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CLIC Sargent.. Harley's Story...

Paul Sneath is raising money for Young Lives vs Cancer

Participants: During the course of the 5 months, for support, some of my really good friends are muddering with me... Thank you so much, from me and Katy, and of course the big man himself...

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Tough Mudder · 29 April 2017 to 24 September 2017 ·

Young Lives vs Cancer Verified by JustGiving
RCN 1107328 (England & Wales), SC039857 (Scotland)
At Young Lives vs Cancer, we help families find the strength to face whatever cancer throws at them. But every day 12 more children and young people hear the devastating news they have cancer. We’ll face it all together – but we can’t do it without you. Visit www.younglivesvscancer.org.uk

Story

Hi, Paul here.... #CLIC Sargent helps families and kids with cancer at every single point of the journey. A CLIC Sargent social worker will visit immediately and help answer, console, assist and guide the family and the child. They go so far in supporting Young Lives Vs Cancer to offer grants, Homes from Home, and even paediatric nurses.

They are amazing and you can help as well - This is for all the kids that CLIC helps but my personal connection to CLIC is an amazing mum and her beautiful little boy Harley, you will hear Katy tell Harleys story later . I want your support  and get behind me to raise as much as we can this year for #CLICsargent. I’ll be doing 7 (YES SEVEN!) Tough Mudder events in 5 months with all proceeds going directly to #CLICsargent . I want you to click DONATE - spend a couple of beers worth or more, and please, everyone SHARE THIS PAGE - POST - LINK ... Thanks guys....

Come on boys and girls lets raise as much as we can - tell a friend, and ask them to do the same!

[from his mum Katy]

Harley's Story.

Young Lives Vs Cancer…


“They said at 1am you are going to St. George's intensive care unit... That night I truly thought I was going to lose my baby. “    ..katy


Born 27.09.13

Harley James was born a week early and weighed 8 lbs. 6 oz.

He was healthy but suffered acid reflux. The first six months of his life was the best memories. I always got comments how gorgeous and how good he was in front of camera.

On 9 May 2015 Harley James and I travelled to Manchester where he had an audition for child talent agency. The manager of agency said to me I'm glad you came. The following day I got an email saying they want to sign him.

In July 2015 Harley start to get an ear infection but maybe it was because he was at nursery. By the 2nd August 2015 I had enough, he had bruises, extremely pale and no appetite.. So I took him to see a doctor which was a student doctor said I have no idea what is wrong. My mom said can you do a blood test. They arranged for it to be done third of August at 3 PM. He was so good having his blood taken we went home and he slept. The phone rang at about 6:45 PM from hospital saying there was something wrong with blood results, they said he needs to be admitted tonight. My knees turned to jelly and I was shaking. I knew then something was really wrong.

My mom called my sister and said got to take Harley to hospital. We went straight to hospital where a consultant came in the room and said he had some type of blood cancer. That night they said they need to put a candle on in which was extremely distressing as he was young his veins were so small they eventually did it. The next morning at 10 PM a.m. 10 doctors came in to Harleys room that's where I met his consultant Dr. Ryalls and said they think it's Leukaemia in young children called acute lymphoblastic leukaemia. I was in utter shock, my sister did all the crying, where I said nothing. Dr Juliet said we need to start treatment straightaway. She said we are waiting for a bed, it will either be Southampton great Ormond Street.

The next day the ambulance came and Harley and I were on our way to Great Ormond Street. When we got there the doctor came in his name was Frederick, he said they need to do a biopsy. It won't happen until Tuesday. That Tuesday it was confirmed Harley James has ALL (acute lymphoblastic leukemia), he needs a port fitted but he is so young and be easier. It was a choice of lead outside the body or under the skin. I took him down for surgery he woke up and I was emotional, everything went well. They started chemo on 10th September, 11th September we were transferred to Royal Marsden in Sutton where I met his consultant Dr Mary Taj. We stayed at Marsden for two weeks before we went home.

In October his body filled up with fluid, and needed help to breathe, they said IV went to his tissue. They said at 1am you are going to St. George's intensive care unit.. That night I truly thought I was going to lose my baby. They had to drain fluid away then we went to Marsden for two weeks from foot.

From November Harley was doing better he was extremely sick with having feeding tube. Harley was then going to Martin four times a week till he went to maintenance May 28, 2016. Ever since then he has done amazing, he always has a smile for everyone. In July I was told he needs a cake which is feeding tube for his oral chemo. Then September talk to Dr Mary Taj saw how distressed he was being restrained they decided he needs a Hickman line for having his blood. As he has no immune system he has to go to hospital if he has a temperature if he neutropenic he can't go to play room as he can't fight infection.

Christmas Eve 2016 Harley was admitted to hospital with high temperature. He woke up Christmas morning to loads of presents which put a big smile on his face . The special moment is when Harley was given a football and he played football with nurses at the reception desk. He was so happy. As a parent seeing him so happy is the only thing that matters to me.

Raising a child on your own is hard enough but having a child with cancer and additional needs like Harley is extremely tough at times. As well as cancer Harley has development delay and possible autism. He is a smart boy and is destined for greatness.

I would like to say a big thank you to people that have been on this journey with us, the Royal Surrey have been amazing always there especially in the beginning when it didn't feel real, to Great Ormond Street hospital who did the biopsy and started treatment. The support I got was outstanding that whole week we were there was outstanding. The Royal Marsden thank you so much for saving my child's life I will forever be grateful.

CLIC Sergeant Maureen has been amazing helping me with all the forms that needed filling out for what Harley was entitled to , you are brilliant at your job.

Donna and Helen specialist nurses at Royal Surrey have been there for us from day one they are truly outstanding at what they do. Always there at end of phone , feel more like close friends than nurses.

Our local catholic parish church have been there for us from beginning . Everybody been so supportive it's overwhelming at times, with them just saying we will pray for Harley means so much.

Id like to thank Harley's godfather Adam and his wife Jo who have become family to us. Harley loves you guys so much , being there for us is something I will cherish forever, Harley has a close friend with Daniel there 18 month old which makes me so happy.

Id like to thank my mum and sister who have from beginning not left our side , they come to every appointment as they don't like me going on our own. My sister gave up her job to be there for Harley . We love you so much Sharon we will never forget what you done for us, we love you.

My friend Tracey wood who son had cancer always there even when it's a bad day she will send me messages saying what a good mum I am which gives me comfort we will win this .

Harley's been through a lot at such a young age. He was delayed in speech and I had an issue with food prior to his leukaemia diagnosis. Though treatment his speech is ever more delayed than his eating has gotten worse. Ever since he went into maintenance he has done amazingly. I am so proud of him he is a strong-willed little man. I believe we are over the worst of now and he is going to be healthy. As his mom is one of the worst things To be told your child has cancer. Also I could focus on was getting stop I am one of the lucky parents. I have my gorgeous little man with me. Treatment will end in January 19, 2019.

Harley's nursery where Harley been since he was 15 months old have been there from beginning , Harley diagnosis effected them deeply as Harley was such a popular child at the nursery. 10 months after treatment Harley went back to nursery they were ecstatic when he came through the door . He loves everyone at Christopher Robbin. He has 2 best friends Francis and Monty who he adores .

I want to lastly thank my best friend Paul who’s idea it was to do this whole fundraising  and raising awareness project for children with cancer and CLIC. You’ve been an amazing friend especially when I need a good rant.....

Thanks for taking a minute to read Harleys story and also for all your donations and shares to help create awareness..

Katy Wolozyn. xx

Donation summary

Total
£169.00
+ £27.50 Gift Aid
Online
£169.00
Offline
£0.00

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