die in the dawn of life,” are the words of Danny Thomas, the founder of St. Jude Children’s Research Hospital. And those words are what guides the St. Jude Global Mission to work to ensure every child, no matter they are born, has access to life-saving treatment.

Alejandra Mendez

We are all from so different cultures but we are all facing similar challenges. And that's amazing. You talk to people from different continents, different regions. We all have the same purpose. We all want to, you know, save more lives. We want to make children have the best quality of life. We want to cure kids and we want them to have full lives ahead of them. And that's exactly what I really love about this Global Alliance, to learn to share, to, you know, collaborate. We don't need to reinvent the wheel every time. Sometimes just talking to somebody who has just come to a similar challenge and developed something that is interesting and you said, Hey, we can adapt that. And what I really like about this is that if I was working in the corporate world probably we’ll be all competing, you know, not really sharing. You know, how it is in corporate. Here, everybody wants to help.  

Suheir Rasul

The St. Jude Global Alliance works to connect and to share knowledge worldwide to make it possible for every child to have a fighting chance. The kind of outcome Alejandra’s son Pablo has. Twenty years later, he’s healthy and has no lasting side effects.  

Alejandra Mendez

Pablo is studying. He has a girlfriend. They were backpacking last summer. He plays soccer. He climbs the hill. He's happy. He's a man now. He's 24. He has a full life ahead of him. And that's something impossible to not be every single day of my life grateful for.  

Suheir Rasul

Alejandra’s story had a happy ending, but unfortunately it’s not the ending many parents and patients in other countries experience. Survival rates around the world today are still 20 percent in many countries. And with limited access to care. St. Jude Global, along with the World Health Organization, has partnered with hundreds of institutions around the world, committing to increase survival rates to 60 percent by the year 2030.

Thank you for listening to our story. We hope you enjoyed learning more about our partners in the St. Jude Global Alliance.  

This episode was produced by Geoffrey Redick. It was edited by Grace Korzekwa Evans and Evelyn Skoda. Recorded by Jason Latshaw. And I’m Suheir Rasul. 

E3 | Relentless dedication to her patients

Mae Dolendo

I’m just an ordinary person, but I try to go out of my way to do things with great love. Seeing the suffering of a child is to me unbearable.

Suheir Rasul

You just heard Mae Dolendo. She’s a pediatric oncologist working in the Philippines. Today we’re going to hear her story. That’s next on St. Jude Around the World. I’m Suheir Rasul, and I have the privilege of serving as a Senior Vice President for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. As part of the St. Jude Global Mission, we collaborate with nonprofit organizations worldwide to fight against pediatric cancer and other catastrophic diseases. This podcast brings you real stories of the life-saving work of our St. Jude Global Alliance partners.

It’s often said when a family member has cancer it’s like the entire family has cancer. Imagine if that family member was just a child. At an early age, Mae Dolendo understood that emotional cost of cancer on her family, and what it does to everyone.  

Mae Dolendo

I was orphaned by cancer at a very young age. I was 17 when my mom passed away from breast cancer. I was the eldest in the family, and we almost lost everything, including our home, trying to have my mom cured of cancer. To me this is not a job, this is personal. I am inspired by the bravery of children and families. I’ve seen parents who will never give up. And if can make a dent on the kind of grief that cancer brings not only to children but to families then I think it’s worth all the effort and all the energy that I put into this work.

Suheir Rasul

Dr. Mae Dolendo, or Doc Mae as she is called, spends her days at the hospital in Davao City on the island of Mindanao. Ironically, she didn’t even plan to go into pediatric oncology. She didn’t even know it was possible to cure kids with cancer.

Mae Dolendo

Initially I thought that being cured for cancer was just something that you read in the books. Because my personal experience was a lot of them died.

Suheir Rasul

Her personal experience changed when her medical training took her to Singapore where she saw for the first time a cancer patient as a child who had survived.

Mae Dolendo

And to me it was like what? You can have somebody be diagnosed with cancer, become an adult and have children of their own? I asked them how do you do this? How do you treat children with cancer? I want to learn how to do this and go back and bring this with me.

Suheir Rasul

And bringing it back to the Philippines is exactly what she did. She started treating children in a small room with three beds. She was the doctor, the nurse, the social worker and everything else in between. She did it all. And still she felt like it wasn’t enough.

Mae Dolendo

There was this one patient that got very ill. I remember it because it was the Holy week. And the Holy week in the Philippines, even the hospital is a skeletal workforce, and for that particular patient I was really attached to the child and was trying to help them. I was even the one who went down to get the blood for the patient because I couldn’t wait for an attendant, or I couldn’t wait for somebody. I had to go to the lab, stand outside of the lab and wait until they could release the blood so I could bring it upstairs and have it transfused to the kid. Short of sleeping next to the patient I was doing that for several days. And then eventually, I remember because that started on a Wednesday and eventually on the Sunday the patient passed away. It totally broke my heart. And I tend to question, why am I doing this?

Suheir Rasul

And as Doc Mae said, it was hard work, but it was even harder on her emotionally. And it stayed that way for years. Doc Mae and her staff were treating more and more patients. That meant statistically, they were seeing more deaths. Each death hit the staff just as hard as the first death. So, she came up with a new way to keep focused on the positive side. She decided to remember the patients she had saved. So she started a special day called Survivor’s Day.

Mae Dolendo

The first survivor’s day was actually my birthday. I said instead of me celebrating my birthday why don’t just I have a party for kids who have survived cancer. And, ok, let’s call everyone. And so 11 kids came. There were 11 kids. But we were happy because we know that we were saving kids even if it is 11 kids it’s still 11 kids. But over the years, we sort of were doing Survivor’s Day every year. And in 2019 I think we have grown into a celebration of 600 kids.

Suheir Rasul

Doc Mae celebrates every child. But then she quickly realized it wasn’t just about the numbers of kids that survive. It was much more than that. It was all the other lives that were impacted.

Mae Dolendo

We already have survivors who have families, who have their own children, you know who have finished university, who have careers you know who have love problems instead of cancer problems. That totally blew us away. We never noticed. We realized that we were not only saving lives we were also saving futures. We were making dreams come true. That puts the whole thing into an entirely different perspective. And then I thought about the first time I decided to be a pediatric oncologist when I saw that mom and her kid, you know? We’re there. We’re beginning to have kids who survive cancer, and living their life after cancer and living as if cancer didn’t happen. And I think it makes this whole thing worthwhile.

Suheir Rasul

When Dr. Mae Dolendo opened her pediatric cancer practice in 2004, she never imagined life after cancer because cancer was not treatable in the Philippines. A few years later, she realized it wasn’t only about the treatment. There was so much more to do.

Mae Dolendo

One night when I was doing my rounds, I saw this father who was looking after his child. And I’d been seeing this parent for several days. And I was asking the dad, where is your wife? Why are you the only one looking after your child, because for me it’s quite tough to be in the hospital for several days and nobody takes over. He told me, Oh my wife just gave birth and she has the baby with her. And so where are you staying? He told me “My wife is across the street in the bus stop.” And to me I mean to me what am I doing for this family? I know I am a doctor treating cancer but what about the rest of the family? And so I was able to bring them to bring them to the hospital kitchen and they get to find a space there. That got me to thinking that these patients, they need a place to stay while they are ongoing treatment.

Suheir Rasul

Doc Mae understood that families needed a place to stay. She also understood the impact on a family from her own experience. And that’s what started the transient home called House of Hope. It was built across the courtyard from the hospital so families can live there while their child is undergoing treatment. Similar to what Doc Mae saw at St Jude Children’s Research Hospital when she visited in Memphis, Tennessee.

Mae Dolendo

They don’t have to worry about transportation. They don’t have to worry about coming back to the hospital three times a week. So House of Hope made an impact in how patients are able to complete treatment and to have actually better chances of cure. It also was able to provide us with better resources because patients stay there for free so they don’t have to pay for a lodging house so they have extra money they can use to buy food or whatever else the child needs. This actually increases the child’s chances of completing the whole treatment and to be cured.

Suheir Rasul

The families living together in the House of Hope gave them a sense of community. The parents all pitch in, they rely on each other. All kinds of people, from different backgrounds and cultures living together, for one purpose. To give their child a fighting chance. And that is what House of Hope represents.

Mae Dolendo

I think it’s totally terrible for people to run out of hope. What House of Hope was able to do was inspire not only the patients but also the parents and the people who are working with us to be able to share in what we are doing in whatever way they can.

Suheir Rasul

Doc Mae realized hope was critical for everyone to believe in the future. So eventually they opened a school for the children to continue their education.

Mae Dolendo

We realized that when we started this school it actually inspired a lot of kids because it gave them hope that “oh after I complete my treatment I’ll still go back to school.” It gave them hope that cancer and cancer treatment is just this moment and that there’s life after cancer, you know that they can go back to being kids.

Suheir Rasul

House of Hope demonstrates how being able to stay connected with the family means a patient is more likely to complete treatment. Global survival rates increase when patients are able complete treatment with the strong support of the family unit close by. And this idea of a family unit extends globally as the House of Hope and the hospital in the Philippines have been partners with St. Jude Children’s Research Hospital since 2006.

Mae Dolendo

St. Jude allowed us to have access to people who might be able to help us with our problems. I think we were also able to contribute because we give them lots of challenges. Difficult to diagnose patients. And so in a way I think we’ve benefited from the expertise of the people at St. Jude but at the same time we were also able to contribute in trying to introduce to St. Jude a whole world out there which has lots of needs and lots of aspirations as well as lots of challenges.

Suheir Rasul

It becomes difficult to stay connected because of technology sometimes. Something as simple as consistent internet connection is not always available. Even Doc Mae herself didn’t have the luxury of internet access in her office at the hospital.

Mae Dolendo

Being able to have reliable internet, you can just imagine you are discussing one patient then all of a sudden everything turns black. What did they say about the scans or pathology? What’s the input about pathology and all of a sudden it dies because your internet is very bad.

Suheir Rasul

Then in 2022 a new program offering Starlinks by St. Jude Global and the Polaris Dawn team changed all that.

Mae Dolendo

The U.S. is very far away right but the fact that we’re able to communicate with them. We are able to access the resources. We are able to talk with specialists that we would have otherwise no capacity to do. I think it is simply amazing.

Suheir Rasul

Communication is key. And that’s why the Starlink program was the solution. Starlink is the high-speed internet service enabled by orbiting satellites operated by SpaceX. THe Starlinks are part of a donation to St. Jude global partners by Polaris Dawn, which is led by the philanthropist Jared Isaacman. He’s the commander of Inspiration4, the history-making first all-civilian mission to orbit in 2021 that raised funds for St. Jude Children’s Research Hospital

Mae Dolendo

We’ve been having online meetings with St. Jude for decades. I was thinking that, why don’t I do this with our own shared care facilities? When they have patients on the ground, they could present to me. I could give advice or tell them this patient is difficult in your setting kindly just send them over to us?

Suheir Rasul

She says reliable internet through Starlinks gives her superpowers and gives her the ability to share the knowledge she’s getting with other doctors in the Philippines.

Mae Dolendo

It’s like how I am being in the Philippines able to access the specialists in the U.S. because of St. Jude, and somebody very far, who’s living very far away being able to access me. I think that’s the power of a very good internet.

You don’t have to be extraordinary to do the things that we are doing because we are just ordinary people trying to do extraordinary things. Anybody can be part of this whole community that looks after kids with cancer because it takes a lot. It takes a whole village, it takes a whole world to care for a kid with cancer and everyone is important. When we started doing what we were doing even when we were in that small room with three beds, what was important was people sitting down talking together and sharing ideas. When you have a good team, when you have people communicating to each other very well we can accomplish great things.

Suheir Rasul

Despite all the progress Doc Mae has made, access to quality care remains an issue in the Philippines. That’s why St. Jude Global is working with healthcare institutions and foundations across the globe to increase survival rates. Because every child deserves a chance to live. And St. Jude won’t stop until no child dies of cancer no matter where they live.

Thank you for listening to our story. We hope you enjoyed learning more about our partners in the St. Jude Global Alliance.  

This episode was produced by Geoffrey Redick. It was edited by Grace Korzekwa Evans and Evelyn Skoda. Recorded by Jason Latshaw. And I’m Suheir Rasul. 

E4 | Offering free care to all

Afifa Batool

You have to know that whatever you did in this life has some meaning, has some objective. At least you made an effort to save somebody’s life. 

Suheir Rasul

That’s Afifa Batool. She’s the head of marketing and communications at Indus Hospital and Health Network in Pakistan. Today we’re going to hear her story. That’s next on St. Jude Around the World.  I’m Suheir Rasul, and I have the privilege of serving as a Senior Vice President for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. As part of the St. Jude Global Mission, we collaborate with nonprofit organizations worldwide to fight against pediatric cancer and other catastrophic diseases. This podcast brings you real stories of the life-saving work of our St. Jude Global Alliance partners.

Indus Hospital and Health Network in Pakistan began with one hospital in 2007 and has grown into a vast network of healthcare facilities across the country. They now have 15 hospitals, primary care sites, rehab centers and the largest pediatric oncology services unit in Pakistan. They see a wide range of patients, people from all different places, cultures, backgrounds and even different income groups. Afifa says that if a child belongs to a lower income group, the financial challenge is not even the first issue. Often the parents are not even aware of pediatric cancer and do not even know where to go. They often go to the wrong healthcare professional.

Afifa Batool

They usually think that it's a normal fever, so they would just self-treat them or go to a neighborhood hospital or a doctor who may not be fully equipped with the knowledge. And often that gets into a situation where the child leads up to the next stage and the next stage, and it's almost nearing to a very difficult stage for the child to return back. And when they come to us, usually it is when they are devastated through and through. And when they eventually find out that what is going on with their child, it is furthermore devastating for them.  

Suheir Rasul

Not all cases in Pakistan start off that way. Parents in the middle-income groups are usually able to get the right tests and diagnostics for their children. But even then, they can’t afford cancer treatment in a private hospital. 

Afifa Batool

So every parent wants to give the best to your child, and especially when people who are from the middle income group, they struggle to do that because their income is not supporting that. So this is where, again, they are devastated by the fact, one which is cancer, which is which comes down as a bombshell to them. Second, they know it's very expensive and they know they don't have the means, so for them it's furthermore devastating what to choose and how to move around. Why they come to Indus is because of the fact they know that we will give them free treatment, we will give them quality treatment. But the only taboo that they feel, oh we’re going to a charity hospital. And that can become kind of a social pressure from the family, from the neighbors, oh you're going to a charity hospital. Charity hospital does not give good services, but we are a different hospital. And a lot of people do not know that. Until the patient comes and the family comes into it, and they experience that. They then feel confident that, you know, we are in the right place.  

Suheir Rasul

Then there’s the higher income families in Pakistan. They often can afford to go to a private hospital at least a first. But even with their insurance, the treatments can become extremely expensive, and parents look for relief and transfer to Indus. No matter their income group, Affifa says all families face cultural challenges in their communities as well.  

Afifa Batool

Oh, maybe the family has this tendency of having everybody having a cancer, or even if it's a girl, and if she recovers, it is always a tagged history. Oh, she had cancer, oh she had cancer. So, getting her married at times gets very difficult also. It’s not just the disease itself, but the social norms, put the parents and the family under so much duress and pressure, that at times, it's very difficult for them to choose whether to go for the treatment or not. 

Suheir Rasul

One of the objectives of Indus as an institution is not only to treat patients but to work against these kinds of cultural taboos, to spread awareness about childhood cancer.  

Afifa Batool

We talk about it more so that people are aware that, look, it is curable. You just have to tap it at the right time. You have to give your best shot and it is curable. We can beat it.  

Suheir Rasul

Afifa is dedicated to this work in part because she felt destined to become a doctor when she was younger. Her father was a doctor, and he expected that she would follow in his footsteps. She was on track to do that. But then when she was in high school, her sister passed away suddenly.  

Afifa Batool

She got meningitis and she just passed away in two days’ time. And it was pretty heart wrenching because it didn't register to me what had happened to her and it just happened so fast. And I was completely broken down and I decided, okay, I'm never going to pursue medicine because how will I see someone my own passing out in my hands and how am I supposed to handle it? And you're a teenager, and at that time you don't have the strength. So, I completely told myself that I'm not going to go into medicine. Although I had given a test to enter a medical college, I even cleared it, and I didn't pursue it. 

Suheir Rasul

After her sister’s death, Afifa changed her career journey drastically by getting a master’s degree in media education and working first in television and then in marketing for a university in Pakistan. When she got the opportunity to join Indus, she said it felt like it came full circle and helped her fulfill her childhood wish to work in medicine.  

Afifa Batool

Being in that hospital setting, you really come close to patients to know how they work, how they react, how they feel, to learn about them, to really feel the stories that they come from or they share. I mean, you know, it really puts my heart back into my whole aim of my life that I wanted to be a doctor, I wanted to serve. I wanted to help people. And I think that all came around so well in this role. Every time you walk in the hospital, you see thousands of people sitting, bare feet, no good clothes, and they're like, you know, struggling to live a life. That is a motivating factor. Every morning you walk in and you will connect with somebody through their eyes, through their smile, through their looks, their gesture, or a mother with a child looking happily to the child irrespective of what heat and situation she's coming from. And then as you walk up, we have a physical rehabilitation center right next to our office. You see a lot of patients with prosthetic limbs sitting and waiting for their turn to go for rehabilitation. You see a lot of children there waiting to get a prosthetic limb. And my little effort, I feel, can do something for them. I may not be clinically serving them, but, you know, a little bit of effort on making good communications, telling their story, telling what we do, how we are impacting their lives. If that can draw a supporter, a donor to support us, I think I've done my part. 

Suheir Rasul

Like many healthcare workers, Afifa brings these stories of patients home with her, talking with her son about the importance of reaching out, to make a difference. And Indus works with volunteers from schools and colleges around Pakistan to make this a reality and to raise awareness. 

Afifa Batool

And the only thing I keep telling them, just think for a moment that if you had someone so close in your family who was going through this, you would have done an extra mile for that. So you just have to keep thinking that these people are your distant relatives, they are your distant siblings, and you just have to help them out, and they just need a little bit of smile. They need a little bit of, you know, comfort. And that's all they need at the moment because the treatment is going on, and this is what they just need.

Suheir Rasul

Afifa insists that this work is not about individual effort, but about lots of people coming together to make an impact. Partnerships in the St. Jude Global Alliance reach across  continents bringing unlikely partners together. Indus was part of a joint fundraising effort in 2022 with a pediatric cancer foundation in Poland called Heroes. It centered around a long-distance runner who traveled the three highest mountain ranges in the world. This kind of cross-country partnership is possible because of the St. Jude Global Alliance, who brings these partners together on the St. Jude campus in Memphis, Tennessee.

Afifa Batool

And this is important to break away that bubble. Otherwise, we are so deeply knit in our own work and daily goals and daily achievements that we forget that there is room for, you know, brainstorming. We need to think out of the box, and out of the box never comes around, because when you're so deep down involved in your own systems and processes and works and projects, and it will only come once you meet people from different angles, different perspective at different levels, and they don't belong to your own community. Maybe they don't belong to your own region, and that is where your ice breaks. And they’re certain things which are absolutely common. I mean, irrespective of what background you come from, the feelings, the emotions, the objectives, they're the same. So if these are the same things and, you know, maybe I was the first one to find a solution, maybe they were the first ones. And with these meetings we’re able to connect and fast track our own, you know, challenges in saying that, okay, maybe I was having a roadblock, now they’ve done this. Might as well just share, take that experience and move on. So I think this is going to be a great opportunity, making new friends, new ideas to bounce off and an experience that we will definitely cherish and go back and tell our own team that, look, nothing is impossible. 

Suheir Rasul

Each year, an estimated 400,000 children worldwide develop cancer. Globally, approximately 90% of children with cancer live in low- and middle-income countries, and far too many of these children lack access to adequate diagnosis and treatment. Compounding this problem is limited public funding for pediatric care. Many of these children will unnecessarily die from their diseases. St. Jude Global is working to change that.  

Thank you for listening to our story. We hope you enjoyed learning more about our partners in the St. Jude Global Alliance.  

This episode was produced by Geoffrey Redick. It was edited by Grace Korzekwa Evans and Evelyn Skoda. Recorded by Jason Latshaw. And I’m Suheir Rasul. 

E5 | Treating cancer in a conflict zone

Announcer

This podcast was recorded before Syria’s Bashar al-Assad regime fell on December 8, 2024, following 14 years of civil war and conflict.  

Mayya Assaad

There was no awareness whatsoever about childhood cancer. Most people thought it was a fatal disease with no hope and that it was contagious. So many children with cancer were marginalized in the society.

Suheir Rasul

That’s Mayya Assaad. She’s the co-founder of a pediatric cancer foundation in Syria. Today we’re going to hear about the challenges of treating cancer in a conflict zone. That’s next on St. Jude Around the World. I’m Suheir Rasul, and I have the privilege of serving as a Senior Vice President for ALSAC, the fundraising and awareness organization for St. Jude Children’s Research Hospital. As part of the St. Jude Global Mission, we collaborate with nonprofit organizations worldwide to fight against pediatric cancer and other catastrophic diseases. This podcast brings you real stories of the life-saving work of our St. Jude Global Alliance partners. 

Suheir Rasul

In many low to middle income countries, pediatric cancer is not a priority. And that was the case in Syria until Mayya Assaad learned of the problem. She was volunteering at a children’s shelter one morning when her relationship with a little girl led her to a children’s cancer center in Syria. This experience changed her life forever. Which eventually led her to be the co-founder of the foundation called BASMA – the Children with Cancer Support Association in Syria. In Arabic, BASMA means “smile.”

Mayya Assaad

I cannot express in words the feeling of shock and sorrow when I saw these children, the sight of gray walls, the fears in their eyes, because their parents weren't allowed to stay with them, the nurses were understaffed. No compassion. I will never forget that day. So after that day, I started to do research about childhood cancer in Syria.

Suheir Rasul

And her research eventually led her to St. Jude Children’s Research Hospital in Memphis, Tennessee, where she also learned about the decades of work and partnerships with hospitals in the region including Jordan, Lebanon and Morocco. Mayya decided to visit each location to learn as much as possible before going back to Syria and establishing the first nonprofit organization dedicated to pediatric cancer.  

Mayya Assaad

There were no specialized centers or units in Syria, only this cancer unit and the children's hospital, which consisted of 34 beds. So it was the only place of treatment for all children coming from all over Syria to Damascus to get treatment. There were very few specialized doctors. Most of the children were treated by adult oncologists. There was no awareness whatsoever about childhood cancer. Most people thought it was a fatal disease with no hope and that it was contagious. So many children with cancer were marginalized in the society. 

Suheir Rasul

Despite not being a medical professional, she decided to learn how children with such catastrophic diseases could be treated. All the work she was doing was on a volunteer basis, and she quickly realized she needed help to fight for these precious children. So she recruited more volunteers. One of those people with the same passion and drive was Rima Salem. She too lived in Syria and had seen the pain that pediatric cancer causes. 

Rima Salem

One day one of the moms asked me to help her to move her nine-year-old child whose name was Fatima to the hospital. She had blue eyes and blue scarf because she has no hair. She was very nice. She liked painting and drawing. Fatima that day was very weak, and her situation is getting worse. She was suffering a lot. I moved Fatima, and I knew that this is the last time I would see her. Until today, when I know we are losing a child, every time I see Fatima in front of me. 

Suheir Rasul

Fatima’s death was overwhelming for Rima, and she stepped away from her volunteering. But she could not stay away for long, and she became the Executive Manager of BASMA. In a short period of time, BASMA opened the first specialized pediatric cancer unit just outside the capital city of Damascus. The hospital had 16 inpatient beds, and 8 more outpatients. And they quickly realized this all costs money, and they needed a new way to raise awareness for childhood cancer in Syria. So the foundation began to produce fundraising campaigns on the radio and in the Syrian Opera House with great results. But just as real change began to take shape, the Syrian civil war happened.  

Rima Salem

BASMA pediatric oncology unit which was in a war zone during several years never ceased or stopped to deliver its services. And why BASMA pediatric oncology unit didn't stop all that time? Because of her staff. They traveled around 20 kilometers every day to come to work and welcome the children, and the children still coming to the unit. They were at risk. But they are insisting to come and continue their treatment. And it was very inspiring, really, and it is very motivating for us to keep going and to put all our resources to support as a unit and support the staff.

Suheir Rasul

Mayya Assadd, who helped start all this work with BASMA, explains global sanctions and other economic disparities have made daily survival extremely difficult.

Mayya Assaad

The war impacted BASMA in so many ways, but mostly in fundraising because the priorities of donors shifted to the refugee crisis. So when we used to go to ask for donations, they were telling us, no, now the priorities goes to the refugees because covering one child with cancer equals supporting 50 families of refugees. So the fundraising stopped completely until 2018 when we resumed slowly and with small scale events. Many wealthy people left the country and the sanctions from the west prevented donations from abroad. So even the Syrian people who wanted to help us from abroad, the country couldn't send any money. The dangerous situation prevented people to come to our units or to travel because the roads either were dangerous or closed. Now we have the fuel and energy crises which also prevent travel to Damascus because people don't have fuel to put in their car and there is no heat in the hospitals. Of course, our biggest challenge is that most medications are now unavailable even through the black market. We are facing many, many, many challenges. 

Suheir Rasul

Many of these challenges are similar to the challenges in the low to middle income countries with the extra burden of a conflict zone. Syria suffered with the inability to even get medicine into the country, regardless of the cost or even if it’s available. Mayya and Rima shared these challenges and their experiences with other St. Jude Global Alliance partners and learned they were not alone.

Mayya Assaad

We need to benefit from everyone's expertise and experiences. So it's very important to know that it's not happening only in Syria. Children with cancer are everywhere in the world, not only in Syria, and that we can’t tackle this cause by being one hand or one group. We will have more tools, we’ll be more empowered to help them than just by being Syria by itself or Lebanon by itself or Venezuela by itself or Zambia by itself. It’s better to connect all these countries together so they can help each other. And work for the children with cancer and their families.

Suheir Rasul

And that’s exactly what the St. Jude Global Alliance does. It brings together countries from around the world to advance the St. Jude Global Mission. Both Mayya and Rima understand deeply the power of collaboration and the work that must continue, even in the most extreme conditions like a conflict zone. The families are counting on them to find a way because cancer doesn’t stop, even when there’s a war.

Mayya Assaad

We were the first and only NGO in Syria to support children with cancer and their families. We were working on many levels to improve the cause of childhood cancer, not only in one area, in many areas. We were heading to establish the first multidisciplinary specialized pediatric cancer unit in Syria. We had the land for free from the government. We had the architecture plan for free from one of the best architects in the region. We were really trying to tackle all aspects of childhood cancer to support the children and their families. We were working a lot on educating the community in general from children by working with them in school to engage them and educate them and let them help in fundraising to the mass population, middle class, wealthy people. Many people were supporting us. When I talk about it, it’s like another lifetime. 

Rima Salem

We cannot stop. Yeah, we cannot stop, no. Because the mission has become wider now. And we have to continue because we cannot stop treatment. We cannot go to the half of the road and then say, well, sorry. We don’t have a fund. I’m sure that we are making a difference. We are raising the survival rate. We have survivors. We have champions. We can see them, and we can celebrate with them their successful stories.  

Suheir Rasul

Mayya Assaad is the co-founder of BASMA – the Children with Cancer Support Association in Syria. And Rima Salem is the executive manager. BASMA is fighting to survive the aftermath of a civil war even as its patients and families fight to survive cancer. That dual threat of cancer and conflict is a reality for so many families in Syria and abroad. That is why the St. Jude Global mission must continue to fight for every child everywhere. Because St. Jude won’t stop until no child dies in the dawn of life.

Thank you for listening to our story. We hope you enjoyed learning more about our partners in the St. Jude Global Alliance.

This episode was produced by Geoffrey Redick. It was edited by Grace Korzekwa Evans and Evelyn Skoda. Recorded by Jason Latshaw. And I’m Suheir Rasul.