April 11, 2018

Heartlines

Omuhle passed on twenty-four months ago, today. March 15th is the day I held her in my arms in the ICU of Mediclinic, after four years of battling a form of cancer called neuroblastoma. She was going to turn five on 11 April 2015, and I had planned for a big Frozen themed birthday party. She was diagnosed with cancer when she was seven months old, and what a journey this was to be.

A three and half hour trip (twice a month), blood works (tests and transfusions), scans and surgeries all done on a one-year-old.We kept hope and faith alive, prayed and stayed strong.Six months later O was given the clear, but there was a troubling mass on her skull, and it kept growing.

 

Three years later we found a brain surgeon and had the tumour removed. The sixteen hour surgery was successful.  O woke up, but couldn’t breathe on her own. She spent two months in ICU with a hole in her throat (tracheotomy). She got a huge stitch on her head from the tumour removal surgery. She was forced to sleep on one side of her body. Two months later, the doctors said to us, “You can go home but there’s a tumour in her lungs.”

the doctor asked me to come hold her and say my goodbyes

We decided to forget about the negative part – our baby was coming home with a new face, just like every beautiful girl! There were joyous moments at home while batting the trachea care. Mommy and daddy took up the challenge like champions! The tube was protruding through her throat so we had to be careful with it, and the doctors warned strongly – “If it comes out for too long, she will DIE.”

It was our mission to create a happy home, and forget about cancer. She was fine and happy to be home. December of that same year, Omuhle complained about back and abdomen pain. I froze. I knew something was wrong. Two months of tests, the doctor told us, “It’s just bad, there’s absolutely nothing to do.” She was on four pain killers a day, she lost weight, and she was very sickly.

Daily she asked, “Mommy please take me to the mall?” and I did as she asked. Thankfully it was close to us.I asked her one day, “What do you like about the mall?”“I want to see beautiful things,” she said.One Sunday morning as I took her there, I had a conversation with my four year old. “What do you want to be when you grow up?”Calmly with a tight chest she answered, “I want to be a mommy with two girls.”

Two days after that we took her in to the hospital. It was the morning of March 15th. I fed her, she asked for water and juice, we had scans and waited for the results.She looked at me and said, “Mama, papa!” then fell on me. I called the nurse and they started a resuscitation, and minutes later the doctor asked me to come hold her and say my goodbyes, and I did.

That same year two children younger than three in my town died of cancer.

I now run a support group for grieving parents in Nelspruit. It helps us to heal and accept what has happened. I facilitate the support group quarterly in my town and request these parents to give toys and teddies in memory of their departed children, and those toys are donated to paediatric wards in the rural hospitals.