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Life, Loss & Love

Growing up I always believed that I was invincible. That life would always be kind to me and smile favourably on me and my family. Naively, I thought that if ever I had some terrible illness, medical advances and technology would save me. I would never be a statistic because things like Cancer happened to “other people” and it would never happen to me…. Until it did!

When you get a positive pregnancy test result and go for your monthly scans and check-ups, you breathe a sigh of relief each time you are assured by the doctors that everything is on track and progressing well. You deliver a healthy beautiful child into the world and life as you know it, is complete and full of wonder and new-born excitement. Never in your wildest dreams can you ever contemplate something life threatening befalling your child. It’s unconscionable to consider the loss of a child when everything has been textbook perfect for months. Your baby is happy, healthy, thriving and meeting his milestones. He is a dream to feed and sleeps like a champ.

How could something so perfect be changed in a matter of days when you get the most earthshattering news “Your baby has Leukaemia”?!

Keiran was 6 months old when I noticed he was starting to get a bit niggly at night, waking more often and sometimes being a bit fussy. I dismissed it to baby-related causes like the infamous sleep regression, growth spurts and over stimulation. Keiran had also developed a tiny mark on his leg which looked like a mosquito bite, but it gradually grew bigger and got darker and larger with the passing weeks, which caused me concern. Being the hyper-vigilant overprotective mom that I am, I had him at the paediatrician more times than I can count on my fingers. I noticed something was amiss but to the paediatrician and everyone who examined him, he was on his growth curve and meeting all his baby milestones like a champ. I had a horrible feeling that my baby had cancer. This bothered me tremendously and I voiced this concern on numerous visits to the doctor, and again my maternal instinct was silenced by rationale and medical opinion that I’m over-reacting and everything is fine.

When Keiran was 8 months old, after a week of hell and very little sleep, my baby had developed a rash all over his body and was crying uncontrollably. This same rash was dismissed weeks before as “nothing major, it’s just viral and it will disappear” by the paediatrician. However, this rash that was overlooked was Petechiae – a condition whereby the blood platelets are so low in a person that the red blood cells cannot stick together, and you are bleeding under the skin which forms a rash that turns blue/purple over time. This can lead to organ failure and haemorrhaging.

Out of desperation I sought out advice from my family doctor. He took one look at my son and was horrified that my specialist had never done blood tests on such a small baby who had progressively got sicker and sicker. He ordered the blood work immediately and was horrified when he received the results. Not only was my son leukemic, but he had septic shock and his organs were failing. My beautiful baby boy had Cancer!

We were overwhelmed by the many doctors, specialists, ICU’s, medical acronyms and jargon; it was a tsunami of hell being unleashed! Our hearts were broken, and our family was reeling. How on earth could an innocent beautiful baby be diagnosed with cancer?! How is this possible?! Why?! How?! This was a breastfed baby, it made no logical sense!!

And so began our horrific journey into the world of childhood cancer….

My 8-month-old baby had many vials of blood drawn, anaesthetics, antibiotics, bone marrow aspirations, intrathecal chemo, central lines placed, ports inserted, scans, blood transfusions and intravenous chemo running constantly for 6 weeks.

This was all in the effort to save his little life and knock the cancer into remission.

Our little angel handled the entire ordeal in hospital with the biggest smile on his face, always happy and clapping his hands despite his diagnosis. He inspired everyone around him with so much hope.

We nicknamed him TinyTheMighty because, although he was Tiny, he fought this Cancer with a Mighty spirit and the heart of a lion.

At the time of his diagnosis there was a critical need for blood and platelets in South Africa. In dire moments when we didn’t think he would pull through the next few hours, we had to wait for over 12 hours for blood to be delivered from the blood bank. We were panicking and calling on every person we knew who could possibly expedite the process, but the response we always received was “There is no stock!”.

I was flabbergasted! How can we have no blood or platelets stock?! Why is this this case? I naively believed blood would always be on hand, right?

My child has a few hours at best to live and due to the lack of blood we may lose him before we have even begun to fight the Cancer. Blood and platelets were critical to give my Tiny baby a fighting chance at survival. I never realised how precious lifesaving blood and platelets were until we were in the thick of a medical emergency, with no ability to control the situation. We were at the mercy of the Gods.

In this time we experienced a massive outpouring of love and support by so many people. People who, through a collective sense of humanity, decided to show their love and assist us in Tiny but Mighty ways.

We appealed to people on social media to go donate blood and platelets at their nearest donor centres, because you never know when something horrific could happen in your family.

I started posting Childhood Cancer Awareness educational messages and became an advocate for little children fighting massive battles against Cancer.

I encouraged everyone I knew to consider becoming a blood, stem cell or organ donor. We organised blood drives and campaigns which had such a massive influx of support and broke records previously never seen by the SANBS on a single day. It was a whirlwind of activity whilst we were fighting a battle within a hospital ICU.

Whilst I hoped God would spare my child, let him survive this awful diagnosis and live a healthy and happy life, sadly after 21 days of intensive chemotherapy our TinyTheMighty declined rapidly and ended up in ICU fighting a host of infections which he had no ability to fight off, as the chemo killed off the leukaemia and in turn, the entire immune system.

The day we were called to the ICU while they tried to resuscitate him, I remember thinking if God couldn’t give him back to me with the ability to live a happy and healthy, long life free of pain and suffering then God should take him. I couldn’t bear watching my child fight to survive for me and my fear of losing him, only to have him suffer for an undetermined future filled with more pain, procedures, and heartache.

In the darkest moment of despair I found release because that’s when I knew I wasn’t making this decision based on ego. I was making this decision based on LOVE.

Our beautiful baby boy passed away on the 9th of September at 9 months old in our arms, while we sang lullabies to him and cradled him in his favourite “mousie blanket”. The most heart wrenching moment any parent would ever have to endure!

I realised in that moment that LOVE makes you BRAVE, and you would walk this earthly existence without your child and endure a lifetime of pain knowing you released your child from further suffering and agony. In that moment I also realised that although time and space would separate us, LOVE is universal, un-ending and LOVE NEVER DIES!

We honour his life and legacy in Tiny but Mighty ways since his passing. We have dedicated ourselves to speak up and be a voice for those facing the challenges of Childhood cancer. We encourage people to give in Tiny but Mighty ways such as blood donation, registering as an organ donor and signing up as a stem cell donor. We support childhood cancer charities such as Cupcakes of Hope, Rainbows and Smiles and CHOC. We organize fundraisers and golf days knowing that our commitment to helping those in need will have a massive impact in the world. All in honour of our TinyTheMighty.

We look for signs of him everywhere – in rainbows, butterflies, sunsets, feathers, sunlight dancing off sea water, stars twinkling at night. We talk about him often and incorporate our baby boy into all special days shared in our family. He is never far from our thoughts, hearts and minds. Keiran has been the single biggest influence in my life, and the life lessons I have learnt from his brief time on earth have been immense and so enlightening, that I can only Thank him for choosing me to be his mother. I do believe my soul chose him and through his life and legacy he has helped me grow, live and love beyond anything I ever thought possible. I believe I am a better mother, wife, friend and human being because of the impact he had on the world.

Things I have learnt on this journey of loss is:

  • There is no hierarchy in terms of loss, everyone’s journey is unique. The degree of grieving may vary depending on the circumstances but we are not all equipped to deal with loss, as it’s not something we talk about in society.
  • Loss can be your greatest teacher as painful and as unwanted as it may be. In loss you realise what is important and how precious, fragile and fleeting life can be. You realise that you need to embrace each day as a blessing as life can change instantly.
  • LOVE MAKES YOU BRAVE. During this journey when I was overwhelmed with anxiety, depressed, scared and grieving I tapped into LOVE and that was the driving force that got me through my toughest days.
  • There is massive strength in vulnerability and sharing your story with the world. I have had so many people approach me with their own stories of loss and grief which they have never spoken about or shared with the world. Through my ability to talk about my son and his brief life it gives others the courage to do the same.
  • Driving my grief and loss into tiny actions of love and kindness for others has assisted in the healing process. This has also allowed me to create a legacy for my son TinyTheMighty by initiating community led blood drives and creating awareness for childhood cancer, and being a voice for those lost in the horror of this diagnosis.

Childhood Cancer:

  • Does not discriminate and can affect children of any socio-economic background, ethnicity or culture.
  • Unlike adult cancers which can be linked to lifestyle or dietary-related choices, childhood cancer often has no known cause however certain genetics expressions or malformation is often the cause creating the cancer. Doctors don’t know what causes these genes to activate.
  • Between 800-1000 children are diagnosed with cancer in South Africa every year, and more than half of the children are never diagnosed due to lack of education and awareness of the signs and symptoms of childhood cancer. Health care professionals /specialists in some cases will dismiss a mother’s instinct or care giver’s concern, as there is a perception that childhood cancer is “rare”, leading to late diagnosis of the disease and reduced chances of survival.
  • Chemotherapy used on children has not advanced to the same degree that adult chemotherapy has, due to lack of research and funding in this area. Some drugs used on children today have been around for 40 years and have massive side effects and consequences. More needs to be done in this area to help improve survival rates.

The most common childhood cancers are:

  • Leukaemia
  • Lymphoma
  • Brain Tumours
  • Neuroblastomas
  • Soft Tissue Sarcomas

In September this year it will be 4 years since I lost my son. It feels like yesterday, as PTSD and trauma haunt you and make you doubt your reality, as the emotions and memories are overwhelming. Whilst I still struggle with grief, as it can sometimes burn like a candle flickering in the dark and other times consume you like an inferno, I have realised that the love and support of strangers, the community, friends and family have been invaluable to my healing process.

My TinyTheMighty’s story is woven into my life like “Kintsugi”, the gold used to repair Japanese pottery. The scar remains, however the gold makes the artwork more beautiful than before.

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