Blessed are those who find wisdom and those who gain understanding
Proverbs 3:13 (NIV)
It was the morning of the 15th of February 2005. Another morning I will never forget. While my husband Noel was playing with my son Jabez (JB) he noticed the tiny lump under his chin. It was the size of a ten-cent coin. We wondered if he had gotten stung or bitten by an insect but on close inspection we realized there was no visible bruising on the outside.
We immediately took him to a doctor in the vicinity who said it could be a swollen gland as he might be fighting off a possible virus. He prescribed antibiotics and we were told to watch him for the week. During that week the lump grew to the size of a lime, we then took him to a well-known pediatrician who advised us to stop the antibiotics and watch what happened. His opinion was the same as the previous doctor, but he felt there was a chance that it could be something a little more serious. We watched it for another week but by this time it had grown to the size of a small orange.
JB started snoring loudly at night and his head had to be elevated to assist with his breathing. It appeared that the lump was also growing inwardly and had started blocking his air passage. The results of a CT Scan confirmed our greatest fear, (our son had a tumor) and he was scheduled for immediate surgery.
We decided to have the procedure done via a private hospital, so there was a lot involved in achieving the surgery- fundraisers, prayers and tears. We were told that they were only able to remove 80% and a sample of the mass would be sent for testing.
The results were devastating. JB was diagnosed with Lymphoma, which is cancer of the lymph glands. It turned out that this initial diagnosis was incorrect. Thankfully, Dr. Bodkyn, a Paediatric Oncologist at Wendy Fitzwilliam Hospital, Mt. Hope, was able to pick that up right away. The bottom line was that our son, then just 3 ½ years old, full of life, wanting to play football, doing well at pre-school, learning to swim, well behaved, and absolutely brilliant - was diagnosed with cancer…
JB was later diagnosed with Alveolar Rhabdomyosarcoma - cancer of the muscle tissue. His own was in his tongue and a very aggressive strain of the disease. As much as we didn’t want to believe it, we did several checks which all revealed the same diagnosis. JB went through many cycles of chemotherapy, radiotherapy and surgery to remove half of his tongue. His tongue was then rebuilt with stomach muscle.
Though the surgery was successful, JB lost his battle to cancer on March 24th 2007 at the tender age of 5 ½ years old.
On reflection we wished we had known about early warning signs and the different types of childhood cancer. Over the years of managing the Just Because Foundation many parents have admitted that they saw various “signs” but did not realize the seriousness of them. The expectation that it is something minor and would eventually go away is all too common, and there’s the regret factor to that. “If only we knew…we thought it was just the common cold…he got a bad tackle while playing football or we sent her to have her eyes checked.”
Part of our mission in 2019 is to bring greater awareness and over the next few weeks we will share information on the prevalent types of childhood cancer and possible warning signs. Sadly, many of the children we serve are diagnosed with 4th stage disease because of missed signs. These signs can be easily masked and mistaken for less threatening ailments.
Statistics: Then and now
11 years ago when JB died the stats showed 10 - 20 children being diagnosed per year.
Today the stats show that an average of 30 - 50 children are being diagnosed in Trinidad & Tobago and the Region.
In the 50’s blurred vision meant you needed glasses. Today, it could be cancer of the eye.
In the 60's walking with a limp was an old football injury. Today, it could be cancer of the bone.
In the 70's sleeping longer hours was tiredness or even laziness. Today, it could be a tumor in the brain.
In the 80's unexplained fevers and pain were signs of growing up. Today, it could be cancer of the blood.
In the 90's a pain in the side may have been appendicitis. Today it could be cancer of the kidney.
Today a swollen stomach could be a sign of cancer and not just worms as in previous years.
In the same way women are advised to have their pap-smears and mammograms done and men their PSA tests, we are asking that you have your children do a simple general medical exam annually.
We also ask that anyone who has a child or children in your immediate circles: parents, aunties, uncles, grandparents, teachers and caregivers, please pay close attention to their nutrition. If these children display any of the symptoms listed above or if these symptoms persist, please seek medical attention as soon as possible. This is not intended to create fear, panic or paranoia but to serve as information and caution.
Please remember, Early Detection Saves.
Chevaughn Joseph
The Just Because Foundation is a non-profit pediatric cancer support organization in Trinidad & Tobago established by Noel and Chevaughn Joseph who lost their 5-and-a-half-year-old son Jabez “JB” Joseph to Alveolar Rhabdomyosarcoma, a rare form of childhood cancer, after a two-year battle. They provide emotional, practical and social support for families of children with cancer at absolutely no cost. If you're seeking advice or words of encouragement to these courageous children, please reach out to the Just Because Foundation.
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