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TAL-OROQQ, Malta (Reuters) – Interestingly, I cannot clearly imagine the face of the surgeon who changed my family’s life. I’m not sure I will recognize him if I meet him on the street. And yet I can vividly recall that his face turned pale the instant he looked at the X-rays of my 14-year-old daughter’s shoulder.
His chronic pain had been diagnosed first as possible inflammation and then possibly some muscle problem that could be fixed with a few sessions of physical therapy. But on that day, October 31, 2019, we discovered that it was Ewing’s sarcoma, a rare and extremely aggressive form of bone cancer. The cancer had started deep in the cancellous bone of her humerus and then burst through the surface of the bone, causing excruciating pain and then metastasizing to various 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 staff in the pediatric and adolescent ward, aptly named Rainbow Ward, at the Sir Anthony Mamo Cancer Center, an annex to the island’s main national hospital, Mater Dei.
To begin with, we were told that he would need nine cycles of chemotherapy to start, followed by surgery to replace the bone with a prosthesis at the Nuffield Orthopedic Center in Oxford, England.
But less than six months later, Becs’ battle would be further compounded by a global pandemic that brought paranoia about the possibility of infecting his compromised immune system, anxiety about medical supply chains and, worst of all, separation in a when the union was a problem 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 the hospital with her. I visited her every day while continuing my work as a photographer for Reuters.
But that changed on March 15, with the arrival of the new coronavirus in Malta. It was Sunday and I was covering the arrival of rescued migrants, as I have had to do so often in the last 15 years. Marisa called me in a panic, saying that they were going to impose a lockdown on the room.
Starting the next day, those inside would stay and those who didn’t stay outside, in an attempt to try to protect young and highly vulnerable patients. We needed to reorganize our lives quickly; we had no idea how long this would last. I left my equipment at home and rushed to the hospital to spend what would be my last night in the hospital with Becs in a long time.
We did the things we used to do together: we watched several episodes of “Friends,” we talked, we laughed, we played board and card games. Leaving her tonight felt like the hardest thing he’d ever had to do. He had no idea when he would see her in person again. Naturally, for the next several weeks, Becs and I saw each other on a daily basis on FaceTime and Messenger, but it wasn’t the same.
Still, he knew it was for his own safety. With her immune system practically non-existent, the coronavirus would be fatal for her. I’m glad the hospital didn’t take a chance, no matter how difficult it was for us. The alternative was unthinkable.
On the home front, paranoia took hold. The obsessive measures necessary every time I went out, every time I entered a store, returned to the car, returned home, took off my shoes and disinfected their soles, unpacked the purchases, cleaned everything with disinfectant, all the effort that went into To clean and disinfect absolutely everything that came into the house was sometimes overwhelming. (I drew the line when someone suggested that I should disinfect the dog’s paws when I brought her home from her walks, always taken late at night to avoid meeting other people on the streets.)
Then there was the overwhelming anxiety: am I doing this right? Did I miss a place, did I just bring the virus home, did I just get infected? Will the anxiety pandemic end up being worse than the virus pandemic itself? No wonder it soon exhausted me in every possible way.
I kept a journal during this terrible time. I started it partly because I had decided to document the Battle of Becs, but it was also an attempt to preserve some of my sanity. Also, I didn’t know how bad COVID was going to get here; I didn’t know if he was going to kill us all. Putting things into a document that a select few people could access via the cloud was also a way to ensure that if something happened to me, the story wasn’t completely lost.
March 31, 2020. I put on a mask for the first time when I went out yesterday. I went to a convenience store to buy some cleaning supplies, the aisles were narrow, there were quite a few people and my glasses were foggy from the N95 mask (a pharmacist friend managed to get me three a few days ago, he said they should last about 12 hours of use each a). I haven’t felt that claustrophobic feeling in years, it was crazy. It took a lot of willpower not to rip it off my face at that moment.
The worsening of the COVID situation globally meant that Rebecca’s treatment plans had to be changed. Her doctors decided to continue chemotherapy beyond the planned nine cycles and to include the cycles she would have undergone after major surgery at Oxford.
In addition to being unable to travel to England, we had to deal with concerns about the availability of medical supplies.
April 3, 2020. Becs had his MRI on his shoulder. Although it shows improvement, the active cancer cells remain. She will now receive radiation therapy in addition to continuing chemotherapy. Her positron emission tomography scan was delayed because the necessary dye was not available. The supply chain in Italy was having problems. I got in touch with people I know within the system, and they quickly looked into it, and within one day, an old friend of Kili’s who is a radiologist contacted me and said supplies would be back in a couple of days. days. There was a problem with the ground handling staff at Fiumicino in Rome, but now it is resolved. As I write this, Becs is probably about to be taken to the Imaging Department for a scan.
Solitary confinement in the hospital was difficult. For several weeks, Becs and Marisa were essentially confined to their room. No more walking around the room and stopping at the nurses station to chat, or stepping out onto the deck for some fresh air. The games rooms were closed and the kitchen that had been available for use by families could only be used according to a list.
As the cabin fever began to set in, the authorities gave in on some measures and began allowing the use of the lounge terrace again, with people taking turns and only for a few minutes.
April 6, 2020. Saw Becs today! And Mars. Mars managed to find a way to see us. The terrace overlooks the doctors’ car park, which is quite quiet in the afternoons. So since the weather was nice and Becs was able to go out onto the terrace, we did.
The first time we met in person in more than three weeks.
He could only see them through the gaps in the fence, but it was something extraordinary.
An emotional moment for everyone.
After nearly two months, quarantine measures at the hospital were further relaxed and parents were allowed to move around, subject to negative COVID tests and maintaining a strict quarantine at home. I ended up doing two periods in the hospital of more than three weeks each for the next two months.
April 27, 2020. It was really amazing to finally meet her. There are so many fun things she wants us to do together, I don’t see how we can fit them all together. But we are trying!
May 11, 2020. We have never spent so much time together, just her and me. We have seen many episodes of ‘Friends’; in fact, yesterday we finished the last season. We started seeing him together when she first got sick and we’ve shared a lot of laughs since then. It really helped us get through this ordeal.
By then, Becs was also undergoing a grueling daily regimen of radiation therapy, the side effects of which were not pleasant. In addition to wreaking havoc on his 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 radiation treatment. By then, she had been fascinated by the general idea of medical imaging and radiation therapy, even considering it as a possible career choice.
Becs even managed to find something positive about the confinement: “Once the confinement started, they took away any of the fun I had. However, something good happened,” he told me when he was writing this story. “Online school was introduced, and finally, after five months of not being in school, I was able to join some lessons and communicate with my teachers. This is what I had been asking for for months, but my request that the lessons they were passed on to me was rejected. Once they weren’t given a choice, it just showed how this was possible, so I started fighting for online school to continue after COVID-19 for students unable to attend school / college for medical reasons, for people like me. I’m so glad that even in my toughest year, my voice was heard. “
May 16, 2020. I am at home, after three weeks locked up in the hospital with Becs. Home seems strange, unfamiliar. Or maybe I am completely exhausted physically and mentally. Things may seem more normal tomorrow.
Throughout all of this, Marisa would keep our friends and family updated on Becs’s progress with Facebook posts. One in particular seemed to sum up our situation well, so I included it in my journal.
May 26, 2020. “Here at Rainbow Ward, it’s not just about our own story. It’s about many families sharing their story. I’ve spent enough time here to be a part of it all … Today, we stand 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 contact with her mother, who needs support and prayers at this time. from her. “
July 8: The patient Mars wrote about, cited above, failed. She was only one year old.
Becs was finally released from the hospital in mid-July, after completing her fourteenth and final cycle of chemotherapy, more than four months after being locked up there. You will continue to attend as a day patient on a regular basis for the foreseeable future.
This is far from over. We are still waiting to see if they take her to Oxford for the surgery the doctors think she needs. There are many more tests in progress. But there have been good times too: Becs recently turned 15, and seeing her old friends on her birthday meant everything to her.
For Becs’s first outing a few days after she left the 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 Comet Neowise. Although the comet was difficult to see with the naked eye, Becs managed to see it with the help of my camera and long lens.
And then we saw a shooting star. We make a wish, there are no prizes for guessing what it was.
(Reporting by Darrin Zammit Lupi; Editing by Kari Howard)
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