Taro’s Story

Taro (Taz) was the only boy of 6, he has 5 sisters, 4 older and 1 younger. We were super excited when we were told we were having a boy. He was a healthy 9lb 7oz but as he got older, we noticed he couldn’t sit up on his own, he kept falling, he wasn’t crawling, so we took him to the doctors who referred him to the hospital where he was later diagnosed with mild cerebral palsy. We were devastated, they told us he would never be a footballer and would never ride a bike!

That’s when we found out how strong willed our beautiful boy was. He was the most determined little boy ever. He started walking at 2 years old, he learnt to ride a 2-wheeler bike at the age of 3½, he played football. He did everything with the biggest smile on his face, albeit he wasn’t as steady in his feet as the other children, he had special boots and leg splints when he was young, and he would fall over a lot, but he just got straight back up and carried on! He went to a normal school because I didn’t want him labelled. I wanted him to know he was as “normal” as the next person and knew he could put his mind to anything and give it a go. He absolutely loved school, was very bright, loved maths, loved PE and he had so many friends. He could just meet complete strangers and in 2 minutes they were best buddies!

Then he went to secondary school. He would ride his bike as it was only 2 roads up. He had so many friends, he loved music and dance and wanted to be a computer programmer and make games for the PlayStation. He regularly had botulinum injections in his legs to relax his muscles, and then one day when he was 13, he started complaining of his hips hurting. I took him to the doctor and they said it’s just his CP he might need his injections earlier! But we couldn’t get an appointment so he kept getting sent home from school as he couldn’t get up the stairs anymore. He then started getting frustrated and losing his temper a lot and shouting at me which is something he never did, he used to get upset and say, ‘I’m sorry mom I don’t know what’s wrong with me’! We kept going back to the doctor, but we weren’t getting anywhere!

 He had a physio appointment and when she checked him, she said you need to take him straight to the hospital as I think this is neurological, so we did. They checked him over and sent him straight for a CT scan, they admitted him and then came back to us with the results. Which were that Taro had lesions on his brain. They said it could be MS so they put him on a steroid drip. By this point Taz couldn’t walk anymore. A week later he was transferred to the children’s hospital who looked at the images and told me it wasn’t MS, it was a brain tumour and that he needed to be admitted straight away. We met with a neurosurgeon, an oncologist and a Macmillan nurse! WOW!!! There was so much to take in, it was a whirlwind. He had a diffuse Astrocytoma, which was all over his brain and down the cortex. He had a biopsy, which then told us it was cancer. It was his 14th birthday, and we were devastated. We didn’t want to tell him to spoil his day but he knew something wasn’t right. We made his birthday special, the nurses got balloons, we got a cake and all his presents and we took him to Nando’s for dinner with our family and friends. He had to go back to hospital after.  Then he started radiotherapy. His friends from school would come every day to visit him, it was amazing, he absolutely loved it, a bit of normality for him.

In October he was going into school for an assembly and as I was getting him dressed, he started having a seizure which was the most horrendous experience of my life to watch my beautiful boy go through! The doctors came but his seizures wouldn’t stop. They were just constant so they had to sedate him but even then I could still see that he was fitting! He went into intensive care for 2 weeks. He slowly came round but had a lot of pain in his legs, they were worried he wasn’t going to be able to have radio because he couldn’t keep still with the pain.

I suggested they give him his botulinum, so they did and it helped a lot. He was able to go and get measured up and fitted for his head mask, as he had to have full brain radio. We went everyday. He was so good, he laughed and joked with the ambulance drivers on his journeys. After radio finished, we were told that it didn’t do what they wanted, which was to bring the tumours into one, so then hopefully they could remove it. They told us there was nothing more they could do and he was being assessed to go to Great Ormond Street for some new treatment but he was too poorly to travel. He started going downhill from the start of the seizures, he had lost use of his legs which were extremely painful for him, he had constant massages and physio. He lost the use of an arm and after the radiotherapy he lost use of his other arm. Then his voice. He was swollen and bloated from the steroids, he hated looking at himself. He didn’t want to see himself the way he looked. Acorns Children’s Hospice were involved, as he was going to have hydrotherapy with them which he had at the royal orthopaedic.

By end of April, beginning of May he was deteriorating, and he lost the sight in his left eye, which he had to wear an eye mask over. One of the nurses made him an eyepatch for everyday in his favourite things - a superman one, a Spider-Man one, a Professor Green one, a Stitch one - he loved them! Taz then developed an infection in his left lung and was given morphine for his pain. That’s when I decided I wasn’t going to let him die in that hospital.

 I contacted Acorns who sorted everything out that same day and we had him transferred to Acorns Worcester. We were there for 2 weeks. Taz was asleep really, as he was on a driver for his pain, and then at 2.20am on May 21st,  I watched him take his last breaths and my heart shattered. I woke his dad, who called the nurses. The doctor came and checked him and told us he had gone. They wanted us to go in the other room while they washed him and dressed him, but I said no, I’m going to do it, so that’s what I did with their help. They transferred him into the “special bedroom” where he would stay until his funeral day (I hate saying that!).

 While we were in hospital at the beginning, Taz wouldn’t let me out of his sight. I slept in the bed with him and could only go for a quick shower while one of my sisters were there and straight back. He said to me, don’t leave me mom and I promised I would never leave him. I slept in the special bedroom with him for 2 wks, I just wrapped up warm and my family were allowed to stay and visit whenever they wanted. It was absolutely amazing the support we got from Acorns. I will never forget it. We have raised money in Taro’s name for them ever since. 

Losing your child has to be one of the hardest things in the world especially when they say to you, ‘Am I going to die mom’. What do you say? My boy was so brave and courageous, he gave me the strength to get through each day and still does now. He fought every day with a smile on his face, something that he was known for was his beautiful smile - he would light up a room! #TeamTaro