Riley's Leukemia Fundraiser

Here's a letter from my step daughter Hayley, Riley's Mum..


For those that know, an apologies to those who didn’t. Once reading this you’ll understand why you’ve not seen or heard from me a great deal recently but here goes as I try to put it all together.
Late on Tuesday 24th August 2021, Riley was rushed by ambulance to QMC in what was thought to be a Covid related problem, he’d only tested positive 24 hours previously, but after getting out the shower he was covered in a purple spotty rash that didn’t fade when pressed with a glass. The ambulance crew prepared me for possible meningitis, but no. A massive bombshell was dropped when the doctors came to tell me Riley had Acute Lymphoblastic Leukaemia (ALL)
Due to the type of cancer Riley has, it was imperative that treatment started ASAP. There was no hesitation, consent forms were signed an treatment began right away.
Riley has been in hospital since finding out the devastating news, and has undergone operations and procedures including a bone marrow and a GI line an lumbar punctures. The line had to be fitted on his arm for moment as his platelets were too low to have it the Hickman line (wiggles) in the chest. The line helps keep Riley more comfortable by reducing the amount of needles he has to have, as, through this line the doctors are able to administer things such as chemotherapy, medication and withdraw blood for analysis. This was a massive help untill he was well enough to have his wiggles.
Riley started his first round of chemo which he took really well and was in high spirits.
August bank holiday weekend however, was really tough and traumatic. Riley had nose bleeds that he struggles to stop and has been extremely sick and sleep deprived too.
Saturday 28th august another bomb shell struck. I tested positive for Covid, this meant Riley and Myself had to self isolate in his room for 14 days, preventing us from joining ward E39 the teenage cancer ward. I don’t know how, maybe because mum mode was in overdrive but I was thankful I didn’t suffer any symptoms at all. For 5 days I was positive.
We were fortunate that after a few days on E37, we were moved to an isolated room on E39, because he needed the specialist care only their nurses could give. That didn’t last long though on Wednesday 8th September riley took a really bad turn an needed oxygen to help him breath. Covid had well an truly waltzed in an because of how bad he was deteriorating we had to be moved to PICU (intensive care) the first two days were hell. Riley had gone from me being with him 24/7 to now I had to leave him at night time he didn’t take to that very well an made him more stressed. There was no room for me to sleep in the same room with him. His breathing got worse, he struggled to accept what was happening to him as he was placed on high flow oxygen mask. The doctors warned me of possible incubation an the likelihood we could be here for 4-6 weeks!!
We spent two weeks in PICU, the staff there was amazing an after the first week he was beginning to make baby steps improvements. The only problem was Riley was coming towards the end of his first block of chemo treatment, which meant another bone marrow an lumbar puncture procedure. Worry set it because of how bad his current situation was, meant that he couldn’t have those procedures he was high risk for surgery. Thankfully his oncologist planned for this an she started his next block of treatment with a window to wait for his procedures to be completed.
On the 13th day in PICU, Riley’s oxygen levels were low enough for him to be moved back to a normal ward. We went full circle an back to E37 that was because Riley was still testing positive for covid, we were back in another isolated room but back being together 24/7. Riley was happy.
From there Riley was weaned down from high flow oxygen to regular air flow. Then finally on the 27th of September Riley was off all forms of oxygen an breathing on his own!!!
We now had to hope he regained strength as his surgery procedures where scheduled in for that Thursday. I was so anxious, every little cough, stomach ache or bad day worried me that his surgery wasn’t going to go ahead. The anaesthetist came round Wednesday to check on Riley an let me know if it was a yes or no.
We got the go ahead, so Thursdays morning much to Riley’s protest he was nill by mouth an ready for his surgery, they also used this opportunity to take his line out from his arm an fit him with his Hickman/wiggles. This felt so daunting, there was a whole new load of stuff to learn how to take care of. Once out of surgery (2 hours) he came round really well an enjoyed a KFC as a reward, by god he’d earned it. There was also talks that after the weekend we could go home, his second block of chemo treatment was mainly home care. I just couldn’t believe what I’d heard. Finally after almost 6 weeks being in hospital Riley was allowed to go home, to see his sister an family he’d missed for so long, to get in his own bed an all the home comforts he’d missed (they PS4)
Finally Monday came, the oncologist told us those magic words “your getting discharged today, you can go home Riley” I was so relieved. It was so nice to see Kera waiting for him outside the ward, it was a very tearful reunion that even made the nurse cry. We pushed his wheelchair so fast we were almost running out the place to get to Nanna Nikie’s car. He was so pleased to see her too, the tears started all over again.
Finally we were home, where we have been adjusting to life at home since. Riley still has to go back an forth from Queens at the weekend for more treatments, but we don’t care majority of our days are at home.
To add to the great news Riley finally tested negative for covid on 5th October, which now means he can have procedures on the cancer ward in their day care surgery. He can go onto open wards an be around other people an not have to be confined to a side room.
These last few weeks as you can imagine have been a whirlwind. Thanks to everyone with their thoughts, prayers and well wishes it has kept both of us going more than you will ever know.

Thank You to Hayley for sharing some of Riley's journey so far x


I think it's important to remember the timeline, during a global pandemic, just as the world was opening up and kids were preparing to be back at school, Hayley and the family were faced with this bombshell.. So, since just after Riley's 9th Birthday, the world closed down and kids were kept away from all the normal stuff they should enjoy, school, time with their mates and the general things we all took for granted, it's been tough on all the kids.. but then this just took more of Riley's childhood away, he is 11 on February 12th, that's a lot of childhood to have missed out on.
This fundraising event is for our grandson Riley and his fight against his battle with cancer  
The goal is to raise enough to buy Riley a Lego technics set for one of the cars he loves - anyone who knows Riley will know about his passion for sports cars.. a driving experience track day - in a Lamborghini   would be amazing as well..
Any additional funds will be kept to one side for treats, to shine a light on the darker weeks and give the family some fun times to look forward to.. such as cinema trips, bowling.. maybe even a couple of nights away..
We would love to offer thanks to Kera, his big sister and give her a treat to show how proud we are of her too.. it's not been easy on her   xx
and we can't forget the amazing staff at QMC and the other kids who show their resilence and bravery on their journey too..
Anything we raise will go to a good cause, but initially the goal is to raise enough to treat Riley and show our admiration for his fight and determination  

We have to give special thanks to the Bennett's, Kim, Florence and Noah, they all have beautiful long locks and they often grow their hair and cut it off for good a cause and this time they have come forward to do this for Riley.. Without Kim's suggestion to do this, the event wouldn't be happening. It was her kind heart that inspired this event and her willingness to go the extra mile to just give a kid, what a kid deserves.. what amazing friends, I will be forever grateful to you and your gorgeous kids, Kim Bennett     
We really hope that you can join us to support this wonderful event, but any donations or sponsorships would be gratefully received.
Thank you to Top Valley Social Club for hosting this event and the support that they have given us..
One last thing, Riley's favourite colour is green, it would be brilliant if we could wear something green on the day    
let's make it an event to look forward to, get involved and let's get together for Riley!