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This blog entry has been one I have been meaning to write for a little while now. It is an update on our Debs and is but an nth of her lifes’ tale.
I guess it has taken this long as the pain, heart ache and trauma have yet to wear off, and even though we have another happy ending… it’s still something our family; and especially my darling, beautiful sister Debs, never thought we would have to endure again. This was by far the worst experience we have had in your journey, even though you were ‘supposed’ to die at 11 and are now 38.
My heart aches and tears flow freely as these words are typed. But I will write it my angel, for those fighting the battle against Cancer who need to know what the power of Faith in our Heavenly Daddy and strength of mind against any dire and terminal medical diagnosis can achieve. Again and again as you have proved for 28 years, CANCER can be BEATEN.
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Most of all my angel sister I write this for you and for God…For another miracle He performed for your life saved again for having our daughter and sister still with us…
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My sister, my legend, my muse, my hero, my stability and the ying to my yang, my better half. I honestly thought that the book I was to write about your amazing, miracle filled life story “Against All Odds”, had its final chapter completed 17 years ago even though you have had many major and minor complications which followed your 11 year battle. What we didn’t know and perhaps even why, was that God had another plan and I was not meant to finish this book until the epilogue was finally ready to be written and my love, knowing how much He adores you and just how much you deserve, it is going to be a more beautiful ending then what any of us can anticipate. What we do know is that the final chapter has been penned in His book if Life.
My little one, here we go again another story from the life of a girl who amazes me each and every single day.
What an exciting start to our 2016, which quickly turned into something out of a Stephen King novel ( big eyes and a shake of the head with a grin). Sitting chatting in our favourite place with our Momsy and Pops – Madikwe, surrounded by the tranquil and magnificent African bushveld in an oasis our Dad has so graciously blessed us with being able to go to – being the closest of close families we are, we decided on a wim that we would all move to Cape Town. We wanted to be closer to our other part and older sis Bronni, brother-in-law Bruce, our adorable nephew Cole and soon to be but now 4 month old other little poppet of a nephew Cade. Dad had just retired, we work for ourselves and Johannesburg was no longer safe, we wanted out of the concrete jungle. We booked our flights, rented our house, sent our furniture and cars and on April the 1st we would be living our new lives in the beautiful Mother City.
Ha! April Fools it was. But sadly the joke never ended that day…
What started off with Debs feeling ill and having what we all thought was a bleeding ulcer turned into a tumultuous two month nightmare. If I get dates wrong, it is because the days seemed to all blend into one another during this time… but I will try.
Due to go in for a Gastroscope on Friday the 26th of Feb, we decided that instead of waiting we would rush our little Debs, who was pale and incredibly weak to Sunnighill Hospital on the Wednesday evening. I don’t think that anyone will understand how I can say this when Debs has been through what we will believe is ENOUGH, but God was opening a door that night to ensure that this precious girl would be kept safe and left in the best surgeons hands. Mom, dad and I waited in casualty, whilst the man and surgeon, who would become the one we knew we could trust with Debs’ life and a source of side splitting laughter on the darkest of days, examined our angel. Dr Leslie Fingleson – head of trauma at Sunninghill and a BRILLIANT surgeon – or ‘Uncle Les’ as he quickly became known due to each of us calling him some absurd version of his surname far too many times ( I even had to google his ‘real’ name now), booked Debs in and decided to do a Gastroscope the following day. Her hemoglobin levels were low and something was not right.
We call it a miracle and are again amazed at how our God works, as when Uncle Les did the scope, both ends, he discovered no source for the bleed. He did however find a hernia and decided that where Debs had had her hemi-pelvictomy ( one of the many body parts Debs has had removed), he would operate and remove the hernia and place pigs skin as a graft, around the area where Debs bowels were not covered by bone and caused her discomfort. Ahh Uncle Les .. Orthodox and using pigs skin, we even had a giggle at that
Still in hospital, brightening up the days of everyone around her, smiling, laughing, praying and being her incredible brave self, Debs went in for her 59th major operation.Two hours later Les came to find my Mom, Dad, Aunty Carol and myself in the canteen. First Debs our shining star had made it through the operation but had had a bad reaction to the anesthetic and her systolic blood pressure level had nearly dropped to the point of having to be put on a respirator. And then with just a few words uttered; words we thought we would never hear again… our worlds were about to be shaken up and our hearts broken again… tumour, strange looking cells, thickened colon…Cancer. 17 years free of that dreaded noose, and it was back strung tighter then ever.
Never one to not give us a sign that he loves Debs so very much and that his eye is always on this tiny sparrow, we did have a miracle during this operation. Les was going to in from the front to perform the procedure and at the last minute flipped Debs onto her back and went in through an old scar… if he hadn’t have done this, the tumour would have not have been found until it was perhaps to late.
But again the journey we have all endured, most especially Debs, had started again and the road ahead was filled with more bumps, cures and potholes than we could have thought possible.
Bronni our precious older sis and the one that makes up the third part of our whole, who was very pregnant, Bruce our incredibly caring and kind brother-in-law and Cole our nephew, flew straight to Johannesburg. One thing I can say is that as a family, we are not perfect and we fight and argue as any other family does, however our lives experiences have brought us so close together and it is something to be cherished and something so beautiful, that we can pull together and love each other so very much in times of tragedy and triumph. Misfortunes so often bring hidden blessings, that we just need to open our eyes and hearts, to find.
Tests were done on the area Uncle Les had removed and it was determined that it was an Adenocarcinoma – a malignant tumour formed from glandular structures in epithelial tissue. another grotesque invasion of Debs tiny body. This time totally unrelated to ‘Her’ Cancer which was Ewings Sarcoma, it is thought that this Adenocarcinoma may have been caused by all the radiation on Debs pelvis, treatment that kills a disease and does not stop working in your body for up to twenty years, which means it can eventually cause the same disease it sets out to destroy. The irony is not lost on any of us and let it be known it is not lost on the Doctors either.
It was then decided that after undergoing further tests to ensure this malignancy had not spread, Uncle Les would need to do another operation to remove my angel sisters right colon, her appendix and the pigs skin. Despite other surgeons insisting my folks and Debs go see an oncologist for a second opinion and perhaps chemotherapy and radiation, Debs’ wanted her days of thunderstorms over, as one cancer cell left in a body can travel as fast as lightening and strike wherever it pleases. So we prepared for another major operation. At this time my poor older sis, Bronni had to fly back to Cape Town due to the stage in her pregnancy and my heart aches for her as I cant even understand how much she struggled being apart from us during this time. She is a loving nurturer by nature and even took on the role as my second mom growing up when my amazing momma would sleep on a chair for weeks on end next to Debs hospital bed.
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Mom, dad, myself and Aunty Carol – moms older sister, and the ying to her yang who was never apart from us – became our Debs face to face support system, well us, and the one we cannot possibly compete with, our Daddy up above. And of course support came in with face time calls everyday from our Bronni and nephew and moms third part and other sis Sandi and our Uncle Steve Amoils ( both Doctors in America ). So many other amazing people visited I cannot even name them all … clients of mine, Aunty Dee, our dearly departed Fergie. Whatspp chat groups and prayer chains were started and updated daily and even when we didn’t respond to people, as you just sometimes cannot do when your mind is in that state of chaos, the love and prayers kept on coming…. Our Debs is well and truly adored and living with her I know why.
And so before this next surgery, to make sure that this dreaded disease had not crept in to her lymph nodes and liver we first had to go for CT scans and before this they have to inject a fluid to make the ‘resolution higher’ in simple terms . My beautiful Debs has very few surface veins left after having so much chemotherapy in her lifetime, and this day remains so poignantly etched in my mind, as I yet again watched nurses and doctors prod my sisters tiny body in search of a simple vein to inject fluid. I glanced down at my hands wishing I could give her just one of mine.. and yet she remained brave and strong and kind to these people. My Debs you astound me. As she was wheeled into that room and placed under a cold, metal machine which would tell the tale of her fate, my mom said to me and my aunt ” They will Look and they will not See”.. not from her mouth but a quiet whisper in her soul from God. Yet again we had peace that belies all earthly understanding and they did look and did not see anything! We were going ahead with the operation and nothing more had to be removed.
With one car left in Johannesburg, no Winter clothing (I think we now have shares in the Pink n Pay clothing department) and living 45 minutes from the hospital in no traffic, dad and I began what would eventually make up approximately 160 trips to the hospital as there was not one moment of the day we did not want to be there during visiting hours and when we left all we wanted to do was go home and not see anyone, even if we had to drive into the garage, reverse and leave again. My beautiful selfless mom slept on a chair next to her child’s’ bed as often as she could when Debs was not in ICU.
On the 9th of March, a very scared and incredibly emotionally and physically exhausted family sat in a hospital room with a girl going in for her 60th major operation after she nearly didn’t make it through the previous one.Our daughter, sister, friend and angel on this earth was smiling but also a little nervous. Would this be the last time we saw her? Would this be a final goodbye to my best friend in the world? I don’t even know how to put into words how we all felt and I simply cannot even fathom how Debs felt… tears stream again and these memories return…
And yet God placed His hand on all of us again, we were all somehow distracted, Debs was rushed into theater and Uncle Les, who by now had become emotionally attached to this little fighter, came to find us again in the canteen, before she was even in recovery – we love this man – and told us she was FINE! The operation was successful and the Cancer was gone. Tears of relief flowed especially from my fathers eyes… I will not forget that sight. Again this man who has protected us and saved us girls from everything even our own mistakes, had felt so helpless in not having anything within his reach to help his baby girl , his daughter and she was okay…. well for three days anyway.
Off the topic a little but importantly and a little reason I am updating people, is that even with modern technology and cellphones and social media updates we still have broken telephone syndrome and many people think Debs still has Cancer, she doesn’t, YET AGAIN SHE BEAT IT… Debs you legend! And Father God thank you for saving my sister again.
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We took our Debs home on that Friday and on Saturday, her and I spent a lovely day together, with our precious pooches , watching our favourite TV shows, with her lugging around a vacuum pump to close the wound on her tummy – another long scar, an open wound, a small infection; in this heroes life these are the tiny things, the things that in our lives would be major. But by Sunday morning our frail and beautiful Debs was in agony. Debs has the highest pain threshold of anyone I know, she has had bone removed without anesthetic and on this day she was screaming and shouting in agony. I cannot imagine the pain she was in, as a sore throat for me is enough to keep me in bed for a week. We prayed, we gave Debs painkillers, we tried to get her to sleep, but by that evening she was still in sheer agony and near collapsing and we again rushed her to Sunninghill Clinic. The next five weeks would be the worst of our lives.
Debs was booked in and my mom again stayed with her, dad and I drove home both silently lost in despair.By that Wednesday after three days of pure agony with no respite or sleep, our little treasure was booked into ICU. Debs is more OCD then any of us with cleanliness, and we can all be pretty bad, and that morning when dad and I arrived she did not even want to brush her teeth. My heart broke, as this to me who knows my sister so well, was a sign that she had had enough and that the end was near. Debs is my life, my heart and losing her would be like losing half of my physical body and my soulmate.We were all shattered and at to this day I do not know how Debs had made it through those last four days in so much pain – you will understand her sheer determination and strength a little further on, when we discovered what was wrong.
The reason for being taken into ICU was to have her fed TPN through a central line, be looked after 24 hours a day and be given morphine to take away the pain. Uncle Les also thought Debs may have had a blockage – this would be where the colon was joined back to the small intestine and would mean no food or water could pass through and is pretty common with bowel operations. Nothing common for our Debs though. X-Rays showed no blockage and so we had to wait five weeks for the inflammation in the bowels to ‘go down’ to make sure this operation had worked. I think at this stage Uncle Les was flummoxed as he could not even give us a reason as to why Debs was in pain, or if she would be okay and quite honestly what the problem was.
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Three times a day we would visit my sister, awake and conscious surrounded by people in coma’s and terrible states. Three people passed away whilst Debs was there and watching their family’s grieve or seeing people after accidents, paralyzed and broken; how grateful we were that Debs was alive and if a few pieces less… still wholly with us.
And yet, its okay to also say I cannot understand how desperate and sad Debs felt, this fighter, this angel, lying in a bed in agony surrounded by death and disease and not knowing if she was going to make it…. I don’t think we will ever understand what she felt.
For those five weeks, there were many nights and often times during the day, when we were not with her, when we thought we would get a call from ICU… telling us that Debs was gone and in Heaven. Yet, she survived five weeks of pure pain, sheer gut wrenching pain and we know that she did this with her fighting heart and strong mind. But more than that she did this with the comfort and strength of Jesus. I do not judge people on race or religion and believe one must just be happy in their own walk. I will not however ever deny my Faith and neither will my family because of the miracles we have seen in our sister and daughters life, and not only that… the peace and comfort you get from having someone to lean on, an ever omni-present Father who gives you peace when you are terrified and hope when you are hopeless. This love and peace and Faith got us all, especially Debs, though this time. So before we go onto op number 61…..
I remember praying that night until the morning and opening my Bible on Psalm 91 and amazing and unbelievable as this sounds, my Debs opened her Bible on that scripture to …. these things make me gaze upwards and smile. As imperfect a person as I am my Redeemer still gives me Hope and Love and Peace.
1 Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
2 I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”
3 Surely he will save you
from the fowler’s snare
and from the deadly pestilence.
4 He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.
5 You will not fear the terror of night,
nor the arrow that flies by day,
6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
7 A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.
14 “Because he[b] loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”
After these five weeks, Uncle Les eventually said that after Debs had had no bowel movement he had to ‘go in’ and investigate. This was on a Tuesday – again a shattered and broken family sat in a hospital canteen not knowing if we would see our angel again and yet again Uncle Les came to find us… and with teary eyes himself he said ” someone is looking after that child”, Debs small intestines were stuck to the pigs skin ( I may not have the full medical jargon correct here) however the agony that she was in, we all now realised was beyond what the Doctors or anyone can comprehend. Les bypassed this area and rejoined the small intestine to the bowel.
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On that Wednesday whilst Debs and I were praying in ICU, we said with our God we were going to get her out of ICU by the Friday and home by the Sunday. This was a crazy dream as bowel ops take up to a year to heal! Guess what though… on Friday Debs was in a ward and after our girls night sleepover on Saturday, where I slept on a chair next to her bed and as this clumsy little sister would do, took her bed off of its brakes by mistake and in my non princess-like way I sleep, kicked the bed and nearly sent Debs out the window off the 3rd floor of the hospital and straight back into ICU! Uncle Les walked in on Sunday morning and said ” Would you like to go home Debs?”. It might have been seeing me their and worrying that I would send more patients to his trauma unit, but a bigger part of me knows it was again an answered prayer and a miracle.
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Just a week later Debs was up and walking and eating basically what she wanted and we made our move, 7 dogs and all, to Cape Town reunited with our other sis, Bruce, little Cole and my adorable new nephew and Godson Cade, who just had to come into this world a little early to make us all smile and me a little broody…
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No it has not been plain sailing. Debs wounds are still not fully healed and her lymph is not draining in her leg. Countless visits to amazing nurses in Cape Town have happened and our family is struggling a little with this trauma.
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As we moved we had our closest family friend, best friends with my folks since the age of 19 until today, find out that his Cancer was back and terminal. A large amount of our time we have spent in Cape Town has been with this most precious family Barbs, Nick and Rob and our “Lappa”, Dave Ferguson. First at home and then at hospice, watching as this dreaded disease took over the body of one of the most amazing and special men we know. A gentleman and scholar, who died just two weeks ago, going home to Heaven where he, I am sure he is happily having a drink with all the other rugby legends, but leaving behind our most special Barbs and his sons who are like our brothers. I cannot understand their pain as we still have our Debs all we can do is be there for, and look after Barbs as her ‘daughter’s’. R.I.P to you Fergie…. your memories live on in our hearts and we cherish them always and forever.
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I look at my amazing folks and cannot understand what they have felt like dealing with a ‘sick’ child for most of 28 years. It must be so hard and heart breaking and at times they must just feel so helpless … they are beautiful and handsome and so very special but I can see how this has aged and affected their souls and hearts. They have given us the most amazing lives in-spite of the fact that I am sure it has not always been easy for them to do. They love us equally and they devote their lives to us. They are role models as husband and wife and as mother and father…. giving their all and taking so little back in return. Thank you Bronni for giving them such precious and adorable grand-kids who they adore and who adore them back. It is a gift you have managed to give back to them for all they have done for us.I hope to one day pay them back in some way too.
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I have grown up and changed a lot – my anxiety and panic attacks are at an all time high and I spend many nights awake and in tears and days where I freeze I terror at the thought of doing simple things or that something will happen to one of the people I love. I am 5 kilograms thinner then I was in Feb ( and even in Cape Town, the land of never to thin or …. I suit a curvy body and cant seem to put on weight with adrenaline flowing though my body as though I am on a treadmill constantly). I know I still make mistakes and will never be perfect but my heart is back to the place where God wants it, in a place where I yearn to help those in need. I am back to the person I was as a young girl, filled with love and a gentleness of nature which is a gift I was born with to give back to others. Where I want to fall in love and give all of me and my heart to my own family – preferably whilst my pops can still walk me down the aisle.
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And our Debs even as you battle with physical attributes that you think no one could ever love you with – YOU ARE AMAZING AND WORTHY OF MORE LOVE THAN ANYONE. My beautiful, yet again you have shown yourself to be 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.
As we collect your medical records now from 28 years , from hospitals all over this country and even America. I am excited to write this book, a story of hope, courage, Faith, bravery and my sis I am so proud that the person, the muse for this book is my very own sister and best friend. “Against All Odds” my darling sister, you have done it again and through this you have again proved 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.
And to our Heavenly Daddy, you said “Be Still and Know” and as I end this entry, as tears pour down my cheeks I know that I can still smile and be bubbly and courageous tomorrow and always, as you have shown us that you are more than a conqueror. You are our everything and we adore you. Thank you for letting us keep our Heavenly angel on earth so we can share her story and your glory ….
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