That’s not in the manual!

I finished this over a week ago but have only just got to post it. We are currently in for chemotherapy and Eleri is sleeping off the effects so I have some ‘me’ time. Hopefully my posts will become more frequent in the next few weeks as things are settling down. Update on what exactly has been happening to come soon. I just wanted to post this for any parents who might be despairing of their situation and need some comfort…

Today is the first day in a while that I have had chance to sit down and relax. Eleri is playing with her toys, Owen is at nursery and Rob is relaxing on the sofa. So I have grabbed the chance to finish a blog that I have been compiling on parenting a child with cancer. It’s a whole new ball game with different rules and new challenges. Parenting is bloody hard anyway, add cancer to the mix and it becomes almost impossible. Along with the things I’ve come up with below, you just have to stay true to your core values and hope that you all make it through without too much emotional turmoil.

  1. Parent guilt – well we all have it in some form or another. When cancer hits, you feel guilty about everything. There is guilt about leaving to make a coffee, or grabbing a shower (plain selfish) or even going to the toilet (how very dare I!). Other days there is guilt over knowing that your child is fighting cancer while you stand perfectly well by her side or that you didn’t get a diagnosis sooner. One of the worst feelings of guilt comes after you feel sad that you can’t got to social occasions or see friends because you are at the hospital, or because your child is at risk of infection, or you are just all exhausted. Let me make something clear, there isn’t anywhere else I would rather be, but I do feel a pang if longing and sadness when everyone is living life and we have another battle to fight. On top of all that there is guilt because we don’t spend as much time with Owen. It’s a necessary sacrifice and hopefully he won’t remember too much when he is older.
  2. Winging it – well if you didn’t feel like you were winging it before, you do when cancer hits. I can’t lie, I feel like I have always been winging it. I’m almost 100% sure that most other parents feel like they are too, but dealing with a seriously poorly child takes it to a whole new level. All the insecurities that you may have about parenting are amplified. For me, I have always felt that everyone is doing a better job – it’s just how I’m built and in the dark moments it’s easy to believe that you are failing in so many ways. It’s so important to remind yourself that you are doing the very best you can and that is all that matters. Also, it’s still ok to crack a cider or gin or wine to help make dealing with children more bearable – everyone needs to take the edge off!
  3. Adapting to hospital life happens very quickly. Initially walking down the ward felt surreal – almost like a out of body experience. That still happens on occasion, but speaking to other parents has normalised our experiences. Knowing that you are not the only family dealing with the upheaval of diagnosis and treatment is comforting. Also, seeing other families smiling, joking and being happy is so encouraging – you feel that it is possible to cope with a horrible situation. Very quickly you learn medical terms and the process involved in cancer treatment; scans, blood tests, transfusions and emergency admissions are all part of the course. They are completely normal and every family on the ward is having a similar experience. When we are in hospital we almost feel ‘normal’; we aren’t the family dealing with a tragedy that no one else can imagine having to deal with. In hospital we are the same as everyone else.
  4. Junk food is our new best friend. It doesn’t matter what it is, Eleri gets it. If it means going out to get fast food, off we go. Sorry to all the food police that are reading this, but it true. Never in my life have I been so happy to give my child a ridiculously high calorie snack or meal. Sweets, crisps, chocolate, ice cream, cakes, milkshakes, sausage rolls, pancakes – you name it she has it. We are Jamie Oliver’s worst nightmare. She spends so much time not eating and has lost so much weight, that we need to get the calories back into her quickly. Also, chemotherapy changes the tastebuds and makes her crave things that she wouldn’t have before. For example, Eleri developed a obsession with salt and vinegar crisps – they were all she ate for a week. There will be a time where eating so much junk food won’t be necessary, but that is for the future and we will deal when it comes. Right now, fattening Eleri up is our priority.
  5. Poo 💩 – you become obsessed with poo. Never before have I known, or indeed wanted to know, so much about fecal matter. Frequency of, consistency of and colour are of daily concern. A good day is now defined as Eleri having having two poos of a soft consistency with minimal trouble passing them. It’s amazing how your criteria of a good day can change within the space of a few weeks.
  6. Behaviour – this is tricky. Eleri has always been ‘spirited’. This combined with pain, loss of mobility, change in lifestyle and horrible treatment means that she can be very difficult. Her behaviour started to seriously change about a month before diagnosis. She was becoming so difficult that I was considering contacting the doctor for support – this was no small step as I have been teaching children with difficult behaviour for many years. I felt like I was failing her. We now know that difficult behaviour is related to her pain – the worse it is, the more her behaviour deteriorates. Difficult behaviour is also related closely to control. Eleri has lost all control and independence so she is trying to regain that control where she can. This often results in, amongst other things, screaming and shouting when a nurse or doctor want to examine her and refusing to take medication. At these times the best way to deal with her is to ignore the behaviour and the horrible things she is saying because she is having a crisis moment. When she is like this, we outline what needs to happen but give her choices on how it will happen. She keeps some control, but the end result is the same. We have learned to pick our fights. She has to take her medication, so that is a fight. She doesn’t have to change out of her Pyjamas if she doesn’t want to – as far as I’m concerned she can stay in the same pair until they develop legs and crawl off her! If she wants food at 10 o’clock at night, she can eat an entire buffet. All this said, it is really important to be able to tell the difference between when she is anxious and when she is just being plain difficult. I know the difference and am trying to remain loyal to the core values that we deem important. It’s important not to let everything go and not to get wrapped up in the parent guilt and outpouring of love that you have for them. When she gets through this, she still has to function as a decent human being and speak to people in a acceptable way. If she gets everything she wants, when she wants it, she won’t learn that she has to wait for things or to ask politely for what she wants. It’s really hard to be strong, but we have to. Cancer or no cancer, all parents want their children to become decent human beings and keeping that at the forefront of your mind is important. When we get out of the other side of this, she still needs to be nice!
  7. Don’t plan anything, ever. One minute everything is fine and the next you can be on your way to hospital for a transfusion or chemotherapy might take longer than you thought and you end up staying in for a few extra days. Other days you might plan on going out but Eleri can wake up and feel too poorly to go anywhere. We live our life day by day. It’s not forever, but it is our present.
  8. Nursing – Nursing a child with cancer is a full time job. There are elements of said nursing that were not on the list when I signed up to being a mum. For example administering an enema (back to poo) or cleaning dead skin off toes that have been in a cast for weeks – lush. There are also hospital trips, physiotherapy, administering medication and checking temperatures regularly. The thermometer is now my best friend and I’m obsessed checking how hot she might or might not be. Nursing can also be difficult when there is a preferred parent; that parent ends up providing most of the care and becomes the focus of the anger. When the anger becomes too much for that parent to take, it is so important to take a step back. In our case, that parent is me and when I need a break Eleri becomes very upset. It took a long time for me to realise that even if she is upset, there are others that can take care of her and it’s ok for me have some time for myself to regroup. In fact, I have learned he hard way that it is extremely important to take some time. In the first few weeks I couldn’t and wouldn’t leave her side. I was exhausted, irritable and short with everyone around me. A negative atmosphere instantly feeds Eleri’s mood and makes her more unsettled. Stepping back was necessary for everyone to regain control of their emotions and support eleri when she is anxious. Always give yourself time.
  9. Don’t judge other parents, ever. I like to think that I’m a no judgement parent. I’m the sort that feels for the mother who’s three children are all screaming while she is trying to get the family shop done in Tesco, rather than tutting and moaning about the noise or the ‘lack of discipline’. I’m a ‘parent’s parent’. I believe that all parents should be supported and not judged because it is bloody hard bringing up children. It is harder when your child has cancer. They have more meltdowns and they are almost always in public. When we first started coming into hospital and Eleri was screaming at the staff, I felt awful. I thought that everyone was blaming us for not being able to control our daughter. Actually, it’s the exact opposite. All the parents on the ward have had to deal with behaviour of some form of another and nobody even looks twice at a screaming seven year old. No one is judging you for giving your child the iPad to watch ‘The Greatest Showman’ on loop or unboxing clips on YouTube. They have all been there and feel your pain. The parents, doctors and nurses all said she would settle down. I couldn’t believe it at the time, but she has. Things will always get better and staying open minded until you do will help you though. Support and love is what we should offer all parents, not judgement and chastisement. Love and support the adults and they will be better placed to love and support their child.

In all of this it’s hard not to lose you – to lose your sense of self. When I became a parent, I found that I had to develop a new identity, one that balanced me as a person and me as a mother. I feel like parenting a child with cancer has pushed me to change my psyche again. I think in the first few weeks after diagnosis parents become so focused on getting their child well that they can forget who they are and what makes them happy – know I did. We had such a tumultuous start to our journey that it became almost impossible to maintain my sense of self or to remember what makes me happy as an individual not just as a mother/wife/carer. This is going to sound silly, but what added to this as the beginning was having my hair cut. I wanted to donate my hair to The Little Princess Trust and be supportive of Eleri cutting her hair. Not only did I cut my hair shorter than it had been in almost 20 years, I also had it dyed darker so I didn’t have to keep going back and forth to the salon for maintenance. When I looked in the mirror I didn’t recognise myself or my situation for weeks. It added to to my sense that Eleri’s cancer and everything around me was somehow unreal – I also hated it which didn’t help either. (Important note here – if you are in the swing of a family crisis don’t make it worse for yourself by chopping your hair off, it does not help the mind!).

Being in hospital with Eleri has meant having to build a whole new routine that supports her, but doesn’t necessarily support me, Rob or Owen. It’s a balance we are still trying to find. With her now settling into a more standard treatment pattern, it should be easier and more settling for us as a family. I am starting to feel more like me. My hair is getting longer and curly again (thank the lord!) and we have all spent more time at home. I managed two yoga classes last week and had my nails done! I have been able to cook and Rob is starting to exercise again. Owen has had both is parents back for more than a night and has stopped screaming at everything. We are building a new normality for ourselves as a family, as individuals and as parents. All we can do is keep going and see where it leads.

Radio silence

It has been two weeks since my last post. I’m not slacking – I have been devoid of my ability to write. Sounds dramatic, but true! Fear not, Eleri is doing well. She has continued to grow stronger physically and mentally. Her anxiety has started to subside now she is no longer in pain and she is coming to terms with her hair loss. The histology of the tumour has shown that they removed all the malignancy and, more significantly, there was 20-30 percent necrosis (death) of the cancerous tissue. This is very positive especially as they believed the drugs were having little or no impact. The doctors have decided that this encouraging response should be capitalised on and they are now continuing with the remainder of the chemotherapy protocol; he second surgery has been schedules for later this year. In the last few weeks we have started to see fleeting glimpses of our vivacious girl and we are now daring to hope that she will return to full form soon. As you see, she has not been the cause of my radio silence.

In 2012, Rob fell down a flight of stairs on a night out and suffered a traumatic brain injury. It was so serious that they didn’t expect him to recover. I was told that he probably wouldn’t wake from his coma and if he did her would have permanent, life changing neurological and physical injuries. However, anyone that knows Rob, will understand when I say that he never does what he is supposed to do. He always does exactly what he thinks is right and, in this case, it was exactly what he needed to do. He proved all the medics wrong. First, he woke from his coma, then began to move, then began to talk, then began to walk and within three weeks had discharged himself from hospital. He received rehabilitation through the RAF at Headley Court and within three months had outstripped their capability of rehabilitation; the only option was for him to return to work. He presented with no permanent injuries, other than a loss of smell and taste. We were, and still are, incredibly lucky that he has returned to a normal life. We will be forever grateful.

We always knew that there was a chance that he could develop seizures. The risk decreases steadily every year post injury and we were quietly confident enough time has past to rule them out permanently. It would seem that fate had other ideas. In the last two weeks Rob has suffered three seizures which the doctors believe have been brought on by stress, anxiety and lack of sleep. There is probably a link to the previous injury, even though there has been a significant period of time since his accident. Our current situation and Rob’s inability to switch off has been too much – his brain has said ‘no more please, I need to rest’. Like I said, we always knew it was a possibility, but hoped it was a bullet he had managed to dodge – obviously not. In the days after the seizures he was left dazed, confused and very tired. He is returning to normal and it shouldn’t change his everyday life too much, however he will be unable to drive for the next year while they monitor this new condition.

So how do we feel? How are we moving forward? How are we picking up the pieces? I have no answers to these questions. I’m angry that it has happened to Rob and our family. It doesn’t seem fair that we now have to deal with another, almost Shakespearean, drama at a time like this. Cancer has a lot to answer for! I feel like I’m living someone else’s life and am struggling to come to terms with my reality. I’m trying to find something profound and insightful to say, but I have nothing. I have been trying to make sense of it, but I have nothing. I wanted this blog to be an honest and transparent account of our journey – our current truth is that we feel broken and are taking things a day at a time. I know we will get through it all, we have before and we will again. I believe in picking yourself up and dusting yourself off, but its going to take a little longer this time. We need time to feel sad and shocked – it’s important that we do. Things will get better but its a little way off yet. We are uncertain of the future and what our life holds but, whatever that life is, it will be ours and we will cherish it.

Five weeks strong…

My posts have been few and far between in the last few weeks. It’s not what I wanted but sometimes you have to resign yourself to life not flowing in the direction you want to take. I’m learning that this is ok and you have to go with it for a while and hope you find a way back to your course. If not, then make the most of the direction you are traveling. Don’t get fretful about it, but embrace what you have and the people you are doing it with – it’s these people that are important and nothing else really matters.

With regards to the blog, I just haven’t been able to finish anything. Writing has been a cathartic experience and helpful in making some sense of our situation, but recently it has been difficult to find the words. I have started writing lots of different posts, but have been unable to tie them together to produce something solid to publish. But now, with the stresses and strains of the last few weeks starting to subside, my mind is feeling less like cotton wool allowing me to attempt a coherent sentence or two.

We are still in hospital having been here for almost five weeks. Our days go by in a haze of tests, observations, examinations, discussions and sometimes procedures which often carry on through the night. It’s hectic and leaves us exhausted. We are all inexplicably tired – not least Eleri. Testament to her tiredness was her taking a nap in an MRI scanner – anyone who has had an MRI knows that it ain’t quiet or peaceful. She really needs sleep to recuperate but, in hospital, that isn’t always possible.

What we have learned is that hospitals are not actually conducive with rest. I mean, they are places you come to be healed, but not to rest; home, a spa, a warm sunny beach are where you go to rest. We had a stint in the Paediatric High Dependancy Unit, where the staff work incredibly hard and take very good care of the patients, but it is busy, noisy and not at all private. This was absolutely fine when Eleri was drowsy from the anaesthetic but, as she became more alert, the hustle and bustle were over stimulating and made her anxious. We were relived when they found us a bed on a surgical ward and she was able to settle down. Hospitals are stressful and being in one for an extended period of time does nothing to bring the stress levels down. We have found the best way to deal with said stress is to get out. This has been particularly difficult for Eleri, but vitally important for the rest of us. Just walking down to the Clic Sargent house and having a sit of the sofa, can help lift some of the weight from our shoulders – especially if Owen is there to make us laugh.

Oxford has a wonderful set up where each of the bays or rooms have a sofa bed for a parent to stay; these are so much better than the reclining chairs that non-specialist hospitals usually provide. For the most part, it has been me that stays in with Eleri but Rob and my sister have also taken a night shift on occasion. If I’m honest, I struggle leaving as much and Eleri doesn’t want me to, but there are times when I have no choice. I have to leave to sleep so I can keep taking care of her.

It’s not just me that’s tired, Rob is traveling back a forth to the hospital and looking after Owen, which is also exhausting. We do have support with Owen from nursery and more importantly my wonderful Aunty Ev, but Rob still has to juggle the little man and hospital visits at the weekend. Most of the time he carries on regardless of how he feels or how much sleep he needs. Although he is only human and there are days where he is struggling to balance a toddler, traveling, washing, organising meetings, picking up equipment, cancelling plans and the reality of a very poorly child. It’s on these days I glimpse just how much this is having an impact on him and that he feels the strain like the rest of us. However, he is stoic in his commitment to getting Eleri well and without him doing the ‘admin’, I wouldn’t be able to devote all my time to being at the hospital – I wouldn’t want to be doing this with anyone else.

All that said, in the last few days Eleri has started to sleep for longer periods during the night and is awake more in the day. Surgery has been a huge success; her pain has reduced significantly, even with the removal one of the biggest bones in her body. The medics are thrilled with her progress and are impressed that she is healing so well. Now that she is in considerably less pain, she isn’t waking in agony, which in turn means I get longer stretches of sleep too. Amazing! We can’t quite believe the difference in her. It has been remarkable. I have had niggling misgivings around it being the right decision – those fears have been quashed by her recovery. There was clearly no other option.

She has recovered so well that on Saturday we started the high dose methotrexate. She has tolerated it and the doctors are hopeful that we will be allowed to go home on Wednesday. We can’t wait to get out of hospital with a daughter that is far better placed to fight her cancer without excruciating pain and agony. Going home in a better state than which she came in is all we could have asked for. The NHS superheroes have done it again!

How are you doing?

This is a question we are asked everyday, by everyone. It’s a reasonable enough – people are worried. They really do care about how Eleri is coping with treatment and how we are holding up as a family. The problem, in the last two weeks, has been that we haven’t really known how to answer that question – well actually that’s a bit of a lie, I have known exactly how to respond but saying cancer is a ‘f***ing c**t’ might be an inappropriate response to people who aren’t accustomed to my angry potty mouth. We want to say something reassuring to give people hope and good news. We haven’t been able to give people the good news that we and they crave because cancer doesn’t really care what you want – it carries on regardless of your hopes, wants and dreams.

The last two weeks have see significant changes to Eleri’s treatment plan. After being admitted with a painful infection, it became obvious that the discomfort wasn’t necessarily completely confined to inflammation of tissue or necrosis associated with the death of cancer cells after chemotherapy. Her leg, or more specifically the tumour seemed to be getting bigger. On Tuesday 24 April they performed an MRI under general aesthetic. Our worst fears were confirmed – the tumour had continued to grow, it was almost at her hip and it hadn’t responded to the first two drugs of the chemotherapy protocol. Osteosarcoma is an aggressive form of cancer, but no one could have predicted the rapid acceleration in growth of Eleri’s tumour. We were told that she needed surgical intervention, but the oncologists were not sure what that intervention might be; it become clear that she might be heading for amputation. It took two days for a decision to be made on the exact surgery and treatment needed.

I have found it almost impossible to express the depths of despair this news brought. The best I have is that it has been like an implosion inside my body. My chest and stomach physically hurt – sometimes it hurts so much I have to stifle a scream. I know this sounds dramatic, but it’s pretty accurate. The darkness at these times is all consuming. It’s heavy and it weighs you down. I can have bright moments where I think ‘I’ve got this…we can get her through this’, then the darkness hits again and the pressure in my chest resumes. When things are settled and she is having a good day, the anxiety subsides. However, when they told us Eleri might lose her leg, it all returned with a vengeance.

We spent two days worrying, researching and pricing up prosthetic limbs. We weren’t even sure, and still aren’t, if a child of Eleri’s age could have a full leg prosthesis. Thankfully, we don’t have to push that line of enquiry any further as the orthopaedic surgeons here at Oxford and, as it turns out, at a national level were satisfied that Eleri’s tumour could be removed and a temporary ‘spacer’ inserted. This ‘spacer’ would stay in place until her endoprosthesis has been made and she is ready for the next stage of surgery. After a two week healing period, she would resume chemotherapy. Relief and elation were the emotions of the hour. Rob was so happy that he lost all control of his somewhat flimsy filter and told a leading oncologist and outstanding consultant orthopaedic surgeon that he ‘wished he had tired harder at school’ so he could be like them and save lives. Laugher ensued from all parties, it was the lightener we needed.

Fast forward to Monday and Eleri had to endure four hours of surgery with hours ether side of preparation and recovery. Before the surgeons could remove her tumour they had to cut and clip the blood supply that it attracted to itself, separate the healthy tissue, ensure that ‘neurovascular bundle’ was preserved and, only then, remove the cancerous bone. At 16.00 yesterday we received the wonderful news that she performed exactly as she should during the surgery and they were able to remove all of the tumour. We couldn’t have asked for anymore. She is recovering in HDU with a view to move to a surgical ward when she no longer needs constant monitoring. Now we just wait and hope she heals well enough to continue chemotherapy.

After a long winded explanation to the initial question of ‘how are you all doing?’ the answer is, we are doing ok. Better than that, Eleri is doing ok. Yesterday and today have been good days – she no longer has a massive tumour poisoning her body. She is tired, but isn’t in as much pain. However, if we have learned anything, it is that we don’t know what tomorrow will bring. We just have to keep riding the train and hope it takes us to our desired destination.

Thank you…

I wanted to take a moment and explain a bit more about osteosarcoma, Eleri’s future and the support she may need. I wrote this post last week and just haven’t had time proof read it and publish. Her treatment has deviated a little since then, but I will explain all that in another blog. Before that, we felt that we needed to say thank you for all the love and support we have already received.

Primary bone cancer is rare, it’s even rarer in children of Eleri’s age. Between 25-30 people a year are diagnosed with this disease and the majority of these are between the age of 10-25. The odds that any child would develop childhood cancer are rare, the odds of Eleri having osteosarcoma are almost non existent. As this cancer is so rare, research and trials are few and far between, therefore treatment for osteosarcoma has remained relatively unchanged for decades. Survival rates can be anything from 20-70 percent depending on when someone is diagnosed, if there are any secondary cancers and how an individual responds to treatment. Eleri will receive chemotherapy, an operation to remove the cancer and then more chemotherapy.

Something that has improved significantly in recent years is the treatment of the limb that is diseased. Previously, amputation was the only way to rid the body of cancer – thankfully there are other options today. Most people receive limb sparing surgery that replaces the bone with a graft from another part of the body or an ‘endoprosthesis’; we like to call this a bionic bone. This ‘bone’ is fitted with a mechanism that allows it to be adjusted as the child grows. We are hoping that Eleri will receive limb sparing surgery. However, 15 percent of patients with osteosarcoma still have to have the limb amputated. We wait with baited breath to see if the initial stages of chemotherapy treat the cancer effectively and allow the surgeons to save her leg.

As you can see, Eleri’s future remains unclear. We are unsure on what the outcome of surgery may be and how this will impact her life. What we do know is that she will need some support with equipment and house adaptations. With that in mind, a few weeks ago my sister started a crowd funding page. It wasn’t something that I had thought about or wanted to do. However, she and my cousin Claire, persuaded me otherwise and fundraising began. The response has been phenomenal, I never expected anyone to donate, let alone start fundraising for it. We hope to put some of the money towards anything that will make Eleri’s life easier and to the charities that have supported us. I have included links to them below. Please, if you can, take the time to familiarise yourself with them. Should you ever want to fundraise, they are all very very worthwhile charities.

The work charities do and the support they give is unparalleled. When you put that together with the generosity of our community, friends and family, I have learned that the natural human condition is one of love and kindness. People want to help and be helped. We will never be able to thank everybody enough for their love and support, it means so much. To love and be loved at this time is truly wonderful. Eleri’s diagnosis continues to be a life changing experience in many ways. Whatever the outcome may be, with the support of our friends, family, and these charities it will mould our lives into something new. It will be new and different, but not worse – never worse.

Macmillan Cancer Support

https://www.macmillan.org.uk/

Click Sargent

http://www.clicsargent.org.uk/

Toms gift

https://www.macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/help-with-childrens-costs/toms-gift.html

Royal Airforce Benevolent Fund

https://www.rafbf.org/

SSAFA

https://www.ssafa.org.uk/

Fairford Town Charity

Quenington Bulldogs

Oxford Children’s Hospital Charitable Trust

https://www.ouh.nhs.uk/charity/what-we-do/chox/default.aspx

Eleri’s Go Fund Me page

https://uk.gofundme.com/5c1ftuw

Bravery

We have had a difficult week. Eleri has been pretty poorly and it has put halt to everything. You know it’s been tough when the medical staff are using words like brave, courageous and strong. The word brave has stuck in my head and I have been pondering over it.

Sometime ago I came to the conclusion that bravery is largely subjective. I believe it it is a virtue that everyone possesses. For a person who is arachnophobic, it is brave for them to be in the same room as a spider; a person boarding a plane when they have an overwhelming fear of flying is brave; a solider going off to fight in a war and knowing that they might be killed, is brave; an alcoholic attending a party with friends and ordering a tonic water while everyone else is having their favourite tipple, is brave. Also, one person might have to call on bravery more than once in their life and for very different reasons – the solider that went to war might later have to find the courage to ask for help in dealing with the emotional ramifications of taking part in armed conflict. My point is bravery comes in a multitude of forms and changes with personal circumstance. We all find bravery in us when we need to. When you have no choice but to face your fear, I think everyone finds the resilience within to try and overcome adversity.

‘Strong’ is a word that is often used in conjunction with or as well as ‘brave’. They are used in an interchangeable way when people are trying to find the words to express their reaction to whatever challenge you may be trying to conquer. The problem, in my experience, is when you are faced with a particular woe that you need to overcome, you don’t really feel brave, strong or courageous. We certainly don’t. In fact, the majority of the time we live in a constant state of fear and anxiety. It feels like we are jumping from one catastrophe to another without any control or real understanding of what is going on. When we talk about what we are experiencing, we always get the response ‘you are so brave, I don’t know how you do it.’ We do what we need to do to get through a day. We get up, we function, we go to bed. No parent is trained to deal with childhood cancer. No one is trained to be brave. You don’t have a choice, you fight for what you love with all of your being and hope that it’s enough. The alternative isn’t worth considering.

This week Eleri has been battling a serious infection. She has been in acute pain and has spent hours screaming and crying. However, when she emerges from her cloud of pain and fear, she apologises for shouting at everyone. She attempts to eat. She attempts to play with the gifts she has been given. She attempts to be normal, even when she feels wretched. In Eleri’s case, bravery is attempting to be a child when having contend with suffering usually reserved for an adult world. Childhood cancer is a cruel unrelenting beast and facing that day after day without a true understanding of what is happening to you is, in my opinion, the highest form of bravery.

I guess what I am trying to say is that we are no different from any other family that is thrust into the crazy world of cancer. Sometimes we laugh, sometimes we weep and sometimes we shout. There are some days when we don’t want to get out of bed and we don’t feel like being strong. We don’t want to carry on the fight – but we do. We also get sick of the sight of each other. Being in close proximity to your loved ones for an extended period of time is not always conducive with staying of sound mind – everyone needs a break. But through all of this, we are together. A comedy of errors out life may have become, but it’s our comedy and we will be as brave as we need to be to ensure it’s not taken away from us.

The playroom is not for us…

Comic Relief, Children In Need, Sport Relief, Text Santa – the list goes on. All these wonderful shows do an amazing job at raising money and awareness for people in heartbreaking situations. We have all seen the short films that they make documenting the charities and people they support; street children in Africa, mental heath services, children in foster care, people who are homeless and, of course, children with cancer. I, like everybody else, have watched these films, cried and thanked whomever is controlling the universe that isn’t us. Now I feel like I didn’t thank the powers that be quite loud enough!

These films and charity events, without realising it, have influenced some of my understanding of cancer. In the past I though that cancer is awful, but children and adults are treated and the families are supported. Not just that, the children who are facing adversity, do it with grace and humility. Yes they are in pain, yes they get upset, yes they struggle with what is happening to them, but through it all they are calm. They are surrounded by loving parents who are able to nurture and reassure them. They take part in activities that keep them stimulated and entertained. They may hate their treatment and all the things that go with it, but accept it because they know it will help them. In short, they are bravely dealing with the worst possible situation while still smiling. Needless to say, I may have misinterpreted these films…just a little.

The reality of our fight has been very different. I have a friend whose family have suffered the same trauma as us. When talking about her experience, she said that they were categorically not the family that went ‘skipping and jumping down the corridors to the play room.’ It was a lightbulb moment. Until speaking to her, I had been feeling the same and was really worried about it. I felt like we weren’t normal – that Eleri isn’t coping and we were already seeing detrimental psychological effects. Having now spoken to the nurses, support workers and doctors, we know that she is reacting in a perfectly normal, all be it very loud, way. It’s ok not to want to skip into the arms of a play worker that offers a wonderful craft project. Who wants to get sticky fingers and ink on their hands when have recently been told they are seriously ill? It’s ok not to like the people who are trying to cure you. In her little world, all doctors and nurses have done is give her bad news and make her have painful operations. They have taken her away from her friends and made her stop going to her clubs. Worst of all, they give her ‘medicine’ that not only makes her nauseous but will make her hair fall out. Let’s be honest, I think the resentment is completely understandable.

When we are in hospital Eleri is miserable and angry. Not just that, she has no interest in the playroom, play workers, storm troopers (yes an actual storm topper came to visit), spider-man (ditto) or a so called ‘magic man’. She absolutely hates that her happy life has been interrupted by this disease. She just wants her leg to stop hurting and go back to school. There is no grinning and bearing her pain, there are just screams and tears. Sometimes she is so angry and upset, all she can do is shout at us. Sometimes she can’t bare to be parted from me and we end up with a nuclear meltdown if I dare leave for a toilet break. All we can do is keep our composure and reassure her that all will be ok. Everyday is a challenge to keep her from slipping deeper into darkness. We have to be strong for her, but seeing her like this sometimes renders us incapable of helping her find the light.

It is during these bleak moments that we need support. The very people that Eleri detests are the people who help us the most. The medical staff are patient, kind and empathetic – basically absolutely wonderful humans. The TV got that bit right! They go out of their way to make sure Eleri is getting what she needs and are very attentive. They bolster our spirits and reassure us that we are doing our very best in a particularly arduous situation. This dichotomy Eleri can’t see and she remains largely ambivalent to them. It’s upsetting to see her react like this, but ultimately understandable.

In the face of this particularly difficult customer, the staff always remain positive and help us laugh away the tears. Laughing is so important and you have to find the funnies, even at a time like this. We couldn’t possibly go through it all without laughing – life would become too desperate. It’s the times that the laughter spreads to Eleri and we glimpse our gorgeously unique girl, we are reminded what we are fighting for. Failure is not an option – optimism, positivity and love are the roads we must take to give her normality once more.

I have no doubt that as we get deeper into treatment this will all become normal for her and she will become less anxious. She may even venture to the playroom happy to ‘have fun’ or smile at the nurses as they change the dressing on her Hickman line. We may yet become the family skipping down the corridor into the arms of the play specialists. Until then it’s reading, top trumps and TV.