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Sharing this story will hopefully help other individuals as well as their loved ones who are experiencing the same pain, shock and ultimately facing a long journey with similar difficulties: I can only hope your story has a happy ending as ours does.This is the true story (penned by a younger sister) which Debs as the Sufferer and us a family went through. We can only hope and pray that it inspires and motivates people in all walks of life no matter what their battle.
At the innocent and tender age of nine, after suffering through two years of unbearable pain located in her lower left ribcage, doctors finally discovered that our little angel Debs had a rare form of Cancer known as Ewings Sarcoma and ultimately the prognosis was a death sentence. For the two years leading up to this diagnosis, doctors and specialists had decided and presumed that my sister was suffering from a ‘physcosomatic illness’ and was using this pain as a play for attention. The reason I am telling you about this is because it occurs far too often and is absolute nonsense and of course another crucial point to this story; which I will explain later on in this blog. I have grown up in a family where love is given freely and equally, even when Debs was incredibly ill my folks showered my older sister Bronni and I with the same care and attention – at the age of 33 I still believe I am a princess because my folks tell me so!
Coming to back that fateful day and diagnosis – Ewings Sarcoma is a form of cancer which usually affects the long bones of the body, mainly the fibula (long bone in the upper thigh) and unfortunately this grotesque invasion of this innocent child’s body is a type of Cancer which comes with a feeble 2% survival rate. For my sister, my angel and best friend, the Primary tumour embedded in her ribcage and infiltrating her tiny lung, had been given the chance to grow to the size of a large orange.
Unbeknownst to us at the time, this was the beginning of a 24 year journey filled with countless operations, treatments and hospital stays. BUT On the day of diagnosis Faith kicked in and we all stayed steady and strong and rooted our belief in the Scripture given to my amazing mum and our Family Rock. 1 Peter 1 vs 6&7 6 ‘Wherein ye greatly rejoice, though now for a season, if need be, ye are in heaviness through manifold temptations: 7 That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ’ this was a promise given by our Heavenly Daddy. Not that the battle would be short and easy, but that there would be many mountains to cross yet He would give us, and most importantly Debs, the armour to fight and come through on the other side a conqueror. We prepared, we grew closer and we knew Cancer was Limited and could not steal this beautiful child and sister….. No matter how hard, rocky and narrow the road would be.
The first operation took place and the primary mass was removed, along with three ribs and a quarter of Debs lung, her little abdomen reconstructed with wire ribs and steel mesh. Three years of Chemotherapy at the Joburg general hospital followed… Amazingly enough, or should I just say because Debs is Debs, the chemo made her sick only once on the very first day, and then it was greasy food and salt and vinegar chips all the way. And still my amazing sister kept her rosy cheeks and bright and cheery disposition, supported by a Heavenly sent angel of a Mother who slept in a chair next to her child every night and watched over all the other little bodies in the Cancer ward, with love and care. These two were a light to everyone from the beginning of this journey up until today.
I was just five at the time and being as close a family as we are myself, Bronni and my Pops would be at the Johannesburg Gen – known for its amazing Paediatric Oncology ward and Doctors – everyday until late into the night. Only to return home to what my Dad believed was the most sustainable meal – Peas, Beans and Chops! It is no wonder Bronni has turned into such a great cook as we certainly could not survive on that every evening!
During her second year of chemo, Debs discovered a small protruding bump on her skull. The Chemotherapy was not working and a dreaded secondary tumour had grown. With Ewings Sarcoma when a secondary growth of these rapidly multiplying Cancer cells appears, they are said to spread like wildfire through your body. The difference was we had the best fire-fighter in the world on our side; yes our Heavenly Father could put out anything from a tiny ember to a blazing building.
Faith again kept Debs and the rest of us going and already miracles were happening – these tumours generally only appear when they are too large to “fix” and pain is not a common symptom – Debs had pain, amazing!
However, just a year and a half after the initial diagnosis, the Doctors called my folks and this innocent, strong and beautiful child into a cold hospital room and told them it was a matter of months, weeks or even days before our sis would lose her life.
That day is etched, carved and stamped into my memory forever; I was seven, Debs eleven and Bronni thirteen years old. Driving home from the hospital my folks, Bronni and I were beyond devastated, gutted, heartbroken and absolutely helpless. My Mother sobbed, my Father roared with fury and then gulped down tears – helpless in the fact that as a man he was physically unable to do anything for his child. My father was and is incredible in his strength as a man and his care, love and selflessness in providing for his family. Bronni and my worlds were ending our pillar of strength would soon exist as only a memory. Sitting quietly in that car Debs was calm and at peace, deep down inside she knew that she would be victorious and with an amazing amount of Faith and strength hard to fathom of a child at just 11 years of age, Debs calmed us all down and informed everyone then and there that she was going to win this battle with Jesus. A document was signed, and her name was once again written by her and God in the book of life.
Despite the medical doom and gloom and more pro quality than quantity of life, the Doctors, who by now had fallen in love with this little hero, decided to take a chance; instead of letting my sister die they decided to try a course of radiation. The result – after two years, this twelve by two centimetre invasion of her tiny skull, had grown only 2cms! The doctors could not believe it – just as she said she would be, Debs was still alive and the mass had grown so slowly – a Medical Miracle was declared and a decision to operate made. The now giant mass would be removed along with a large section of the skull on top of Debbie’s head. A further miracle occurred during the surgery, my amazing mother prayed beforehand that the tumour would be encapsulated between the lobes of the brain and would not have penetrated the brain at all, the first thing the surgeon Peter Biel said as he came out of surgery “Wow, I managed to literally lift the tumour out as it had not invaded the brain at all”, which of course would have caused brain and nerve damage. Chance? No a Miracle? Yes.
For the next two years Debs walked around with a “hole” in her head and no protection – with this piece of skull missing she had only a layer of skin protecting her brain. Our little angel sister and child donned just her rapidly multiplying Faith.
Alas and sadly the radiation and surgery had not worked entirely as one microscopic cell had been left behind, and was able to travel through her bloodstream and form tumours where it pleased. A new malignancy had formed; again a bump and pain were prevalent, however this time, smaller masses kept on popping up on the margin of the initial tumour on Debs’ skull area. After copious amounts of radiation, hours of discussion and prayer and on a bit of a whim, we decided to take our sis to Cincinnati, Ohio where my Aunt and Uncle, Sandy and Steven Amoils are medical doctors, and have access to the best Surgeons and Oncologists in the world – and let it be known the kindest and most compassionate men and women whose hands we had the joy and peace, of placing our Debs life in.
Radical Surgery was decided on as the only option. The latest growths were removed and reconstruction of my darling sisters head begun. Using a vein from her calf, skin from her thigh, a large muscle from her back and titanium, my precious sister’s skull was reconstructed: this took thirteen very long hours. Surprising not only us but the surgeons in America, Debs was up and at our Aunt’s graduation within a week. The Doctors even discounted there charges as they were so inspired by this child.
But sadly this was not the end of her battle. A year later following a bump and pain yet again, we discovered a tumour on Debs’ knee and pelvis, refusing to have her knee joint removed as was recommended. Debs decided enough of trying to make her the bio-mechanical woman and opted to go for radiation. The course worked on her knee dissolving the mass completely but not on her pelvis and a few months later a hemi-pelvectomy was performed removing a large section of her hip bone and replacing it with steel plates for reinforcement and support. These were later removed as they did not graft and Debs now has no support in her pelvis – this is the part of your body which supports all your weight – and people still stare at her very slight limp – it maddens me. Debs was flat on her back for 6 weeks and still no complaining. I always say it’s amazing how these things do truly happen to those of us who can handle it. I think I would have given up years before if it had been me and I’m sure plenty agree. Thankfully and finally after this last surgery the cancer HAD BEEN BEATEN but the repercussions of all this dreaded disease have been ongoing and plentiful:
During the twelve years of Cancer so many unrelated problems occurred linked to the operations and treatment.
One of the chemotherapy drugs, adreomycin has a strictly no exercise rule this was totally unbeknownst to us and Debs was an unbelievable swimmer. After a gala one night she went into heart failure and will be on chronic heart medication for the rest of her life although her heart performs far better than the cardiologists expected – no surprises there, she does have the heart of a warrior. The wire ribs and steel mesh which were used to reconstruct her little rib cage, where not stable and one of the wire ribs came loose and lodged itself one millimetre away from Debs’ spinal cord. Once again, thinking this was psychosomatic; Debs was put in a back brace – squashing this wire invasion further into the spine. After discovering the actual cause of the problem, Doctors could not and still cannot believe she is walking today, yet again a Medical Miracle had occurred. Then ever the fanatical Bayvel family rugby supporters (our father was a springbok scrum-half and so having no sons we were taught rugby in our cots) during the 95 World Cup South Africa vs. Australia opening match Debs, in excitement jumped up and sent a wire rib straight into her Scapula. We still tease our Dad that this is the only rugby injury his offspring will ever give him!
And yet through these struggles, Miracle after Miracle has occurred. Countless surgeries have been performed where tumours have been thought to exist, but after much prayer before the surgeries, these have been found to be healing fractures, and yes, the medical world was amazed again. When there is no scientific explanation you only have to glance upwards to know the answers.
In the twelve years that Debs has been clear of cancer – medically if you are cancer free for five years you are in remission – she has undergone more than fifty two reconstructive operations, has suffered a mild stroke as a result of the copious amounts of radiation and because of the operations on her skull and the fact that a skin graft from her thigh was used: she will never have her own hair and has to wear an external prosthesis attached to dental implants which stick out of her skull – and us girls worry about cellulite and make-up.
Debs had to have a semi-hysterectomy last year and so can never have children herself – this was her choice due to complications caused from the radiation being so close to her womb and the fact that the hormones produced during pregnancy can cause a cancer flare up. If one day I have to be a surrogate for this angel and hero, I will do so happily knowing I can give just an nth back to her of what she has given me.
The most beautiful thing though and the reason behind this story is that through everything this angel has endured, she has never felt sorry for herself or been resentful towards others for being what we see as ‘normal’ – I keep reminding her she is by far the most normal and grounded person I know. Debs and our mom, Denise, have also touched the lives of so many children and adults suffering with this cruel disease and have given them hope that it can be beaten. Debs says if she has had to have gone through all of this just to touch and inspire these lives she would do it again in a heartbeat.
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My mother and father are also the most amazing people. I don’t think one ever knows what it feels like to have a sick child until you experience it; being totally helpless and having nothing within your reach to help. They have also never neglected my older sister Bronni or myself which is a rare occurrence in these situations. Sitting here writing this story makes me unbelievably emotional for what they have been through as parents but yet so grateful to have such a wonderful family. Thanks Mom and Dad, you are our pillars of strength and to my older sister Bronni for sometimes having to look after me like a second momma when times were tough, you are a shining star. But most of all to the most inspirational sister, Debs, you are an absolute angel sent form God to brighten up and inspire others lives.
And to our Heavenly Father, your eye always was on the sparrow. Thank you for all you have done for us. You knew your plans for us before we were born and even though we may go through physical, emotional or mental pain, those plans you have for us to prosper and reign victorious over any battle give us hope every day!
My sister, our motto from day one “Against all Odds” will one day be the book I write and your story that reaches millions. You have been through this to share it with the world and show them that your past, your upbringing, what happened before and the pain endured does not need to determine your future or leave you an old and bitter person. You have shown that you become what you want to become and that you can be a better person not because of, but in-spite what you have been through. Your story has meant we have a family so close and loving that we are never alone. It has meant that we are all blessed with a Faith in God and the gift of eternal life, as we have seen miracles in your life which cannot be explained through rational thought, science or just plain mind power.
You have shown that Cancer can be beaten even if you go through a 12 year battle. You are more than a conqueror.
This year my lovely and precious one, in December we will celebrate year 17 of you being Cancer free, I write this with tears flowing freely. I am blessed with having you as my best friend, soulmate, confidante and roommate. How lucky can a girl be to have a sister like you? I thank God every day that He gave you the gift of life and that this life is aligned so closely with mine. When I look at you and after reading this story and when I get my act together and write your book, people will know that they need not look at you or others – who have or are fighting a disease or whose body shows any physical disability – with pity but rather with admiration and respect.
You are a hero, a legend, a Warrior Princess; Beautiful beyond words on the inside and the outside. You are the epitome of what each and every person should aspire to be.Fearless and Brave – Loving and Sensitive.
17 years my little one – How great is our God!
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