Oliver's Blog

McDonald’s Winsford Raises £240 for Oliver

2017-09-25T20:19:21Z

Our local McDonald’s in Winsford organised a ‘Back to School’ raffle and a colleague karaoke night to help raise funds for Oliver and managed to raise a massive £240! We would just like to say a huge thank you to everyone at McDonald’s and our local community for getting behind Oliver and contributing towards his specialist equipment. It’s quite overwhelming knowing people that we have not met before are willing to donate and support Oliver.

Thank you ALL for your support, it really is making a difference!

Fundraising Event – Hike up Snowdon – 7th Oct 2017

2017-09-05T20:02:32Z

In just 4 weeks time, on 7th October 2017, a group of friends and family of Oliver’s will summit Mount Snowdon and will be raising funds to go towards Oliver’s fund.

A separate JustGiving page has been set up for this event. Should you wish to donate, please visit https://www.justgiving.com/crowdfunding/oliverprice-amuptee

If you would like to take part in the walk or know anyone who may want to be involved we would be delighted for any other volunteers we are asking for individuals to raise a £25 minimum as a donation.

We have created a sponsorship form for our volunteers and it can be downloaded here –Sponsorship Form

Thank you all and see you all at base camp! A special thanks to Sally and Liam Banks who have organised this event.

Just Giving Page

2017-09-04T20:14:35Z

We have set up a JustGiving page for Oliver to help raise funds to go towards specialised equipment he will need in his early years, check it out! It’s gaining lots of support and we cant thank everyone enough for helping to reach the target!

Video – Oliver mastering his scoot

2017-07-25T19:31:57Z

He’s only been on it a few times but he has already mastered getting around the house. I did have to help him a bit after he said he was ‘stuck’. .

Day of the amputation – 2nd June 2017

2017-07-21T18:28:01Z

It was the morning of the operation. I didn’t sleep, I couldn’t, to many thoughts going around in my head. Telling myself this is real, this is happening today, I’m saving my baby but in return his leg has to be taken away and it’s a feeling I can’t explain. Our lives will never go back to the way they were before; they wont go back to ‘normal’. All within a few hours my son’s life is taking a totally different path. How did we get to this point? Trying to imagine your child without a limb, it’s near impossible. I found it really hard trying to imagine it not being there anymore.

My mum and me went into the sensory room with Oliver and she found a stroller from the playroom. He stood up and there he was walking, I couldn’t believe it he took a couple steps with the stroller the previous week but not like that. It felt like a sign, like god wanted me to see Oliver walk on his legs for the first and last time. It’s a memory I will never forget as long as I live. We recorded it and have uploaded it to Youtube. Click here.

Before we left the room my husband and me said a prayer together whilst no one was around and we said goodbye in our own way. Teary eyed we held each other and Oliver and trusted in god this is the best decision for Oliver.

Around 9.00am the nurse came in and told us Oliver is ready to go down to theatre. Only one person can go in the anaesthetist room. I knew I had to be the one to take him, he’s having his leg amputated and I need to do this for my little boy. I remember it like it was yesterday, every little detail. Oliver was the first to have his surgery that morning. He was seen by two the anaesthetists’ to check he was well enough for surgery and the surgeons came into see us before Oliver was taken down.

I remember walking out of our side room, it was so quiet and still, all eyes were on Oliver. I put my head down and I prayed from the moment we left the room to the moment mum and Joe were there to say their last goodbyes. Look after our baby, look after our little boy, pray that this is the right and only option to give Oliver a future, a better future than if he were to have two perfect legs. I truly believe Oliver’s future was set for him the moment he was born this was going to happen even if they would have been able to find the tumors sooner this was always his path, a future that he didn’t chose but has chosen him.

My heart breaks just writing this. Joe and mum came with me to the double doors to say their last goodbyes, the look on their faces the tears they were holding back. Now it was time. I walked into the room, one nurse and 2 anesthetists’. They were deciding on anaesthetic through his cannula or through the mask. I didn’t want the mask but the injection didn’t work so it was the only option. I stood up and the anaesthetist got the consent form that I signed the previous week. Oliver Price, aggressive plexiform schwannoma, left leg amputation. I couldn’t hold the tears back, I couldn’t breath the nurse was holding me up. How am I standing here, 15months on from having a little boy being told his leg is going to be amputated, agreeing to a consent form to take his leg away?

I sat with him on the bed and they put the mask over his face and he fell asleep.

Now its time to say goodbye. I couldn’t hold my tears back. I knelt down, held his leg so tight put my head on his tumor and I prayed, I prayed until my hearts content more than ever before. I kissed his tumor, his tumors that have caused his leg to be taken away, they have caused 14months of heartache and an uncertain future. I said goodbye. I walked out of the room and fell into the arms of the nurse and held me so tight.

The surgeons came into the parent’s room a few hours later, which was when we realised it had been done. In the space of a few hours his life has taken a totally different path. One I would have never imagined. They did an instant test to check if any remaining disease was left in the stump and came back clear. A histology report has also been done to check if anything is left so we should find out in the following weeks.

After around 3 ½ hours the nurse came and told us Oliver is in recovery and the surgery has been done. My heart felt like it had been ripped out, the pain will always stay with me, the memories will always stay with me. Only I could go in to see him in recovery, but I just couldn’t do it on my own so my husband came with me. I got to the door and he was only 2 beds away from the door, just around the corner. I couldn’t walk in, I couldn’t breath. I said to my husband I can’t do this. Then I heard a cry and I knew it was Oliver. He got me through the door, like he’s got me through these past 15months. I couldn’t look, I felt scared, not scared of my little boy but scared to see how easily it is for something so precious to be taken away, just like that, in a matter of a few hours.

I was trying to be strong but I couldn’t, Oliver was in tears and it made me even worse to see him like this. Joe put him on my knee and there was such a big part of him gone, it felt empty it took me back to the moment I gave birth to him, like I had a new child the feeling so indescribable. Just like that, it’s gone and I miss it. I want it back, I want his leg its in the hospital and I need to find it. How such a traumatic experience can mess with your head, make you feel thoughts you have no control over they almost feel like they take over you. I carried him back to the ward, cuddled him and held him so tight my little angel.

This is not something that’s over and done with for Oliver, and now you can move on he’s had an operation and he’s doing amazing. Oh how I wish it was easier than this! He doesn’t have a choice, he has to get on with it. Watching your child have his leg removed, not being able tot about and be independent in a way, to do what other toddlers are doing at his age. Not being stared at and having my son glared at in the shops and having to completely ignore what others think almost like I’m in some sort of bubble.

These are the things I have experienced from the moment we left the hospital, having to shut my mouth, having to stare at people until they eventually feel so embarrassed because I know there looking at my son, not for a look, but an extremely long period of time, me bursting into tears in the garden centre because a middle aged man was glaring at my son, even when I stared him in the face pointed him out to my mum he still continued. My boy is a survivor, I would much rather have him look like this than not have him in the world. I don’t know what he was thinking but I always try my best to put myself in other people’s situations. He walked past with his partner and two children and I felt like saying you hold them tight because this could have easily happened to anyone, your child, don’t judge, look but don’t glare, think before you speak. I’m not going to hide Oliver away. He is a beautiful little boy with so much character and strength, he’s my inspiration.

I just want to be able to walk side by side, hand in hand with my little boy. I live in reality, I’ve been through too much of a emotional rollercoaster to cover things over or pretend like it’s not going to be hard. Oliver will be monitored for the rest of his life constant trips to the hospital to see the oncologist, physio, rehabilitation and prosthetics. It is such a massive change and easier said than done and every day is a struggle. My husband and myself have been married for two years on the 4^th July and never in a millions years did I ever think we could be faced with something like we have but to have such a wonderful man by my side I am truly grateful.

We’ve been home for 3 weeks and its still as raw as it was then, every day is a struggle, every day I have to wake up and live in that moment because we don’t know what the future holds and I need to try and deal with my emotions now not how amazing he could or might do in the future. I wish I could think like that now, but I think you have to be in that position to understand fully. If I have any piece of advice to anyone in a situation like this it’s to take everyday as it comes, take your time be patient with yourself and you couldn’t have done or be doing anymore for your child. It’s not your fault, life can just be so cruel. You were chosen because you were the right person and you could give everything and more to your child.

I have to say we honestly couldn’t thank everyone enough at Manchester Children’s Hospital, the nurses, doctors, surgeons for looking after Oliver whilst he was in hospital and giving us all the support that was needed for us as a family.

After seeing what we’ve seen and been through this year, it’s changed our lives and changed us as people. How can such a little person give us so much strength, make me love more, make me appreciate life, to be kind, to speak out and not hold back, to be aware that there are so many other parents in the world facing and will face extremely traumatic experiences with there child. If I can help at least one person through telling our story and reaching out to parents in similar situations, you’re doing the absolute best out of a terrible situation. Express how you feel and say exactly how it is. It will make you an even stronger person and one day I hope to look back on this and be in a better place and a better person because of it.

I’m not alone, your not alone, tell your story, tell your fears and talk about your situation if you think that could help you. You could be helping someone and for me its helped me to be able to blog about Oliver’s story and how as a family we are trying to support each other.

The day before the operation – 1st June 2017

2017-07-02T19:59:17Z

It’s the 1^st June the day before the operation and after waiting for a tedious long week to pass (or what its felt like) Oliver is due to go into hospital this afternoon. I feel a mix of emotions, leaving my house knowing when we return Oliver wont have his leg breaks my heart. We left the house around 12pm and we went straight to a side room where Oliver stayed whilst he was in hospital. A couple of doctors came in to monitor Oliver throughout the day to make sure he was ready for the operation tomorrow and the anaethetist checked his chest and ears were clear, which thankfully they were!

At 11.30pm they decided to do his bloods and as you can imagine he wasn’t a happy little boy. I told the nurse they couldn’t usually find a vein so they normally find a specialist, obviously they didn’t listen to me! What do I know hey, I’m only his mum! So they spent 30mins messing around trying to find a vein then finally they went to get someone.

Mum and me went into the sensory room when Oliver had fallen asleep, it’s just nice to have a bit of your own space especially when you’re in hospital. My mum is my saviour, my inspiration and my best friend she is there for me whenever I need her. She been through such a traumatic experience herself she can relate and knows how it feels so go through a life changing experience. My mum stayed upstairs in the ICU accommodation for the first night and my husband Joe stayed at Ronald McDonald House just outside of the hospital.

I spent the night just looking at pictures of Oliver and his leg, its held him back from doing things that he could do but its still his, its still part of him and I love every part of him bad and good. I just wish it didn’t have to take away his leg.

The day before the operation (which was cancelled) – May 2017

2017-07-02T19:49:34Z

We got to the hospital at around 12pm ready for his pre-op and to talk about the level of amputation. Oliver’s surgeon is away on holiday however, she wants the surgery to be done as soon as possible so has asked her colleague who she thinks very highly of to carry out the surgery. We met with the surgeon and the orthopedic and they feel the best option is to go above knee and get rid of the tumor. I think the opinion from the oncologist made them rethink their previous decision and to not chance Oliver having to go through another amputation in later life. (Other than possible re-correction surgery) I felt a sense of relief as I felt this was the best option. Oliver was checked a couple of times throughout the day as his temperature was quite high. He was so poorly, finally one of the night nurses, who was brilliant may I add, noticed his temperature was too high asked for his bloods to be done and his swabs at 10.30pm poor little love. He hardly had any sleep and he was so unsettled. My mum and me were in the sensory room most of the night trying to cool him down. Mum stayed overnight with me in the room and slept on the floor, the nurse was so lovely she knew I needed her support. I got into bed around 1.00am I lay there I couldn’t switch off all I kept thinking about was the operation, so many scary thoughts, saying goodbye for the last time, seeing him with one leg for the first time. I felt sick with the thought I gave birth to a little boy with two legs and ten toes, not one leg and five toes. A part of my baby has died that’s not right, this is not what I planned, and I didn’t prepare myself for anything like this.

It was the morning of the operation. The blood results came back and there is a sign of infection. The doctor came in around 8.00am in the morning an hour before his surgery and said he has tonsillitis and a bulging eardrum. How could no one of picked this up the day before?? Poor little guy no wonder he was touching his ear for most of yesterday. It looked highly unlikely they would put him under anesthetic for a major operation. She went to speak to the anesthetist and the surgeons and they told us it was a complete no, they couldn’t put him under as it was too risky. I honestly couldn’t believe my luck; of all days for him to get poorly it happened the day of his operation.

I was so upset that it didn’t go as planned, but he just wasn’t ready and to be honest I look back and I’m so grateful the doctor picked up on the infection. He started the antibiotics that afternoon. The surgeons came in and spoke to us and were already clearing there diary to fit Oliver in for surgery the following Friday. I was praying so much for them to be able to fit him in, we’ve waited 4 months for this day and I don’t want to wait another month! Someone was looking over us when they came and told us they can operate next week.

I can’t wait to get rid of this horrible year that has brought my family and me so much sadness. I am however thankful for the strength it’s brought out within me that I didn’t think I had.

‘The appreciation for life and to be able to live a life, a future that I didn’t choose but chose me.’

Meeting the Oncologist – May 2017

2017-07-02T19:50:12Z

On the 4^th May 2017 we attended an appointment at the children’s hospital in Manchester to see the oncologist. We didn’t really have any idea what this appointment was for until we got there. An oncologist is a doctor that specializes in the treatment of cancer. Even though Oliver’s tumors are benign he needed to be seen by an oncologist because of the rapid growth because its not a very well known they don’t know the ‘nature of the beast’ as we were told.

Whilst we were waiting in the room surrounded by children who had different forms of cancer was heartbreaking. I have never seen anything like that before I honestly held the tears back. It really makes you realize how precious life is and how much you should appreciate what you have. Your health is the most important thing not materialistic items. There’s always someone in the world going through something worst than you are and every time I get myself into an emotional state I have to remind myself of this.

The oncologist looked at the tumors on Oliver’s leg and checked to make sure he couldn’t feel anymore. The MRI Oliver had last month showed he had ‘what he thought’ was a growth on each arm. My heart sank for a moment until my husband remembered he had his injections in both arms a couple of weeks before his MRI. He phoned the radiologist to double check if injections could cause hard small cysts under the skin. I felt so relived! He will be seeing Oliver again in July for his check up.

My husband and me have had so much love and support but you get that one person that honestly thinks Oliver will be able to stick his leg on and he will be up walking in a few years. It doesn’t work like that unfortunately, I wish it did but it doesn’t end when he has his leg amputated it’s the start!

The grieving for a loss of my child’s’ limb, for a child you thought you were going to have, the constant physio, rehabilitation, the limb fitting, introducing a knee joint in a few years, check ups for other nerve tumors, the list is endless. Yeah he will adapt because there is no other option, he has to, but I will see my child struggle in a way he shouldn’t. No one knows another persons life, another person’s nightmare, they just see the outside, that smile you have to put on your face when you feel like your breaking up inside.

I don’t think there is any point in sugar coating traumatic experiences or feeling bad for showing your emotions. its only natural and most of the time it helps to have a good cry. We’re only human, right?

It’s the 18^th May today and I am feeling so emotional, my heart feels like its breaking. I knew I was having a bad day when I woke up and the first thing I did was pray for my little boy to try and help myself get through the day. Some days are harder than others but it feels like I’m on a rollercoaster.

Its been two weeks since we saw the Oncologist in Manchester and I felt like I had given enough time for him to consult with the oncologist in Birmingham so I spent most of the morning trying to get through to the hospital, honestly its like a job in itself chasing people! I spoke to his PA and she was so lovely, it makes a whole load of difference when you get someone so helpful especially you’re your going through such a difficult time. I received a phone call in the afternoon from the Oncologist in Manchester and was told the Oncologist in Birmingham

The advice he was given from the oncologist in Birmingham is to go above knee and he also feels the same. I couldn’t stress enough that we cant move forward with our lives and also how much pressure it is putting on me and my husband having to wait so long for an answer.

I received a phone call on the 24^th May to confirm Oliver’s surgery in a couple days time. Ill be totally honest it hit me like a ton of bricks, thinking this time next week he wouldn’t have a leg, how your life can change in just a couple of hours. I decided to use my time effectively and pack our bags for the hospital and prepare myself as much as I could. Oliver has his pre-op tomorrow and will be staying the night in hospital ready for his surgery on Friday morning. Before we left from home Oliver started with a high temperature, as you can imagine my worst nightmare the day before his operation.

Another MRI – April 2017

2017-06-13T19:07:00Z

On the 13^th April I had a call from the surgeon asking us to take Oliver in for an MRI on the 18^th April with a follow up appointment the following Tuesday. The surgeon wanted Oliver to go in for a full body MRI and an MRI of the leg. She wanted to see how far the tumor had grown up the leg and if there is any chance they could save the growth plate at the base of the thighbone. This would mean that they would have to remove the mid section of his thighbone and connect the growth plate further up his leg. This would mean that Oliver’s stump would grow approximately 1cm a year, which would help when wearing prosthesis. Surgeons can do such wonderful thing and we are lucky that we are all born in this day in age.

They wanted to make sure Oliver did not have other nerve tumors in his body. This is not to say they wouldn’t appear in the future but they need to be sure before they go ahead and do surgery on his leg.

Having an above knee amputation is different to below in terms of recovery and rehabilitation. We were told its 70% harder to walk with an above knee prosthetic because of the knee joint. He would have a straight leg until he is around the age of 3 then he will get a knee joint. The orthopedic is keen on keeping as much of the leg as possible but unfortunately it all depends on the results from the MRI.

Oliver’s birthday and more news – March 2017

2017-06-13T15:18:18Z

So it’s now around 5 weeks since we were told the news about Oliver. The first week and half from when we found out was the hardest time, so we decided to have a weekend away in a lovely cottage in Bath to come to terms with the devastating news. Having Oliver’s leg taken away is something we don’t have a choice in, something we have to accept, his leg has turned against him and for Oliver to live his life to the full, this needs to happen. I don’t know if there is any right way to be dealing with this kind of situation, we all deal with things differently.

I understand this needs to happen so Oliver can make his dreams come true whatever they may be in life. Just because we have to ‘deal’ with something traumatic doesn’t mean it doesn’t cause us terrible pain, it doesn’t stop us from spending endless nights crying or wishing it wasn’t happening. I ask myself every day, why my little boy? He’s not done anything wrong, but these horrible things happen all of the time to innocent children and adults.

It’s the 22^nd March, Oliver’s birthday and two days ago we were told the tumor they had taken out behind his leg knee has grown back. This means amputation needs to be mid-thigh. They don’t know how far up and it is more than likely he will need another MRI next month to check. I don’t know what to say, I feel like I have words, my heart hurts, what can I do? WHAT CAN I DO TO HELP MY BABY? I don’t know how to feel anymore, I don’t know how I can get through this. It’s a total rollercoaster of emotions. Even though it wasn’t what we wanted to hear I somehow feel a sense of relief knowing that this horrible tumor will be removed from my child’s leg he can start his new life, a life that was already planned for him.

I don’t know where I am going to find the strength. I’m supposed to be celebrating the first year of my baby’s life and I’m sat upstairs pouring my heart out because this pain hurts so much. Everyone is asking what we are doing for his 1st birthday; the truth of the matter is we are crumbling, as it doesn’t feel a time for celebration. I can’t even give him the birthday I wanted because the emotions are just taking over. My parents have been the most supportive people in the world I can’t thank them enough, my mum is just a lady of great strength and I admire her, she gets me through the hardest of times and I count my blessings every day for her being in my life.

We visited the limb centre in Manchester at the beginning of this month. Lets just say I came out feeling so overwhelmed. Walking through those double doors and seeing so many people with lost limbs knowing this is happening to my baby. I don’t know where I found the strength to sit there. I look back at myself two years ago and I feel like a completely different person. My perspective and outlook on life is totally different, the trivial things I used to worry about, how could I feel any different though, I’d not experienced anything so traumatic or life changing.

My mum repeatedly says to me ‘Hayley, you were chosen to bring Oliver into this world and give him the best possible future, God knows you have the strength within you to bring Oliver up and give him everything he needs.’ Don’t get me wrong I will do everything in my power but sometimes I just wonder why these awful things happen to innocent people, to innocent children.