Joshua, my only child, was born by emergency C-section, on a cool Spring day in 2004, at 28 weeks gestation, weighing a healthy 1200g . I say “healthy” because the average 28 micropreemie’s average weight is 900g. During his 6 week hospitilization, he had one blood transfusion, three hernia operations and suffered jaundice, to name a few of the exhausting hurdles. I don’t think he enjoyed the noise of the NICU so he fast tracked himself out of the hospital to continue his life at home. Fourteen years followed with only one other hurdle of Josh having to go back to hospital, with the Roto Virus. No broken bones, no learning problems, nothing. A perfectly healthy and emotionally balanced child, who made lasting impressions on everyone who met him.
Fast track to 2018 and Joshua is half way through his first year in high school, loving life, and enjoying playing the Cello, progressing with Karate, and filling his afternoons with school activities. In June of last year he started complaining of occassional headaches, which initially I thought could be due to growth spurts, seasonal changes, stress of his first High School exams, and possibly dehydration. One by one we eliminated the above, and in August, I took him to the Doctor for a full assessment, including his eyes. She thought perhaps it was sinus related so we took medication. A month later there was no change and so back we went. A different set of medication and talk of setting up an MRI scan, “just to be safe”. During the third term school holidays, we went away on our annual break, to Mykonos in Langebaan, Cape Town, where both Josh and I felt a bit lethargic, but put it down to exhaustion, and spent most of the time relaxing. Our holiday was cut short by the sudden death of my Boyfriend's Mother, as well as the death of our family dog.
The next month I spent operating on robot mode as the death of my Boyfriend's Mother brought back the memories of my own parent’s passing. During this time I took Josh to the Chiropractor, just to make sure that his ongoing headaches were not spinal related. On the second visit, Friday 2nd November 2018, the Practitioner urged me to have Josh’s eyes checked one more time, so off we immediately went to make the appointment. The appointment was for Tuesday 6thNovember at 2pm. This is when my world, as I knew it, changed.
The Optician was thorough. She spent a long time looking at the back of his eyes, then at mine, and then at his again. I could see the worrying look on her face, and when she said that she wanted an Opthamologist to urgently see him, my world slowed down. I will never forget what happened next, I said that I was just going to buy a sparkling water and she said “No, he is waiting for you now”.
I have no idea how I drove to the Medical Chambers, but remained calm for Josh’s sake. Imagine a Swan swimming in Hyde Park, so calm and graceful above the water, but take a look beneath the surface, and you can only imagine... This was how my brain was racing.
The Opthamologist immediately took a scan of Joshua’s optic nerve, which showed extreme swelling. He then advised us that he was immediately booking Josh into hospital for an MRI scan and lumbar puncture, the following day. The Hospital Admittance Staff, were waiting for us, and on completion of the necessary forms, I was informed that the MRI Department were, in actual fact, staying open to do the MRI scan immediately. Whilst Josh was having his scan done, I asked when the results would be in, and the Nurse said, “Immediately, the Neurologist is waiting for them”. Now I was really on high alert, it was already after hours, so why the urgency? We booked into the Ward, and patiently waited for the Neurologist.
The 6th of November 2018, at approximately 6pm, came the news that would forever change the road forward for my little family. “Your Son has a brain tumour”. Not a “I am sorry”, or, “Would you like to sit down?”, nothing. And that is how cancer entered our lives, cruelly, and without warning. From that second on I had to make a decision, dissolve in a flood of tears and become a Victim, or remain a shining beacon of strength and hope for my Son. My beautiful, gentle, little fighter, microprem. It goes without saying that I chose, and still continue to choose, the latter.
The immediate problem my Warrior faced was increased cerebral fluid blocking one of his ventricles, so surgery was performed to divert the fluid internally. This alleviated the pressure behind the Optic Nerves, and Josh proudly showed any interested parties his war scar. The following week, Tuesday 20th November 2018, the Theatre was cleared for the whole day, to perform the most complicated brain surgery. As with everything in Josh’s life, his mantra is “Go big or go home”. A procedure which should have taken six hours, turned into a harrowing ten hour surgery. The Pineoblastoma, (a specific kind of tumour), growing since before he was born, is located on the Pineal Gland, which is the size of a rice grain, and is situated almost in the dead centre of the brain itself. Any wrong turn and he could have possibly died, or, remained a vegetable for the rest of his life. The feeling of utter helplessness took me back to the journey in the Neonatal Intensive Care Unit fourteen years ago, as once again I had to place my child’s life in the hands of a Medical Team. I stood outside the Oncology Building, looking up, and focusing on the windows I thought he was in, and prayed. I asked for a sign that everything would be ok that day, and just like that, a bird flew out of nowhere, tweeted, and landed in a tree. Fast forward to when the ICU Nurses came to the waiting room to announce that the operation was over, and that Joshua would be returning to the ward, and they warned us that he would be ventilated, while my inner voice was laughing, and saying “No he won’t, he wasn’t when he was a Prem, and he damn won’t be now”. True to form, he was wheeled in without the ventilator machine, and only had a flimsy oxygen mask, which I thought to myself, “I give that an hour and he will remove it”, and true-to-form an hour later, Josh took it off. For his own safety, it was then decided to give him the nasal form of ventilation, hooked around the ear, which, of course, was again gone by the following day, as expected :)
As a Mother, to see your innocent child lying in bed, hooked up to machines with wires coming out of his neck, head, arms and every other conceivable place on his already slim body, is enough to make the most hardened person buckle, but I am his Mother, and needed to remain strong and courageous, just like Josh. All I wanted was for him to open his eyes and talk, but life isn’t easy and remember, “go big or go home”. When Josh did wake up, he couldn't move, speak, eat or even remember what transpired five minutes ago. His neck was pushed to the far left and he eyes were facing the same direction. He was alive, that's all that mattered, and he could swallow, and over the next few days I taught him from scratch, to train his brain to recall his long term memory, bring it to the frontal lobes and remember how to move, swallow and talk.
Joshua crept into each and every Caregiver’s heart in the Hospital, ranging from the Surgeon, to the Catering Staff, and when he walked out of the Hospital, there were emotions ranging from tears to big smiles of joy.
The Pathology report indicated that Joshua’s tumour was a malignant, Grade IV Pineoblastoma. Unfortunately the Surgeon could only remove around 70% of the mass due to the balance calcifying on his brain stem, so we were instructed to go for a consultation at a Hospital which specialises in Academic Oncology Research. If I thought our journey up until now was a nightmare, nothing prepared me for this. We were told that Josh would have to endure six weeks of Cranial Radiation and Chemotherapy thereafter. Despite my many questions, the Professor and her “Team” remained elusive. I later found out that Joshua’s Tumour represents less than 1% of the world’s population, and it is my belief that they wanted him as a “Case Study”. Think about it, here is a perfect example to put under a "microscope", throwing whatever you can at this “disease”. Like pulling the trigger on a shotgun hoping to hit the target. He had the “mask” for radiation made, and four marker tattoos placed. Next was the “mapping”, for the Academics to discuss how much Radiation and Chemotherapy Josh would need. I question everything, and of course, now more than ever. I began researching like a Woman possessed. The very last thing I want is for my strong Warrior to be incapacitated by the cruelty of Radiation and Chemotherapy. Suddenly, as if like a miracle, an Alternative Healing Centre presented itself to my family. The pure love and commitment to him and his fight going forward made me finally cry, this time tears of relief. He was not treated as a science experiment, he was “seen” as the fighter he is, a beautiful soul, a positive energy source. As we walked out that day, I felt the fear lift off my shoulders, because I finally had hope. I hadn’t thought about the cost at this point, all I wanted was to savour the joy in my heart, that my life, my soul, my Josh, would be helped in the manner that he deserves.
I have had to put my pride to one side and trust in my fellow mankind that although life is busy and cruel, that we all remain constant in one avenue, our love for each other, and so I humbly request that each and every person who has taken the time to read Josh's story, finds it in their hearts to contribute to his new journey.
Firstly, I do not want anyone to pity our family, for it is my belief that we have been chosen to walk this path. Chosen to learn and to hopefully teach others, that no matter what, never lose hope. This sudden & recent journey has not been an easy one, and we as a family, understand the path has really just begun. Josh's story is not about being a victim, it's about determination and a Mother’s unfailing love for her Son. For others to be able to relate & understand the bond, the desperation at times, the daily struggles that Josh is fighting & overcoming like a true Warrior, in a situation that few can, or would, understand, unless they had, or are currently walking, a similar path.
Secondly, no one asks for cancer to creep into their lives, and neither is it ever expected. It is the unwelcome ghost that knocks on your door and then enters your world of peace and love with a violent force that no one would ever wish on their worst enemy.
Finally, at no stage have we questioned “why us?”, in Joshua’s words, it has always been “Bring it on”, a true reflection of his everlasting grit and determination.
Whilst the cost of his hospital stay and two brain operations is largely covered by medical aid, his further & ongoing treatments, leaves a shortfall of approximately R200 000.00, which we have to try and raise in the best way we can. I would like to thank everyone who has taken the time to read this and that if you can see it in your hearts to assist in any way, that we as a family would be so deeply grateful. You can also follow Josh's journey on instagram, just look for the handle: _teamjosh or hashtag #teamjosh for any current details on this Warrior's progress.
Thanking each & every person, near and far who has been a part & will continue to be a part, of Josh's journey. Positive is the only outlook.