Rainbow Warriors

The importance of early detection.

Founder of Rainbows and Smiles, Bonni Suckling and Ray Thomas’s six-year-old son Jed died on 11 July 2011 after bravely fighting an Anaplastic Astrocytoma for three years.

Bonni: Jed was a healthy happy little boy until August 2008 when he started to show signs of headaches, nausea and balance issues. After many doctor/paediatrician visits, he was diagnosed with a highly aggressive brain tumour. The day the carnage of cancer started is eternally etched into my memory.

Jed endured three craniotomies, 31 sessions of conventional radiation, experimental chemotherapy and palliative stereotactic radiation, protocol that was highly aggressive and gave Jed three additional years but was an emotionally draining time. I will never forget the “torture” of cancer treatment.

Nadia: The day Hanno was born – 22 July 2010 – was such a joyous day for my husband, Tiaan and me. As the first little boy amongst all the nieces, he instantly became the apple of everyone’s eye… Hanno was fearless, happy, inquisitive, very headstrong and his favourite colour was pink! He loved bugs and animals alike. He adored picking flowers and showering me with blooms daily.

Our boy was a healthy little man with no prior medical issues whatsoever, not even a drop of antibiotics had touched his lips! But this changed very drastically….

On Friday, 8 June 2012 – three days after I’d had a miscarriage – Hanno had a pesky cold and persistent cough. I was lucky to get an appointment with his paediatrician on the day, who found that no air was entering Hanno’s right lung. It turned out to be impacted… squashed!! I’ll never forget the specialist surgeon explaining the results of his CT scan: “I’m almost a 100% certain this is a Teratoma, a benign tumour. It’s not serious, however you’d have to make a decision sooner than later to have it surgically removed.’’

As it turned out, the tumour wasn’t benign and Hanno was diagnosed on 12 June 2013 with a rare form of childhood cancer called Aveolar Rhabdomayosarcoma, stage 4… Hanno immediately started with a high-dose chemo protocol including radiation.

After three surgeries, his cancer metastasised to his brain…. Hanno had to have a craniotomy, which is brain surgery. After this blow, Tiaan and I realised we couldn’t continue putting our beautiful brave son through any more.

After 13 months of fighting this monster, our precious Hanno “Brave Heart’’ Lewis passed away on 19 July 2014 at 16h10, three days before his 4th birthday… His little baby brother was only 5 weeks old at the time.

What crossed your mind when you first received his diagnosis?

Bonni: The first time Jed was diagnosed I had no idea of its magnitude. I was so naïve – I remember asking the doctor if a brain tumour was like a big boil – I had no idea that a brain tumour was cancer. I thought it would be removed and Jed would need some rehabilitation. 

Sadly, when he relapsed a second and again, a third time, I knew that there was a chance my son could die. I tried to reassure myself it couldn’t be happening. I had to stay positive, but the emotional pain was excruciating. I was barely able to function and started to remove myself from everyone – I was trapped in a shattered world. 

Nadia: It was a beautiful day in Durban, the sun caught Hanno’s golden hair and gorgeous smile as he looked at me. It was at that moment when heaviness entered my heart, and I knew that something was going to interrupt our happiness in a very sad way…

On receiving the cancer diagnosis, I felt like I’d been punched in the stomach. Tiaan passed out from the shock. The chance of long-term survival was 20-40%. However, we thought WE WILL fight! And we WILL overcome this.

When Jed/Hanno died, how did and how do you carry on?

Bonni: Grief is the price we pay for love. The pain felt daily is indescribable; we suffer depression, anger, guilt, despair and an intense loneliness. My hopes, dreams and plans have been turned upside down. I’ve been numb for a long time but when my emotions catch up I’m left crippled, weak and broken. On days when I miss Jed my ability to make decisions or think clearly is impaired. With time, I’ve learnt to slow down and talk about my grief. Nadia and I often have days when facing reality is just too difficult and then we have each other to pick up the slack.

Nadia: When Hanno died I survived by taking one breath at a time, and when breathing became manageable I took it day by day. I also had a 5-week-old baby to care for, Hanno’s little brother, and his daddy was just as broken as me.

How did it affect your family?

Bonni: Jed had a best friend named Thami. The boys believed they were brothers and told me they knew exactly why one was white and the other was brown – because Jed ate white chocolate and Thami ate brown chocolate. Otherwise, they believed they were identical, and they were inseparable. Jed’s death left Thami’s heart sore and broken and I know that Thami feels he couldn’t protect his brother from cancer and suffered anxiety and guilt. He had no idea how sick his brother was, and Jed’s death was a massive shock for Thami. Thami will always hold a special place in my heart as “my other son”.

Ray and I separated four months after Jed died. I’m not sure how much it had to do with Jed’s death and the high levels of stress we both endured. Ray is the best dad in the world and I love and respect him so much.

Nadia: Hugo was only 5 weeks old when his brother passed away, but today he knows of Hanno and asks many curious questions about him. I love telling Hugo about his big brother.

What special memories do you have of Jed/Hanno?

Bonni: The day before Jed died we woke up and looked at each other. I asked what he felt like doing for the day. It was July and cold… He was completely paralysed, going blind and very weak. He looked at me with his big blue eyes and said, “Mommy let’s make today the funnest day ever!”

When I’m depressed, sometimes suicidal even, I remind myself of those words and strive to make every day the funnest day ever.

Nadia: Hanno, thanks to his dad, also had an eye for beautiful ladies, who he called “hot mommas”. Try this for size when you go shopping and he spots a beautiful woman – trolley dash has nothing on me!

Hanno used to always tell me I look beautiful and expressed it by saying, “Mama lyk soos ’n hot momma!”

How do you support one another?

Bonni: It’s more than support. We’ve morphed into one human… Pinky and the Brain – the role of Brain is interchangeable. We complete each other’s sentences and no longer need words to know what the other is thinking. It’s extremely handy in day-to-day life, as I can log into Nadia’s brain to retrieve my personal data at any given time.

Nadia’s my best friend, my soul sister. She’s my oxygen on a Tsunami Grief Day!

Nadia: I only met my amazing friend Bonni towards the end of Hanno’s life. She supported us, cried with us and welcomed me to my new normal… I never have to pretend with her.

I love her crazy cool, her passion, love, and beautiful heart; I’m so grateful to be part of her dream, Rainbows and Smiles!

Tell us about Rainbows and Smiles…

Bonni: Rainbows and Smiles began because of Jed’s love language of giving gifts to others. We delivered toys, crafts and activity sets to oncology wards with Jed being our smiley courier. After Jed’s death we moved away slightly from only the “fun” part and now try to offer financial support in the form of food vouchers, medical bills, funeral support, etc.

Nadia and I’ve always dreamed of having a house where we can host oncology rehabilitation with specialists in the field of long-term survival. While that will always remain our dream – we continue to offer emotional, financial and social support. We always say that our bank account is not a savings account and therefore our dream rehab house is put on hold. We focus on the immediate and often pressing needs of oncology families.

“My biggest consolation in grief and greatest achievement in life is to have fulfilled my son’s wishes of making the world of oncology a better place.” – Bonni Suckling, mum of Jed Brady Sucklling, forever 6

What you can do to support Rainbows and Smiles

  • Individuals/corporates can donate money easily via Zapper on the website, or EFT: Rainbows & Smiles; Standard Bank; Germiston branch code: 011 642; account number: 020 313 373; Reference: your name – donation. The smallest contribution makes a difference!
  • Donate second-hand clothes for selling to raise funds at the offices in Joburg, Pretoria, Pietermaritzburg and Durban.
  • The Wish List on the website (www.rainbowsandsmiles.org.za) mentions toys and games that are needed most.
  • Become a platelet donor – the website has info on specialist blood banks.
  • Crowdfund by taking part in sports events like the Comrades, aQuellé Midmar Mile, Telkom 94.7 Cycle Challenge, etc.
  • Since Rainbows and Smiles is a PBO, donors may claim donations as tax deductions and may also claim BBBEE points against the socio-economic development element of the BBBEE scorecard. It is also Level-1 BBBEE accredited.
  • Rainbows and Smiles is audited to ensure funds go directly to affected children/families.

Contact information

www.rainbowsandsmiles.org.za

Bonni Suckling 083 460 0999 / bonni@rainbowsandsmiles.org.za

Nadia Lewis 083 764 8109 / nadia@rainbowsandsmiles.org.za

Facebook: Rainbows and Smiles