“I am only one,
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything,
I will not refuse to do the something that I can do.”
This is a story that seems to happen way too often: parents taking their children to their GPs/hospitals with major concerns only to be sent away with antibiotics, or being told 'it's a virus' or 'it's anxiety'.
This is Rhiley's story in her mum's own words.
On 8th April 2012, in the early hours of Easter Sunday morning, I gave birth to the most perfect little girl, Rhiley Kim Bennett, weighing a whopping 10Ibs 8oz. My first thought was "Yes, I have a fat baby". Me & Rhiley's daddy Richie was over the moon, our little family complete & we could not wait for Rhiley to meet her 11 month old sister Lily.
Up until 10th May 2014, Rhiley was the most happiest, most adorable, most funniest little girl you could ever meet. Rhiley only ever went to the GP for her baby jabs, she was healthy. Whilst Richie worked all week, I spent everyday having girlie time with my 2 girls, they were my world, my bestest friends.
On 10th May 2014, we all went for 1 week to Pagham. We had 2 little girls that were Peppa Pig mad & we knew we had to take a holiday there. For the 1st few nights, Rhiley was crying. We thought maybe she was teething & so I rushed around trying to find teething gel.
14th May, we spent a fun filled day at Peppa Pig World but later that afternoon, Rhiley was soon laying in my arms crying again. By the end of the holiday, Rhiley was struggling to walk. We soon came home & we took Rhiley into Milton Keynes Walk in Centre. We explained Rhiley's symptoms, she had hardly visited the toilet as I had potty trained her at 20 months old, The doctor explained Rhiley had a viral infection although he had barely examined her, he soon prescribed her a 5 day dose of antibiotics.
22nd May, Rhiley by now was not weight baring on both legs, not eating, not drinking & still crying. I took Rhiley straight to the GP & he prescribed Rhiley suppositories as he thought she had severe constipation.
By 25th May, Rhiley was now screaming as she threw her head back. We took her straight back to the Walk in Centre. Rhiley was seen by 3 doctors, neither one of them could explain why Rhiley was doing this & so we demanded to be sent to Ward 4. 6 hours later & the doctor prescribed Rhiley with her 2nd 5 day dose of antibiotics for another viral infection.
Our 1 big question was, how can a 2 year old be screaming in pain & it only be viral?
31st May came & Rhiley's symptoms wasn't getting any better so we rushed straight back. We spent 3 days waiting for a doctor to see Rhiley & carry out an MRI Scan.
On 3rd June, 3 weeks & 3 days after Rhiley's symptoms begun, a consultant finally gave Rhiley 2 MRI Scans, an x-ray & ultrasound. He then explained to me & Richie that they had discovered a growth at the tip of Rhiley's spine & that we had 2 hours before an ambulance would come to pick me & Rhiley up & take us to the Oxford JR Hospital. I can always remember that moment like yesterday, I was sat cuddling Rhiley on the bed, she laid there smiling up at me as the surgeon & 7 others surrounded us & told me, Rhiley has a tumour on her spine, it is quite large, 7cm in fact & it needs to be removed immediately. Rhiley will be in theatre within the next 12 hours. I burst into tears. I then had to make the worst phonecall of my life to let Richie know.
4th June at 10.30am, Rhiley cuddled her blanky & had ‘sleepy medicane’. 9.10pm, me & Richie were called to see Rhiley. The surgeon stopped us before we could & told us he had removed as much of the tumour as he could but bad news was that the tumour had grown on Rhiley's nerves & that the tumour wasn't just in 1 place but had in fact grown in her brain & all along her spine. Seeing Rhiley is all we wanted to do but seeing her hooked up to all the machines was devastating. The surgeon advised us that Rhiley may never be able to walk again. The following 8 days was the most nerve racking, upsetting & exhausting. Waiting to hear what type of tumour Rhiley had felt like a lifetime & we had to take care of both our girls 24/7 in hospital. Within that week, Rhiley was already sitting up with support watching her favourite cbeebies tv.
On 12th June, we received more bad news, Rhiley's tumour was called AT/RT. We had enough, we wanted to go home with our 2 girls! A lovely lady had to teach me & Richie how to catheterise Rhiley before going home, as Rhiley's bladder had stretched 3 times larger the normal size of a 2 year olds bladder.
Our happy little family life came crashing down around us. Why Rhiley?
On 19th June, Rhiley was due back at the JR to have a Hickman Line inserted into her chest. Rhiley spent the following week being sore but Rhiley kept smiling & was even playing with her dinosaurs & Peppa Pig House. Rhiley injured 3 months of chemotherapy which no one knew if it was even working. In the meantime we had to watch Rhiley feeling sick, loosing all her weight & we found ourselves hoovering her beautiful blonde hair up as it matted & fell out. Rhiley always said "Daddy cut it". Nurses visited Rhiley once, twice a week & Rhiley would shout "No nurses" with her grumpy frown she did. We did however could not have been happier, as 1 evening Rhiley held onto her pink mini cooper ride on & took her 1st 3 steps across the room. She was proving everyone wrong.
On 23rd September, Rhiley had an MRI Scan to determine whether the treatment was working or not. We were all worried sick about the results. 1 week later, we finally received great news at last. The tumours all over were reacting to the chemo & in particular the largest of tumours on her spine were now 7mm. By now Rhiley was getting her strength back & eventually was given a walking frame to help her walk further.
Rhiley's treatment plan was then to change again. Rhiley started to catch infections due to being neutropenic most days & with no immune system we found ourselves stuck in the house. November 2014, was a great month, Rhiley was happier than ever. She had also taught herself how to walk again unaided even though she was paralysed from her left knee down, she learnt how to walk with a splint on her leg all day. She was one tough little cookie!
10th November, Rhiley underwent Stem Cell Harvest ready for 6 weeks of high dose chemo due in January 2015. Rhiley smashed it, she not only gave them the 6 million stem cells they were after but in fact had given them 11 million in 4 hours & then went straight onto another 48 hours of chemo straight after, she was amazing.
On 3rd December, Rhiley's consultant wanted what should have been her last MRI Scan before high dose. We wasn't worried this time, we had seen Rhiley prove everyone wrong but yet again 1 week later we received bad news again. Rhiley's largest tumour had grown slightly & 2 new spots of tumour had grown on Rhiley's neck. The consultant called for a 6th MRI Scan to be done.
So on 23rd December, Rhiley was put to sleep again. We was worried sick & shaking. Whilst every other family were getting ready for Christmas Day, we received a call on Christmas eve. Rhiley's tumours were now all fighting back, Rhiley had 12 parts of the tumour just in her brain alone & high dose chemo & radiation seemed really uncertain now. All me & Richie could do was put on our happy mummy & daddy faces & take our girls outside to see Father Christmas fly by & sprinkle Reindeer food.
We made it the best Christmas we have ever had. Rhiley & Lily enjoyed opening lots of pressies which took 2 days & they changed outfits that day more than once from pretty white fairies, to fluffy Olaf onesies, to cowgirl's with guns. Rhiley loved the fact she was able to stay at nanny & granddad's house for the 1st time
By 7th January 2015, Rhiley had gone 6 weeks without any treatment, we were furious! We then had to drive to the JR to hear what her consultant had to say. That day seems a blur, being told whilst we watched Rhiley play with her sister playdoh & laughing, that if we made the decision to put Rhiley through high dose or radiation treatment, there was a big possibility Rhiley would pass away either during or after & explained it would be a miracle if this type of tumour did not return within months, if not weeks. We drove home, heartbroken, crying. Knowing as Rhiley's parents we did not have a choice, Rhiley's little life was being taken away from us. We knew only 1 thing & that time was now ticking & we had to make sure we spent everyday together.
27th January Rhiley's legs were buckling as she walked.
30th January, Rhiley could no longer walk anymore again.
11th February, Rhiley attended her very 1st day of preschool alongside Lily. She could have not been happier.
9th March 2015, Rhiley had her ‘sleepy medicane’ along with her blanky for 5 days of radiation to her spine, she was unable to sit up straight without pain. Me & Richie made 100% sure that Lily & Rhiley had as much family fun as we could get in between appointments, 11 blood transfusions, platelets transfusion, nurses visiting everyday & Rhiley catching infections still.
2nd April 2015, we moved into our new home. Although we knew it was probably too late for Rhiley to enjoy it, she got to see it & even called our new home "my big one house". We were all so happy with our new home.
We celebrated Rhiley's 3rd Birthday, 8th April 2015, on Looe's beach, Cornwall. Rhiley dressed in her Elsa dress eating cake with princess balloons on the beach, she was happy & smiling.
2 days later Rhiley wasn't herself. She kept saying "Go home now". It hit us hard that something wasn't quite right. Rhiley caught E-coli & on 14th April was only able to sit up with cushions. She was unable to move her legs, neck or back. Rhiley being Rhiley still smiled beautifully everytime.
20th April, Rhiley was now having Ketomine, a street drug, 3 times a day. On 22nd April, Rhiley watched Snow White, she then struggled to stay awake that day, we even visited her favourite place Thrift Farm that afternoon but Rhiley got worse. She suffered with seizures that night & fought her hardest to stay with us.
Rhiley took her last breath in mummy & daddy's arms at 4:56am on 23rd April 2015. 2 weeks after her 3rd Birthday, 1 week before Lily's 4th birthday, she grew her pretty princess wings x