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 4th 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.