Episode 52
Dr. Aziza Shad is Humanizing Healthcare
Dr. Aziza Shad, a pediatric oncologist, was nominated for The Uplifters Podcast by Terri Tomoff, whose son was cared for by Dr. Shad during 5 rounds of cancer treatment, beginning at age two. In episode 15, Terri described the family’s journey through their 27-year battle. In this episode, you’ll hear from Dr. Shad how she approaches caregiving as a team effort that involves families, neighbors, and a holistic crew of care providers. Her well-rounded approach also extends to her work leading The Aslan Project which has transformed health outcomes for pediatric cancer patients in Ethiopia. Dr. Shad's story is a testament to the impact one person can make in the lives of many when we tackle big problems in a community-focused way.
Chances are, most of you reading this aren’t pediatric oncologists, but here’s why I hope you’ll listen. No matter where we find passion and purpose, Dr. Shad shows us that:
- Empathy is the core skill needed to turn individuals into aligned teams
- Multidisciplinary support is essential for addressing complex challenges
- Self-care and healthy boundaries are vital to sustaining the work of uplifting others
- Everyone has the power to make a difference and give back to their community, no matter how small their contribution may seem
Click to learn more about Dr. Shad and support The Aslan Project.
After you listen, grab your ticket 🎟️ for Uplifters Live on May 17, where you’ll meet the inspiring Uplifters Ambassadors you’ve heard on our podcast and many other inspiring women! Learn about this one-day in-person gathering for creative growth and collaboration HERE and use code BIRTHDAY FOR 50% off the registration fee this month.
Transcript
Welcome to the Uplifters podcast. I'm your host, Aransas Savvis. And today I am joined by Dr. Aziza Shad. She is theChief of Pediatric Hematology and Oncology at the Children's Hospital at Sinai of Baltimore. She's a professor of pediatrics and oncology at Georgetown University School of Medicine
and the co-founder and medical director of the Azlan project, which supports clinical palliative and support care for children in Ethiopia.
Dr. Shad is known around the world for her research efforts, but she's most well known for her deep commitment to her patients and their families and finding innovative ways to ensure that these patients receive well-rounded care.. She was nominated for our show by one of the first guests Terry Tomoff, whose life was forever changed by the care she received from Dr. Schad through her son's long battle with cancer. In short,
Dr. Chad is the epitome of an uplifter, and I am so glad that she's here with us today. So that bio was a mouthful.
Dr. Aziza Shad (:Yeah, it certainly was. You could have shortened it and just kept it to Aziza Shad, pediatric oncologist.
Aransas Savas (:hahahaha
Aransas Savas (:as I read about your work, I was so moved not just by your work in research and the care that you've provided, but by the way that you've approached this job. Now it would be understandable for you to just show up and treat symptoms and yet I get the sense from your work that you're doing something much bigger and broader. What brought you to this field Dr. Shah?
Dr. Aziza Shad (:It goes back a long time ago when I was a medical student in Karachi, Pakistan, at Dow Medical College, one of the premier institutions of the country, also attached to a general hospital where the poorest of the poor came for care because free care was provided there. I was always interested in taking care of children. So while I was working in pediatrics, our days would begin in the morning.
seeing children with infections, seeing children with malnutrition. Kids would come in with diarrhea and vomiting. I would start at one end of the room, putting IVs into patients. And by the time I got to the end of the room to put the IV in, the first one had already come out. So you started all over again. That was the kind of place that we learned and learned precious lessons. But at the same time, there would always be children with cancer who also came in.
children with leukemia, children with bone tumors, children with brain tumors. Number one, in this hectic environment of trying to take care of hundreds and thousands of children who were almost ready to die from infection or malnutrition or diarrhea, nobody had time to devote to a child with cancer. Besides, treatment of cancer is expensive compared to other illnesses. So they were disregarded.
We were never really even taught how to recognize their symptoms, to understand the pain that children go through, to see that there was even a possibility of cure. two things actually affected me the most and changed the trajectory of my life. One was a notable professor in Pakistan. There were two kinds of people that I saw and who...
mentored us. There were people who were brilliant but not great communicators and probably did not have the empathy that it takes to sit down with the family, spend time with them and explain to them what their child was going through. And then there were the others who were absolutely wonderful, who understood that if you didn't take care of a family well or a child well, you would not be able to succeed in what you were trying to do.
Dr. Aziza Shad (:And I remember being in a room with one of them, and a family came in with a child with a bone tumor, and he looked at the child for barely five minutes, and then said to the family, there is nothing I can do for your child. Think of him as having died in a car accident. This was a young family. This was their first child. How could you have even said something like that? You could have still given the message.
Aransas Savas (:Ugh.
Dr. Aziza Shad (:that there was not much you could do because we were not capable of taking care of children with cancer, but you could have done it in a better manner. From that day onwards, I teach communicating bad news to medical students at Georgetown, to residents at Sinai, to anyone who walks into my clinic, the importance of what it means to establish relationships with families.
the importance of breaking bad news, irrespective of whether it is telling somebody that your child has cancer, or trying to explain to them that in spite of everything that you did to make their child better, the disease keeps coming back, and helping them change their hope from the hope for cure to hope for a comfortable death with dignity. And that takes time, effort, and learning.
Aransas Savas (:what changes when a family understands realistically what's happening?
Dr. Aziza Shad (: Dr. Aziza Shad (:you have to prepare them.. When they bring a child with a bone tumor,, or with leukemia, for example, they've been told by the emergency room or by their pediatrician. Sometimes pediatricians are great, most of them are.
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:and they will explain to them that I am worried that this child has something more going on than just an infection. I'm really concerned that this may be a cancer. And then they refer them to us. But every now and then you will get a family that is unprepared when they walk into the hospital to see the clinic they're being directed to which says pediatric hematology oncology. And they're like, why are we coming to a cancer clinic? My child doesn't have cancer. To take that...
parent who's still in shock to help them understand that we need to do a whole bunch of tests on them to Prove or disprove whether he has a blood disorder or cancer takes a lot of time effort and Understanding and Once those families understand they become your partners the person who referred me to your podcast Terry Tomah
Aransas Savas (:Hmm.
Dr. Aziza Shad (:I couldn't have wished for a better parent to partner with me. We were one team and our only goal was to make her son better. And it was because we spent those initial few days together helping her understand, helping her husband understand. They were a young couple too. They had one older daughter and then this little two-year-old who is now being told that he has leukemia.
But once that understanding came through, I couldn't have had a better partner. nobody knew that Ryan would face all the hurdles that he has faced over the last 20 years. I had no idea that his leukemia would come back three times.
I had no idea that he would have to go for a bone marrow transplant and that years after his bone marrow transplant, he would probably have to deal with what we call second cancers. But every step along the way, his parents were there with me and with their son to make sure that no stone was left unturned.
Aransas Savas (:And what is different when a family is out of sync with their provider?
Dr. Aziza Shad (:When they're out of sync with their provider, the bond of trust that you need to establish with the family right up front never happens. So they question you at every step. Number one, the acceptance that their child has cancer many a times doesn't happen for a long time. The other thing that doesn't happen is the anger never goes away. Why did it happen to me? if that child has a complication, they feel maybe the hospital didn't do enough for him. This chemotherapy that you're giving my child is actually destroying his life. He can't go back to school. His friends can't be with him. And that blame is transferred to the team that's taking care of them.
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:Which is why you need multidisciplinary programs to take care of children and families with cancer. the oncologist may be the treating physician who makes the diagnosis and who establishes the treatment. But if I didn't have my oncology nurses who I tell you at the backbone of taking care of children,
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:If I didn't have my social worker, if I didn't have the chaplain working with me, if I didn't have a child life specialist or an art therapist, or music therapy or pet therapy, I don't know how I would do my job.
It's so beautiful too to think about what's possible when a team of experts become a community. And I assume that what's happening here in this partnership is that the parents are the expert in their child and in their child's lifestyle and needs and how this family lives. And so if they can partner and bring in that expertise with all of these other
is possible that would not be possible otherwise, which is that the solutions are a good fit for the reality.
Dr. Aziza Shad (:You are absolutely right. Because the one thing that sometimes you forget,, when you have a lot of children you're taking care of, or you're in a low or middle income country where you don't have all these support mechanisms, we tend to forget about the parents and we tend to forget about the siblings. That is such an important part of what you're doing. Because in these years of practicing pediatric oncology, how many divorces have I seen?
How many siblings have I seen run away from home? How many siblings have I seen get angry with the child who has cancer because he gets all the attention or she gets all the attention.
I remember this one mother the other sibling's driving test, had been postponed several times. And it was absolutely essential that she be there for the driving test. I remember sitting in the room with the patient and making sure that the mother felt comfortable going and getting that driving test done for her daughter. These are the little things that you must do in pediatric oncology. When you
Dr. Aziza Shad (:make a pledge to that family that you will do the best to provide their child with the best of care that you possibly can. They trust you and you can't let down that trust. So pediatric oncology is not a one-man show. It's not like going to the ENT surgeon who says yeah you've got fluid in your ears I'll put tubes and you're going to be fine. This is a community that takes care of a family and that community
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:extends to where the family lives as well because that community needs to participate in the care of that child too.
Aransas Savas (:, and I imagine that the outcomes are much better for children who are supported by a community than those who are simply treated as an individual.
Dr. Aziza Shad (:Definitely better. In fact, we know that the trauma that affects families who are faced with any life-threatening illness,, is seen years after the event in the form of PTSD, post-traumatic stress syndrome, or PTSD, post-traumatic stress disorder,
I think a lot about the link between stress and creativity when we are experiencing acute stress, we have a very narrow view and it's an evolutionary outcome right, we had to outrun a lion, we needed to just focus on outrunning the lion. But when we have a more expansive view, we're able to see All of the creative solutions that can be found.
g about here, Dr. Aziza Shad (:That's right. I agree with you completely. It's a very gratifying field. it's a strange thing because often people will come and ask you why on earth would you choose pediatric cancer as a specialty? It's so sad. We can't even think about it. It's actually not.
Aransas Savas (:Yeah.
Dr. Aziza Shad (:The reason I left Pakistan was because I saw these children come in who could have been treated. When I read the literature, 60% of children in the United States at that time, in the late 70s and early 80s, were being cured of cancer. But in Pakistan, the survival rate was zero. And I felt like I needed to go out of the country to get a different perspective on the management of childhood cancer.
Aransas Savas (:Wow.
Dr. Aziza Shad (:and come back to Pakistan and provide those resources for the children. So I moved to the United Kingdom. And while I was working there in the hospital doing a pediatric internship, I truly learned the value of human life. When you're in a country where children die left, right and center because they're brought in late.
because the family doesn't have the resources,
Life does not have much value.. But when you move to a country where everything is about making somebody better, one loss or one child is a huge loss, you learn the value of life and living life well. And that's what I learned in the UK.
And it just so happened that I met my husband in London. He was doing his doctorate here at the University of Pittsburgh. So I moved., but my desire to make things better in my own country or other low and middle income countries never really left me. And all I wanted was to gain the knowledge and education. And while I learned all that in the United Kingdom and in the United States, I wanted to give back.
And that's what I've done for the remainder of my life.
Aransas Savas (:is there still that vast inequity between developed nations and lower and middle income nations?
Dr. Aziza Shad (:Today, more than 80% of the children who are diagnosed with a childhood cancer survive in the United States and in other Western countries where resources are available, where diagnostic technology is available,where all these support mechanisms are available to get them better. But take one step into Africa, and for example, Ethiopia.
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:the country where I have focused my efforts for the last 10 years. When we moved there 10 years ago, survival was way below 20%. Cancer was not a priority. Pediatric cancer is still not a priority for many low and middle income countries. Therefore, if you compare survival, where we talk about actually close to 100% survival for certain selected cancers in children, and these children go on to live
normal productive lives, it is less than 20% in many parts of the world even today. In Ethiopia, where close to maybe 12,000 to 15,000 children get diagnosed with pediatric cancer a year, thanks to the efforts of our ASLAND project, and the awareness for pediatric cancer.
that is now available in Ethiopia,. Maybe 3,000 children make it to treatment. That means 12,000 children are still not getting to the centers where they can be treated. They probably die undiagnosed. They probably go to local healthcare workers who may not really recognize how pediatric cancer presents. And those are the children who deserve to get the same care.
I've always believed that it should never be a place of birth that should define the treatment or care you receive for cancer. That color, ethnicity, race, socioeconomic status, educational level, should never matter because a child is a child no matter where he's born or where he lives. And every child should have the same equal right.
to treatment and cure as any other child living in the world.
Aransas Savas (:How do you approach that with the Aslan project?
Dr. Aziza Shad (:So about 15 years ago, Mary Louise Cohen was a well-known lawyer in Washington DC and a philanthropist with a heart of gold approached me and said that she had visited Ethiopia and met a young man over there who was 14 years old by the name of Tamesgun Gamacho. He had-
come from the village with his mother, who had sold all her possessions, which was her cows. Remember, most people in Ethiopia live in the villages. To bring him to the city, to be treated for a bone cancer that was huge at that time. He was seen by Dr. Rick Hodis. Rick Hodis is a well-known American physician who has settled in Ethiopia and helped
Countless, countless children over there. He met him at the Mother Teresa orphanage and brought him to his home and decided that he would take care of him and provide treatment for him. Today, the treatment, if you have a bone tumor in your lower extremity, that means in your leg, you can actually do something called limb sparing surgery.
where you can take the tumor out after some chemotherapy, replace that diseased bone with a cadaveric bone or a prosthesis, and that child has full use of the leg. That's not possible in places like Ethiopia. So this child had an amputation to get rid of the tumor, and then he was getting chemotherapy. Mary-Louise and her family were vacationing in Ethiopia, and they met him.
and decided that they would support him financially to get through his treatment. Unfortunately, he developed disease in the lungs. So that means that the tumor came back. And even today, under the best of circumstances, if you get a relapsed osteosarcoma, it's still very difficult to cure them. So they had two choices, right? He could go back to the village and spend his last few weeks
Dr. Aziza Shad (:or months with his family there but die in pain because pain management or palliative care as we call it is not really well established in low and middle income countries. The other alternative was Mary Louise had been supporting him all this time. She wanted to give him the possibility of a better life and so she adopted him and brought him back to the United States.
And that's how I was contacted to take care of this extraordinary young man who taught us so much. We couldn't cure him because the disease was incurable. But he got two and a half good years of life. And once he passed away, Mary Louise knew that I was working in many other countries through the International Network for Cancer Treatment and Research.
where my mission was, together with my mentor, who's no longer here, but to whom I owe a huge debt of gratitude, Dr. Ian McGrath, who taught me that every child is equal. No matter where you live, you need the same chance of survival. So I used to go with him to different countries in Asia, in Latin America, in Africa, so we could set up these programs for pediatric cancer. She said to me, what can we do in his memory?
And I said, do you know what kind of care we have in Ethiopia? She said, no. So we took a trip to Ethiopia and found that the main hospital there had children with cancer, but they didn't know how to treat them. These children were in beds next to children with life-threatening infections, contagious infections, HIV, no water on the units, sewage coming down the walls.
Dr. Aziza Shad (:but parents had hope in their eyes. They felt like their children would get better. And that was so heartbreaking. in that moment, I knew that this was a mission that if we could accomplish, we could make a difference in the lives of children in Ethiopia. And that was the beginning of the Aslan project. She and I co-founded that project. We had nothing. We started from scratch.
. So we started knocking on the doors of the Ministry of Health, universities, hospitals, physicians.
acquaintances, anyone who would sit and listen to us about why it was important to bring cancer care to Ethiopia. Two years, we didn't get any traction. And then there was a breakthrough. And somehow people started listening. And we established the first treatment program at the Tikor Mbesa Hospital, which is also called the Black Lion Hospital, the largest hospital in Ethiopia. It's in Addis Ababa. And together with a bunch
of parents of children that I had treated at Georgetown before I came to Sinai. This non-profit had enough money that we could go to Ethiopia, renovate a unit which was done by a parent of a child of mine and start the Aslan project. The next person who joined me was Julie Bross. She is a remarkable individual.
who is a lawyer, gave up her profession to become the executive director for Aslan. And much of the success of Aslan today is because of her partnership with me. She had the know-how and the vision, and I had the dream. And we put it all together and we moved. We renovated the first unit, the first ever pediatric oncology unit for Ethiopia.
Dr. Aziza Shad (:And we started training pediatric oncologists and we started training nurses and we started training pharmacists and we started lobbying for medicine and realizing that most of the children came from the villages of Ethiopia, they would have no place to stay. So abandonment of care would be a very big problem. We helped establish TAPCO. TAPCO is now like the Ronald McDonald House, the United States.
Aransas Savas (:Hmm.
Dr. Aziza Shad (:It's a place away from home for families whose children are in treatment. They live there. We teach them trades. So the mothers weave these beautiful straw baskets that get sold. They get money from it so they can support themselves too. Food is provided. We have a teacher there for the children because children shouldn't just be sitting there and not doing their homework. And we have a psychologist on board who helps the psychosocial needs of the family.
We have partnered with other organizations,. we started with one program. Today we have five programs. We have over 20 trained pediatric oncologists in the country. We have so many more in the pipeline. We have 3,000 children in treatment. We have survivors of pediatric cancer in Ethiopia. And we continue to expand. We have a strong relationship with the Ministry of Health. Ethiopia has just been declared.
Aransas Savas (:It's really replicating that community.
Dr. Aziza Shad (:a GICC country. This was an initiative started by the WHO and St. Jude Global and a number of other partners. It's called the Global Initiative for Childhood Cancer where the goal is that by 2030, 60% of the most curable cancers will be cured irrespective of which country you come from. And you have to be selected. That means you have to meet certain criteria to be part of that initiative initially.
and Ethiopia has been accepted for that.
Aransas Savas (:I see why you describe your work as satisfying.
Aransas Savas (:Yes.
Dr. Aziza Shad (:It's very gratifying. It's a field where you lose children. And I have, in all these years of practicing pediatric oncology, which is more than 25 years, I remember every single child I've treated. I'm in touch with a lot of the parents, irrespective of whether their children are grown up and parents in their own right now, or children who lost their battle to cancer.
But those parents have a relationship that transcends every boundary.
Aransas Savas (:It is so clear how you have used the relationship as your focus for healing. I imagine that is healing for you as well, and gives you a sense of nourishment in your work.
I can also imagine that could get overwhelming and exhausting. And one of the things that many uplifters struggle with is keeping healthy boundaries between their purpose and passion and the self-care that's needed to sustain that good work in the world. How have you experienced that?
Dr. Aziza Shad (:When I was a fellow at the NIH, in addition to the training that we were being provided, we also had to meet with the psychiatrist once a week. And we would all laugh as a group we met with him. Of all the people, do we need a psychiatrist? I mean, why do we need a psychiatrist, you know? And now I understand the value. It was a safe place for us.
en I started my fellowship in:We had drugs like AZT and DDI. The initial trials were just beginning with those agents. And we were part of administering those clinical trials. We saw children with hemophilia who had contracted HIV through their blood products. I saw them die of blindness. So when you saw a lot of death,
And at the same time, you're attempting to cure. There was a struggle inside you. And that psychiatry hour that we got without realizing it, we were talking about all that. And that was helping us get better. So very early on I learned that if you don't take care of yourself, you cannot take care of a family or a child either.
and you cannot take care of your own family either because you have to balance both things. I'm a mother, I'm a wife,, I'm a homemaker, and I'm a pediatric oncologist at the same time. So how do I take care of myself? I still have my phone on 24 hours a day and this goes against all norms. Most physicians will tell you and most...
Dr. Aziza Shad (:People will tell you, you cannot have your phone on 24 hours a day. But for me, my family is important. The family I treat is important, right? Why should a mother stay up half the night?
worrying about something. If she could just pick up the phone and ask you that one question so that she could sleep in peace How much does it take away from me? A couple of minutes to answer a telephone call? Nobody has ever abused my phone. Every now and then you'll have a very anxious parent who may call many times, but nobody ever abuses that privilege. But how do I take care of myself? I used to sing a lot. I used to love singing. I try and go back to it, but I think my voice is terrible right now. So I couldn't even sing in the shower. I love taking long walks because that's where I clear my mind and I love to think.
I love gardening. I love beautiful flowers. That's how I spend my time.And more recently, I have had two grandchildren, the most beautiful children in the world for me, and they have changed my life forever. When I spend time with them, that gives me a week of contentment, and I wait till the next Saturday when they can come back and see me. And all the pain and the sadness and the fear and the worry.
Aransas Savas (:Yeah.
Dr. Aziza Shad (:takes a backseat to the love that I have for them and the time I can spend with them.
Aransas Savas (:How beautiful. And you mentioned retirement, do you envision that that's even possible for you?
Dr. Aziza Shad (:Thank you.
Dr. Aziza Shad (:No, no, I cannot retire. My husband and I have very different views on it. My husband is a college professor he looks forward to retirement.
He does a lot of global health work and he wants to focus on that. And then he looks at me and my children look at me and they're like, mom, are you ever going to retire? I don't think so. I don't know what else I would do. I have to keep doing what I do because the mission is so huge. And we have very little time in the world, right? And when you work in pediatric oncology and you see little children get cancer and...
Those who don't make it, you realize how precious every day that's given to you from God, how precious that day is, and how you should utilize as much as you can. If you can't help someone, don't harm anyone. Do what you can to make the life a better place for people.
Aransas Savas (:beautiful philosophy. Oh you are a gift!
Dr. Aziza Shad (:Just someone who's trying to do my little bit to make the world a better place in this era when wars and poverty and natural disasters destroy so many lives. This to me is a form of giving back. Explaining to the world that things can get better.
Aransas Savas (:Mm-hmm.
Dr. Aziza Shad (:but it has to be one person at a time, one family at a time.
Aransas Savas (:Yes.
Aransas Savas (:with a very wise guest. Her name is Dr. Helena Diego Laberte, and she's the CEO of NYC Health and Hospitals in Elmhurst here in New York. And she grew up with a belief imparted by her father that you can't fix the world, but you can fix your neighborhood.
And so she took a very intentional approach to changing health outcomes in her neighborhood. And I hear that in your story. And while Ethiopia is far from your neighborhood, it is a neighborhood and you have looked closely at the problem and worked in concert with the community to find solutions that are a good
o everything, Dr. Aziza Shad (:I learn a lesson from every child and from every family that I come across, but the courage, the spirit,
The desire to make things better that I have seen in the young Ethiopian physicians that I've had the privilege to train is second to none. They have become leaders for their country. I do know that even one day, if I cannot do my work anymore, the Ethiopian cancer work will continue because of the young men and women who feel so strongly.
that their children should live as well.
Aransas Savas (:What a legacy, Dr. Schott. Thank you for giving us this beautiful story of your work and this beautiful example to inspire us all.
Dr. Aziza Shad (:Thank you very much. I just want to let people know that each and every one of us can give something back. You know, often we think, oh, I don't know what I can do for somebody, but there's always something you can do. A kind word, a small gesture, and then if you have the privilege of having a profession of some sort, or having a skill of some sort.
imparting your knowledge to people, uplifting people, giving them hope. Hope is extremely important. Without hope you can't move. You have to have a dream and you have to have hope. And things do happen.
Aransas Savas (:perfectly said.
And here's to lifting each other up as we do it, because we all need that support and that community. For those of you listening, I hope I get to meet you in May. May 17, we are hosting our first ever Uplifters Live event. So many of our guests, so many of our audience members are going to be in one room. And I get sort of dizzy with excitement every time I think about what happens when
Aransas Savas (:contained space and allow all of these amazing women to connect with one another to inspire each other. I don't know. I mean I have ideas about what might happen but the truth is I'm gonna be just as surprised as everyone else. So I hope you'll join us Dr. Shad for all of those listening out there. I hope you will join us as well.
Dr. Aziza Shad (:Absolutely.
Thank you. And thank you for having me. It's been a pleasure talking to you.
