Four years ago today, when I was a month old, we were told that I have brain damage. Three years ago tomorrow, when I was 13 months old, we were told about my liver cancer. Then, 2 years ago this weekend, I was in hospital for my first pneumonia!
That is why Mum and Dad always worry about me during June.
(I was already 4 months old in the first photo - this was taken just after my needles, when I stopped breathing! The other photo was taken during my chemotherapy treatments.)
A week ago today, our world once again turned upside down.
After coming back from our first day away from him, we were informed the doctor wanted to have a chat with us. We were taken into a special room with two doctors and a nurse. We were sat down and the doctor attempted small talk. Our nerves were frayed and tension was high.
Dexter had had a routine head ultrasound on his four week birthday, just checking for any abnormalities or concerns. Unfortunately, the doctor advised us that they had, in fact, found something in the white matter of his brain.
He called it Periventricular Leukomalacia, or PVL, or in more simple terms... brain damage.
When he said those two words, our world stopped. Thoughts, questions, anger, blame, guilt... all rushed through our minds, with the biggest, unanswerable one being: Why?
Why our little boy? Why us? Why?
The doctor can’t answer these questions, nor can he answer any of the questions that we have at the moment, which makes this situation all that more frustrating.
It was explained, the brain damage is likely to have been caused by one of two things; either a potential infection in his waters, or an event that took place in the first couple of days of his life. They cannot confirm if there was an infection, as I was given antibiotics. They will never confirm the latter.
It was explained, that it is very rare for this to occur in pre-term babies over 30 weeks gestation. Dexter was 31 weeks. None of this was fair.
It was explained, that this will impact on Dexter’s movement, and his learning and development. The doctors cannot indicate the extent of Dexter's limitations, nor can they confirm what areas will be affected.
It was explained, that on a scale of mild, moderate and severe, Dexter was sitting in the moderate section. We were advised to prepare ourselves that he will have some form of disability. We just don’t know what.
It was explained, that it is more than likely this will manifest into Cerebral Palsy. We just don’t know which form.
At lot was explained to us and our heads were full.
I was overcome with guilt; that something I may have done, could have caused this.
Read more here.
One in two Australians will be diagnosed with cancer by the age of 85, so in our little family of three (now five), there was basically a guarantee that one of us would develop cancer at some point.
I just never thought it would be our 13 month old son.
At a routine pediatric appointment, an enlarged liver was diagnosed
At the doctor's, Dexter was ticking the boxes for his height and weight. He was doing well... until...
An examination of his abdomen. I saw the look on the pediatricians face before he spoke. The question of whether he had any issues with jaundice as a newborn, and did he need treatment for it? I explained lights three times and a blood transfusion once. He checked his colour and said it was ok. But....
He has an enlarged liver. He would send us for an ultrasound and blood test and call if anything needed to be followed up.
I wasn’t worried.
Then I googled. I know, I know! That is the worst thing that can be done, but everyone does it!
Enlarged livers can be caused by excess alcohol, fatty diets, high cholesterol – not really relevant right!
But then... blood diseases, leukaemia and cancers. My heart was in my chest.
The sonographer casually acknowledged that he has a “mass that needs to be treated”.
Read more here.
Back then, we had no idea!
Dexter is now about two and a half years cancer clear. Secondary cancers will always be a concern, but his hepatoblastoma has been beaten.
You can support our 2015 Relay for Life team (Love Dexter) here.