Our son, Keanu, was just like any other two-year-old toddler, one big bundle of energy, jumping, running and throwing tantrums.
On the 2nd of October 2017 he started limping – which we ignored, thinking he’d just bumped his foot in the rough and tumble of his daily life. But by the 4th, the pain had worsened, and we thought it might be growing pains. Thankfully, mother’s instinct took over, and I took him to the emergency room, just to be sure.
He was admitted immediately, as the doctors thought he might have septic arthritis, and he was rushed to surgery the following day to drain his hip of fluid.
The orthopaedic surgeon was puzzled, as the fluid was clear and there was not much of a build-up. Keanu then developed an extremely high fever, which didn’t subside with treatment. At this stage, I would never have imagined that ‘the monster’ was lurking in his little body.
MRIs, X-rays, bone scans and finally an MIBG scan, together with a bone marrow biopsy, confirmed our worst nightmare. On Friday the 13th of October 2017 the most horrible news hit us: our child was diagnosed with neuroblastoma cancer, and he was Stage 4 High Risk already. He had a tumour mass in his chest, behind the aorta, against his spine; a tumour on his right adrenal gland, and a 65% bone and bone marrow infiltration. It killed me that this small body was infested with the disease!
There followed an almost three-week stay in hospital, where I witnessed my son deteriorating daily, from a minor limp, to such excruciating pain that he was unable to walk anymore. And the doctors indicated that he would not make it.
My heart froze and the world ended, right there. The nurses led me to the back office. I was screaming and cursing, “Why, why, why, God, my only child? What have we done to deserve this?!”
By the 19th of October 2017, Keanu was rushed by ambulance from the private hospital where he had first received treatment, to the local government hospital. Unfortunately, there is no private paediatric oncologist in South Africa, and this was our best bet.
The first chemo – poison, really! – was administered on the 20th, the first of eight long sessions stretched over a three-month period, with a three-day stay per session. The side-effects were horrific – losing all his hair, losing weight, nausea, mouth sores, admission with fevers, three blood transfusions and platelets, with daily injections to boost his neutrophils (white blood cells). He had it all, but we were amazed at how strong this little warrior is. His pain subsided after the first chemo, and he was soon running and playing again, like any boisterous toddler. I almost have my child back again, except that he looks like a little fairy out of a children’s story.
The past two weeks have been the most nerve-wrecking, emotional rollercoaster ride – EVER! We’ve had post-chemo evaluation scans, biopsies, MRI, CT and MIBG scans, together with a bone marrow biopsy.
The scans provided a measure of comfort:
MRI – Indicated growth of adrenal gland tumour
CT – Indicated decrease of chest tumour
MIBG – Indicated no more bone involvement
Bone marrow biopsy – still awaiting results. We believe that, by the grace of God, this WILL be negative!
Keanu will still receive a stem cell transplant, high dose chemo, injected together with healthy stem cells, and open chest surgery to try and remove all the tumours. Following this, we need to take him overseas to receive Immunotherapy to increase his life expectancy from 40% to 60%. Every percentage is worth fighting for. Once again, there are limited resources to treat this type cancer in South Africa, with most ground-breaking therapies and medicines never to reach our shores – this is truly heart breaking!
Without medical aid cover, and to receive treatment abroad, we need R3 million. Thus far, Total, our friends and family are going out of their way to fundraise for us to achieve our goal. We’ve already reached R500 000, thanks to their efforts!
As the Communications Manager at Totalgaz, I have not been able to go to work, as I had to be at the side of my two-year-old, and sleep alongside him in hospital. I was worried about my work situation, the financial implications, and my world as I knew it felt like it was ending.
Totalgaz was under a new Managing Director, Andreas Redenz, who doesn’t really know me, and, I was determined to impress him – and now this!!
But I needn’t have worried. I have been blown away by all the support from Totalgaz (and Total), with my colleagues visiting, sending support messages of encouragement, and prayers. We are so wowed by the continuous support – Thank you, Total!
Thank you to each and every one for donating leave days, and entering raffles initiated by management to assist us with the astronomical medical bills!
The road is still long, and we do not know if this ‘monster’ will creep back into his bones and marrow again. The future is unclear, but we have to believe, fight and change the way we live, with a healthier lifestyle and diet.
Most important of all, I have learned through this that I will never complain about anything again. Everything else in life is insignificant compared with having to fight for your only child’s life! This has made us humble.
I will keep you up to date on his (positive) progress.
Much love from Keanu’s mommy,
Colette van de Giessen
* Neuroblastoma (NB) is a type of cancer that forms in certain types of nerve tissue. It most frequently starts from one of the adrenal glands, but can also develop in the neck, chest, abdomen, or spine. … At diagnosis the cancer has usually already spread.
** For high-risk neuroblastoma, the-5-year survival rate is around 40%
*** Immunotherapy for Neuroblastoma. Immunotherapy is the use of medicines to help a patient’s own immune system recognize and destroy cancer cells more effectively. … A monoclonal antibody called dinutuximab (Unituxin) attaches to GD2, a substance found on the surface of many neuroblastoma cells
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