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.

I’m sorry, Osteosar – what?

It started just before Christmas, December 23 to be exact. Eleri woke in the night complaining of a pain in her leg. For her to wake and ask to come into our bed is not unusual. We try to put her back which ends in some kind of hysterical response from her and us having to calm her down. This was time was no different, except for the mention of the leg. I did believe her, but I put it down to a strained muscle. She had been trying to ‘get her splits’ for gymnastics. I assumed that all the stretching, jumping and straining had resulted in an injured muscle.

After Christmas Day, we decided to go back to Wales to spend some time with family. On the journey home, Eleri woke up screaming saying that her leg was hurting. We took her to an emergency appointment at my parent’s GP. The doctor examined her, watched her walk and checked for swelling. He decided all was ok; if it carried on, she could be taken to A&E. We didn’t take her because she stopped complaining, so much so we went to soft play and zorbing!

The next time we saw a doctor was a few weeks later. She was still complaining of pain waking her in the night, not every night, but now and again. I had my suspicions that she was playing on it, but couldn’t be sure. Again I took her to the GP, who examined her and thought that there could be a problem with her hip. She sent us for an X-ray and referred us to physiotherapy. While we were waiting for the results, Eleri was not to take part in any of her sporting activities. The X-ray came back clear, we were told she could go back to her clubs, take it easy and wait for the physiotherapy appointment. Eleri was thrilled, it meant she could compete in her gymnastics competition. She came 1st on the floor and placed 2nd overall. She was so proud and utterly thrilled – as were we. It also reaffirmed in my mind that there couldn’t be too much wrong with her leg if she had won a gymnastics competition. By this point we had reached the beginning of February.

The following weeks went by with very few incidents. She didn’t seem to wake up in the night and she wasn’t complaining of pain. However, her behaviour was gradually deteriorating. She would become hysterical over the smallest things and impossible to talk to or reason with. She would shout at us, stomp off, tell us she hated us and, on occasions, be very mean to her brother. She was also refusing to eat. Again, we have had difficulties with her eating, but this was far worse. We didn’t recognise it as a loss of appetite, just thought it was a phase. We made a similar assumption about weight loss. She had grown taller and seemed to slim down. Most children do this as they grow and it wasn’t something that we were worried about. We didn’t link these symptoms together. It never occurred to us that they might all be related. What we now know is that this type of sarcoma presents with intermittent pain, often in the long bones of the arms and legs. Not only that, the pain comes and goes and is often at its worst at night. Children who have developed Osteosarcoma can also have a loss of appetite, weight loss and lethargy. With hindsight it seems that Eleri was suffering from all of them.

In the week starting the 26 February the ‘Beast from the east’ arrived in the UK. It brought extraordinarily low temperatures, ice rain, snow and blizzards. As the temperatures fell, Eleri was playing netball outside for her PE lesson. He leg started to hurt and it was so bad that her teacher sent her in to get changed. By all accounts she was very upset; her teachers were concerned enough to call me. I booked a doctors appointment for the following day. Again, the doctor examined her and this time pushed exactly where we now know the tumour is. Eleri reacted instantly saying it hurt. However, the doctor then distracted Eleri and pressed in the same spot and she didn’t offer the same response. The doctor felt the same way I did; she wasn’t sure there was anything major wrong but wanted to hurry the physiotherapy appointment.

Eleri still wasn’t herself. Thursday and Friday she spent a lot of time sleeping. This was very unusual. She didn’t want to move from the sofa to do anything. Friday night was the game changer. She woke up screaming and was inconsolable. It was terrifying for us and her. She came into our bedroom and we were unable to calm her down. The more we tried to placate her, the worst she got. She kept saying “I want to go back to bed” but was refusing to climb the ladder up to the top bunk. In the end, Rob had to lift her and put her in himself. We decided that we were going to take her to A&E the following day.

She woke Saturday morning in good spirits but by early afternoon she was finding things difficult again and we headed to A&E. They did an initial X-ray of her knee which seemed fine. On closer inspection the consultant noticed a swelling of the femur and wanted some more pictures taken. After looking at the new X-ray they told me that she had a stress fracture but it was healing. I felt terrible. It’s not that I hadn’t believed her, I just thought she was over exaggerating. What was strange was that we couldn’t pin point a trauma that would have caused a fracture. The orthopaedic team were called, and they did their own examinations. They decided that we were to come back the next week for a MRI because they wanted to do some further investigations to ascertain what had caused the fracture. Little did I know that things were about to get a lot worse.

Never in our worst nightmares did we think it could be cancer, but it was and is. The rest of our story is one of standard diagnosis. The MRI showed a tumour that ran the length of her femur and had spread into some soft tissue. She would need a biopsy to discover exactly what the cancer was. Initially they believed she had Ewing’s Sarcoma, but the biopsy confirmed Osteosarcoma. This is still a rare bone cancer, just a different type. Only between 25-30 people between the ages of 10-25 are diagnosed with this type of cancer a year. In a girl of Eleri’s age, it is even more rare. Anyone that is familiar with our family will know that we seem to attract rare and dangerous conditions. Clearly this is going to be no different!

So here we are today – the beginning of the end of Eleri’s Osteosarcoma . In total, there will be six rounds of chemotherapy, with an operation on her leg after the first two. It’s time to dig deep, stiffen our resolve and kick the cancer monsters out. Taxi for Osteosarcoma please!