I was born on 12th March 2003. I was a happy baby until I was about four months old. My parents noticed that I started to scream a lot during the night as if in pain, they were pretty sure I was teething. A few weeks later they noticed that I wasn’t using my legs very much. After another few weeks I woke one morning and seemed very unwell. Throughout the day I seemed to get worse so mum took me to the GP. We were sent home, having been told I had a viral infection.
A few hours later my breathing was laboured and another GP sent us to A & E. After various tests I was diagnosed with pneumonia. Everyone was devastated as their 5 month old girl was admitted to hospital for IV antibiotics. I was given a nebuliser every six to eight hours, IV antibiotics and placed on oxygen to help with my breathing. After a couple of days I didn't improve so was sent for an ultrasound of my chest and lungs. The scan showed that my lung had collapsed. The doctors decided that I needed to be transferred to London’s Royal Brompton Hospital to have a chest drain inserted. Obviously I don't remember any of this as i was only young, I can only go off of my mum's word, but hopefully you get the idea.
Anyway, after that, we were taken to Royal Brompton in an emergency ambulance and I was taken immediately to theatre. The doctors inserted a chest drain to drain the fluid and re-inflate the lung. I was in the high dependency unit (HDU) and I seemed to slowly improve. For the first time in a week my family felt relaxed and confident I was on the road to recovery. They were wrong. On day four I was very ill and the doctors ordered a CT scan. After about two hours mum was told that they thought I had neuroblastoma. Of course none of us knew what this meant until we heard the dreaded word, "cancer".
I was transferred to Great Ormond Street Hospital the next morning, which is where I currently have all my treatment and operations, alongside Stanmore of course. I had to be “staged” and have lots of tests to determine what should be done. By this point I was very ill and went into respiratory arrest. I had to go to PICU (paediatric intensive care unit) and I was put on a ventilator. My oncologist said that I must start chemotherapy straight away as the tumour was compromising my breathing.
After ten days I was taken off the ventilator as the chemotherapy was working and reducing the size of the tumour. Further tests showed that I was a “stage 4 neuroblastoma” this was unusual for a five month old baby, at the time.
I had three days of chemo, every twenty-one days for four months, then five days of chemo every twenty-one days for two months. Just after my first birthday I, thankfully, had the tumour removed. The surgery was very risky as the tumour was wrapped around the aorta and spine. The surgeon removed what he could but there is still has some residual tumour that is inactive.
Unfortunately, due to the location of the tumour, I have been left paralysed from the waist down. This was caused by spinal cord compression. I have also developed scoliosis (curvature of the spine) as a result of the tumour. When I was three years of age, i had metal growth rods to straighten my spine. Although, after a trip to Stanmore hospital, i found out that i have an obliquity in my hip, which unfortunately not be fixed.
In 2012, my growth rods were removed and i had a spinal fusion. I was in surgery for about 5 hours (from what I was told). This surgery has improved my scoliosis (from T7-T12) so that I can sit up straighter and am not so lop-sided in my everyday life, however this did not help the obliquity in my hip.
I also have a spinal jacket/brace, which I wear everyday at school, so that I get less back pain during lessons and PE.
We were also told by my oncologist that the chance of relapsing is less than 1%, which is very reassuring. Also, I have a neuropathic bowel and bladder and I have to be catheterised every three hours. I used to have to do this urethrally, but in 2013, I had a life-changing surgery, so that I wouldn't have to do it this way. The procedure was a mitrofanoff and an ace. (I also had a bladder enlargement at the same time) This means that I have a hole in my belly button, which goes into my bowl (ace) and a hole to the side of it, which goes into my bladder (mitrofanoff)
My most recent surgery, however, was a very small one compared to the ones that I'm used to-they had to trim the rod because it was digging in to the top of my neck, which was causing a lot of pain in my upper back and spine. This surgery went so quick, as I was only in theatre for approximately 1 hour. However, I am still recovering from this operation, as it was only 1 week and a half ago.
However, despite all these problems, I am a happy 14 year old who likes to get involved with everything she can, including wheelchair dance, wheelchair basketball, and wheelchair tennis.
I also have a YouTube channel, which I am sure you're aware of https://www.youtube.com/channel/UCGf9gRHOAfWy2pKBBj-C-vQ
My Instagram is megan_hierons so you can DM me about any problems if you wish...
