Acacia’s dream trip to Disneyland Paris

Wistaston Academy cycle from Crewe to Disneyland Paris   

On 30th April 2021 staff from Wistaston Academy will be cycling, on exercise bikes the 485.4 mile distance from Crewe to Disneyland Paris to raise money to make our very own Disney princess' dreams come true! In September 2020 Acacia, a year 1 pupil at our school was Diagnosed with an incurable brain cancer called Diffuse Midline Glioma H3K27M. 

We will begin our challenge at 8:30am on Friday 30th April & will not stop until we’ve completed the distance. We aim to raise as much money as possible to help send Acacia and her family to Disneyland Paris to make magical memories together. 

Please read Acacia’s story, written by her amazing Mum Carly...

On the 26th of August 2020, we were out for a family meal as part of Acacia's stepdad's Birthday. 

Throughout the meal Acacia said she felt tired and a little bit off, but we carried on with the meal and said she could have an early night when we got home. 

The next morning while uploading the pictures to Facebook, we noticed a significant difference in her face. She had one eye almost closed, and her mouth was completely slanted on one side. 

We took her to our local doctors and after an examination, they determined that she had a condition called Bell's Palsy. We we told to go to ward 16 at Leighton Hospital for a second opinion as she just wanted to make sure it was Bell's Palsy. Acacia was assessed  at Leighton Hospital by numerous doctors, and we were given a 5-day course of Steroids and were sent on her way. 

The day after the steroid's had finished, on the morning she was due to return to School after the long summer holidays, we woke up to find Acacia in an almost drunk state, she was vomiting heavily and was so dizzy she could barely walk. It was like she'd been drinking all night. 

Ben (Acacia's Stepdad) rushed us to Leighton's A&E department but due to covid I had to take Acacia in alone. I was told that it was the Bell's Palsy, and more steroids were needed. After speaking to my Mum and Ben, I asked the doctors if Acacia could have a scan just to be sure as we weren't convinced it was Bell's Palsy. 

A few hours after the scan a nurse came to sit with Acacia, and I was escorted to a meeting room with a consultant to discuss the results. This in itself was abnormal, and I knew something was wrong, I was not however, expecting to be told they had found a mass on her brain. 

I was told that we were being transferred to Alder Hey Children's Hospital in Liverpool immediately via the next available Ambulance. I was told to call Acacia's Father, and my own family to make them aware and prepare for the transfer. 

The transfer itself was a nightmare, the sirens and the rush was a real panic to how serious this must be. 

We arrived at the hospital and Acacia was immediately assessed and transferred to a ward. By this point it was around 8pm, we were placed into a private room and all through the night doctors and nurses were in and out checking on her and checking all her vitals like clockwork. 

The next morning Acacia was sent for another scan on a more accurate and precise machine to give the doctors and us, a better idea of the severity and what to do next. 

When we received the results, the doctors were unsure exactly what the mass was but that they were arranging an operation to conduct both a biopsy and to remove as much of it as physically possible.  As the mass was wrapped around her brainstem, removing it all would have left her completely paralysed and so was not an option for us with not knowing exactly what it was. 

The doctors allowed us to go home for 2 days before her operation, we felt this in itself was a blessing and reading between the lines, we felt like she was sent home to say goodbye in case anything went wrong during surgery so as refreshing as it was to be home, it was also very emotional. 

On the 10th September at 8am, Acacia was taken for surgery and this was the longest day of my life. I had a call at lunchtime that day to say the surgery was going well and they were on track to finish around 5pm. 

Once the ward had called to say she was back, we rushed back to the hospital from our Mcdonald housing to see her. As you can imagine, she was in tears, and so were we. Our little girl had 8 cannulas in her body at once all doing different things, a tube in her nose and another tube in her head. She was in a lot of pain and could barely speak. 

After some morphine, she was singing all night long and her Stepdad was allowed onto the ward to see her that evening, they were both singing, and she seemed to calm down once he arrived. 

The following Tuesday 15th September was the day we were expecting the results, only 5 days after her surgery; Acacia was up and about and with help from the steroids and painkillers, she was ready for home. 

I had spent the weekend in the hospital thinking of the results and had prepared myself for it to be cancer, but was assured if it was, she would have Chemotherapy and she'd be fine, because of how lively and strong she was, no one expected what came next, not even the nurses. 

5pm on the Tuesday, I was taken into a meeting room, I was given the news, Acacia has brain cancer. No amount of preparing made it any easier, I broke down in tears and had to leave the room to stop myself being sick. Once I'd calmed down, I went back to the room and it was explained that she had the worst type of cancer possible, and it is incurable.  They estimated she had 12 months but more likely 6-9 months and chemotherapy would not work so the only option was radiotherapy to prolong her life, but no cure existed for her condition. 

The condition is called a Diffuse Midline Glioma H3K27M. It's the ending part (H3K27M) that basically means a mutant variation of the cancer that's very aggressive and incurable. It broke my heart, 100X more than I ever knew possible, the "normal" cancer I could have dealt with, it would have been awful, but a damn sight better than what she was diagnosed with. 

As it was around 6pm by this point, the doctors said we could stay the night or go home this evening. Immediately I said I was going home, and my Dad and Ben came to collect us. 

Ben would tell you it was the quietest and most awful 90-minute drive home ever. Even the radio was silenced. 

We stayed with my parents for the first 3 or 4 days and that first night, we didn't sleep at all, we all just cried, Ben was outside talking to his family on the phone for a very long time, he tried so hard to hide his tears and be strong for us. 

The only good thing was seeing my son Landon after nearly 2 weeks apart, Acacia was happy to see him too! 

Once we'd got home, my phone and Ben's were going off all day, every day. Messages, Calls & Emails flooding in left, right and centre. Ben took care of most of it for the first week or 2. I couldn't bring myself to talk to anyone except my parents. I wanted to turn my phone off more than anything. 

2 weeks after her operation, she was virtually back to her normal happy 5-year-old self. 

4 weeks after surgery, the radiotherapy started. 13 sessions over 4 weeks. The first day she started vomiting again and screaming in pain with a headache we spoke to the radiologist and they told us to go to Leighton Hospital immediately, she was given an anti-sickness medicine and she was back to normal after that.
She was incredible with her radiotherapy after that, she sang everyday while she laid on the bed. She raced the nurses down Clatterbridge Cancer Hospital's corridors after each session. She rang the bell at the end too which was so nice! She was so excited for that part; she is honestly braver than anyone I know. She puts most adults to shame with how strong she really is. Nothing phases our little princess. 

Acacia had an MRI on the 23rd of December 2020 and following radiotherapy, we were nervous about the results to say the least. Especially with Christmas a couple of days away. 
The results showed the swelling on her brain had reduced and for now, the tumour was holding stable. 

Acacia continues to do really well on a daily basis, due to covid, she stays at home and has an online class with her tutor every day.  She is back to running around, riding her bike and apart from her eye looking inwards, you wouldn't know our little girl has this horrible monster inside of her. 

She continues to amaze us daily with how strong she is, she has an MRI scan in March 2021 and we're nervous about the results as it's now 6 months since the operation. 

Even though in the back of our heads, we know we may not have all the time in the world, we're still smiling, still having as much family time as possible and are thankful for her every single day, and the sooner the restrictions are lifted we can begin making memories everywhere with our family and close friends!