The pandemic, a deadly cancer and my 14-year-old daughter
Darrin Zammit Lupi on the difficulties and anxieties of his daughter’s treatment in hospital during extremely uncertain times
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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 recognise 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, 31 October 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 broken out through the bone surface, causing excruciating pain, then metastasising to several other parts of her body.
Rebecca, or Becs, as we call her, was suddenly fighting for her life.
We live in Malta, a small island in the Mediterranean Sea between Italy and Africa. Becs’ care was entrusted to the staff in the paediatric 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.
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.
Less than six months later, however, Becs’ battle would be made even worse by a 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.
During her rounds of treatment, Becs was hospitalised 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.
That changed on 15 March, 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 reorganise 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 non-existent, 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.
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 sanitiser, 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 sanitise 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.
31 March 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.
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.
3 April 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 department for the scan.
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 on to the terrace for some fresh air. The games rooms were closed, and the kitchen that had been available for families to use could only be used according to a roster.
6 April 2020: I saw Becs today! And Mars managed to figure out a way how we could see each other. The terrace overlooks the doctors’ car park, which is pretty quiet in the afternoons. So, as the weather was nice and Becs was allowed out on to 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.
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.
27 April 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!
11 May 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.
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.”
16 May 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.
During all of this, Marisa would keep our friends and family updated on Becs’ progress with Facebook posts. One in particular seemed to sum up our situation well, so I included it in my diary.
26 May 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.”
8 July 2020: The patient Mars wrote about, quoted above, didn’t make it. She was only one year old.
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.
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.
Reuters
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