A year later, after chemotherapy and the all-clear from the doctors, she was diagnosed with a regrowth of the same tumour. Throughout Roxie’s journey I kept a diary, so this is our story…
Roxie-Beau was just two years old and kept being sick in the mornings. She also became unbalanced, went off her food and milk and her attitude changed, but we just assumed it was down to the ‘terrible twos’. After countless doctor’s appointments, an MRI scan showed that Roxie-Beau had a brain tumour in her head the size of a cricket ball. Our hearts were broken, words couldn't describe the numb feeling.
Roxie immediately had 9 hours of surgery, followed by another 15 hours of surgery to remove the tumour. Her hair was shaved and she had tubes everywhere. Afterwards, the doctor who was performing the surgery came and told us we had lost Roxie twice during the surgery, but they had successfully removed 99.9% of the tumour. Roxie was placed in intensive care. It was so hard to see our little princess motionless and with wires and tubes everywhere. The doctors did tests on the tumour and told us it was the dreaded ‘big C’ and that Roxie would need chemotherapy for 7 months.
Roxie had more surgery to have a Broviac line fitted in her chest to get medicines and chemotherapy drugs into her. Seeing all her different drugs was shocking but Roxie took it all in her stride. She was so brave, and we were finally getting lots of cuddles and a few cheeky kisses!
When Roxie’s chemo started, we had to start looking at our future financial plans. We’d already had six weeks without being paid, which took a toll on us financially. Family helped us where they could, which was difficult as we are a proud family, but SSP alone just isn't enough to live on. We agreed to get part one of the chemo out of the way and then split shifts at the hospital so that I could work.
The months went quickly, and splitting our time between the hospital and home seemed to work well, however, not being able to put in the hours at work made money very tight. During the second stage of chemotherapy, Roxie had to shower every 6 hours and have all her bedding and clothes changed each time, so we had to buy her lots of extra shorts and vests.
Most days Roxie just laid motionless, and the feeling of not being able to help her crushed me inside. I was supposed to protect my little girl, and I couldn't. I hated the world so much and I kept blaming myself, thinking I could have done something differently.
Roxie finally reached the end of her chemotherapy, and was allowed to come home. She had an MRI scan to compare to future scans and the results showed that all was ok and there was no re-growth. We were the happiest parents alive and to celebrate, we scraped some money together for a takeaway treat.
One year after diagnosis Roxie had a great few months and she was very excited for Christmas. She understood that she would get some presents and wrote a letter to Santa. After everything we’d been through, we thought this would be the best Christmas ever.
Unfortunately, it just wasn’t to be. Only weeks before Christmas, Roxie had a routine MRI scan that showed something abnormal. Roxie’s brain tumour had grown back. Rachel and I started to cry, we were both numb. Roxie was playing peek-a-boo with the other doctor, and we were confused because she hadn’t shown any of the signs she had last time. We were so shocked. Seven months of chemo had been a waste. What now?
My work said I could have as much time off as I needed, but only with statutory sick pay, and our other children went to stay with family. They were devastated, but putting on a brave face and acting so grown up about everything.
Roxie needed surgery, lots of surgery. Roxie underwent six operations in 17 days. She was bed bound and didn't move for days. She was in so much pain and cried whenever she wanted to move.
Roxie wasn’t allowed home for Christmas, which meant our family were divided again. She didn't even know what day it was, and only managed to open a few presents. Rachel and I were both so upset that we went outside for a cry.
After Christmas, Roxie had another three operations and, thankfully, started to improve. She had a CT scan in preparation for her radiotherapy, and had tattoos (yes tattoos!) to mark where the radiotherapy would be aligned to.
We took Roxie home for three days and when we went back, the doctors asked to see us immediately. They had found a dark patch on the scan and wanted to delay the radiotherapy for her to have further tests. More scans revealed that the tumour had re-grown since her surgery five weeks earlier! We were devastated all over again. Was Roxie ever going to get a break? She had radiotherapy blasts to her head and back, plus eight different medicines three times per day.
In January, Roxie finally got a clip in her hair. Proud daddy moment, her hair came back a lot in such a short space of time.
Me and my big mouth, three weeks into radiotherapy Roxie lost all her hair in one night. I woke up looking like Teen Wolf! Heart ache all over again, will she ever have any hair?
Reading this back has opened my eyes to a lot of things that we went through as parents - things no parent should ever have to go through. Work, hospital, work, hospital, work, hospital. That has been our lives. However, Roxie has been happy thanks to the iPad, Play Doh, Paw Patrol, Peppa Pig and Mashums keeping her entertained at the hospital.
I have always worked hard and I strive to do my best for my family, but nothing could have prepared us for the costs that have been associated with Roxie’s diagnosis. We live so far away from the hospital that there is no way to avoid the debt, it’s not just a quick car journey now and again.
We are a proud family who have been thrust into a difficult situation, and we hate asking for help. However, the support we have received from Lennox has helped us to pay outstanding bills and get 'back in the black'! Your donations have also put a smile on Roxie’s face by helping us to purchase a little playhouse and we are so grateful.
Roxie's dad has told us that he is extremely grateful for the financial and emotional support that the family have received from our team. It has allows them to concentrate solely on their family and spend less time concerned about finances.
Your donations have also enabled Roxie's family to book a family trip of a lifetime to Disneyland in Paris later this summer! They have promised to send us some photos when they get back!
To read Aaron’s full diary, and more about Roxie-Beau’s story, visit: www.lennoxccf.org.uk
To make a personal donation to Lennox Children’s Cancer Fund for Roxie-Beau’s Appeal:
Text ROXB43 £5 to 70070 to donate £5
Text ROXB43 £10 to 70070 to donate £10