It’s funny how this place grows on you. I remember my first conversation with another patient here from Australia almost two years ago when Roki was still so little and the fear in me about what we are doing to him was so big. This man could hardly talk but managed to tell me a very important sentence. You are lucky he said, you found the right place.
With only a few days left after ten long weeks here I can honestly say I don’t know how I feel about leaving here. This place is our place of hope, we are surrounded by people who are getting better, we are surrounded by staff who care and help us in any way they can and so as our hope grows our bond as a family gets stronger, and Roki, well it’s plain to see he thrives here, we have never seen him look so healthy and happy.
Over the three visits we have had here it has become clear to me that the expectations I had at first were far removed from reality, I remember wishing with everything in me to just get Roki here so that they can fix him for us, I thought it would be an instant answer. We know that the stem cells are doing their work, we know they are repairing pathways and growing new neurones, we know that there is a lot happening in our sons hurt brain. We also know now that it is not the only solution, it comes with a lot of hard work and a long road ahead of us.
Today I was summoned to Dr Geeta’s office. I knew that Roki’s Brain Spect scan results had arrived. After the disappointment five weeks ago I wasn’t quite sure what to expect. It was remarkable to see all six of his scan results laid out on the table. I looked at the first one we had done when he was just 7 months old, there was a lot of diffuse damage covering large areas of the brain, it was not a good picture. Dr Geeta then showed me yesterday’s scan, remarkably his scan was almost normal with a very small area remaining of very light blue which means it is not that severe. One can almost not believe the difference in five weeks of extended therapy.
What does this mean to someone who cannot read and understand a Brain Spect scan? It means that Roki’s brain now is the equivalent of a 4 month old baby in utero, or at least the parts that were severely damaged are. It means that we have to be patient, work hard and believe that results will come, I believe in the catch up phenomenon. Roki has changed so much in the last 18 months, one thing I can say for certain to all parents of brain injured children, the picture is never complete, it changes every day and the brain is a truly remarkable thing. There certainly is a lot to be done about an injured brain.
Each brain is unique in its ability to recover from trauma. So is each child, mother, father brother and sister. We are all recovering and today we can sit back and at least say we know we have done the right thing here.
All that hard work, all the support from all the people we know and don’t know. It’s just the first few chapters of a remarkable life unfolding.
Leaving here is the easiest and hardest thing to do. Will we be back? We don’t know. Roki will decide about that one.
There are few hidden treasures left in this life, this place here is one of them that we know, the right place to go.
* Simple explanation to understand Spect Scans: Black and dark blue areas are severe damage to oxygen and nutrient pathways to these areas of the brain. These areas are not functioning. Grey areas means that the pathways have been restored and the neurones now have a chance to recover and be reactivated. Orange and red is good and simply means activity. This is not a medical explanation but my own understanding and should not be used as clinical correlation.