Forever 2442 days old

This is my journey with my son, Jed Brady Suckling; forever 2442 days old. Anaplastic astrocytoma, brain cancer. My son fought for 1071 days of his life.

You can listen to this article below, or by using your favourite podcast player at pod.link/oncologybuddies

Bonni Suckling (50) lives in Randburg, Gauteng with her precious fur-babies. 

The last sentence that my only son, Jed Brady Suckling, spoke was, “Mommy, let’s make today the funnest day ever.” When he muttered those words, he could no longer use his legs or arms, he was paralysed from the neck down, and blind due to the rapid spread of his brain cancer. 

When I was asked if I was ready to share my story and my experience I agreed, in the hopes that Jed’s amazing legacy will inspire you, the reader. Jed’s journey and his death are something I think about every day. I reflect on the decisions I made during his cancer journey and how these choices affected the outcome.

I wasn’t prepared for the agitation, inner turbulence, strife, and emotional roller coaster that penning this article would take me on. In the words of Jessica Moore, “True emotional healing doesn’t happen without feeling. The only way out is through.” 

As you read my story, know that it’s written by a mother who faces extreme guilt, feelings of failure and helplessness. Perhaps the antidote to these emotions is personal forgiveness. 

I held my son’s hand as our souls parted and as I type this, I still wait for the comfort of acceptance and inner peace. 

In this chaotic world of fast food, quick fixes, and everything being instantly replaceable, it’s difficult for society to accept that some things take time, some things can’t be replaced and there may just never be acceptance or healing. I’m…a bereaved mother.

Preparation for my child’s death

There was soft music playing. Daddy had just arrived home. “Had you been waiting for him my son?” Do children wait for their parents before they let go? Is there something that needs to be said to give them permission to transition over to the other side. Candles were burning, and the room was calm and quiet, we were home and together. 

The physical preparation for my child’s death was meticulously planned. An overwhelming peace and the perfect setting for a sharp abrupt painful ending. At long last there were no men in white coats with stethoscopes, no bright lights, no monitors beeping, no wires, no drips, no alarms ringing, and no blasting sounds of machines but the silence of Jed’s pending death was deafening. 

The day our normal exploded; I know where the lightning strikes. The blast of emotional shrapnel slicing into my heart and soul. Jed Brady Suckling: 3 November 2004 – 11 July 2011.  

Jed’s journey

Jed had a life-threatening condition and I held onto medical miracles and hope so tightly that there was no room for any discussions of his life being under threat. He was going to live: a full, healthy and long life. And when treatment options failed, I turned to spiritual hope and faith. My son was never going to die. Therefore, there was no need to prepare my heart for surviving without my little boy. 

We were at war against cancer and Jed’s ammunition was my loud passionate advocacy voice, three craniotomies, chemotherapy, conventional radiation, and stereotactic radiation. We were loading him up with deadly ammunition at such a rapid rate. 

Was the battle he fought worth the pain, discomfort, and emotional torture? Could we have been better prepared? The artillery they used to defend him caused side effects that haunt me. The strongest punches thrown at his clusters of malignant cells, but they shrugged off the drugs, the surgery, and the radiation. The cancer thrived.    

The day our lives changed 

On 4 August 2008, after numerous visits to paediatricians and multiple lectures on my personal paranoia, a final diagnosis was made that our son had a brain tumour. At the time of his diagnosis, I was oblivious. “Is that like a boil?” I asked the neurosurgeon. 

A lack of knowledge and ignorance were my blessing. We never once heard the word cancer in the first two weeks from diagnosis to surgery. Post-operative recovery was quick, and we were home with the news that the brain tumour was benign: a pilocytic astrocytoma, a low-grade glioma. No oncology treatment was required. 

Psychologically filled with the excitement and the affirmation of life, our new normal was bursting with gratitude. Recovery was done at our home, and we required no outside support.

Relapse happened less than six months later. After another craniotomy we were told that our son had brain cancer. 

Pilomyxoid astrocytoma (PMA) shares considerable histological and genetic overlap with pilocytic astrocytoma, but PMAs are malignant. The tumour was back with its new name and its new challenges. Blood brain barriers, radiation impact on my son’s developing brain, and now his parents were no longer emotionally stable.  

Ray (Jed’s father) and I were told that if treatment failed it would lead to the death of our son. Jed’s death wasn’t an option and while I acknowledged the significant obstacles and pitfalls, true hope had no room for doubt.  

The momcologist

I became a “momcologist.” It’s unclear who thought up the word but there is no better FBI agent than a mother armed with Google and an oncology child. I became obsessed with everything about my son’s disease. Every doctor’s appointment, scan, blood result, and hospital appointment was recorded, referenced, and filed. I didn’t manage my anxiety or fears and masked up with a facade of strength and calmness.  

We never heard the words “no evidence of disease” and Jed relapsed again after a full year of treatment. Craniotomy number three, experimental chemotherapy, and stereotactic “compassionate” radiation. 

At this stage, hope, true hope was more powerful than medication. My mindset focused on the power to alter neurochemistry and to somehow “think” my son well. There was also sadly no new drug, and his tumour got a new name, again, anaplastic astrocytoma. This was the monster that would steal my son.

Relapse number four

At relapse number four, it was time to accept the inevitable, but I was still in denial. Choosing to believe that the bright light on the MRI scan was necrosis (dead tissue) and not another relapse. Could a “cowboy” surgeon risk another resection, and would we get the same child back? The answer was a hard no. It was time to accept that death was moving closer and engulfing our home. Ready to rip our most precious possession from us.

The doctors and neurosurgeons had told us it was time to forgo life-sustaining measures as Jed’s anaplastic astrocytoma had spread to the brain stem and was now taking over his entire brain.

Jed wasn’t capable of making any decisions; he was six years old. The decision-making was left to his emotionally unstable parents. The two people who loved, idolised and were besotted with him. Our son was a fighter but the opponent, his cancer, was a bully. All we could do was manage the symptoms.

Beauty in my sadness

I’m not a guest in this story, this is me. There is beauty in my sadness. I have traces of my son’s journey messed all over my soul and I’m not embarrassed that I’m not okay, and that I have and never will accept that a child can get cancer. I have learnt that grief and happiness can live side by side. 

My son gave me gifts that can’t be adequately described. The main legacy left behind was compassion and a drive to advocate for children fighting cancer. Rainbows and Smiles was founded in 2011, in memory of my son, and has grown into a successful voluntary association, impacting the lives of children with cancer and their families. We offer holistic support, working closely with medical teams.

A message to my son

Your death ended your life my little boy, but it didn’t end our relationship. The collateral beauty that has become your legacy, Rainbows and Smiles, has given my life meaning and purpose. Thank you for choosing me to be your mommy. You are so much more than a cancer diagnosis; you are funny, you are adorable, you are perfect, and you are loved today, tomorrow and always. The only thing that could be worse than your death, is never being able to call you my son at all. 

Let’s make today the funnest day ever. ~ Jed Brady Suckling 

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