Pandemic, deadly cancer and my 14 year old daughter

TAL-OROQQ, Malta (Reuters)-Curiously, I can’t clearly depict the face of a surgeon who changed the life of my family. I don’t know if I will recognize him if I hit him on the street. Still, the moment he sees an X-ray on his 14-year-old daughter’s shoulder, he can vividly remember his face turning pale.

Her chronic pain was initially diagnosed as likely to be inflamed, and may have subsequently developed muscle problems that can be corrected in several physiotherapy sessions. But that day, October 31, 2019, it turned out to be Ewing’s sarcoma. This is a rare and highly invasive form of bone cancer. The cancer started deep in the sponge bone of the humerus, then originated from the surface of the bone, causing severe pain and metastasizing to several other parts of the body.

Rebecca, or Bex, which we call her, was suddenly fighting for her life.

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

Initially, we were told that she would first need nine cycles of chemotherapy and then surgery to replace the bone with a prosthesis at the Nuffield Orthopedic Center in Oxford, England.

But less than six months later, the Beck’s battle was to move away when there was a potential infection of the infected immune system, anxiety about the healthcare supply chain, and, at worst, a sense of unity. It will be exacerbated by the global pandemic that brought about paranoia. What you need most.

Becs was hospitalized during the round of treatment, allowing her to be closely monitored. My wife, Marisa, or Mars was hospitalized with her. While continuing to work as a Reuters photographer, I visited her every day.

However, the situation changed on March 15, when the new coronavirus arrived in Malta. It was Sunday and I had to do so frequently over the last 15 years, so I was talking about the arrival of rescued migrants. Marisa panicked and called me, saying they would impose a blockade on the ward.

From the next day, to protect young and highly vulnerable patients, those who were in stayed and those who were out were not. We needed to quickly reorganize our lives. I didn’t know how long this would last. I put my gear at home, hurried to the hospital and went to the hospital and spent a very long time with Bex.

I watched some episodes of “Friends”, talked, laughed, played board games and card games. Leaving her that night felt like the hardest thing I ever had to do. I didn’t know when I would meet her next time. Not surprisingly, over the next few weeks, Beck and I saw each other daily on FaceTime and Messenger, but they weren’t the same.

Still, I knew it was for her own safety. The coronavirus is deadly to her because her immune system is virtually non-existent. No matter how hard the hospital may be, I’m glad the hospital didn’t take the opportunity. No alternative was conceivable.

Para-noir started in front of the house. Every time I go out, every time I step into the store, go back home, take off my shoes, disinfect the soles, unpack groceries, and wipe everything off, compulsive measures are taken. I needed it. The use of disinfectants sometimes overwhelmed all the effort spent to completely clean and disinfect everything that came into the house. (I drew a line when someone advised me to disinfect the dog’s paws when someone took the dog home from a walk.

Then there was overwhelming anxiety-Am I doing this right? Did you miss the place, brought the virus home, or just infected yourself? Is the anxiety pandemic worse than the viral pandemic itself? It’s no wonder I was quickly exhausted in every possible way.

I kept a diary during this terrible time. I started it because I decided to record the battle of Beck’s, but it was also an attempt to save something of my sanity. Also, I didn’t know how terrible the COVID would be. I didn’t know if it would wipe us out. Explaining things in a document accessible to some specific people accessible through the cloud was also a way to ensure that the story wasn’t completely lost if something happened to me.

March 31, 2020. I wore a mask for the first time when I went out yesterday. I went to a mini market to buy some cleaning agents, the aisles were narrow, there were quite a few people, and N95 masks (a pharmacist friend procured three for me a few days ago) I was able to, she said they each need to be used for about 12 hours). I haven’t felt claustrophobic for years. It took a lot of willpower to keep it from peeling off my face from here and there.

Due to the deteriorating COVID situation worldwide, Rebecca’s treatment plan had to be changed. Her doctor decided to continue chemotherapy beyond the first nine cycles envisioned and include the cycles she would have received after major surgery in Oxford.

In addition to the impossibility of traveling to the United Kingdom, we had to address concerns about the availability of medicines.

April 3, 2020. Becs had an MRI on his shoulder. Improvements have been seen, but active cancer cells remain. She will now receive radiation therapy in addition to continuing chemotherapy. Her PET scan was postponed because she did not have the necessary pigment. The Italian supply chain was facing problems. I contacted acquaintances within the system and they immediately looked it up. Within a day, a fellow radiologist, an old Kiri, contacted me and said that supplies would be returned within a few days. There was a problem with the ground processing staff at Fiumicino in Rome, but it is now classified. At the time of writing this, Becs is probably being taken to the imaging department for scanning.

It was difficult to confine a cell in a hospital. For a few weeks, Becs and Marisa were basically trapped in their room. You no longer have to roam the ward, stop by the nurse station to chat, or step out onto the terrace for fresh air. The game room was closed and the family kitchen was only available according to the roster.

As cabin fever began to occur, authorities did not tolerate some measures and began to allow the use of the ward terraces again.

April 6, 2020. I saw Becs today. And Mars. Mars was able to understand how they could see each other. The terrace overlooks the doctor’s parking lot and is quite quiet in the afternoon. So the weather was nice and Beck was allowed out on the terrace, so we went for it.

I met him in person for the first time in more than 3 weeks.

I could only see it through the gap in the fence, but it was quite difficult.

Emotional time for everyone.

Almost two months later, hospital quarantine measures were further relaxed, and parents were able to switch locations while maintaining strict quarantine at home with a negative COVID test. After all, I did two stints at the hospital for more than three weeks in the next two months.

April 27, 2020. It’s really great to finally be able to meet her again. There’s a lot of fun she wants us to do together. I don’t know how to combine them all. But we are working hard!

May 11, 2020. I’ve never spent such a long time together. Only her and me. I saw many episodes of “Friends”. In fact, last season ended last season. We started seeing it together when she first got sick. Since then, we have shared a lot of laughter. It really helped me overcome this challenge.

By this time, Bex had been receiving harsh daily radiation therapy, but the side effects were not very good. Apart from causing havoc in her blood cell count, the resulting skin burns were very painful. To cheer her up, the nurse held a small party for her at the end of her radiation therapy. By then, she was fascinated by the overall idea of ​​medical imaging and radiation therapy, and saw it as a potential career choice.

Becs managed to find a positive from the lockdown. “When the lockdown started, any fun I had was taken away, but something good happened,” she told me when I was writing this story. “When the online school was introduced, I was finally able to take some lessons and communicate with my teacher five months after I was out of school. This is what I’ve been asking for for months, My request to stream the lesson to me was rejected. When they weren’t given the option, I just showed why it was possible, so I had a medical reason. I started fighting to continue COVID-19 at online school for students who can’t attend school or college, people like me. I’m very happy to hear my voice even in difficult years. “

May 16, 2020. After being detained in the hospital with Becs for 3 weeks, I am at home. The house is like a foreigner and unfamiliar. Or I’m completely exhausted physically and mentally. It may look more normal tomorrow.

During all this, Marisa kept up-to-date with friends and family about the progress of Becs’ Facebook posts. One in particular seemed to summarize our situation well, so I included it in my diary.

May 26, 2020. “Here at Rainbow Ward, it’s not just our own story. It’s about sharing their story with many families. I can spend enough time here and be part of it all. I’m done …. Today we were here but in solidarity with a very young patient who is currently in the UK. While I was writing she was receiving critical care … now support I am in contact with her mother who needs prayer. Think of her. “

July 8: The Mars-written patient quoted above did not accomplish that. She was one year old.

Becs finally ended chemotherapy in mid-July, more than four months after completing the 14th and final chemotherapy cycle. For the time being, she will attend regularly as a day trip patient.

This is not the end. We are still waiting if they will take her to Oxford and the doctor will do the surgery she thinks she needs. The pipeline contains more tests. But there was also a good moment: Becs recently turned 15 and seeing her old friend on her birthday meant everything to her.

For her first outing a few days after Bex left the hospital, I took her late at night to a relatively dark place in the northwest corner of the island, so she could get a glimpse of Comet Neowise. It was. The comet was hard to see with the naked eye, but Beck’s managed to see it with the help of my camera and long lens.

And I found a shooting star. We have granted our wish-there is no prize to guess what it was.