Those of you who have been following this blog will know that I had little brother, Edward, who died from Ewings Sarcoma at age 11. By the time it was diagnosed, the tumour was 300ml (huge) and had broken through his femur. Even at diagnosis, we all knew that barring a miracle, Eddie wasn't going to be with us for much longer.
There was no protocol in South Africa to treat his tumour; they had simply never seen one that big, and neither had any of the doctors they contacted for advice in other countries. The only choice was to bombard Eddie's body with as much chemotherapy as they thought he could stand. At stages it was a toss-up what was going to kill him first, the cancer or the chemo. Amputation wasn't really an option; when the tumour broke through the bone, millions of cancer cells spread throughout his body and more tumours were inevitable.
I don't think that anyone ever actually sat down with Eddie and explained to him that his chances of making it to adulthood were miniscule... eventually he worked it out for himself, and then the anger began.
Gods, he was horrible to be around for a while there! We just wanted to spend as much time with him as possible, and he spent as much of that time as he could pushing us all away. It was heartbreaking... while we were praying for that miracle every single day, we also knew that his body could only take so much; we knew the clock was ticking.
But how do you communicate this stuff to a kid? How do you tell a child not to hope too much when you can't even tell yourself that? And, of course, there's the ever-present idea that the power of thought itself might help. You can't allow the child to lose hope, that would preclude that miracle you're waiting for. But to be fair, we should have probably told him sooner. That anger was an inevitability, maybe it would have been easier if he had been allowed to experience it in its time.
He spent Christmas Day 1998 in hospital getting chemo. Christmas Day :-( The day all kiddies are supposed to be happy and surrounded by family and good food and cheer. We were all there with him, and brought our Christmas lunch to eat with him. And then we had to go home. I'm crying right now once again thinking of it... he howled, and sobbed, and screamed at us, all the while apologizing over and over again for ruining Christmas for everyone. Ruining Christmas, Eddie? Never, my darling child. Cancer ruined our Christmas love, not you; never you. We should have told the hospital to stuff off, that you could start your chemo the next day.
Not long after that, Eddie made a decision. He decided to come home, stop his treatment, and die with dignity. His anger was gone, and a strange peace came over him. In desperate pain, with tumours popping out all over his body, he allowed his father to drag him to Lourdes in France for a miracle cure. He knew it wouldn't work, but he also knew that his father needed that, he knew his dad would blame himself for the rest of his life if he wasn't able to try one last thing to save his child.
At home, Eddie played lots of Nintendo, and watched all his favourite movies. He had Mum draw all the money out of his little bank account, and instructed her to divide it equally amongst his siblings. He called each one in, and gave them a little piece of advice, and told them how much he loved them. I wasn't there that day... I had to go away to work and I never got to say goodbye.
But Eddie did. Eddie got to say goodbye. He knew he was dying, and he allowed the process to happen. He told our parents that they needed to allow him to go, that he loved them dearly, and he was grateful for everything they had done for him, but that they needed to let him go. He made his own decision, and he stuck to it, and thank goodness my parents actually allowed him to do that.
Hope is important; it's where miracles come from. But just as important is allowing even a child to say goodbye. Allowing that quality time. No hospitals, no treatments except pain meds. Just loving family spending the last bit of time together that they have.
It is heartbreaking, but it's beautiful too. I wouldn't have taken that away from Eddie for anything on this Earth.
I still love you, sweetheart. Still miss you every single day. But I'm so grateful you were allowed to die a good death.
By Annalisa Prak
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