Hope Nightingale survived osteosarcoma | neoadjuvant chemotherapy | cisplatin | doxorubicin

DESCRIPTION

At age four, Hope Nightingale complained of severe pain in her legs.  At first, her parents thought she was just being a hypochondriac.  That changed when she fell off her scooter and broke the distal femur in her left leg.  The following year, 2011, this led to a diagnosis of Stage II osteosarcoma, a type of bone cancer.  After a regimen of neoadjuvant chemotherapy featuring cisplatin and doxorubicin, Hope underwent a surgical procedure, a vascularized fibula transplant.  Her left femur was removed, and her right fibula was inserted in its place.  Confined to a wheelchair and then crutches at such a young age, Hope underwent extensive physiotherapy rehabilitation so that she could relearn how to walk despite her left leg being 2cm shorter than her right leg.  Hope has survived and is training to compete in a half marathon!

Hope says as a four-year-old she was often accused of overreacting to just about everything.  So, when she complained of pain in her legs, her parents did not take the complaints seriously.  That changed when she fell off her scooter, couldn’t get up and her parents discovered she had broken her left leg.  She had her distal femur x-rayed.  That led to a biopsy, and, at age five, a diagnosis of Stage II osteosarcoma, a form of bone cancer.

Treatment was to begin with neoadjuvant chemotherapy aimed at shrinking the tumor.  Hope said unlike many people, outside of hair loss, she suffered few nasty side effects.

Next was a vascularized fibula transplant.  The cancerous left distal femur was removed and was replaced by her right fibula.  A result of this surgery was the loss of both her quadricep muscles.

Hope returned to school, but in a wheelchair with casts on both legs.  This did not go unnoticed by her classmates, most of whom wanted to know what happened.  Hope says her diagnosis was not a blessing, but she felt blessed that her diagnosis took place at such a young age, when she was unable to process it in full.  She said physically, it was tough being in a wheelchair, but emotionally it was tougher because at recess, she wanted to join her friends, running around and playing.  Hope said it was amazing that sometimes her chums would halt their activities and gather around her to include her in their fun. 

Hope eventually got out of the wheelchair and was on crutches, but that, too, was frustrating because she wanted to be ambulatory, like her friends.

At this time, Hope Nightingale had to relearn how to walk, which involved extensive physiotherapy rehabilitation.  As if that were not tough enough, the surgery left her left leg 2cm shorter than her right leg.  She went to a specialist who gave her a wedge to put in her left shoe, removing the discrepancy in the length of her legs.

These days, Hope leads an active lifestyle.  She enjoys going to the beach near her hometown of Cape Town and to the mountains and vineyards outside of town.  Not only is she walking, but Hope is training to run a half marathon.

Additional Resources:

Support Group:

Cancer Association of South Africa  https://www.cansa.org.za

TRANSCRIPT

Hope Nightingale

Bruce Morton: Welcome.  This is the Cancer Interviews podcast, and I am your host, prostate cancer survivor Bruce Morton.  Not only was our guest diagnosed with osteosarcoma, a type of bone cancer, but she was diagnosed at age five.  For Hope Nightingale of Cape Town, South Africa, it took neoadjuvant chemotherapy and physiotherapy rehabilitation, but Hope has survived and we are thrilled that she is here to tell her story.  Hope, welcome to Cancer Interviews.

Hope Nightingale: Hi, Bruce, and thank you for that warm introduction.  I am very excited to be here and tell you a little bit about my story.

BM: Before we get into a guest’s cancer journey, we like to learn more about them as people, so if you would, Hope, tell us a bit about where you are from and what you like to do for fun.

HN: As you mentioned, I am from Cape Town, South Africa.  I live in a part of town where the penguins are, a major tourist attraction.  I am going to university as an occupational therapy student.  Sometimes it is hard to balance the fun things with a busy schedule.  I love being outdoors, love being able to go to the beach, that kind of thing, spending time with friends, all so very special.

BM: As mentioned, you were diagnosed at a very early age.  How much do you remember about what led to your diagnosis?

HN: I just want to preface this started in April 2011, just before my fifth birthday.  I was four at the time, and we were living in a different part of South Africa, in Durbin.  I was quite a dramatic four-year-old, I was known to overreact and be quite a hypochondriac.  I started complaining about quite persistent leg pain, which my parents kind of dismissed because they thought it was natural for the age I was at, maybe growing pains or that kind of thing.  In any event, I was on my scooter, ended up falling off and breaking my leg completely and couldn’t get up, couldn’t walk.  My parents ended up taking me to the emergency room and I had x-rays done from there, which confirmed a pathological fracture in my left distal femur.  Radiologists were allowed to provide additional details of my x-ray, so they referred me to an oncologist.  At that point, my parents knew there was something seriously wrong, something more dangerous than a break in my femur.  We ended up seeing an oncologist in Durbin.  He basically took a look at my scans, then took a step back and said this wasn’t a case he was prepared to deal with because it was a bit larger than what he had anticipated.  He didn’t want to do a biopsy because he didn’t want to do any more harm, so he referred us to a specialist in Cape Town, which is where I live now.  He performed a biopsy, as they weren’t sure it was Ewing’s sarcoma or osteosarcoma, but the biopsy confirmed it was osteo.

BM: By the way, we hope you will find time to like and subscribe to our channel, and if you click on the bell icon, you will be notified whenever we post an interview.  We also want to remind you that we are not distributors of medical advice.  If you seek medical advice, please contact a licensed health care professional.

BM: We have had a few guests on this show who were diagnosed when they were very young, which they say in a way was a blessing because at that age they were not able to fully process what was going on.  Was that the case for you?

HN: Yes, absolutely.  I have always said that I think no one who is diagnosed with cancer is lucky, but in my scenario of being so young, my innocence and naivety sheltered me the actual harsh reality of what was going on.  No four-year-old is going to complain about cancer actually means.  I think in that sense, it enabled me to deal with the things a little more positively than if I was a little bit older.

BM: Next up for you was treatment.  If you would, describe your treatment.

HN: Now that we had the diagnosis, we started weighing the options as to what to do next.  Like you said, I had the neoadjuvant chemotherapy, which is the chemo that is administered before your procedure, basically to minimize the spread of the tumor and to shrink it.  That included doxorubicin and cisplatin.  Thankfully we were able to catch the cancer quite early.  I was Stage II.  This included a vascularized fibula transplant, meaning that my orthodepic surgeon would completely discard my left femur, take it out completely and take my right fibula and put in place of that femur instead.  So, now, I don’t have a right fibula, but my right fibula has grown into my left femur, essentially, and that in process I ended up losing two quad muscles, which is why I needed to undergo such extensive physiotherapy rehabilitation.  Then after that point, I had major surgery, and then only a few more rounds of chemotherapy just to kill off any other potentially harmful cells, which proved to be successful, and I am super grateful.

BM: There is no such thing as a pleasant chemotherapy experience, but for each patient, it differs from patient to patient.  For you, what was the toughest part?

HN: Obviously, I am very grateful that I didn’t have any adverse reactions to chemotherapy.  I was never sick, never nauseous.  I was on anti-nausea meds, but I never had a terrible experience, but I think being a young girl, I think obviously the losing my hair was quite a deal, not in the sense that it was too heartbreaking for me, but I have this photo of me sitting in front of a mirror with a brush, brushing my hair when I didn’t have any. Thinking about it now, I think that was one of the biggest things about having to adjust to chemo, but thankfully, no adverse reactions. 

BM: Now at that time, could you return to school?

HN: As I mentioned, my treatment was split between Durbin and Cape Town.  I was having chemo done in Durbin and my surgery was done in Cape Town, so when I was Cape Town I obviously was not at school, and I think only after my last rounds of neoadjuvant chemotherapy, that’s when I could return back to preschool, but it was very kind of on and off.  It depended on the day and that kind of thing.  Thankfully that did not hinder any of my schooling career, which I am also grateful for.

BM: However, from a social standpoint, how were you treated by other kids?

HN: Children are very inquisitive and I think when they see something that is not the norm, then they start to question why things are the way they are.  I was blessed to have quite a few friends visit me in hospital and stuck by my side when they could.  Even then, four-year-old children don’t fully understand what’s going on at that stage.  So, I think the biggest things were when I had to be in a wheelchair because both of my legs were in casts and then when I was on crutches.  Kids in preschool are wondering I was on crutches and why I cannot be running around and playing with them, like they could.  So, I think just the questions became overwhelming to the point where I needed to find ways to make light of the situation.  I mean, I had kids coming up to me, left, right and center, asking me what happened to my leg and why do you have so many scars, that kind of thing; and eventually, I had such a light-hearted family and my uncle, he told me to start telling people I had had a shark attack and that I didn’t want to talk about my injuries.  That brought quite a lot of joy.

BM: You talked about what this was like from the point of view of your classmates; but what was it like for you to see your friends running around at recess, when you can’t?

HN: I think it was frustrating, for sure, from what I can remember.  I was just so eager to get off my crutches and run around as they did.  I remember when my surgery was over and I was still in rehab, but I was well enough to know what had happened.  I was very eager to start walking immediately.  I hated being in a wheelchair.  I hated not being able to do things for myself.  That was definitely hard to watch other kids do things that I couldn’t, but I found ways to move around that by getting off the crutches and scooting along the floor as much as I could; but like I said, my friends were very supportive, as much as they could.  They would include me in certain activities, even if that meant that stopping their playing to come and join me.

BM: What a great bunch of kids.  Now, I want to ask you about something we referenced at the top and that was physiotherapy rehabilitation because I would imagine that would have to be next in terms of your journey.  As you said, like anyone else in your position, you would want to resume walking as soon as possible.  Describe the rehab process.

HN: It was quite an extensive one.  Obviously, the surgery that I had had was quite hectic in the sense that I lost two quadricep muscles.  That kind of changed the dynamic of how functionality and mobility was going to go, moving forward.  When they took my femur out, they also had to staple a growth plate in my leg, so even now, to this day I still have a 2cm discrepancy in my right to left leg, meaning that my right leg is essentially longer than my left leg.  I think the fact that I was so young, first of all, was a blessing, not only to shield me from the harsh reality, but also in the sense that my body was still growing, so I was able to adapt while my body was growing to aid with the outcome of the surgery.  As you mentioned, I went to a physiotherapist quite often just to build more strength and more function into my left leg because now I had to relearn how to walk, weight-bear, that kind of thing and run.  It was a lengthy process; it didn’t happen all at once.  It occurred over the next couple of years. Eventually, I was able to achieve quite a positive clinical outcome in that sense so that I am able to do the things other people are able to do.

BM: Hope, I am no doctor, but I would think that if one leg is longer than the other, any time you take a step, that would have implications for the rest of your body.

HN: I actually ended up seeing a specialist who prescribed a wedge that went in the shoe of my left foot so that it accounted for the height difference.  I think the most uncomfortable thing was my hip balance.  Obviously I had to learn to weight-bear so much more on my right leg that it can be a little uncomfortable sometimes with some sorts of movements, especially with running.  There is almost a bit of a limp.  I ended up exploring options to fix that, but unfortunately there was no surgical way to go about that.  For now, I have just that wedge in my shoe, which helps a great deal. 

BM: So, these days what is walking and running like?

HN: I don’t feel it as much, but if you had to see me walking down a hall, you would see that my left leg has a slight bow and a limp, so when I walk, I have a bit of a tilt to the side; but I don’t feel it so much because I have grown so accustomed to it.  Only when I run and I am attempting for my first half marathon at the end of this year, which is 2026, it has been interesting to navigate through training and navigate through these uncomfortable situations.  It is uncomfortable, but I just have to teach myself.  I just have to be more conscious about how to run because I become accustomed to bearing weight on my right leg all the time.  So, I think through stretching and habits using my left leg more will definitely help a lot.

BM: Hope, we had talked about the support you had received from family and friends, but support has come externally from an organization, the Cancer Association of South Africa, or, CANSA.  Can you tell us what CANSA has done for you and what it can do for others?

HN: CANSA is actually the reason that I am here now, talking with you.  I am extremely grateful to Ms. Lucy Balona and her team for making this possible.  They actually reached out to me earlier this year, 2026, after World Cancer Day when they offered to publish part of my story.  They asked to share my story and basically what they do, they are a nonprofit organization that seeks to support anyone affected by cancer.  They advocate for public awareness research, that kind of thing.  I have not been extensively involved with them, but through eagerness for me to share my story, it is really incredible and I am super grateful to them for what they have done.

BM: Hope, we are close the way we always do by posing this question.  If you encountered an individual just diagnosed with osteosarcoma, this person might have lots of questions for you.  You might have lots of answers, but if there is one point you make to this person that you really hope they won’t forget, what would that point be?

HN: I am very aware that everyone experiences cancer differently.  Not everyone can have as positive of an outlook as I may have gotten, but I think who learns they have to go through cancer is an absolute hero, in my opinion.  They are the strongest of people, so if someone came to me and ask for advice, I would honestly tell them to first of all, seek support from the people around them.  There are so many people that have so much love and support to give.  Even in my own experience, people don’t understand what you are going through, but it is always good to have people in your corner because they always will be, but also, you are so strong, incredibly strong, and that your body can do incredible things and they must just fight as hard as they can, and to seek their people and to never do it alone. 

BM: Excellent, sage advice.  Hope Nightingale, thanks so much for a story that is informative and inspirational.  We really appreciate your being with us.  Thanks for being with us on Cancer Interviews.

HN: Thank you, Bruce.  It has been so incredible.

BM: And we want to remind you as we always do when we wrap up, that if or a loved one are on a cancer journey, you are not alone.  There are individuals like Hope Nightingale and there are organizations like CANSA, that are there to help.  So, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

Cancer Association of South Africa  https://www.cansa.org.za

SHOW NOTES

TITLE:  Hope Nightingale, Osteosarcoma Survivor – Cape Town, South Africa

At age four, Hope Nightingale complained of severe pain in her legs.  At first, her parents thought she was just being a hypochondriac.  That changed when she fell off her scooter and broke the distal femur in her left leg.  The following year, 2011, this led to a diagnosis of Stage II osteosarcoma, a type of bone cancer.  After a regimen of neoadjuvant chemotherapy featuring cisplatin and doxorubicin, Hope underwent a surgical procedure, a vascularized fibula transplant.  Her left femur was removed, and her right fibula was inserted in its place.  Confined to a wheelchair and then crutches at such a young age, Hope underwent extensive physiotherapy rehabilitation so that she could relearn how to walk despite her left leg being 2cm shorter than her right leg.  Hope has survived and is training to compete in a half marathon!

Additional Resources:

Cancer Association of South Africa: https://www.cansa.org.za

Time Stamps:

01:53 Hope recalls what led to her diagnosis at age five.

04:56 Said her diagnosis was not a blessing, but she was blessed that it came at a stage in her life when she could not fully process what was going on.

05:43 Describes her treatment.

07:49 Is asked to name the toughest part of her chemotherapy experience.

08:41 Recalls returning to school when confined to a wheelchair.

09:27 Hope is asked how she was treated by her classmates.

11:05 Said it was difficult not being able to run around and play with her friends.

12:28 Describes the lengthy physiotherapy rehabilitation process.

14:16 How she deals with one leg being 2cm longer than the other.

15:25 Hope is asked what walking and running is like these days.

KEYWORDS (tags):

bone cancer

osteosarcoma

cisplatin

neoadjuvant chemotherapy

doxorubicin

vascularized fibula transplant

distal femur

physiotherapy rehabilitation

growth plate

ewing’s sarcoma