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 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.
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.
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.
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.
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.
[to top of second column] |
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.
April 6, 2020. I saw Becs today! And Mars. 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.
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.
By this time, Becs was also undergoing a grueling 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.
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: 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.
(Reporting by Darrin Zammit Lupi; editing by Kari Howard)
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