When COVID first hit last year, every parent was worried about their child’s health. But for Syrian-Italian mother of two Nermine Saadeh, it was like her world had collapsed all over again.
Not only was her older son Julian already living with a brain tumour that put him at a much higher risk were he to catch the virus, but a few weeks after the pandemic began, the tumour suddenly started to grow again.
“Julian's first brain tumour surgery was on 17 September 2018,” says Dubai-based Nermine, who is also mum to Julian’s younger brother Angelo. “The surgery didn’t go well, but at least it saved his life. He lived with a 2.5cm mass tumour for a year and a half, but then it started to grow again in 2020, a few weeks after COVID entered all of our lives.”
But one year after the pandemic first hit, and three years after Julian was first diagnosed with a brain tumour, and the little boy is now officially tumour-free, following successful surgery in October 2020. As he celebrates turning 5 on April 13 2021, his mother Nermine could not be more thrilled to be able to see him turn an age that during the darkest times she was terrified he might never see: “I have shed so many happy tears,” says Nermine. “I just feel so relieved that I don’t have to see him suffer anymore.”
Late walking age was the first brain tumour sign
Julian was born absolutely normal, says mum Nermine. “He reached all of his milestones on time and sometimes even earlier, apart from learning to walk. After his first birthday we started to worry a bit and took him to many different doctors in Dubai for tests, but the results came back normal and we were told he would walk when he was ready.”
However, Nermine’s maternal instinct was telling her that something was not right and she kept taking him to doctors to figure out why he wasn’t able to walk. “At 20 months, he finally took his first step. It was such an amazing moment after all the stress we had been through! But six months later he was still not able to run, climb stairs or balance while walking – he needed to hold someone’s hand to walk without falling.”
In August 2018 Julian suddenly got worse, and he was falling down hundreds of times a day. His doctor suggested a brain and spine MRI scan and the report showed a shocking result. Julian had a cerebral tumour the size of a tennis ball, and late stage hydrocephalus [a condition in which excess cerebrospinal fluid (CSF) builds up within the ventricles of the brain]. “We were devastated,” says Nermine. “I couldn’t believe what had happened, and for the next five days woke up thinking it was had been a bad dream,” only to be hit by the horrifying reality.
A traumatic 15-hour surgery followed in September 2018, which Nermine says was “the worst day of my life. For 15 hours I died and lived a million times.”
When he first emerged from the operation Julian was initially unable to move, see hear or speak, although he gradually regained his faculties over the next few weeks, and was able to walk again nine weeks post-surgery. This was a dark time for his mum Nermine: “I couldn’t stop thinking about how difficult life will be for him. I couldn’t stop blaming myself for bringing him to this cruel painful world and I developed depression. I wished nothing but to play his role in this unfair game of life.”
A follow-up scan in December 2018 unfortunately an enhanced residual neoplastic mass, which would require another surgery, but he was able to live with it while his body recovered. Until COVID hit.
Even before they realized that the tumour was growing again, the pandemic put Nermine into panic mode: “I am a worrier and quite an emotional person, so I was absolutely terrified for Julian and his medical condition when the pandemic hit,” she says. “Also I am asthmatic and I was thinking that if I ever get COVID I probably won’t make it.” As a result Nermine says she went into overdrive with cleaning and hygiene: “I went overboard with the sanitization at home and around the kids. I literally locked the kids in for a few weeks, and I was sanitizing all groceries and anything that came into the house from outside.”
But when Julian’s balance and motor skills started to deterioriate a few weeks into the pandemic, she had the horrifying realization that the worst might be happening again.
“He always had the same symptoms of gait imbalance and difficulty walking on uneven surfaces, which would vary in intensity and get better some days and worse on others.” But a few weeks into the pandemic it got a lot worse. “He couldn’t walk on uneven surfaces, couldn’t run at all, couldn’t climb stairs, he choked even on thin liquids and his hands were too weak to hold a pen.”
Nermine masked and gloved up and took Julian to see the doctor for an MRI scan. Not only was it frightening to have to visit a medical facility during the early days of the virus, but Julian had also developed a phobia of hospitals after his traumatic operation.
“For what Julian has been through, a piece of my heart died and a scar in my soul will never heal, but the news he is tumour-free is the largest rainbow after a bad storm.”
The results confirmed his mother’s darkest fears – the tumour had started to grow again - and there was only one option: another surgery, which happened in October 2020.
“It was scary to be in a medical facility during the pandemic, to be honest. I was so worried about him before, during and after the surgery to catch COVID because his immune system was so weak. I was so protective and made sure nothing came close to him that was not 100% sanitized. Luckily, none of us caught COVID and my husband, I and our nanny are fully vaccinated, and hopefully the vaccine will be allowed for kids soon too. We feel absolutely lucky to live in such as amazing country that was one of the first to offer the vaccine to public.”
UAE mums offering support from a distance
Back in 2018, as Nermine paced the hospital floor outside the operating theatre while her then two-year-old little boy endured 15 hours of brain surgery, she took out her phone and began to type.
Logging onto Facebook, she posted on the group ‘Real Mums UAE’ in desperation, begging other UAE mums to pray for Julian. “The longer it took, the more hope we were losing,” she says. “I posted on Real Mums of Dubai [now Real Mums UAE] as I felt I needed some positivity. I ended up being overwhelmed by the number of comments and messages I got praying for my little boy."
This kickstarted a bouquet of supportive friendships with other mums, who Nermine has remained in touch with, and to whom she was able to turn to once again when Julian had his surgery second time around in October 2020.
“I just wanted someone to remind me that everything is going to be OK and that I am the strong mama bear of a superhero little boy. And who can do this better than a fellow mum?”
With the COVID situation, and family based in Italy and Canada who were unable to travel due to pandemic restrictions, Real Mums became Nermine’s refuge. She posted her worries about the second surgery on there and again received a sea of supportive comments and messages. “I needed prayers and thoughts, and virtual emotional support, which as usual was so overwhelming. I believe with the COVID situation, we all need prayers and positive thoughts. Sadly, Julian and I couldn’t physically meet our Real Mums friends during the pandemic, but we have received lots of calls, messages and gifts. It is a wonderful and a heartwarming village.”
Thankfully, the second surgery went smoothly and only took four hours, and this Spring 2021 the follow-up MRI scan showed the news that Julian’s family and the Real Mums UAE members had all been praying for.
Rainbow of hope after a long storm
“When we got his last MRI report and the doctor announced that the tumor is all gone and it is time to go and enjoy a pain-free life, I couldn’t hold back my happy tears,” says Nermine.
“This news is a real re-birth for Julian, and all I want is to hold my baby close to my heart and celebrate his new life every single day. The most difficult part of motherhood, is went you see your child suffer while there is nothing you can do to help.”
Having developed a serious fear of hospitals after his traumatic surgery, Nermine and family could hardly believe the news that he wouldn’t need to return for another MRI scan for one whole year. “We are over the moon to say goodbye to all our endless hospital visits, check-ups, CT scans, tests, MRIs, physiotherapy and hopefully soon too psychology,” she says. “It has been so traumatic to take him to the hospital for any reason, he became so terrified from hospital, doctors, white gowns, injections, hospital beds and blood and we are glad he has at least a year break from all these.”
On April 13 2021 Julian turns 5, which he is celebrating with a beautiful rainbow cake – a symbol of positivity that has helped him throughout his treatment and trauma even before it became the motif of hope during the pandemic, and which his mother Nermine says also symbolizes his new, tumour-free life.
“It’s a new life and a new beginning. He hasn’t been able to live his normal childhood so far and recently he started feeling less than his peers due to his physical challenges. He likes to sing and dance and play sports, and it is time to make up the lost time and shine again! We will do everything we can to make him happy. On his fifth birthday, we wish him love, peace and good health – to him and all the children in the world.
“For what he has been through, a piece of my heart died and a scar in my soul will never heal, but this news was the largest rainbow after a bad storm.”
Brain tumour symptoms in children
While brain tumours are rare, it is important to be aware of brain tumour symptoms, so you can go to your doctor if you are concerned. Here are some comon symptoms of brain tumours in children, according to The Brain Tumour Charity.
- Changes in vision
- Nausea and vomiting
- Balance problems
- Behaviour changes
- Abnormal head position
- Delayed puberty
- Abnormal growth
- Excessive thirst
- Reduced consciousness
Julian's mum Nermine found support online through the Facebook group Real Mums of Dubai, but there are many other forms of support available in the UAE.
She advises other mums in a similar situation to her:
“Follow your instincts, always take a second and a third and a forth medical opinions. You have to be strong and look after yourself to be able to protect and look after your loved ones. It isn’t easy to see your child suffer and you don’t have to hide your tears and suffer alone. Find your support system and seek help. Remember that kids are so resilient and superheroes by nature.”