Requiem for Eleri

Manor farm summer 2019-420It has been almost seven long weeks since we said goodbye to our girl.  I am still struggling to marry the pictures of Eleri full of life with the idea that she isn’t here anymore.  I still can’t quite fathom how someone who was so full of life and ambition has gone.  I’m still asking why the universe gave her to us but then decided to take her back; why she has been returned to dust.  People tell me there must be a reason, that her being taken has some bigger purpose; I can’t yet see that myself.   Unfortunately, these are all questions we will never have answered.  We have to move on.  It seems almost impossible now, but others have experienced this and they are still living their lives.  We will too.

I decided that along with chronicling our dealings with grief I would talk more about Eleri’s personal experiences with cancer.  I had hoped that one day she would be able to talk about them herself, unfortunately she will not be able to make her voice heard.  I will attempt to talk about how cancer affected her, but to begin with I wanted to give everyone a better understanding of who she was.  It’s so easy for her to become synonymous with cancer, but she was so much more than that.  At her ceremony Rob and I were determined for her to be remembered as she was before cancer ravaged her body.   We wrote and read the following in the hope that people will remember her for who she was, not what took her from us.  On my return to blogging it seemed the best way for me start building a picture of Eleri and therefore highlight just how much cancer changed her.  I hope you enjoy reading about our darling girl.

Wonderful Eleri
 When we sat down to write this tribute, we felt suffocated by the question ‘how do we write about an eight-year-old girl whose life had been so cruelly cut short?’.  We couldn’t seem to get past the thought of her live un-lived; her dreams and ambitions left unfulfilled.   So, we stopped, took a breath and had a quite word with ourselves. After a few days of embracing grief, we came to the conclusion that Eleri was not a normal eight-year-old. She was an extraordinary girl who crammed more into her short life than most of us dream of in a lifetime.  With my sass and Rob’s, shall we say, tenacity, she was destined to leave an unforgettable impression on anyone she met as well as her own unique Eleri shaped pink and sparkly mark on the world. 
 
We then had to get past the big ‘C’. Childhood cancer enveloped Eleri’s life and tried to take away who she was.  Of course, there were lots times throughout the two years that the real Eleri shone through, but the strain for fighting the monster in her body took its toll. Other parents talk about how their child received their treatment without complaint and quietly dealt with the suffering behind a smile.  Not Eleri! I think that all the medical staff will agree that Eleri had her own ideas on how her treatment should proceed.  She wasn’t shy on letting them know what she thought.  From correcting the pronunciation of her name, I don’t think poor Gary from the Great Western will ever forget her dressing down, to sacking one of the best surgeons in the country from her bed in HDU, Eleri used every available word in her vocabulary to let them know exactly how she felt.  Thank you to all the wonderful NHS staff that supported Eleri throughout her treatment.  Thank you for your compassion, professionalism and very thick skins. You all remained unshakable no matter what she threw at you and for that, we will be eternally grateful.  At this juncture it is so important to remember that Eleri was so much more than the illness from which she suffered.   
 
So, what defined Eleri? It certainly wasn’t her diagnosis.  Cancer took her from us, but it did not define who or what she was.  Eleri was a vivacious, happy and spirited girl. She thrived on the joy of life and wanted to experience everything that it could offer.  She was cheeky, funny, inquisitive and clever.  She was staunchly independent and refused to bend to anyone’s will except her own.  When Eleri came into this world, we were determined to raise a strong, intelligent, resilient woman that knew her own mind and wasn’t afraid to show it.  Stood here today, I think we can all agree that Eleri was all of those things and so much more.  
 
Eleri loved the arts. For as long as we can remember she loved singing, dancing, drawing and had wanted to learn how to play the piano. She wasn’t a fan of reading or maths but was fascinated by all things science. She very much enjoyed ballet and especially loved the pretty leotards and skirts. Now as we all know ballet is a very serious and disciplined art form – something which Eleri wasn’t quite on board with.  At her first ballet show when she was 4 Eleri stole the show, not with her dancing prowess, but with her own interpretation of the moves.  As everyone else stood around in a circle holding their skirts out beautifully whilst doing their plie, Eleri proceeded to squat up and down whilst pulling her skirt over her head and making faces at the audience. It was a joy for all to see. 
 
Eleri had a flare for the dramatic.  She was part of Musical Mania and we were so so proud when she was chosen to play ‘Alice’ in their end of year play.  She was brilliant.  Not only did she remember all her own lines and act her little socks off, she could also be seen mouthing the words for all the other parts too. Eleri was an extremely active and busy little girl.  If she wasn’t doing handstands, cartwheels or the splits, she would be swinging on monkey bars, climbing to the top of a climbing frame, swinging a swing to its highest point, speeding on her scooter or bike and bouncing as high as she could go on a trampoline.  She had no fear.  She unapologetically lived her life to the extreme and as a bystander you had no other option but to get swept up in her enthusiasm.  Even after breaking her leg and having a spacer where her femur was, Eleri still tried to persuade me to push her down a grassy hill because it would be ‘fun’.  She loved to run down the garden and jump into the paddling pool inventing different moves, our personal favourite being the ‘slow motion’ belly flop.   She also loved gymnastics; in fact, I think we could go as far as to say that it was her favourite of all the activities she did.  She always wanted to improve and, most importantly to her, win something at her club championships.  She worked and worked at her routine and when the championships came around, she got exactly what she wanted.  She came first on the floor,  third on the vault and second overall.  She was utterly thrilled.  It was, in her eyes, her greatest achievements.  We couldn’t have been any prouder of her. 
 
When mobility became an issue for Eleri, she was so sad that she couldn’t live her life as she had previously.  However, in true Eleri style she embraced new activities and took them up with the commitment and fervour that she had applied to all her previous loves.  I was thrilled when she developed a passion for Harry Potter.  We watched all the films numerous times, listened to all the audio books, visited Harry Potter studios, went to see the Cursed Child in London, played numerous video games and secured her very own wand. This new obsession with Harry Potter fitted very well with another one of her new hobbies, Lego!  She would build and build and build until she had blisters on her fingers.  She was a master builder and woe betide anyone who went anywhere near her creations. There were many times we were forced in intervene as she pursued her brother fully intending to do him harm because he had crossed into the ‘Sistar System’ and dared to touch what was not his. The last of her great loves was Roblox, particularly Royal High.  I would like to say that we knew lots about it, but in reality, we have no real idea what it was about, but we do know that it kept her happy when things became very difficult for her.  We are grateful for that. 
 
Eleri loved people. She loved playing with her friends and making new ones.  She loved to laugh and joke, especially with Tiggy and Izzy. The three of them together were like a force of nature that no man, woman or child could contain.   Eleri loved to have fun with her friends, even if sometimes she helped them push themselves to the limits of ‘good behaviour’. Even in a wheelchair she encouraged Izzy to push her so fast that she toppled out.  One parent reminded me recently of a time when she was playing on the swings with her daughter whist singing the entirely age appropriate ‘Baby’s Got Back’. For those of you that don’t know it goes ‘I like big butts and I cannot lie…’.  She was all about the jokes.  She liked to play pranks – look out for the picture of her pretending to put her finger in Bethan’s bum whilst cackling hysterically. She was also fond of a telling a joke and making them up.    One of her favourites was “Why are pirates called pirates? Because they arrrrrrrrrrrrh”.
 
We cannot forget how much she cared for her family.  Even when she was threatening him with his life, she loved her brother dearly.  Yes, she sighed woefully when we made it clear that crutches were not to be used as a weapon and that running Owen over with her wheelchair was not a viable solution to dealing with his annoying habits. However, every time Owen took one of his little wanders away from us, she would always be the first to worry and immediately convene a search party with operations being controlled from Eleri HQ.  We would regularly catch them playing together or plotting some sort of coup against us. Owen idolised his big sister and she adored him, as a baby, when he couldn’t move or speak.   She was jubilant at becoming a big sister for the second time and cried many happy tears when she knew we were going to have another girl.  She wasn’t shy on giving us her choice of names, although I can safely say that we very firmly rejected Britney.
 
So, in answer to the question ‘How do we define Eleri?’, to me it is obvious.  Eleri epitomised life, love and laughter.  She was full of joy.  With her huge Hooper grin, she would brighten up any room.  She brought pure happiness to our lives.  We are so lucky to have been chosen to be her parents. We feel privileged to have had her for 8 years – they have been some of the best of our lives.  She enriched our life in a way that only a child can.  We are filled with such sadness and grief because she has been taken away. But to feel so much pain means that we have felt true unconditional love.  You cannot have darkness without knowing the light.  To have such a hole at the centre of your being means that we have known love so deep that it can never be forgotten.   We are melancholic now,  but in the future her memory will shine through the despair and guide us forward. She would not want to be remembered with sadness; in fact, we can guarantee that she would be screaming at us to ‘stop crying all the time’.  She would want to be in people’s thoughts, she would want to be talked about.  Don’t feel afraid to bring her up in your conversations with us or anyone else.  She existed, she was here, and she was wonderful.  She was so loved that she can never be forgotten. It seems only right that we finish with the wise words of the mighty Albus Dumbledore  “Do not pity the dead, Harry.  Pity the living and, above all, those who live without love…to have been loved so deeply, even though the person who loved us is gone, will give us some protection forever.”
 

Christmas cheer

It has been weeks, if not months since my last post. I’ll be honest, I haven’t wanted to share. I have needed to sit back and take stock of everything that has happened to our family. I have needed to organise my thoughts, emotions and memories of a truly traumatic time. In the same way that I have found writing a very cathartic experience, in the last few months I have found it almost unbearable to think about putting what has gone on into words. As Christmas approaches and I sit in a bed next to Eleri in the Children’s Unit of the Great Western Hospital, I feel reflective and pensive about the whole experience of childhood cancer. At the same time I am feeling hesitant about the future and view it with a reasonable amount of trepidation.

The future looks positive; the best it has looked since diagnosis. The tumours in Eleri’s lungs shrank enough for her to undergo surgery. The surgeon was able to remove three lumps with good margins. Even better than that, the necrotic tissue they removed showed no live osteosarcoma cells. Seemingly, second line chemotherapy has worked. Eleri has had her last round of chemotherapy and we should be out from this episode of febrile neutropenia before Christmas. All so unbelievably positive and, quite frankly, somewhat surreal. Only five months ago we were told that is was ‘very unlikely that Eleri would be cured.’ This is not be me being over dramatic, it is a direct quote from a letter we were sent by her consultant. It is this one line that is keeping me from drinking champagne from our Clic Sargent coffee mugs and offering up a one finger salute to cancer. The bloody disease could come back. The nasty, sneaky minute little beasts could be hiding and/or mutating into something else; something that won’t or can’t be treated. We have had the stark realisation that we will never shake off the fear. There will never be true relief. It will always be hanging around in the dark corners of our minds.

As depressing as this may sound, we are very very happy to be looking forward to a stress free Christmas with no hospitals, no scans and no results to dread. I can’t wait for Christmas. I have been ready to celebrate since the middle of November. The tree was up on December 1st and, for the first time since we have had children, it’s a real one. Another reason we are excited is that we are facing the new year with hope and optimism. Everyone will get a fresh start. Owen will continue at pre-school, Rob goes back to work and Eleri goes back to school. I will get time on my own to decide what I want to do. My life, our lives have changed. Yes, we are going back to the ‘normal’ routine, but everything feels so different. It feels like the beginning of a new era for us; one where anything is possible. The good thing about watching your child struggle with childhood cancer is you realise that you have had just about the worst life can throw at you. Worries about money, career, what people think of you, social expectations that you may have tried to live up to or even the assumptions about the path your life would take are irrelevant. It doesn’t matter what people think or what you are expected to do. The release from these worries means we can sing and dance to our own tune. It doesn’t matter if Rob ends up being medically discharged from the RAF, we will figure it out. Our lives won’t end if I don’t go back to teaching. In fact, here’s a thought, they might even become better!

We are all facing the new year as new people. Owen is growing into a cheeky, happy and thoughtful little boy. He is going to school next September and will officially become a ‘big boy’ (I’m largely ignoring the whole situation as I can’t quite get a grip on where my little baby had gone). Rob will return to work with a diagnosis of epilepsy, a thirst to prove himself and doubts as to whether he is ‘good’ enough. In my humble opinion, even with epilepsy and the risks that could pose, he is still twice the airman than some of the people he has come across in his career. In this modern age with the drugs he is taking these risks, again in my very unscientific opinion, are minimal. If they decide he has to go, then it’s their loss not ours. We will move on and make our lives better.

Eleri, who faces the biggest challenges of all, will have to find a new way to live. She will have to find a new way to exist in a life where she is unable to do many of the things she so loved before. She has to re-assimilate into a class of peers that have been growing and learning without her. She has to return to a world where children are children and none of them face the hardships that she has and will have to endure. She has grown up. She has become a different form of herself. Will people accept this new form of self? Will they understand the horrors she has endured? Will her friends still play with her even though she can’t run, jump, skip or hop? Will they make allowances for her and make subtle changes to help her fit back in? Will she be treated as a ‘normal’ child and not as ‘the little girl that had cancer’? She doesn’t want to be different. She doesn’t want to be wrapped up in cotton wool. She wants to move on with her life. Will she be able to? I hope so, but only time will tell.

There have already been little changes that she has noticed. She hasn’t been to any birthday parties this year (I mean she probably couldn’t have gone anyway, but she doesn’t understand this), she wasn’t invited to any of her school’s Christmas activities, she hasn’t received any Christmas cards. She doesn’t see how supportive all of her friends and their families have been over the last year. She doesn’t see that she probably couldn’t have gone to any of the Christmas activities at school.

We recently went to our annual ‘Friends Christmas’. It was difficult for Eleri. She is going to have to come to terms with not being able to move like her friends. The children she has grown up with still love her and want to play with her but, quite simply, they move too quickly. She can’t keep up. These are our ‘slap in the face’ moments. The moment when you realise that everything and nothing is changed. All our friends are the same. All Eleri’s friends are the same. Outward we are the same, but there has been an almost unnoticeable shift in our reality. The fun weekend that we were all so excited to be going on was, at times, like a slap in the face. Everyone else is living their life as they were before but we are ever so slightly changed. When you are an eight year old whose life has morphed into something unrecognisable, you only see the little things. You only see what is important in your small and previously perfect world. Helping her to understand that her new world is just as perfect and it can be whatever she wants it to be will be a hard and sometimes emotional journey.

As for me, I have absolutely no idea what my life is going to be moving forward. I know I don’t want to go back into education. I know I don’t want a 9-5 soul destroying career. There are opportunities out there that I have never considered because I allowed myself to be pigeoned holed into run of the mill respectable career. I don’t really want run of the mill anymore. I want a life filled with purpose and meaning. I want to give back. I want to have a positive impact on the world. I want to help make people’s lives a little bit better. I leave this experience with fully fledged anxiety. I have whole days where I can’t breath. I can’t ever seem to catch my breath. I don’t outwardly look like I’m struggling, but my body is telling me something very different. I need to slow down and re-centre myself. I need to go back to yoga. I need to take stock of all the good things we have. I need to remember that the worst didn’t happen instead of thinking that is hasn’t happened yet.

This is the enormity of the impact childhood cancer has on lives. It doesn’t just end. It never ends. We are forever changed. I have spoken to other parents who have finished treatment and they feel the same. They have the same sense of reluctance to step away from the hospital and the safety of the nurses and doctors. They have the same feeling of slight panic when the doctors say, we will see you in a few weeks. One parent said that when they got diagnosis they felt like they were standing in the edge of a cliff. Being in the cocoon of an oncology ward pulls you back from that cliff. It helps you find your balance. They pick you up, dust you off and say ‘come on let’s get your child better’. More than that, they give you hope. Being told that you no longer need them is like standing on the edge of another cliff; one where no one is there to help guide you away or catch you if you jump. There are absolutely no certainties in life anymore. We are just going to have to hold hands and jump off together. Eleri’s cancer may come back, but we will make dam sure that we fill the time in-between with love laughter and, most of all, life.

Merry Christmas and a happy new year to everyone that has given us a virtual hug this year. The support and love has been unrelenting and has bolstered us at times when we needed it the most. We don’t know what will happen in 2019 but we can’t wait to draw a line under 2018. Thank you all and I’ll write you in the new year.

We have been thrown some crumbs.

I am aware that many of my posts have been generally quite negative in nature. I don’t mean them to be and I definitely don’t feel like that all the time. However, last night’s post was probably the darkest I have written so far. It seems fitting then that the dark can finally be followed by some light.

The appointment today went well – better than we could ever have imagined. I haven’t allowed myself to hope because I couldn’t put my self in a position where my heart could break again. Indeed it’s hard to have any hope when the letter from the consultant says that Eleri is unlikely to be cured. Today we were thrown a crumb.

Eleri’s scans showed that the tumour hadn’t grown, in fact it had reduced in size. It was still there, but seemingly shrinking. This is encouraging, very encouraging. Eleri is by no means out of the woods, but she will get more chemotherapy and potentially have the tumour resected. We have one more round and one more scan before we know for sure. Anything could happen in that time, but for now we are happy. We are happy for the first time in weeks. Rob summed it up in the car on the way back from the hospital, without any real thought or contemplation he said ‘I had forgotten what this feels like.’ He meant happy, he meant content. It might not last long, but for today and tonight we have had a win. We will keep gathering the crumbs of hope and holding them as close as we can. Tonight we celebrate and tomorrow we face what is to come.

A role of the dice.

Facing reality is takes courage. Knowing something and admitting that you understand the impact of that knowledge by saying it out loud to someone else is something completely different. It has taken me six weeks to find the courage to write this post. Six weeks for me to be able to see our reality in black and white. I didn’t want us to be ‘that’ family, but it seems we are destined for it to be so.

On Friday 10 August 2018 we were ushered into a side room on Kamran’s ward to discuss the results of a CT scan of Eleri’s chest. I knew there was something wrong. I knew they were keeping something from us. When we arrived at the ward there was a bed free but they wouldn’t let us take it. They asked us to go and wait in day care. Then our consultant said he would be with us in five minutes; the doctors never come to see you straight away. Alarm bells starting to sound in my head.

Shaun, our consultant, sat us down and started by saying ‘The results are not great I’m afraid’. They had found another growth on her lung. It was separate to the other nodules and had not been on any previous X-rays or scans. It’s was significant; 2cm in diameter and growing despite the chemotherapy she has been receiving. Her treatment wasn’t working. Our daughter was being consumed by cancer. My chest tightened. My ears started ringing. I felt sick. This is not how this is supposed to go. She is supposed to be getting better. Someone told me after our dog was hit by a car ‘These things always come in threes. You have had yours now. It can’t get any worse.’ My response was ‘Things can always get worse.’ I was right.

They had decided that she was going to be taken off the first line treatment for osteosarcoma and put onto a second line protocol. This new treatment only has a thirty percent chance of working. Some families even choose not to have it. I knew what was coming next without having to ask the question, but I did anyway. ‘What if the treatment doesn’t work’ – I didn’t wait for a response because I could see the answer in his eyes. ‘Palliative care?’, Shaun nodded. Our world imploded.

It has been hard to reconcile this news in my head. She has been eating more, sleeping less, her energy was up and she wasn’t in any pain. It didn’t seem to fit. It didn’t and doesn’t seem real. The outside does not reflect the inside. Our happiness and hopefulness have been a false positive. The pain and suffering that Eleri has experienced this far has all been for nothing. Our following of the standard treatment protocol has been futile. Staying positive hadn’t helped. The roll of the dice hadn’t landed in our favour.

What I have learned about paediatric cancer is this – it’s a roll of a dice. Well, all cancer is, but childhood cancer even more so because there are so few targeted drugs. We are left with archaic poisonous drugs that leave children ravaged. Paediatric cancer treatments are so dangerous that more children die as a result of complications due to chemotherapy than the cancer itself. You can read statistics, you can look at prognosis, you can follow the protocol but the reality is that each person that is treated for cancer has a 50/50 chance. The treatment will either work or it won’t. In Eleri’s case it hasn’t so far.

When all this started I was clear that I didn’t want to call Eleri’s experiences and treatment a ‘fight’. I have slipped into that state of mind at times, but have consciously moved away from it. It insinuates that there will be a winner and a loser. That if you lose you haven’t fought hard enough. You didn’t try as hard as someone that survives. This is a fallacy. The reality is there is only ever one ‘winner’ and that is cancer. It permeates every part of your consciousness and your life. If you do go into remission you are left with physical, psychological, and internal scars that heal but never really go away. You live you life dreading the next set of scans and hospital visits. You can forget it for a small period of time, but is it always there in the background niggling away. It can leave people with serious conditions that they never recover from; kidney failure, hearing difficulties and heart conditions are all very real side effects of the drugs Eleri has had to tolerate. There are no winners except cancer.

Tomorrow we get the results of her scan. She has received two rounds of the second line treatment and we have to see if it has worked. Even if it has, the options are still horrific. She will receive more chemotherapy and have major surgery to remove the growths. She is seven years old and having to deal with another operation that even a adult would cower from. It’s not fair. She is an innocent. If it hasn’t, we move to palliative care. I can’t even begin to imagine what this means. I do t want to. It’s not natural for a parent to watch their child die. It is against the law of nature to outlive your children. I never thought I would be the one to outlive mine.

A word in your ear…

I wrote this post a little while ago when I was in a particularly bad mood. It doesn’t represent how I feel all the time, but does illustrate the range of emotions we go through on a daily basis. We live in a blame culture and I often battle the urge to find someone to blame for Eleri’s illness. When I am rational, I know that there is no one person, place or thing to blame for her diagnosis. It is a cruel and unfair stroke of fate that no one could have predicted. That said, I have decided to post it to show that there are days when everyone needs someone to intervene and take the load. There are moments when, as hard as it it to keep it together and stay strong, the anger engulfs you. There are times when even the strongest among us need someone to say ‘it will be ok’ or ‘don’t worry I can do that for you’ or ‘there is nothing you can do, you are doing your best’. Words of comfort and acts of kindness cost nothing and mean everything to the person who could do with a little extra help. These lines below are an example of a time when I was struggling to deal with the unjustness of our battle and craved a outlet. Please read it with that in mind…

Anyone that has met me will know that I like a good rant. I have tried to refrain from ranting in my blog posts because I have wanted to keep it about our experiences, emotions and feelings. However, I’m having a bad day and I feel like I need to vent. I’m annoyed. I’m hacked off. I’m raging. The anger that I have been keeping under control, feels like it’s about to seep out of every pore in my skin. I want to bloody well rant.

Primary bone cancer is really rare. It’s even more rare in someone of Eleri’s age. When she was complaining of pain, I would never have come to the conclusion that she had cancer. It would never have occurred to me, just as it wouldn’t for any other parent. It’s not something that your consciousness allows you to consider; the horror is simply too much. However, maybe it should have been something that the medics thought of. Once cancer had been mentioned to me, I googled Eleri’s symptoms and there was no doubt in my mind what we were dealing with. On each occasion that we visited the doctor I had talked about the symptoms. I had communicated that she was waking in the night complaining of pain, that the pain came and went, that she was tired, that her behaviour was difficult but the dots were never joined. I’m not saying that they weren’t doing their job properly or that they were negligent, I’m mearly trying to illustrate the lack of knowledge and understanding of childhood cancer and, in Eleri’s case, osteosarcoma. All the parents on the ward have stories of how their child was poorly for weeks, months, sometimes even years and they took them to the doctors only to be told that they had a virus or in our case, a sports injury. I understand that most children might have a virus and that is the most likely solution for some, but not for all.

I consider myself to be a reasoned mother. I have never taken my children to the doctor unless I absolutely have to. However, I always feel like I am wasting the GP’s time or that I am an overprotective parent. Not only this, but that children tend to exaggerate illness or pain. I think this attitude is key here. People don’t always listen closely to the parents or, more importantly, the child. They don’t always believe that it’s as bad as it may seem – it’s easier to believe that a parent is panicking or a child is being dramatic. I am guilty of playing things down, I don’t want to be seen as a neurotic mother and I had my reservations about Eleri’s pain. However, with all the symptoms I and Eleri were describing, I feel alarm bells should have been ringing sooner. They should have seen beyond what I was telling them and realised how poorly she was. Above all that, they should have listened to Eleri.

Eleri has had input from physiotherapy since her diagnosis. One physiotherapist told me that if she was complaining of any pain believe her because children don’t really complain about pain – if they are, it’s probably significant. If she knew this, why didn’t other people in the medical profession? Why when I said ‘I’m not sure if there is anything wrong’ didn’t they stop me and correct me?

Everything I have read since Eleri’s diagnosis has said pain that comes at night and is intermittent, is not normal and is concerning. Why wasn’t this picked up when I was telling the GP’s? It’s the most likely and obvious sign of primary bone cancer. The answer seems obvious, knowledge and awareness of the symptoms associated with primary bone cancer and any other childhood cancer. I know they are rare, but that excuse just doesn’t seem to be cutting it with me today. I may be more reasonable tomorrow, but today I just find it irritating. It might be rare for us muggles to have little or no knowledge of the symptoms of primary bone cancer in children, but is it ok for our medical professionals not to know? The further along this road we travel, the more I’m starting to think that it really isn’t. Our GP’s are the frontline of the NHS and they should be better equipped to pick up on these diseases quickly. Early diagnosis is key and so important in saving lives. I have yet to meet a member of the NHS staff that doesn’t want to do the best for their patients. They work tirelessly to provide a world class service for everyone in, what I believe, very difficult circumstances. They are all underpaid and over worked, with budgets that are too small. When we were on HDU we met a nurse that had been working for nine days straight because they didn’t have enough staff! How can a GP truly listen and get to the bottom of a patient’s problem when appointments are too short and rushed? How can they pick up on rare conditions when they don’t seem to have time to look at the patient more closely? How can ‘early diagnosis’ be made when we have to sit for a GP appointment, then an X-Ray and then weeks for a physiotherapy appointment? How can they understand the real picture?

We need to invest in our services and the people that are devoting their lives to the help and protection of others. We need to give GPs the time to get the know their patients and give them time to specialise in certain areas (I’m sure they already do, but what harm can more time and training do?). I don’t agree with the America’s healthcare system and I am certainly not advocating it, but at least they have first line access to specialists. Would Eleri’s problems have been spotted by a paediatrician? If we didn’t have to wait so long for a physiotherapy appointment, perhaps we would have been seen earlier by people with experience of children with pain. Maybe they would have realised that it’s wasn’t a normal sporting injury. For me the answer is simple, invest in the NHS. Pay more taxes. Make sure there is money for education and raising awareness of childhood cancer.

The politicians need to stop thinking of themselves and their party politics and think of the people they are supposed to be representing. Only 4% of government funding spent on paediatric cancer. 11 new families a day are dragged into the world of childhood cancer and the reality is that 3 of those families will lose their battle. Not only that, if you take childhood leukaemia out of the statistics the 5 year survival rate for paediatric cancer is only 50%. How in a modern first world country is this acceptable? Yes, there have been recent announcements of investment in the NHS, but I and most of the NHS staff I have spoken to are doubtful that this money will reach the places it is really needed. It won’t go on frontline services and patient care, it will be swallowed up by bureaucracy and previous poorly made financial decisions.

Another target for me today is Cancer Research Uk. We have all seen the emotionally charged advertising and fundraising campaigns that feature children and young adults with cancer. I, like everyone else, assumed that the money raised by these campaigns is used for research into childhood cancer. This is absolutely not so. Only 1.4% of their funding is used for childhood cancer research, but children are used in over 40% of their advertising. This is unacceptable and misleading. It harks to the moral compass of the executive board in the decisions they make. It’s ok to use the pictures and stories of childhood cancer, but not fund the research to help stop it?

As a society we need to start demanding better care and attention for our children. What sort of future do we have if we don’t?

Can I ask, what is her prognosis?

This is a brave question and one I have been asked a few times recently. I say brave, because I can’t ask it myself. When I am confronted with this question, it often leaves me almost speechless (I say almost because anyone that knows me will attest that I’m never quite left speechless). I can’t answer because I don’t know. People who are asking are genuinely interested, worried and concerned. Most people hear the word cancer and automatically think about the sufferer’s mortality. It’s an understandable leap, cancer spreads fear wherever it decides to show up. However, for me, this question highlights something that I just don’t and won’t think about. Foolish as some of you may think this is, I refuse to let anything other than the thought that Eleri will survive enter my consciousness.

I am a reader. I love to read. When Eleri was diagnosed, I did what I do best and went in search of every bit of literature that was accessible to me. Admittedly, some of it I didn’t fully understand because they use big medical terms that are beyond me, but I was able to get the general gist of what was being conveyed. One of my character traits has always been that I have to know everything, it’s the way I am built. If I get a sniff that there is a gap in my knowledge or someone is hiding something, I keep going until I have all the facts at my disposal. This is very useful when dealing with stroppy teenagers who have been causing havoc, but not great when a family member is seriously ill. I have read all the statistics, studied the signs and symptoms, looked into prognosis at each stage. What I haven’t done is ask Eleri’s doctors directly what her prognosis is. I don’t want to. I have come to the decision that at time like this it’s best not to know. What difference will it make? I am not a medical professional, I have no idea what is going on in my daughter’s body. My GCSE Biology and year of A’level Biology have not equipped me to fully comprehend what is happening; I now feel that that is the way is should be.

Please don’t misunderstand me here, I still question the doctors and nurses and I still need to know what they are doing to her and why, but I have given up on worrying what that might mean for the bigger picture. I spent the first month before her official diagnosis obsessively googling everything. I shouldn’t have, it didn’t bring me peace of mind – it left me teetering on the edge of an abyss. I spent too much time worrying about what might be rather than concentrating on what is. I was focusing my energy in the wrong place. It should be focused on getting Eleri better, not worrying about an unknown future.

When Rob could drive, he would look after Owen at home. This meant I spent lots of time at the hospital on my own and would have to talk to the doctors without him present. This meant that when I told him what was going on, it was my interpretation of what had been said. He isn’t a reader like me. He asks questions and talks to people to find out information. Until recently, I don’t think he fully understood what some of the elements of Eleri’s diagnosis meant. He had relied on my abridged account which, rightly or wrongly, left out some of the more negative aspects of osteosarcoma. After a conversation about the future, in which he asked me if I thought Eleri was going to be ok, he started to read. He was upset, really upset. We have had days where he has cried every time he looks at Eleri. He has been sad, very sad. It has been like returning to the start when Eleri berated us both for crying all the time. He, like me, started to focus on the ‘what if’s’ instead of what we have.

Our first consultant was the wonderful Dr Kate Wheeler. The way she handled us, or more specifically me, was perfect. It might not be what every family needs, but she kept things factual and honest; extremely honest at times. I much prefer when people are brutally honest because I know exactly where I stand and can’t over think everything. In an early conversation about staging, I asked what certain things meant. Her response was perfect and it has shaped that way I now rationalise it all; she said “Well, we are treating her to cure her.” It was all I needed to hear and the need for knowledge and definitive answers melted away. The word ‘cure’ has stayed at the forefront of my mind since. I have been trying to convey this sentiment to Rob since he started to read. They are treating her to give her life, that is what we need to concentrate on. We have to put all our energy into the positive and not the negative. Positivity is the only way forward. Eleri is here and as far as I am concerned, until I have hard facts that tell me different, she ain’t going anywhere.

That said, I still have moments of weakness. I still have times where my mind wanders. It travels to places it shouldn’t and leaves me bereft. I have read the literature, I do know what parts of her diagnosis can mean – the important word here is ‘can’. Six years ago I was told that Rob wouldn’t wake up from his coma because the damage to his brain was extensive. If he did wake, he would never function in a ‘normal’ way again. He proved all the doctors wrong, he was the exception. Modern medicine is based on scientific research which quantifies the ‘majority’ response to a specific treatment plan, drug or therapy. What is doesn’t mean is that everyone will respond in the same way. You can choose to think of this as a positive or a negative. With our history as a family, I choose to take this as a positive. Eleri has the same tenacious Hooper genes as her father and I believe they will defy the ‘majority’ once more.

Wandering

When I started writing this blog it was to write about how we as a family and parents are dealing with cancer arriving in our lives. I didn’t want to detail every step of what Eleri is going through, there are lots of blogs, websites, leaflets and books about the journey of the individual with cancer. There didn’t seem to be much about how the people around that loved one cope with, what I felt, was the utter madness is the first few months of treatment. There certainly wasn’t a blog that talked about the despair and hopelessness I felt. Those first few months were, quite simply, the worst few months of my life. I couldn’t find anyone talking about how terrible it was. Yes there were parents talking about the bravery of their child and their inspiring story, but it didn’t match our experience. There were lots of blogs that talked about the practicalities and the day to day logistics of childhood cancer, but not necessarily the impact on the family or the parents. I wanted to share, what I felt, was really going on.

I now know that we had a particularly rough start exacerbated by Rob becoming ill and the dog being hit by a car (I still haven’t shared this calamity, but I will). I remember the nurses, doctors and other parents telling me it would get better, that it would get easier. I couldn’t imagine how it could get better. Every time we went into hospital, things got worse; Eleri became more and more poorly and we were powerless to help. We just signed consent form after consent form and watched our baby being taken away by well meaning adults. We had no choice. No control. It’s unnatural to let strangers take your child away and hurt them – even though you know it will make them better and that you don’t have any other option. That’s when the wandering began.

It’s a strange feeling wandering through your own life. I see new parents on the ward wandering, dazed by rounds one and two of a fight they haven’t trained for. I try and offer words of comfort. I always end up saying ‘it will get easier’, those immortal words that were uttered to me that seemed so unbelievable. But it’s true, it does get easier. You get used to the wandering. You get used to the fear. You get used to life being thrown into the air and not knowing where the pieces will land or if any will shatter. It’s awful and no one wants cancer to enter their lives, but it really does get easier to deal with. Things do get better. I mean it never feels easy, but you come to accept and cope with it all.

We no longer trudge through our days not knowing what we were to face. We have an idea of what our current purpose in life is. We are still wandering, but we understand which direction we are wandering in. What helps is the return of some normality. Eleri has been so well that she was able to go back to school. She is tolerating her chemotherapy better and recovering quicker, which means she feels able to do more. As soon as Eleri felt well, the only thing she wanted to do was go back to school. She wanted to see and play with her friends. She wanted to feel the joy of the playground and the wonder that is learning. She managed two full days before neutropenia kicked in and transfusions were needed. Being back for those two days has revitalised her. I, however, felt like I was dropping her off at school for the first time. Although she was returning to the same class with the same staff, I had that alien feeling of leaving your child with adults that you don’t really know and who are now charged with taking care of her – just like at the hospital.

I had planned on staying with her but she didn’t want me to, so I left and my anxiety peeked! With Rob back in work and Owen at nursery I found myself all on my own for the first time in months. Is wasn’t a wondrous window of time to myself, I found it unsettling. I didn’t like not being with her. I wandered even more. I managed to see a some friends and get a bit of packing done, but was continually distracted by thoughts of her having to fend for herself. Images in my head of her crying hysterically, asking for me and no one listening. Obviously these were all my insecurities and the reality was that she didn’t give me a second thought. As a mother, you always want your children to become independent and able to go forward in life without you, but it stings a bit when they do. No mother wants to feel dispensable. That said, I am able to rationalising things. I know it’s really important that she gets time with other people without me and I get used to other people taking care of her. When she recovers, and she will recover, I can’t always be there. My mother always said that you never stop worrying about your children, no matter how old they get. I didn’t believe her until I had my own children. You never switch off from the worry, you just learn to function with it in the background.

Our wander has taken us to a place where Eleri has gone back to school. As is becoming usual for our life, there was no clear plan, rational or goal. She just wanted to go, so off she went. Currently, this is how we roll. We will continue to wander from one milestone to the next trying to make it to some sort of absolution, whatever that may be.