The Big 'C' (In the words of Dexter's Mum)
One in two Australians will be diagnosed with cancer by the age of 85 (www.cancer.org.au). So in my little family of three (now four), 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.
Following on from the routine pediatric check (because Dexter was born prematurely), where an enlarged liver was diagnosed, has been one hell of a ride. If we thought we had a lot to deal with before, we were so wrong!
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 (remembering he was born at a different hospital, so they don’t know his history), 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”. I'm still waiting for the call from the pediatrician. Every time the phone rings, my heart stops. Its reminiscent of this time last year – no wonder I avoid the phone when things are going well! My husband is on standby in case we need to make a rushed trip to the kids hospital in Sydney. Concerned family and friends are constantly questioning updates.
I'm too scared to make the call to check – I'm not sure how I will handle more bad news. I'm holding it together, but exhaustion is setting in. I don’t want to be the rolling ball – I want to be the ball that lands under the bushes and gets forgotten about for a few months – the one that doesn’t get bounced or rolled – it just gets left alone with no bad times.
A week of anxiously waiting by the phone actually gave us some false hope... if they haven't called, maybe it's going to be ok... Wrong. We found out the pediatrician was on holidays and the long, drawn out wait was nothing short of horrible. But the next week, all the answers and thousands more questions started flooding in. This is how it transpired:
Monday – call from the pediatrician confirming that there is a mass on Dexter's liver needing further investigation, which the pediatrician had arranged at Randwick Children’s Hospital. ‘You will be there for one night’ he assured me – only because he had to go under a general anaesthetic for the MRI.
Tuesday – frantically cancelling and rescheduling appointments and trying to sort out the mess that was our heads (I've since come to the conclusions that that will never be sorted!).
Wednesday – Admission to the Oncology ward and meetings with the Oncologist. He prepared us, that although he hadn’t seen the scans yet, it was more than likely cancer that we would be dealing with. Our one night stay was never mentioned again. We were looking at a one to two week stay while they did further testing and sorted out treatment. We met Rehabilitation consultants for his Cerebral Palsy (CP); play therapists; nurse consultants; anaesthesiologist and surgical team representatives. So many people, so many names, so much information.
Thursday – a fasting boy for almost 22 hours while we waited for the CT scan. What we were going through slowly started sinking in. Nerves were well and truly frayed – but it was, and continues to be, the strength of my husband and my relationship that held us together.
Friday – The confirmation that Dexter has a tumour in his liver with a lesion in his lung. Our worlds collapsed.
More tests will confirm the extent and type of cancer. Once we have this, we will discuss and commence treatment. My little man, who has only just started getting his hair, will undergo chemotherapy. We don’t know how intense at this point, only time will tell.
We once again start the waiting process.
In a freaky twist of fate, we were sent home for the long weekend. Driving back in the dark on Friday was reminiscent of one year ago. I had my first day away from Dexter over the June long weekend. When I returned, we were hit with a big slap in the face and told of his PVL.
But, once again, we are not alone. Love, laughter, support, food, alcohol and care packages have been provided. Dexter has touched so many people in his short life and they all want to help. He is one lucky little man to be loved by so many people. And once again, it is this support that will get us through this shitty time.
One in two Australians will be diagnosed with cancer by the age of 85 (www.cancer.org.au). So in my little family of three (now four), 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.
Following on from the routine pediatric check (because Dexter was born prematurely), where an enlarged liver was diagnosed, has been one hell of a ride. If we thought we had a lot to deal with before, we were so wrong!
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 (remembering he was born at a different hospital, so they don’t know his history), 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”. I'm still waiting for the call from the pediatrician. Every time the phone rings, my heart stops. Its reminiscent of this time last year – no wonder I avoid the phone when things are going well! My husband is on standby in case we need to make a rushed trip to the kids hospital in Sydney. Concerned family and friends are constantly questioning updates.
I'm too scared to make the call to check – I'm not sure how I will handle more bad news. I'm holding it together, but exhaustion is setting in. I don’t want to be the rolling ball – I want to be the ball that lands under the bushes and gets forgotten about for a few months – the one that doesn’t get bounced or rolled – it just gets left alone with no bad times.
A week of anxiously waiting by the phone actually gave us some false hope... if they haven't called, maybe it's going to be ok... Wrong. We found out the pediatrician was on holidays and the long, drawn out wait was nothing short of horrible. But the next week, all the answers and thousands more questions started flooding in. This is how it transpired:
Monday – call from the pediatrician confirming that there is a mass on Dexter's liver needing further investigation, which the pediatrician had arranged at Randwick Children’s Hospital. ‘You will be there for one night’ he assured me – only because he had to go under a general anaesthetic for the MRI.
Tuesday – frantically cancelling and rescheduling appointments and trying to sort out the mess that was our heads (I've since come to the conclusions that that will never be sorted!).
Wednesday – Admission to the Oncology ward and meetings with the Oncologist. He prepared us, that although he hadn’t seen the scans yet, it was more than likely cancer that we would be dealing with. Our one night stay was never mentioned again. We were looking at a one to two week stay while they did further testing and sorted out treatment. We met Rehabilitation consultants for his Cerebral Palsy (CP); play therapists; nurse consultants; anaesthesiologist and surgical team representatives. So many people, so many names, so much information.
Thursday – a fasting boy for almost 22 hours while we waited for the CT scan. What we were going through slowly started sinking in. Nerves were well and truly frayed – but it was, and continues to be, the strength of my husband and my relationship that held us together.
Friday – The confirmation that Dexter has a tumour in his liver with a lesion in his lung. Our worlds collapsed.
More tests will confirm the extent and type of cancer. Once we have this, we will discuss and commence treatment. My little man, who has only just started getting his hair, will undergo chemotherapy. We don’t know how intense at this point, only time will tell.
We once again start the waiting process.
In a freaky twist of fate, we were sent home for the long weekend. Driving back in the dark on Friday was reminiscent of one year ago. I had my first day away from Dexter over the June long weekend. When I returned, we were hit with a big slap in the face and told of his PVL.
But, once again, we are not alone. Love, laughter, support, food, alcohol and care packages have been provided. Dexter has touched so many people in his short life and they all want to help. He is one lucky little man to be loved by so many people. And once again, it is this support that will get us through this shitty time.
Read more - Chemotherapy