Raje’s future isn’t looking all that bright after a series of prolonged medical examination revealed he has Hodgkin lymphoma, a cancer of the white blood cells or lymphocytes. Raje, who is a student at the Old Harbour-based Marlie Mount Primary and Infant School, was diagnosed with stage two of the condition in September of this year, but within a few more weeks his status has been elevated to stage four.
Hodgkin’s lymphoma is treatable, especially in its early stages, according to several online medical sites but the survival rate is lower for people living with stage four due to the fact that the disease has spread outside the lymphatic system to other vital organs of the body.
However, “some types of stage four lymphoma may be curable,” website, healthline, stated.
“The treatment options and survival rates for lymphoma continue to improve. Depending on the type of stage four lymphoma you have, you may be able to cure your cancer. Even if you can’t cure it, treatments may help prolong your life and improve its quality,” it explained.
The family is now in a race against time to save Raje but faces rising medical expense exacerbated by a $274,000 chemotherapy treatment needed every 14 days.
On Sunday, Raje underwent a second surgery in less than a month, an emergency operation that became necessary to remove a portacath (an implanted venous access device for patients who need frequent or continuous chemotherapy treatment) in his chest after picking up a viral infection Tuesday.
Speaking from her son’s bedside at the University Hospital of the West Indies, his mother, Venessa Williams-Morgan, told Old Harbour News that “because of the type of cancer he has his body isn’t using the antibiotics to fight the infection well,” hence the need for surgery.
Fingers crossed and should everything goes well Raje will undergo a positron emission tomography (PET) scan – to determine where and whether cancer has spread – at the end of this month. The cost to do this scan is a cool US$3,000.
To offset some of the expense, the Claremont, Old Harbour family has launched a GoFundMe for Raje, while persons can directly donate funds to BNS Account 41335420582. They have also decided to undertake a few fundraising initiatives, one being a fish fry set for November 29, 2019 at the Church of God of Prophecy Old Harbour, the place of worship for the family.
Williams-Morgan says she is grateful for the support of her immediate family and church, while her husband Ralston Morgan is doing an exceptional job holding the forte at home, which includes taking special care of their one-year-old son while juggling his full-time job at Jamaica Broilers.
“If a man deserves a star that man deserves a star,” she said of her husband’s unflinching support and commitment.
“It’s amazing the type of father he is, I have to give him all the props,” added the quality assurance technician while also acknowledging the support of her own employers who have granted her extended leave with pay as she literally now lives at the hospital.
A dramatic turn
Recounting the dramatic turn of events over the last 18 months, Williams-Morgan said last year she noticed a “small lump on the right side” of Raje’s neck. But there was nothing seemingly to be alarmed about as a trip to their general practitioner suggests he was having an allergic reaction to something.
“About two months after that the one lump that was at his neck, it turn into two,” his mother told Old Harbour News. “Because he’s a little chubby it wasn’t noticeable, at first you could only feel it. But then I realize it got big where you can see it obviously.”
Further signs began to emerge “in April when we went on a family trip and when we were looking at the pictures I actually realized that his head was tilting to one side.
“That’s when I tried to feel the lumps and realize it was no longer two lumps it now feels like three lumps.”
As any good parents would do Williams-Morgan and her husband went searching for solutions, taking their son to several medical specialists, but in her words it amounted to “a lot of speculations and a lot of tests” without ever reaching to the source of the problem.
“They were all coming back negative,” she recalled of the battery of tests carried out on her son. “His blood works look good, chest x-rays were OK, they didn’t even had cancer in their minds.”
In her desperate quest Williams-Morgan said in December 2018 she reached out to a friend who is studying to become a doctor. After sharing her frustrating eighth-month ordeal her friend shared the information with his professor. Arrangements were then made for Raje to be examined with tissue and blood samples removed and sent to an overseas laboratory. Finally a definitive diagnosis came back, but it was not the kind of news the family was anticipating.
“They did a number of tests. But then they did a test and they found Sternberg cells… because the one thing that was consistent on all the tests that he did is lymphocytes in his blood and it was like at 1,400 and the range that it should be the highest was seven hundred and something,” she said.
By May of this year in they could no longer count the number of lumps on Raje’s neck. The lumps have all morphed into a big mass. In July he did a biopsy which later confirmed Hodgkin lymphoma.
“His spleen, his heart, his lungs, his groin, every single area where he had a lymph node he had a tumor,” she said in a distressing tone.
The cost, as you would imagine, is exponentially high. Williams-Morgan and her husband, who is Raje’s step-father, started doing some research online which led them to a Canadian-based medical group that caters specifically for persons with such disease. The group was willing to help and arrangements were quickly made for them to make the trip overseas. When they got to Canada and Raje was examined they were told that the cancer “was at a stage where it cannot be treated”.
“They think that it is spreading way too fast. From the time of diagnosis in July… it continues to just multiply,” she said, noting that treatment in Canada would stand to cost them J$12 million.
Raje stays positive
Despite the unimaginable nightmare Raje’s demeanor remains positive. In fact his almost undiminished chirpy spirit is what gives his parents and other family members hope. “He doesn’t look like he’s sick, he doesn’t talk like he’s sick. He’s now in isolation and he has a spirit that you can never believe. He has to be locked away from other children… but he’s so happy. He has this joy that even I don’t understand it. I look like I have cancer more than him. But there are times when he is in pain and it’s very hard,” said Williams-Morgan.
Raje is an “above average student” who remains among the top-10 performing students in his class despite faced with a life-threatening illness. He has taken the initiative to create a YouTube Channel to inspire other children with the same disease.
“He’s aware of his condition and sometimes he does get down and worry like ‘he won’t get the chance to see his brother grow up’,” she said.
It’s a battle that Raje, as young as he might be, seems determined to defeat. And like his family they are just as determined because ‘once there is life there is hope’.
“We are still not giving up. Our doctor, she came up with a protocol and we are working with it. We are still praying, we are still going through, we are just leaning by faith,” his mother said.