The pandemic, a deadly cancer and my 14-year-old daughter

The pandemic, a deadly cancer and my 14-year-old daughter

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Strangely, I can’t clearly picture the face of the surgeon who changed my family’s life. I’m not sure I’d recognize him if I bumped into him in the street. And yet I can vividly recall his face turning pale the instant he looked at the X-rays of my 14-year-old daughter’s shoulder.

Her chronic pain had first been diagnosed as a likely inflammation, and then possibly some problem in the muscle that could be fixed with a few physiotherapy sessions. But on that day, October 31, 2019, we found out that it was Ewing’s Sarcoma, a rare and extremely aggressive form of bone cancer. The cancer had started deep in the sponge bone of her humerus and then broke out through the bone surface, causing excruciating pain, then metastasizing to several other parts of her body.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Rebecca takes an early evening nap with her soft toy dog Jasper by her side after yet another exhausting radiotherapy session.

Rebecca, or Becs, as we call her, was suddenly fighting for her life.

We live on Malta, a small island in the Mediterranean Sea between Italy and Africa. Becs’ care was entrusted to the staff in the pediatric and adolescent ward, aptly named Rainbow Ward, at the Sir Anthony Mamo Oncology Centre, an annex of the island’s main national hospital, Mater Dei.

To begin with, we were told she would need nine cycles of chemotherapy to start with, followed by surgery to replace the bone with a prosthetic at the Nuffield Orthopaedic Centre in Oxford, England.

But less than six months later, Becs’ battle would be made even worse by a global pandemic that brought paranoia over the possibility of infecting her compromised immune system, anxiety over medical supply chains and, worst of all, separation at a time when togetherness was what we needed most.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Rebecca and her father Darrin Zammit Lupi listen to an online school meeting for parents and students at Rainbow Ward.

During her rounds of treatment, Becs was hospitalized so she could be closely monitored. My wife, Marisa, or Mars, stayed in hospital with her. I would visit her every day as I continued my work as a photographer for Reuters.

But that changed on March 15, with the arrival of the novel coronavirus in Malta. It was a Sunday, and I was covering the arrival of rescued migrants, as I’ve had to do so often these past 15 years. Marisa called me in a panic, saying they were going to impose a lockdown on the ward.

Starting the following day, who was in would stay in, and who was out would stay out, in a bid to try to protect the young and very vulnerable patients. We needed to quickly reorganize our lives; we had no idea how long this would last for. I dropped my gear at home and rushed to hospital to spend what would turn out to be my last evening in hospital with Becs in a very long time.

We did the things we often did together – watched several episodes of “Friends,” talked, laughed, played board and card games. Leaving her that night felt like the hardest thing I’d ever had to do. I had no idea when I would next see her in person. Naturally, over the following weeks, Becs and I saw each other daily over FaceTime and Messenger, but it just wasn’t the same.

Still, I knew it was for her own safety. With her immune system virtually nonexistent, the coronavirus would be fatal for her. I’m glad the hospital didn’t take any chances, no matter how hard it might have been on us. The alternative was unthinkable.

. Kappara, Malta. Reuters/Darrin Zammit Lupi
A painting and photograph of Rebecca as a young child are seen next to a bottle of hand sanitiser at her home.

On the home front, paranoia set in. The obsessive measures needed every time I went out, every time I stepped into a shop, got back to the car, returned home, removed shoes and disinfected their soles, unpacked the groceries, wiped everything down with sanitizer, all the effort that went into cleaning and disinfecting absolutely everything that came into the house sometimes felt overwhelming. (I drew the line when someone suggested I should sanitize the dog’s paws when I brought him home from his walks, always taken late at night to avoid meeting other people in the streets.)

Then there was the overpowering anxiety – am I doing this right? Did I miss a spot, did I just bring the virus into the house, did I just get myself infected? Will the anxiety pandemic end up being worse than the virus pandemic itself? No wonder I was soon exhausted in every possible way.

I kept a diary during this awful time. I started it partly because I had decided to document Becs’ battle, but it was also an attempt to preserve something of my sanity. Also, I didn't know how bad COVID was going to get here; I didn't know if it was going to wipe us all out. Setting things down in a document that was accessible via the Cloud to a few select people was also a way of ensuring that if something happened to me, the story wouldn't be lost altogether.

MARCH 31, 2020: I wore a mask for the first time when going out yesterday. I went to a mini-market to buy some cleaning materials, the aisles were narrow, there were quite a few people, and my glasses were steaming up because of the N95 mask (a pharmacist friend managed to procure three for me a few days ago, she said they should last for about 12 hours of usage each). I haven’t felt that sense of claustrophobia in years, it was crazy. It took a lot of willpower not to rip it off my face there and then.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Darrin helps transfer Rebecca from her room to have an MRI scan.

The globally worsening COVID situation meant Rebecca’s treatment plans had to be changed. Her doctors decided to carry on with chemotherapy beyond the original nine cycles envisaged, and to include the cycles she would have undergone after major surgery in Oxford.

In addition to the impossibility of travel to England, we had to deal with concerns over the availability of medical supplies.

APRIL 3, 2020: Becs had her MRI on her shoulder. Though it shows improvement, active cancer cells remain. She’ll be having radiotherapy now in addition to continuing with chemo. Her PET scan was delayed because the dye needed was not available. The supply chain in Italy was running into problems. I got in touch with people I know within the system, and they quickly looked into it, and within a day, an old Kili buddy who’s a radiologist got in touch with me and told me supplies would be back within a couple of days. There had been some problem with ground handling staff at Fiumicino in Rome, but it’s now sorted. As I write this, Becs is probably about to be taken to the Imaging Dept for the scan.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Marisa Ford says goodbye to Rebecca as she heads home for a fortnight’s rest.

Solitary confinement in hospital was hard. For several weeks, Becs and Marisa were essentially confined to their room. No more walking around the ward and stopping at the nurses’ station for a chat, or stepping out onto the terrace for some fresh air. The games rooms were closed, and the kitchen that had been available for families’ use could only be used according to a roster.

As cabin fever began to set in, the authorities relented on some measures and started allowing the use of the ward’s terrace again, with people taking it in turns and for a few minutes only.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Rebecca and her mother look at Darrin through a terrace fence.

APRIL 6, 2020: I saw Becs today! And Mars managed to figure out a way how we could see each other. The terrace overlooks the doctors’ carpark, which is pretty quiet in the afternoons. So, as the weather was nice and Becs was allowed out onto the terrace, we went for it.

First time we saw each other in person in over three weeks.

I could only see them through the gaps in the fence, but it was quite something.

An emotional time for all.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Rebecca bids farewell to her mother. "When my dad came to stay with me in hospital, it was one of the best days throughout the lockdown in hospital. I was so excited to watch many movies and the TV show Friends, which we had started before lockdown," said Rebecca.

After almost two months, the quarantine measures at the hospital were relaxed further, and parents were allowed to switch places, subject to negative COVID tests and maintaining strict quarantine whilst at home. I ended up doing two stints in hospital of over three weeks each over the following two months.

APRIL 27, 2020. It has been truly amazing to finally be reunited with her. There’s so much fun stuff she wants us to do together, I don’t see how we can fit it all in. But we’re trying!

MAY 11, 2020: We’ve never spent such a long stretch of time together, just she and I. We’ve watched a lot of ‘Friends’ episodes – in fact, we finished the last season yesterday. We started watching it together when she first fell ill, and we’ve shared so many laughs since then. It’s really helped pull us through this ordeal.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Nurse Pauline Falzon prepares an intravenous antibiotics infusion for Rebecca as she takes part in an online computer studies lesson.

By this time, Becs was also undergoing a gruelling daily regime of radiotherapy, the side effects of which weren’t pretty. Apart from it playing havoc with her blood counts, the resulting skin burns were extremely painful. In an effort to cheer her up, the nurses threw a small party for her at the end of her radiotherapy treatment. By then she had become fascinated by the whole idea of medical imaging and radiotherapy, even looking into it as a possible career choice.

Becs even managed to find a positive from the lockdown: “Once lockdown started, any bit of fun I had was taken away. However, something good did happen,” she told me when I was writing this story. “Online school was introduced, and I could finally, after five months of not being in school, join some lessons and communicate with my teachers. This is what I had been asking for for months, but my request for lessons to be streamed to me was declined. Once they weren't given a choice, it just showed how this was possible, so I started fighting for online school to continue post-COVID-19 for students who cannot attend school/university for medical reasons, for people like me. I am so glad that even in my toughest year, my voice was heard.”

MAY 16, 2020: I’m home, after three weeks in lockdown at hospital with Becs. Home seems alien, unfamiliar. Or maybe I’m just utterly physically and mentally exhausted. Things might seem more normal tomorrow.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Marisa was interviewed on national television about her experiences of being isolated in hospital for several weeks.

During all of this, Marisa would keep our friends and family updated on Becs’ progress with Facebook posts. One in particular seemed to sum our situation well, so I included it in my diary.

MAY 26, 2020: “Here at Rainbow Ward, it's not just about our own story. It is about many families sharing their story. I have spent enough time here to be a part of all of it. … Today, we are in solidarity with a very young patient who was here with us but is in England at the moment. She is in critical care as i write...We are in touch with her mum who needs support and prayers at this time. so please think of her”

JULY 8 2020: The patient Mars wrote about, quoted above, didn’t make it. She was only one year old.

. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi
Rebecca after her final radiotherapy treatment session. "Taking off that radiotherapy mask, knowing I’d probably never have to wear it again, felt amazing! I had never had such a smile, or any smile really, on my face after a radiotherapy session."

Becs was finally discharged from hospital in mid-July, once she had completed her 14th and final chemotherapy cycle, over four months after finding herself locked in there. She will continue attending as a day patient on a regular basis for the foreseeable future.

This is far from over. We’re still waiting to see if they will take her to Oxford for the surgery the doctors here think she needs. So many more tests are in the pipeline. But there have been good moments too: Becs recently turned 15, and seeing her old friends for her birthday meant everything to her.

. Mellieha, Malta. Reuters/Darrin Zammit Lupi
"I absolutely loved seeing the comet and Milky Way as I’ve always found anything to do with astronomy and the night sky very fascinating. I had never seen such a beautiful night sky and it felt nice to be outside again!" said Rebecca.

For Becs’ first outing a few days after she got out of hospital, I took her late at night to the northwest corner of the island, a relatively dark area, so she could try to catch a glimpse of the Comet Neowise. Although the comet was hard to view with the naked eye, Becs managed to see it with the help of my camera and long lens.

And then we spotted a shooting star. We made a wish – no prizes for guessing what that was.

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Slideshow

Rebecca hides under her blankets as she video chats with her mother who is back at home.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca hides under her blankets as she video chats with her mother who is back at home.

Rebecca walks back to her bed after a bathroom visit.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca walks back to her bed after a bathroom visit.

Physiotherapist Michelle Firman visits Rebecca for the first time since the nation-wide lockdown began. This was a one-off session to verify some matters at the request of the medical team at the Oxford Bone and Soft Tissue Tumour Service at the Nuffield Orthopaedic Centre in the UK, which is overseeing her treatment.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Physiotherapist Michelle Firman visits Rebecca for the first time since the nation-wide lockdown began. This was a one-off session to verify some matters at the request of the medical team at the Oxford Bone and Soft Tissue Tumour Service at the Nuffield Orthopaedic Centre in the UK, which is overseeing her treatment.

Nurse Naomi Balzan explains the protocol for the next chemotherapy cycle to Rebecca. Balzan said: "Explaining to children and adolescents may be challenging at times because one must adapt according to different age groups and personalities. Teenagers like Rebecca can understand a complex explanation of both the diagnosis and treatment. Eventually the patients will learn treatment names by heart before their parents do.”
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Nurse Naomi Balzan explains the protocol for the next chemotherapy cycle to Rebecca. Balzan said: "Explaining to children and adolescents may be challenging at times because one must adapt according to different age groups and personalities. Teenagers like Rebecca can understand a complex explanation of both the diagnosis and treatment. Eventually the patients will learn treatment names by heart before their parents do.”

Doctor Silvana Zammit takes a swab sample after Rebecca displayed some symptoms of COVID-19. The test result was negative.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Doctor Silvana Zammit takes a swab sample after Rebecca displayed some symptoms of COVID-19. The test result was negative.

Rebecca receives a 'Get Well' card and a piece of a friend's birthday cake.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca receives a 'Get Well' card and a piece of a friend's birthday cake.

Physiotherapist Michelle Firman visits Rebecca.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Physiotherapist Michelle Firman visits Rebecca.

Radiographer Maria Elena Grech explains how radiotherapy works to Rebecca. Rebecca is now considering radiotherapy as a possible career choice. Grech said: "It was fantastic to see that Becs was so keen on learning the processes that led to her daily radiotherapy treatment. She would ask us many questions about our role as radiographers and what she would need to study to enter the course at university. The fact that we were able to inspire Becs even during such difficult times, made us really proud of our profession."
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Radiographer Maria Elena Grech explains how radiotherapy works to Rebecca. Rebecca is now considering radiotherapy as a possible career choice. Grech said: "It was fantastic to see that Becs was so keen on learning the processes that led to her daily radiotherapy treatment. She would ask us many questions about our role as radiographers and what she would need to study to enter the course at university. The fact that we were able to inspire Becs even during such difficult times, made us really proud of our profession."

Rebecca performs some basic dance exercises for the first time in months. She was a very keen ballet, hip-hop and contemporary dancer before getting ill with cancer. "There are no words to describe how much I miss dancing. Dancing was like my way of communicating without words. I loved dancing with my friends and hope to do that again in the future.”
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca performs some basic dance exercises for the first time in months. She was a very keen ballet, hip-hop and contemporary dancer before getting ill with cancer. "There are no words to describe how much I miss dancing. Dancing was like my way of communicating without words. I loved dancing with my friends and hope to do that again in the future.”

Rebecca wears a thermoplastic mask for her radiotherapy treatment.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca wears a thermoplastic mask for her radiotherapy treatment.

Hospital chaplain Father Mario Attard of the Capuchin Friars holding a relic of Saint Maria Faustina Kowalska of the Blessed Sacrament, blesses Rebecca who is asleep.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Hospital chaplain Father Mario Attard of the Capuchin Friars holding a relic of Saint Maria Faustina Kowalska of the Blessed Sacrament, blesses Rebecca who is asleep.

Darrin hugs Rebecca after her final radiotherapy treatment session.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Darrin hugs Rebecca after her final radiotherapy treatment session.

Rebecca receives a gift from radiographers Maria Elena Grech and Angelina Dimitrova after her final radiotherapy treatment session. "It’s always bittersweet to have a paediatric patient. Their presence brings joy, but the reason behind their attendance harbours a lot of sorrow. Although we recognise that each patient is on a tremorous life-altering journey, when it comes to children, it always hits a softer spot, which is why we enjoy celebrating the ends of their treatments that little bit louder and commemorating it with a small gift personal to every child,” Dimitrova said.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca receives a gift from radiographers Maria Elena Grech and Angelina Dimitrova after her final radiotherapy treatment session. "It’s always bittersweet to have a paediatric patient. Their presence brings joy, but the reason behind their attendance harbours a lot of sorrow. Although we recognise that each patient is on a tremorous life-altering journey, when it comes to children, it always hits a softer spot, which is why we enjoy celebrating the ends of their treatments that little bit louder and commemorating it with a small gift personal to every child,” Dimitrova said.

"Fighting cancer was already hard enough. Just to make things worse, we started getting COVID-19 in Malta. That week, I was just going into hospital to have chemo and little did we know .... I wasn't getting out when I expected.  They started lockdown.  I couldn't even say bye to my dog and cats, and I couldn't even see my dad anymore. When they told us we couldn't even leave the room, or not even have the door open at first, my mum freaked out and I was sad but dealt with it somehow. One thing that was really different was the nurses.  Before, I was able to go to the adolescent room, which they had just opened, and play Minecraft on the PlayStation with nurse Will Grima. Once lockdown started, any bit of fun I had was taken away."
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

"Fighting cancer was already hard enough. Just to make things worse, we started getting COVID-19 in Malta. That week, I was just going into hospital to have chemo and little did we know .... I wasn't getting out when I expected. They started lockdown. I couldn't even say bye to my dog and cats, and I couldn't even see my dad anymore. When they told us we couldn't even leave the room, or not even have the door open at first, my mum freaked out and I was sad but dealt with it somehow. One thing that was really different was the nurses. Before, I was able to go to the adolescent room, which they had just opened, and play Minecraft on the PlayStation with nurse Will Grima. Once lockdown started, any bit of fun I had was taken away."

Rebecca watches her uncle actor Colin Zammit Lupi sing during a live-streamed fund-raising event on Youtube for Maltese performing artists.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca watches her uncle actor Colin Zammit Lupi sing during a live-streamed fund-raising event on Youtube for Maltese performing artists.

Rebecca researches options for higher education on her laptop.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca researches options for higher education on her laptop.

Using the light from an LED night lamp, nurse Will Grima takes blood samples from Rebecca, in her room at Rainbow Ward. "When I first met Rebecca, she was reserved and shy, as is usually the case with most teenagers who have recently been diagnosed with cancer. After a few weeks of acting like a clown and having unloaded multiple syringes of water on her and her parents, she began to open up and the real Rebecca started to shine through. She would start to smile, laugh, and joke around. She would even show me some of her art projects and show me videos of her dance acts. When she started to enjoy playing Minecraft on the PS4 in the ward, I'd often join in when I was on break. It was always a welcome respite from the administration of treatment or ward procedures. This all helped to build rapport between us. Unfortunately, those times weren't meant to last. When COVID-19 arrived in Malta and the number of active cases were on the rise, we began to fear for the safety of our patients. This was a novel virus, with no available vaccine, and we had no idea what the effects would be on immunocompromised patients such as Rebecca. New infection prevention measures were implemented. We had to don protective gear and maintain minimal contact with patients and other staff. Patients weren't allowed out of their rooms to reduce exposure, and only one parent could stay with their child. A major part of our way of nursing was stripped from us and it was a blow to everyone's spirits; patient, parent and staff," said Grima.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Using the light from an LED night lamp, nurse Will Grima takes blood samples from Rebecca, in her room at Rainbow Ward. "When I first met Rebecca, she was reserved and shy, as is usually the case with most teenagers who have recently been diagnosed with cancer. After a few weeks of acting like a clown and having unloaded multiple syringes of water on her and her parents, she began to open up and the real Rebecca started to shine through. She would start to smile, laugh, and joke around. She would even show me some of her art projects and show me videos of her dance acts. When she started to enjoy playing Minecraft on the PS4 in the ward, I'd often join in when I was on break. It was always a welcome respite from the administration of treatment or ward procedures. This all helped to build rapport between us. Unfortunately, those times weren't meant to last. When COVID-19 arrived in Malta and the number of active cases were on the rise, we began to fear for the safety of our patients. This was a novel virus, with no available vaccine, and we had no idea what the effects would be on immunocompromised patients such as Rebecca. New infection prevention measures were implemented. We had to don protective gear and maintain minimal contact with patients and other staff. Patients weren't allowed out of their rooms to reduce exposure, and only one parent could stay with their child. A major part of our way of nursing was stripped from us and it was a blow to everyone's spirits; patient, parent and staff," said Grima.

Rebecca reads a book on a terrace.
. Tal-Qroqq, Malta. Reuters/Marisa Ford

Rebecca reads a book on a terrace.

Rebecca takes a selfie with Darrin as she starts her return journey back home after almost five months in hospital.
. Tal-Qroqq, Malta. Reuters/Darrin Zammit Lupi

Rebecca takes a selfie with Darrin as she starts her return journey back home after almost five months in hospital.

Rebecca and Marisa sit with the family dog Cookie after Rebecca arrived home after almost five months. "When I came home, I felt ecstatic to see Cookie and the cats Zippy and Zorro! I missed them so much and by the way they reacted when I walked through the door, I’m sure they missed me too,” said Rebecca.
. Kappara, Malta. Reuters/Darrin Zammit Lupi

Rebecca and Marisa sit with the family dog Cookie after Rebecca arrived home after almost five months. "When I came home, I felt ecstatic to see Cookie and the cats Zippy and Zorro! I missed them so much and by the way they reacted when I walked through the door, I’m sure they missed me too,” said Rebecca.

Rebecca paints on an art canvas as she recovers at home.
. Kappara, Malta. Reuters/Darrin Zammit Lupi

Rebecca paints on an art canvas as she recovers at home.

Rebecca naps on the living room sofa with Cookie the dog and Zorro the cat as she recovers at home.
. Kappara, Malta. Reuters/Darrin Zammit Lupi

Rebecca naps on the living room sofa with Cookie the dog and Zorro the cat as she recovers at home.

Rebecca celebrates her 15th birthday with her friends Luisa Zammit and Elea Broger. "My 15th birthday was obviously quite a different experience for me since I couldn’t see many friends or interact with them as I normally would and also had to spend most of the day in an N95 mask. However, I got to see some of my best friends whom I hadn’t seen in months which felt great!  For my birthday, I asked for donations to Puttinu Cares Foundation. I chose this charity because their mission means a lot to me, and I was thrilled that so many people contributed as a way of celebrating with me. Puttinu Cares has helped me throughout my whole experience and will continue to do so especially if I have to go to Oxford for an operation in the future, as well as helping other cancer patients.”
. Kappara, Malta. Reuters/Darrin Zammit Lupi

Rebecca celebrates her 15th birthday with her friends Luisa Zammit and Elea Broger. "My 15th birthday was obviously quite a different experience for me since I couldn’t see many friends or interact with them as I normally would and also had to spend most of the day in an N95 mask. However, I got to see some of my best friends whom I hadn’t seen in months which felt great! For my birthday, I asked for donations to Puttinu Cares Foundation. I chose this charity because their mission means a lot to me, and I was thrilled that so many people contributed as a way of celebrating with me. Puttinu Cares has helped me throughout my whole experience and will continue to do so especially if I have to go to Oxford for an operation in the future, as well as helping other cancer patients.”

Rebecca naps in her bedroom as she recovers at home.
. Kappara, Malta. Reuters/Darrin Zammit Lupi

Rebecca naps in her bedroom as she recovers at home.