Jessie on a Father's Mighty Love
Updated: Feb 28
"On the 26th of July 2012 at exactly 23:45, a day before the London Olympics opened, a healthy little baby boy weighing 7 pounds and a half was born. As planned, Julienne (my other half) and I named him Amar’e. He was the ‘apple of our eyes’, growing together with his four-year older sister, Matilda. We thought that was one of the happiest moments of our lives as a family. Just like other babies, he was so cheeky, playful and a bit naughty. He picked things up so easy and quickly. Amar’e means 'a good-looking guy' in African; in Hebrew it means 'LOVE and God’s Word'."
THE DAY THAT CHANGED EVERYTHING
"In the winter of 2016, around November, we noticed that Amar’e was not well for more than two weeks. He was complaining of joint pain, sweating and sleepless nights. We took him to the doctors several times but got the same response of having a viral infection. As I remember, he had that ill-feeling on and off for about two or three months."
"Until one morning (2nd of April 2017), when everybody was ready for the weekend-long holiday, Amar'e showed tiredness and was in a very low mood. His temperature was spiking a bit high, he was pale with some red patches on his skin. He was very ill that morning. We had a feeling that something was going on, so instinctively, as parents, we decided to abort our booked holiday and headed straight to A and E (Emergency Hospital). Good thing we hadn’t left for our holiday as initially planned."
"Later that day, a few consultants discussed Amare’s blood test results and condition. One of them wanted to talk to us privately. As he approached us in a very professional manner, I knew deep down that something was not right. We found out that Amar’e got ALL (acute lymphoblastic leukaemia). We couldn’t describe how devastated we were right after we heard the terrible news. As a father, I couldn’t manage to hold my tears from falling down. I didn't know what to do. My wife and I had a feeling of disbelief."
"I thought the result was reliable and true given the fact that the diagnostic was discussed by a team of consultants. Beforehand, the result was liaised and confirmed by the Royal Marsden Hospital, which is the Centre of Cancer (Oncology) Hospital in England. Most of the senior staff advised us not to do research online as much as possible for that would only magnify our worries and anxieties."
"The first 8 months were so crucial as we kept an eye on him all the time. I mean we need to put an extra layer of care with his condition. Whoaaa, he changed a lot - mostly due to his treatment. After months of chemotherapy Amar'e started to lose his hair, was weak and pale, and eventually his skin turned as dark as burnt-like colour."
"There was a funny moment that in the middle of the night, he was sort of having hallucination and disorientation. He woke up and suddenly he was jumping on his bed as if he was playing with his favourite dinosaurs and talking to them. It was so funny and we felt sad at the same time. A steroid called dexamethasone, which he was taking twice a day for a week during his chemo - ohhh I tell you this drug made him hungry 24/7, itchy and the worst thing, he was irritable and impatient."
"Sometime in May 2017, Amar'e got poorly ill. He developed a fungal infection in his lungs. It took some time before the doctor figured out what was happening. Fungal infection is very hard to detect. He was admitted at our local hospital that time, so they decided to transfer Amar’e to the children's hospital in London, The Great Ormond Street Hospital for intensive monitoring of his condition. His saturation was very low and his heart rate too. He was intubated and blue lighted (ambulances). We thought that we'd lose him. That was the most terrifying and the hardest time we’ve experienced. Two months after, we went to St. Georges Hospital in London and spent weeks or probably a month for the same reason."
A ROBUST SUPPORT SYSTEM
"Shout out to the best health care we're receiving for Amar’e. All the supports are there - from the medical point of view, the staff, facilities and the whole system in general. It was fantastic and superb. We have a few charities and local council that helped us throughout this journey - be it financially, psychologically, emotionally. Our hospitals where we are working, are very supportive. They gave Julienne a year-off (paid leave) just to focus on looking after us. We’ve seen a psychologist a couple of times to help maintain our mental state particularly with my daughter Matilda. A charity “Grant a Wish", granted Amare’s wish to see New York or Orlando free of charge with the family once his treatment is done."
Amare’s bravery is exceptional. Given the situation, he’s on top of his class.
"We got a surprise visit when we were at the Royal Marsden, a hospital that was founded by the late Princess of Wales, Princess Diana. It was 9 in the morning when we heard news that the Duke and Duchess of Cambridge (Prince William and Princess Kate) were there. AAAHHH my wife’s eyes popped-out and she was hysterical. So, I peeped out of our room, and saw lots of people and cameramen in the corridor. Then the staff told us to prepare for the Duke and Duchess wanted to see and meet all the children and their parents in the lounge."
"The meeting lasted for 10-15 minutes. It was a quick and scripted meeting I guess. We didn’t even get a good photo of them. According to my wife, it was a once-in-a-lifetime experience and quite a different feeling to meet and quickly converse with the Royals. Julienne forgot that she has a cancer-patient son that time."
"There was overwhelming support from out there pouring in. A solid support mechanism was already embedded in the system. Once they knew that you are a cancer patient, a protocol staff will discuss and lay down all the support they will provide in front of you. The idea is to help the family cope in these difficult times. It included a Charity that can give assistance in terms of finances, (e.g. few months free of mortgages), a referral to psychologists for our mental health, another Charity that gives us free transport (to all our hospital appointments, chemos and treatment)."
"Big salute to this amazing, strong little man. I can’t remember him complaining and being scared of getting poked so many times. As a matter of fact, he had more than 400 injections all over his body. He just simply submits himself to any treatment. Amare’s bravery is exceptional, deep down inside telling himself to just get it on and deal with it. I think he doesn’t fully understand the dreadfulness of his illness. Amar'e has only completed 55% of school attendance but still managed to impress his teachers and us. Given the situation, he’s on top of his class, which we didn’t expect from him at all."
"I can’t deny, I have experienced stress, anxiety, depression - all of these for a time. But I did manage to recover. I think it is my nature, being so calm and patient. That’s my asset, I guess. Good thing I remained on the course of being positive. I cried a lot in front of my family but never failed to encourage them that there is always a light at the end of the tunnel."
"We have not known any other option but to be strong and face this. I think Julienne is doing so great, she is the strongest woman I’ve ever known. This absolutely changed my views, my understanding of life. On the bright side, I value my family the most. From this moment onwards, not really to enjoy, but to live life meaningfully and purposely given the fact that it is too short. Investing more time with family and the people I love. Time waits for nobody. Secondly, I now know and appreciate the power of giving and sharing specially to those who are in need. Be it in any kind, it doesn’t matter how small for every little thing helps and makes a difference."
This absolutely changed my views, my understanding of life. Not really to enjoy, but to live life meaningfully and purposely given the fact that it is too short. Time waits for nobody.
"On a difficult day, I draw strength from the three BIG Fs’- FAITH, FAMILY and FRIENDS. Colleagues advised me to get back to strengthening my FAITH. As a family, we made it through. We are so grateful as well for those friends around us who really understand what we're going through during these tough times. People who reached out and offered help. I treasure these precious things that I have. It is indeed a beautiful life. It really is."
"To be honest, I am so uptight with my kids. For that I feel a bit of guilt. Being strict does not make any difference. From now on, I have to loosen up my rules a bit, giving them the responsibilities while letting them enjoy their freedom being a kid."
Get your strength through faith. Never cease PRAYING.
"Can’t wait to finish Amare’s treatment so that we can get back to live a normal life. Picking up all the bits and pieces and carrying on again. We are looking forward to see our family back home, plan for a well-deserved holiday and meeting friends here, home and abroad. Hope to see you as well Rai and the rest of our friends and classmates one day."
"FAITH is the greatest thing that keeps us from falling apart and drifting away. Get your strength through faith. Never cease PRAYING. JESUS amazes me in millions of reasons. If you have faith everything will follow. Be humble and be kind - wherever you are and whatever you do in this life."
Deeply moved by the bestselling book (that started off as a blog), Humans of New York Stories, I am making space for little stories from real people to spur me into thinking about and doing constructive things. We all have stories to tell, and they do carry a lot of weight. May the words and insights from these Little Stories translate into some form of hope, courage, and change above all else. ~Raya