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My son was a healthy boy that loved playing outside with his friends, riding his bike and seeking new adventures.
He is a very intelligent, sensitive yet outspoken, generous boy with the biggest hart and warmest smile. He is crazy about rugby, hockey, karate and swimming. He loves school and all of his friends, whom he misses terribly.
Maths, is by far his favourite subject. He won gold, 2 years in a row at the Semas Maths Regional’s competition. He was only 5 years old when he won for the first time.
He loves learning and reading about nature, science, space, how to build things and – definitely how to break them :-) .
He tries very hard to learn how to play songs on the guitar -
Then he tries even harder to remember to sing the songs that he made up the previous day.
And, of course, he loves his Best Buddy Bailey above all else.
Since Bailey, a rescue pup, joined our home, they have been inseparable ever since. I think Bailey came to rescue us…
But my little boy’s life quickly changed from playing outside with friends to getting used to needle pricks and hospital visits. Despite of it all – his love for Jesus daily grows stronger and he is fighting hard to keep his loving smile.
On 9 May 2020, my son woke up one morning with excruciating body pain and a swollen elbow. The GP referred him for a sonar and x-rays – which revealed possible reactive arthritis and inflammation around the elbow.
Afterwards I learned the sonar report stated:
“There is confirmation of a joint effusion. It is non-specific. Further investigation recommended.”
No investigation was done.
Another GP at the same practice treated him on 5 June 2020, 4 and 25 August, we had a repeat of the afore-mentioned on these different occasions again in different joints.
After cortisone the pain was gone and he slowly became weaker and could not partake in normal activities any longer.
During the these passing weeks, emails was send to the Doctor, asking various times and listing a lot of options, trying to find out what is wrong with him since his pain is getting worse and started to experience fever too. I insisted on blood tests again and we were referred to a Professor who specialises in Paediatric Rheumatology.
From my understanding, the Blood tests shown increased ESR and CRP levels.
We met the Professor on 15 September 2020 and after several hours of answering only questions asked by two Rheumatologist Specialist Doctors and after a sonar was done by the Professor, my son was MISdiagnosed with Juvenile Idiopathic Arthritis, an auto-immune disorder where the immune system malfunctions and attacks the joints.
I asked if he could be admitted for a MRI – but we were told to wait until the medication had time to work, and would’ve discussed it at our follow up appointment with the professor on 17 November which never materialised.
The professor send us home with only a pamphlet, advised us to join the JIA Facebook Group and prescribed Salazopyrin 500mg and Austifen 400mg (3 x p/d) to my 8 year old son.
From what I understand these are extremely high doses and should have relieved his pain. Well, it didn’t and he gradually became sicker, his pain started to get worse, accompanied with fevers and vomiting.
This, they called “flare-ups”; it is when inflammation builds up in your joints. It became so bad that he could barely move let alone walk.
I couldn’t get hold of the Professor again, nor did he answer my messages or emails. I have asked the Professor to send me a full report on his diagnoses – which he never had.
After failing numerous time to get hold of the Professor, I contacted the GP to get the report directly from the Professor – to no avail.
Wednesday, 1 October 2020, my son was extremely sick, vomiting, tummy ache, lower back pain and he had a fever. I took him back to the GP (3rd Doctor at the same practise) and he was diagnosed with gastritis and was prescribed Nexium.
Friday evening, 3 October 2020, he was so sick that he could barely move, he was admitted to hospital on Saturday, 4 October. After various blood tests, he was yet again MISdiagnosed, this time with Systemic Juvenile Idiopathic Arthritis. This basically means, that not only is his own body attacking his joints, it is also attacking his organs. X-rays revealed erosion of the bone in his shoulders and the heart echo showed no abnormalities.
Monday, 5 October - The day that our lives were turned upside down.
My son’s organs appeared normal during the sonar scan until the doctor identified the huge mass above his adrenal glands.
Tuesday 6 October - The CT scan confirmed that it is Neuroblastoma and it had already spread into his pelvic bones.
An ambulance transported us to another hospital where he was immediately taken into theatre and a port inserted. A biopsy was done on the tumour and in the bone marrow.
This Surgeon confirmed that he was MISDIAGNOSED with S/JIA and that it was cancer all along.
He woke up in ICU with a smile and face all the uncertainties and tests with thumbs up.
After various consultations with 3 GP Doctors, 2 Rheumatologist Specialist Doctors, a Professor in Paediatric Rheumatology and a Paediatrician - the results of the biopsies, bone scans and MIBG report confirmed Stage 4 High Risk Neroblastoma cancer which metastasised throughout the skeleton and into the bone marrow. Although the prognosis is bleak – we know that God is in control.
Friday 9 October, he started his first chemo session…
Finally after a week in 3 hospitals - he was welcomed home to various surprises from his school and friends.
Thank you for all the love, support and prayers that we have received. I appreciate it from the bottom of my heart.
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