Jordan’s Journey

Our story began in 2015 when in one moment our lives completely fell apart. Jordan was diagnosed with a very rare form of thyroid cancer, and added to that, a type of cancer with no available treatment options in South Africa. Your child has cancer is one of the worst things any mom or parent can hear. So, there I was, I had to become a narrator of a story I didn’t want to be part of, let alone write. This had to be someone else’s story, surely not mine, not what I had planned out for myself and my children. A story facing many struggles mentally and physically.

So, what do you do? You fight like you have never fought for anything in your life. You fight so hard that in the process you don’t even realise that you lose a part of yourself, you lose relationships, friends, family and not to mention the enormous pressure and feeling of neglect your other children feel. But this was our story and I had to write it. I refused to believe and accept that there was nothing more to do and so I started doing research begging and pleading with doctors from all around the world to give my son a chance to live because there was no way my or his story was going to end this way. Hours and hours I sat and read medical journals, searched the internet and became accustomed to a word I could only pronounce in syllables. It is also during this time that I realised that google is not your friend but in fact a very nasty person that uses words like no options, life expectancy etc.

And boy, not even to mention when you talk to doctors and you mention some of those syllable words, they think you are from the same country because the conversations that follow are the ones in my head thinking, Doctor….. please talk slower, nope not French please, South African. You are now even more confused and anxiety attacks are becoming regular. I felt like running away. I was tired of hearing that I must be strong and must keep believing, it’s very difficult to believe when you are constantly being given bad news.

And when I thought all hope was lost after hours of e-mails to foreign countries, Jordan was accepted into a trial programme in Washington for children with this rare form of cancer. And so started my fundraisers and countless trips to the United States.  Each trip gave me hope.  Going back and forth seeing doctors and bringing back 6 months supply of chemotherapy. Months turned into a year then two then three the chemo was working, it was not a cure, but it was working he was stable. And then Covid hit, suddenly there were no more trips which meant no more chemo and my life fell apart all over again. How could I look my child in the face and tell him…? I failed him, I wanted to die.

What followed was many fights, e-mails to pharmaceutical companies because now we had to beg and plead for this drug to be supplied on a compassionate basis. At 6000 dollars a month this was a death sentence in itself, my child needed this drug to stay alive, time was slowly ticking away. One month became two, three, four. All that kept me going was a doctor saying the drug would stay in his system for some time… I had literally nothing more to give, I had nothing left. I pleaded to God for another miracle. Sometimes I thought God must be saying please close the doors and windows because the crazy lady is at it again.

But they did it, not me, them. We secured another 3 years’ worth of chemo. All because of my team of unsung heroes the handful of people that stood by me when I thought the world was failing my child. My unsung heroes are among you all. Some of my heroes took in my children, fed them, helped with countless fundraisers and sometimes they just listened. They kept me going. I would not be standing here today if it wasn’t for them. They might be the person sitting next to you. They don’t want to be noticed; they don’t want any awards they are just there, silently waiting to pick you up when you fall. I have witnessed and experienced the dire need of parents that had to give up everything. Those that have had to face huge financial burdens, those with no support system, those lost and alone.

And although our journey still continues with many obstacles along the way and our fight is not over, I have become a narrator of a story filled with gratitude, faith and determination, one with a different outlook on life. I value and treasure each and every moment because I know someone somewhere has my back. I lift my head up high and hope in someway to be the voice for parents and children facing the same struggles knowing that hope is not lost. I gather strength from a little boy, no sorry teenager, that wakes me up at night saying thank you for looking after me, there is no one I love more than Jordan, and those unsung heroes in every form and shape around me.

I want to end off by saying, be the change you want to see in the world. Be that unsung hero for us, for these children, for this organization and let’s keep hope alive.