Childhood Cancer Awareness Month ~ a daily reminder of how shit childhood cancer is.

I am emotionally drained by Childhood Cancer Awareness Month.

This is somewhat ironic I know.   I have done all I can to shout as loud as I can yet it has taken its toll and we’re not even at the end of the month yet.

The honesty of the contributors and rawness of the blogs have hit hard and after 25 days I feel completely exhausted by the emotional impact.  This begs me to question the impact of Childhood Cancer Awareness Month.  I have found the constant reminder on social and mainstream media quite difficult to bear.  At the beginning I was inspired to do all I could to raise awareness; today I feel emotionally spent.  The constant reminders of the pain, suffering and turmoil that families go through are too much.  We are too close.

We were just getting to the stage where, occasionally, I could forget that Felix is still treatment.  The intense period of treatment was turning into a distant memory and the future was looking positive.  I didn’t think #ablogaday through at all.  Every day in September I have had to revisit emotions and feelings that I had worked hard to suppress and bury.  What a muppet I am!

Therefore I am opting to end my #ablogaday today.  We did well – 26 days of back to back blogging (well apart from 16th September which was Ru’s birthday and I forgot!).  I would like to thank everyone for their heartfelt contributions, comments and messages.  I think we have done what I hoped we would which is getting people talking about childhood cancer.

However, I’m done with talking about it for now for a while.  Childhood Cancer is a wretched thing which only causes trauma and grief.  I need to talk about something else.  I have loved receiving blogs from people and I hope you guys will continue to be empowered to write as I believe it can help us make sense of this world and support the healing process.  Therefore, I would like to continue to invite people to contribute their blogs for publishing on Mrs Brown’s Blogs.  With this in mind, I declare that October will be dedicated to blogging about #beinghuman.  What does #beinghuman mean to you?  Who best demonstrates #beinghuman?  Where do you observe #beinghuman?  Please share your insights and philosophy – no rules, constraints or formula – just subjectivity, relatively and creativity!  To contribute to #beinghuman, please send your blogs to mrskabrown@yahoo.co.uk.

I can’t wait to hear from you all; there is an abundance of talent and inspiration hidden in the world around us.  Please share for us all to enjoy!

Thank you for your continued support, love and compassion – it means the world!

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In Praise of a Bombay Badboy ~ A Guest Blog by Mr Brown

I’m not a fussy person. I tend to get on with things. Not wanting to make a fuss. It would appear, however, that I have a sort of mental ‘Room 101’ residing in my head. If the world could hear my thoughts, I think I would be banished to a small, undeveloped desert island. Population of 1. Me.

One thing I do very well is worry. I’m one of life’s habitual, perpetual, unashamed worriers. I can’t quite tell you when it came on, it’s just always been there. When I was at school it revolved around Friday spelling tests and being late. Both of these have remained with me into adult life. Thank God that Bill Gates got together with some other like-minded individuals and invented an automatic spell checker. Without which, yuu wood stugl to make aani sens of this. (See what I did there)

Lateness is another one of my pet hates, I really can’t stand it. Lateness in any form tells me one of two things. One, you are disorganised and live in a chaotic world so unpredictable you struggle to factor in simple things like ‘travel time’, ‘traffic’, ‘telephone calls’, ‘dressing oneself’ or even ‘applying makeup’. Any of which could derail a secured meeting time by at least half an hour. The second is that you simply don’t care enough.

Other things I don’t like include complicated coffee. I make great pains to order a white coffee in any coffee shop that will have me. If my request is met with complicated embellishments, I order tea. English breakfast tea for one. As for needing my name, I have no idea why. If I was planning on running from the shop, completing a half marathon and then returning, I’d leave a name and possibly reheating instructions. Oh, and an approximate time. I’d hate to be late and keep them waiting.

Hospitals also used to be on my hit list. How many times do people say ‘they hate hospitals’? I used to say the same thing. Hospitals, awful places. Needless to say, I’ve changed my opinion.  Hospital buildings appear cold, austere almost soulless in the way their erect frames dominate the skyline. I remember visiting hospitals when I was younger. Often because an elderly relative had been taken ill. I rarely, if ever had to visit a youngster. A child.

You see hospitals are for the old, the infirm. They aren’t really designed for children. But look beyond the walls and you see true miracles. Miracles being performed in an almost perfunctory manner. Not by superheroes, but by normal folk. With normal names like ‘Jane’, ‘Martin’ and ‘Jo’. They go about their everyday business with calmness, respect and passion. A passion to make a difference to young people’s lives. To all our lives.
Without these heroes, hundreds of children and hundreds more parents, grandparents, uncles, aunties and friends, would be staring into the abyss alone. Unsure about what to do next. What might or might not happen to their loved one.

If ever you find yourself complaining about the surgery running late, or the appointment needing cancelling, it doesn’t change the fact that the people who work in the NHS are my heroes. They have saved my son, on more than one occasion. They were there when all my children came into the world. They will be there for you when you need them. So don’t worry. They are ace.

I guess the title of this blog appears slightly detached from the content so far, but bear with me for just a little longer. Pot Noodles are oddly one of my guilty little pleasures in life. Simple, satisfying, warming and easy to make. It’s also fantastic how little washing up is created. I have lost count of the number and variety of these humble noodles in a cup I’ve consumed while being in hospital. It’s possible that I have consumed my own body weight in these salty, powdery treats. That’s quite a sobering thought.

From this point on I shall always associate Southampton hospital and Pot Noodles. You see, they provided a momentary respite from the ward. A time to wander to the family room, flick the kettle on and sit. They provide instant warmth. A moment of normality in a less than normal world, where blood counts and lumber punctures are the norm. The humble pot gives up its flavour, its sustenance by design, to fill that gap. To fill both your time and your stomach. It provides a connectivity between you and the other parents who sit, drained, almost motionless over their microwave meals for one. They often signified the end of a long day. Preceding a fractious night of broken sleep and piss pots. But for those 5 minutes, I felt comfort.

To be honest, I wouldn’t recommend making them part of your next diet plan. Otherwise, you too could end up on a ward. Psychologically they were delicious. Nutritionally, questionable. It’s funny what you associate with different times in your life. I’m already thinking about which one to celebrate with when Felix gets the all clear in a little over 18 months. Maybe just one more ‘Bombay Badboy’, or I could go all traditional with a ‘Beef and Tomato’. Or then again maybe a just a tea. Decisions, decisions. Mr B.

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It’s just a blip ~ An Anonymous Guest Blog for #CCAM

Is this a flippant comment? Naively, I didn’t think so! On hearing the shocking news of Felix’s diagnosis this was the sentiment I wanted to pass on. At the time I firmly believed Felix’s cancer story would be but a couple of tough years which would eventually become shadowed by a lifetime of love and laughter.

“Why on earth?” I hear you mumble in disbelief. Well ironically until today, this was my raw personal experience of cancer. At 16, I watched as my beautiful Mum had her tumour removed and suffered the discomfort of radiotherapy. However, during the process, she evolved into a fearless creature that insisted my sisters and I became fiercely independent because life is not to be taken for granted. This attitude still persists!

My caring and fearless husband has overcome his blip an astonishing four times. I occasionally wince as I witness the poor junior doctor’s arms shaking under the weight of his medical file, but each painful but genius treatment has worked. We’ve even beaten the odds and have two beautiful, boisterous boys to love. So up yours cancer, we win!

My determined sister also took on her blip. The cancer was cut from her leg; she completed the gruelling 26 mile Jurassic coastal walk!

With each of these blips I’ve cared, comforted, cleaned lines and cut up food. I’ve felt anger, frustration and isolated. However, the dark 3am stints eventually dissipate and before you know it you’re planning holidays and making memories, whilst exuberantly holding onto one another and breathing a sigh of relief.

This weekend changed everything. I wept as I watched my brave and loving Mother-in-law breath her last ragged sigh of relief…with it my ideology about cancer also dissolved.
As I experience the strongest of families, struggle with their desperate waves of grief, I believe it is incontestable that we need more research, because my children need their Grandmother, Father, Nana, Auntie and friends.

Therefore I apologise, it’s not ‘just a blip!’ Naivety carried us so far but in the end, the violent reality of cancer crushed us.

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A Letter From a Stranger ~ A Guest Blog by Katherine​ Hediger

Dear Kerry,

I’ve hesitated for hours and days before finally deciding to write … and this message has sat in my outbox for a long time too.

I follow your blog, and from what I gather our stories are quite similar, and I suppose I just wanted to share mine with you – so here goes …

It was my sister who told me about you. She lives in Bournemouth and had heard about you and Felix’s Facebook page.

My son Theo was diagnosed with ALL in January 2017. Out of the blue – a thunderbolt that shocked us to the core. He was 12 yrs old at the time and we were in the UK to celebrate my 40th birthday with family when he really began to get sick (we have lived in Switzerland ever since Theo was a baby). His symptoms were mainly chest pain, so this sent the doctors off on a wild goose chase, with ECGs, chest x-rays, MRI scans, IV antibiotics. First of all, we were told it was just down to a growth spurt. Then it was inflammation of the cartiledge between his ribs and chest bone. Then it was suspected pleurisy. He was kept at hospital for 5 days while they tried to keep his temperature under control. He was in incredible pain. He screamed and begged to end his life – delirious and scared in the middle of the night. I watched various doctors scratch their heads – trying desperately to confirm a diagnosis. The chest pain eventually disappeared, but his hips hurt. Then his shoulders. Then his legs. He started creeping around like an old man – crying in pain when his knees gave way under him. After 7 days of antibiotics, we were finally able to return to Switzerland, and the doctors handed me the results of his last blood tests, vaguely explaining that there were some anomalies (presence of blast cells) that we should follow up with Theo’s paediatrician once back home. They even said we should possibly consider a bone marrow test, which seemed bizarre and totally random but I was told there was nothing to worry about.

We managed the journey home, although I’m not sure how. Airport assistance provided me with a wheelchair to push Theo through the terminal building as he could barely walk. He cried in agony for the duration of the flight, and I just knew looking at him that something was very wrong – he was grey and his eyes hollow. I forwarded all the reports from the hospital to his Dr, and we were there first thing the next morning. Theo was already fed up of being poked and prodded and just wanted to be left alone. I told him I was not stopping until I knew exactly what was wrong. The evening before my family (who had researched some of the terms from the hospital report) tried to warn me that things didn’t look good, but I wouldn’t listen. I was in total denial.

The paediatrician examined him, felt his liver and spleen which were enlarged due to the white blood cells and sent us later that day to the University Hospital in Lausanne. We arrived, I explained the whole story again, they took bloods from Theo, and within a few hours, we were being told the news that even today seems impossible. Theo had Acute Lymphoblastic Leukaemia. He was being kept in hospital in isolation. They would take a bone marrow sample the following day to confirm which type of Leukaemia and to administer the first dose of chemo into the spinal fluid. I was calm – totally and utterly calm, listening, trying to take in everything they were saying. Then frantically making phone calls. I didn’t cry. Not one single tear. Like I was on autopilot. The next 10 days are a bit of a blur. Theo was taken to the operating theatre early in the morning and they inserted a tube into his neck. I have never seen anything so horrendous. It bled and it hurt him like hell. He started on the steroids that made him wake in the middle of the night craving cheese. Days and nights merged into each other. I informed my work colleagues of what was happening, and Theo’s school. The grapevine started to spread the news.

Then after 10 days were allowed home. The tube in his neck was removed awaiting the portacath to be inserted a couple of weeks later. We came home with a file of information, medication, and the awful realisation that the Leukaemia was still there. I was overwhelmed by the responsibility of caring for such a sick child. Theo was scared. It was different being ill in hospital – that’s what hospitals are there for. But being at home felt different. Things had changed definitively.

We ploughed through the next weeks, waiting impatiently for the results of the second bone marrow test. The doctors were pleased – there was no residual disease; Theo was reacting well to the treatment. Ironically it appeared that the sicker he was, the better his body was reacting to the chemo, which was good for beating the Leukaemia. Difficult to explain to your child when they’ve just been sick for the 5th time on an empty stomach. The reality sank in. Relentless sickness, headaches, tears, despair, hospital visits, questions. Theo hit some very dark times at his worse – one time he headed to the kitchen and tried to grab a knife telling me he would rather be dead than have to go through the treatment. I held him forcibly on the kitchen floor. My partner held us both. Everyone was sobbing. I told him that there was no option to give up. He would fight the cancer every step of the way, and I would be by his side.

He missed the rest of the academic year, which in this school system is an important one as the kids are then streamed for either higher education or a less academic route for later on. Luckily the school let Theo continue in the group on which he had set his sights. But this year is already proving tricky – we are a few weeks into the new term and he’s just reached the end of Delayed Intensification, and has already missed lots of lessons. The big difference is that we know that soon, he will hopefully be much more in school – so anything he misses now, will only have to be caught up on later. He’s putting the bar high, and I find myself worrying that if he doesn’t do as well as he wants, he will become demotivated and will give up. I spend a lot of time wondering how much I need to make him work, given the fact he is still having frequent chemo and suffering from all the side effects. The boundaries are less clear than before … how to maintain rules when the circumstances are so different. A very grey area which I have struggled with on numerous occasions. His games console has been at times his new best friend and a great source of consolation when he was isolated from almost everyone, but like every teen – the temptation of the screen is strong and I don’t want him glued to gaming just to fill the void his illness has created. But as one of the nurses pointed out, he needs time to relax and free his mind. It’s all about balance. And there are no rights or wrongs, just everyone trying to do the best they can.

Unlike most cancer patients, Theo only lost his hair very recently. It was just a few days before school (perfect timing !) and he called me panicking from the shower. Hair in his hands, in the sink, falling off onto his towel and t-shirt. It became progressively thinner and thinner over a few days before we shaved the rest off. Not an easy thing, especially at an age where looks are becoming so much more important (he turned 13 in July). I now realise that his hair was quite an important topic – almost the first question Theo asked me after the diagnosis – would he lose his hair?. At that point, and in all likelihood, the answer was yes. He was scared and so was I, but as the weeks and months went past, miraculously his hair stayed put. It became thin, and we cut it to mask this, but for anyone who didn’t know him, he had what appeared to be a full head of hair. He looked normal. It was a blessing but also a curse. It meant he was able to walk around without people staring – the cancer was invisible, and that helped him. On the other hand – and it might sound strange to say it, he didn’t look ill and people thought he wasn’t sick. I was regularly asked if the treatment was over as Theo look really well (!). I found that hard – like he was some kind of imposter, and I was fabricating his poor state of health. And then it happened – so many months later. It was really upsetting for me, as I realised that finally, he looked like a cancer patient. My fit and healthy strong boy. Now a bald, chubby shadow of his former self. Still plagued with a strange appetite for salty and super spicy food. I know it’s only temporary, but it hurts to see him that way.

I also have an older daughter who despite the horrendous year has managed to do us proud. It was her GCSE year (Swiss equivalent), and she did exceptionally well – even coming top of her class. Study became her coping mechanism. Throughout all the illness, I think she has found comfort in her books and school work. She’s been through many highs and lows over the last few months, thoroughly shell-shocked by the surreal world that she was also plunged into. Hours of hearing the cries and sickness of her brother through the bedroom wall. Silently wondering why all of this was happening.

I don’t cry often, and especially not around Theo. I think it’s the only way I can cope with everything. He knows how hard it is for me, and we have shared tears on more than one occasion. When people ask, I tell them that in my experience living with Leukaemia is like being catapulted onto a very fast extreme fairground ride. You didn’t ask to get on, and you won’t be let off either. You are thrown all over the place at full speed, with absolutely no warning of which direction you are heading and no visibility. It’s full on. With no preparation. And it goes on for 3 years.

Other days I think that it’s just as well no-one can prepare you for the marathon that lies ahead because quite simply it’s inhuman. The duration is insane, and tiredness cumulated is over and above anything I’ve ever known. The illness alone is like a full-time job, and somehow life also has to continue – the family, house, work etc. Nothing else has stopped. Business as usual, except it just isn’t the same. I remember reading your blog about wandering aimlessly around the supermarket – and I can so clearly relate the feeling of being in a bubble. I find myself thinking the most ridiculous things – wondering if people can tell that I have a son with cancer. Wanting to tell random people to make the most of their children as you never know when something as precious as their health could be taken away. Trying desperately somehow to make sense of the chaos.

I know there are many days when every waking minute is spent thinking about Theo, and it is my only topic of conversation. I don’t like it, but feel unable to behave any differently. The months and months of treatment take such a toll – I am beyond tired and seem to feel almost more fragile now that in the early days. Just recently, a family from Theo’s basketball team saw me and asked after him. They obviously have no idea about Leukaemia nor the treatment, so I told them some bits and bobs, but then suddenly couldn’t contain my emotion, and cried at them – in the middle of the shop. They apologised for upsetting me – and I said it was absolutely not their fault. I just don’t recognise myself or my reactions. Life is like a dazed blur.

And like Felix – throughout all of this, Theo has still managed to keep his sense of humour. Even last week, in the midst of yet another dose of chemo he made a new nurse laugh telling her he gave everyone a mark out of 10 according to their skill administering the medication. He calls himself kiwi-head as the few fine hairs on his head make it look like the fruit. Children have hidden strength that never ceases to amaze me.

Anyway, I had better stop before this gets any longer. I just wanted to thank you for managing to write down in such an accessible way what you are experiencing. It’s really good to know that we are not alone. Theo is not really into Facebook – but I do sometimes talk to him about Felix. I have shown him a couple of photos (they have had the similar puffy steroid face and now bald head), and I tell him that being 1 year further forward in the treatment, that Felix is managing to get back to a much more “normal” life. Theo’s other great passion (apart from basketball) is photography, a hobby passed on to him from my partner, and actually one of the few things that have helped him enormously since January. If you are ever on Instagram, his page is: t.ed.h

I know he would be thrilled to have more followers!

Sorry for taking up so much of your time – I know September is a busy month. I’ve loved your blogs so far 😊

All the best to you and your family – sending big hugs all the way from Switzerland.

Katherine

Radiation through the Eyes of a 9 Year Old Boy ~ A Guest Blog by Rosie Driscoll

Isaiah is aware I have made this blog so I like to give him the choice to be involved as much as he can. I asked him if he would like to do a post which he was unsure about at first but has agreed to do a kind of Q&A about Radiation. Isaiah does not talk about his illness much as he finds it difficult to express all the feelings regarding it. But I’m hoping this blog will give him a platform to express himself a little more. Every answer is his
exact words, he talked and I scribed.

What was Radiation like the first time and were you scared?

It was strange and worrying the doctors kept saying it was just gonna be like a spaceship ride but it was not a spaceship… I thought the machine was going to fall on me, I was scared.

How do you feel about Radiation now?

I still don’t like it who would? But I’m not scared of it anymore.

Can you explain what Radiation is for people who don’t know?

Ummm it’s a treatment used for cancer, you get a mask with tiny holes in it it covers your face and has marks on where they are putting the Radiation. It is then screwed down to this table you lay on then this big machine moves around you giving you Radiation.  It is used to shrink tumours.

How long does it take?

Umm 15/30 minutes? I don’t know really I just know I get really bored.

How many rounds have you had?

30 rounds but in the middle of my 40th round which will be finished next Friday then I will be totally done right?

Yes after next Friday it will be all done for definite this time. What do you get to do when you finish Radiation?

Ring this bell which I had rang when I finished the 30 but then they wanted me to another 10.

How did you feel when you had to do another 10 rounds?

I don’t know I just want it to finish.

What’s a bad thing about Radiation?

The pain, the lasers have burned my neck.

What’s a good thing about Radiation?

That it will shrink my tumours.

What helps you feel less stressed about Radiation?

You and Dad and Noah and praying to God and Jude who are always watching and keeping me safe.

What do you want to say to kids who are also going through Radiation?

Just be brave I know it’s scary but it will be over soon and then you will be okay because it would of helped you beat your illness.

Radiation sometimes don’t work how do you feel about that?

It will work after this extra 10 round… I don’t like this question can we move on.

Yes, of course, Isaiah I’m sorry. Thank you for answering my questions I know some of them were hard. one last thing can you tell everyone why you choose this picture?

It’s a picture of a Radiation machine, it’s not mine but looks a little like mine, you can now see what it looks like.

Thank you Isaiah, anything else you want to say? “No just thanks

No just thanks for reading and goodbye.

Some insightful, hopeful and heartbreaking answers from my little boy, the wisdom he
carries at just 9 years old amazes me. Please this September

Please, this September, help Childhood cancer get the Awareness and the funding it
so desperately needs.

Our children are worth more than 4! 💛

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Childhood Leukaemia – Siblings ~ A Guest Blog by Melody Berthoud

Keeping a routine for Clara (5) was very important when Andrew (3) was diagnosed with Leukaemia. We would sacrifice our own sleep, and time with each other, to ensure Clara was content.

We were grateful she was older than Andrew and at school already, so busy.   My
friends with daughters the same age would have Clara over at a moment’s notice, any time of day, for a meal, fun and friendship. There were times when we overdid this.
There were days when she screamed and shouted at us when we picked her up. She felt the abandonment, but we were doing the best we could and thought we were giving her the best opportunities we could in the circumstances.

It was heartbreaking, as we couldn’t get cross with her when she was getting mad at us. We waited for her to finish her rant and then cuddled her.  I remember once collecting her from a play date and wanting to drive home but she wanted to walk home. I got her in the car, but she wouldn’t put her seat belt on.  She was so cross and crying and shouting. I was exhausted and wanted to get home, but I couldn’t drive without her having her seat belt done up. It was frustrating, but I had to climb into the back with her and calm her down.

Andrew spent 73 nights in hospital during treatment. Often when Andrew was in hospital with Joseph, Clara would sleep in bed with me at home. She needed the reassurance that we aren’t going to disappear in the middle of the night and leave her. She slept with her foot touching me. Clara developed a love of French plaits. She would ask me to braid her hair in the morning. It made me stop multi-tasking and whizzing around. It made me stand still and dedicate time to her for ten minutes. I knew what she was doing, and even though, over time I got better and faster, I still took my time.

At diagnosis, Clara had moved into Year One. Andrew had the same teacher and teaching assistant in reception that Clara had. At parents’ evening the teacher told us that, throughout Year One, Clara would walk up to her in the morning and tell her what she was having for lunch. The teacher would pretend to write it down on her register. It was a small gesture but one that moved us deeply. To know Clara had someone going over and above the pastoral care she needed in school to make her feel safe and secure still brings tears to my eyes.

I remember one Christmas I popped out from hospital for a few hours to see Clara’s nativity. I hadn’t seen her all week, so I felt desperately sad when I saw her as a beautiful angel on the stage. It was heartbreaking because I knew I had to go back to the hospital again and I had missed her so much. I cried silently all the way through.

Afterwards, the teachers let me have a cuddle with her in the medical room, but I was very upset and actually she wanted to go off and play with her friends. Even though I wanted to hold her tight, I let her go. Leaving her to come back to the hospital was one of the hardest moments and I cried all the way back.

During the frequent steroid weeks, Clara would become confused by Andrew’s change in temperament and jealous of the attention he demanded. Clara hated steroid week. Each month we told her it was coming, that this was Andrew’s grumpy week, but there was always a point where we had to remind her to ignore Andrew’s mood and not react to it. She would get sulky and strop about saying “you didn’t tell me” or “I forgot”. She found the injustice hard. Andrew was allowed to watch more TV so I could spend quality time with her; he was allowed to eat different dinners to us but when she tried to refuse food, she wasn’t allowed to. He was excused rudeness or moodiness, unlike her, because ‘it isn’t Andrew, it is the medicine; he cannot help it.’

We told her off for provoking Andrew or reacting to make him cross, but she didn’t understand. She lost her playmate for a week a month, and it always took a few more days for her to get over the hurt and trust him enough to play with him again. By the end of the five days, the clingier Andrew got, the more demanding Clara became. I arranged play-dates for her after school in steroid week, which she enjoyed, but they probably perpetuated the abandonment she felt.

Christmas 2015 Andrew spent in hospital.  On Christmas day, Clara woke at 6:30am, so we jumped into the car and drove straight to the hospital. She held onto her stocking for a whole hour before actually opening it with Andrew – she was AWESOME. She had made a pact with Andrew that they would only take two things out before being together.

If you ask her, she says being separated on Christmas eve is her worst memory on treatment (that and not being able to come with us to 11 Downing Street to meet strictly stars and Rupert Grint!).

However, I think the experiences have made her into a wonderful, kind, independent young lady. She is protective over Andrew and as proud of him as we are of her. 😍
#CCAM #siblings #bloodcancerawarenessmonth #makebloodcancervisible

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You Can’t Polish a Turd ~ A Guest Blog by Zoe Payne (my sister!)

When Felix was diagnosed with ALL in January 2016, it well and truly took the wind from our family’s sails. As “The Smiths”, we’d always considered ourselves lucky – our parents were in good health and still happily married, us three girls had lovely husbands, a gang of kids between us, good jobs, nice houses – everything you could hope for, really. Of course, there were blips along the way, but nothing we couldn’t laugh off afterward, because that was how we dealt with everything – by taking the mick out of each other. This all changed when Felix was diagnosed.

The week after diagnosis, I drove down to Dorset from Somerset to visit Felix and the rest of the Browns. It was a grim journey in many ways involving flooded roads, a speeding ticket, tears and a song on repeat which I can no longer listen to. All I wanted was to see Fe and the rest of the Browns. That afternoon in the children’s ward of Southampton Hospital, something changed. We tried to joke about it all (Dad trying – but failing – to work the jukebox, Felix thrashing me on some driving game on the Xbox) but it wasn’t the same. This wasn’t funny. You can’t polish a turd.

Fast forward over the next few months and things were going from bad to worse – Felix was changing beyond recognition – the bloatedness, the hair loss, the anger, the weight loss. I had my own family to look after in Somerset and a life that had to carry on as normal as possible, but that came with its own issues – I was torn between being desperate to see Felix and being terrified that I would pass on some unseen lurgy (as a teacher and mum to two young boys – there was a relentless stream of snot in the house). The guilt was unbearable.

Things are better now. We are all less shell-shocked. Felix is looking the picture of health and although he still has a long time of treatment left, things are looking really positive. I can talk about Felix at home now without my eldest son looking worried or asking if his cousin will die (Felix has always been his idol – it’s mainly a hair/football thing).

I know this is a real cliché, but when something like this happens to someone close to you, you realise what is actually important in life and what isn’t. We could really do with a new bathroom suite, our boiler is prehistoric and the 1970s pine kitchen cabinets should really go. But we’ve decided we’d rather spend our money on memories rather than stuff. Dad has painted the kitchen cabinets and they look fab. I’ve decided I quite like the avocado corner bath after all. I’m praying for a mild winter.

In December, us Smiths will go on our annual pilgrimage to Torquay. We already know exactly what we’ll do – there’ll be the Christmas Quiz, a trip to Cockington (photo taken by the rude part of the sign), a scoot along the seafront, lots of swimming, the kids will all go to Uncle Dyl for some money for the arcades (he’s the generous one) and Karl will spend hours walking the littlest member of Team Smith around in her buggy, willing her to go to sleep (she’s the loud one). Mum and Ker will get their bingo fix, Talia will get her Primark hit and there will be laughter. Lots of loud, lovely laughter.
#teamsmith

Stop Trying to Organise People!!! ~ A Guest Blog by Sarah Burbidge

We were asleep and Wayne answered his phone with a “mate are you OK!” I shot up pillows stacked and waited for him to return. I think we tried to discuss it, a far too early wake up loomed, so we pretended to go to sleep. Either that night or a few days later (as can’t remember how much we knew) I did what you should never do with illness and headed over to Google. Even though I spelled it “acute lymblostick” it came up with a headline from the NHS website which read: “Acute lymphoblastic leukaemia is a type of cancer that affects the white blood cells. It progresses rapidly and aggressively and requires immediate treatment.” The search didn’t give me suggestions, which worried me (I work in web search stuff) as I thought this must be quiet rare.

Felix is Wayne’s godson who he admires deeply, I am mindful that I have to be cautious about saying what I read on Google, so I would have said something like “I think this is really bad”. I talked about what we could do to support and said about offering Wayne’s services (as he’s a great cook) to take them dinners. Wayne was a bit offish and said: “if they want help they will ask”. He’s been best mates with Dylan since school and his friendship with The Browns is strong. His call is to “let them digest it and they know where we are if they need us”. I have a habit of wanting to organise people and came to realise that this was not the best time.

We popped round after chemo had begun and I recall Kerry saying to Wayne after Felix left the room, “he’s different isn’t he?” “can you see a change?”. Not many words were said and more of a look but the basic answer was “yes”. Kerry did an agreeing nod with a loose bottom lip as if she was looking for some clarity that some big changes were happening, but didn’t quite want to hear it. We wanted to do something extra but didn’t know what!! Wayne went all guns blazing setting up a big charity challenge. I most probably went to Pinterest to look for inspiring quotes, but there was no way a quote would help here. I am powerless in my knowledge, I can’t comprehend the emotion The Browns are feeling.

In summary, I have no words!

We went to a children’s cancer charity event to “Light up Bournemouth Pier Gold” organised by a mum who very sadly lost her child ‘Isabel Baker’ to Leukaemia the previous year, just days after Isabel’s first birthday. Following her death, the mum (Vicky Turner) set up a charity the ‘Isabel Baker Foundation’ which supports bereaved parents.

The organisers invited us to buy a tea light or two and stand on the beach, we were meant to be in shape of a ribbon, standing against the rope. People were huddled together and my inner voice was saying “oh I could organise this better” – actually I have a habit of letting my inner voice out (which I did) and Wayne said, “stop trying to organise people”. I went silent as it hit me harder than ‘Miley Cyrus on a wrecking ball’ what was actually happening here. I started to actually consider and comprehend what a lot of the people who were there on Bournemouth beach that evening were going through. Holy crap, major reality check!!! They don’t care about organising themselves into a perfect ribbon shape this is about being together and standing united with the families who have lost their children to cancer and those who are currently battling the disease. It’s about raising awareness that this is common and it is likely to impact a family you know. Oh my god I feel like a total un-compassionate cow that I had mentioned about rope organisation! I keep my inner voice in. My thoughts and tears on the beach now say: “I am here and I will be silent and the families I stand beside, I hope that me being here gives you strength and courage to continue to fight. I support you “.

Woah that was emotional writing that!!

So very grateful that Felix and Kerry started to blog as it helps me understand more about the physical and emotional challenges that the whole family have faced are facing. I feel that I can give much more support with social media than I could face to face, a like and a thumbs up emoji is my way of letting you and others know that I support you. I especially love the blogs about ‘where you were and what you have become’. Your all pretty awesome really, who knew!! Oh wait Wayne did! Love you all, Team Brown Forever x x x x x x

Sarah

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It Takes A Man to Feel ~ A Guest Blog by Mr Driscoll

Mr Driscoll here, I’m very a private person whom does not like sharing my feelings or thoughts in such a public way because as men it is drilled into us that we have to do everything in our power to be stronger and to keep away from anything that may put ourselves in a vulnerable situation but having your child diagnosed with a serious illness changes that.

My dad lost his dad to cancer when he was about Isaiah’s age. Throughout his dad’s illness he was always told to “man up”  and “men don’t cry” so of course he too drilled this into me when I told him about Isaiah’s diagnosis he told me I had to “man up for his sake”.  What does “man up” even mean? Us men are treated at times as a whole connected species who all act the same but that is the furthest from the truth. So how can we “man up” when we are all different? Whom do we compare us to?

I remember when my son was diagnosed it felt like I had the wind knocked out of me something I have not felt since I lost my first son 3 years ago. I remember feeling like I had to “man up” and be strong so I asked questions when my wife was unable to form sentences, I booked upcoming appointments and cradled my wife while she cried, I did all the things “men are expected to do”.

Isaiah has spent a few days in hospital recently due to a case of pneumonia. He’s home now and improving but there was a time where we thought his cancer had spread to his lung so while waiting for his PET scan results I looked at my obviously scared son and said something I regret daily.  “You gotta be strong like a man” he looked at me blankly, nodded and formed his best fake smile.   At the time I didn’t know it was fake I was just teaching my son the expectations of a man – I didn’t know how much damage it could do…

It was Monday night that the toll of seeing my son in such physical and mental pain the past week clearly became too much and I cracked.  I went to the outhouse… I  cried, I shouted, I chucked and broke things, I cursed at God and punched walls. My wife found me crumpled on the floor I felt sick to my stomach as she was seeing me at my most vulnerable.  I was not a man, I was a sorry excuse for one. I refused to look at her, she was silent while she cleaned my tears and inspected my scraped knuckles she then grabbed my face to make me look at her and said: “You don’t need to man up, men cry, men are allowed to feel weak it’s okay”.  Nothing else was said because that’s all I needed to hear.

As I laid in bed that night it dawned on me how much those words  “man up” had affected mine and my dad’s mental health.  How it had almost destroyed us on many occasions so I made the choice then that I did not want the same for my son.  I wanted to break the cycle.  So that morning I went to my son hugged him for the longest time and actually cried in front of him while spewing mutterings of sorries.  He was so shocked and said, “Dad men don’t cry?”.  I turned and said “Yes they do and it’s okay.  I don’t ever want you to man up if you want to cry you cry, if you feel scared be scared we can cry and be scared together”.  I knew that what I said that day had meant more to him than any “I love you”.

Childhood cancer is something I don’t wish upon anyone but it has taught me so much.  It has let me embrace my vulnerability which has made me become a better father to my son at a time where he needs me the most. So for that Epithelioid sarcoma, thank you.

For any other dad  going through this just remember it’s okay to feel, you don’t need to man up..not now not ever!!

Thank you for reading

Mr Driscoll🎗

It Takes a Man to Feel

Words and Feelings by Auntie Jodie ~ A Guest Blog by Jodie Bright

It was a normal day in our household, it was around 6pm and the phone rang.  To be honest, I was pretty annoyed as anyone with young children would know this is the ‘play me up hour’ with the screams of tiredness, wanting to put on their nightclothes but not physically having the strength to get them! The witching hour. My husband answered the phone and passed it on. It was my sister Zoe, I could tell her voice wasn’t right, she quickly asked how I was then continued with the words ‘they think Felix has leukaemia’ followed by, ‘don’t ring Mum and Dad as they are just taking it in’.

I was numb, then a bit, who said? Why? How’s Kerry? Where is Kerry? Where is Fe? Are they ok? Tears starting to stream down my face, a million questions going round in my head, but I couldn’t get the words out to ask them. I hung up the phone, gathering myself, holding it in as I didn’t want my children seeing me upset, I didn’t want to talk about it as talking made it seem real. With the children in bed, I broke down.  Searching the internet trying to get some understanding of what the next few years would entail. Messaging family, as talking on the phone, was too painful. The next few days passed in a blur. Kerry just wanted humour, she didn’t want sadness, so this is how we all coped in the first few months.  Always looking on the bright side, no dwelling on why Fe, but more let’s beat this together. I sat the children down to explain that Felix was poorly and that he might look different when they see him. That he may lose his hair but it didn’t phase them at all.  We could learn so much from children.  When Fe lost his hair, or his face was bloated from the steroids, my children didn’t react any differently to him. They carried on as they did before his diagnosis. When Fe’s legs were weak and he couldn’t kick the football, they didn’t ask why?

Hearing the traumatic treatments Fe had been having I felt weak. Weak that there was nothing physical I could help with.  Living 2 hours away it’s not like I could pop in to see them all. I felt helpless. Just waiting on messenger for the next update, anxiously waiting to see if Fe’s bloods were good, hoping the chemo was working.

During this time my daughters best friend died suddenly at the tender age of 5.  This was my realisation that children can die which sent shockwaves through my body like something I have never felt before. This is when I decided maybe some pen pals might help.  The kids would send pictures and gifts to Felix and to his sister and brother but this still wasn’t enough so I started to research about famous people who have overcome leukaemia. Someone who Fe would look up to that would give him the inspiration to beat this.

This is when I started to email Yann Kermorgant’s agent, he had leukaemia when he was younger and he had played for Fe’s favourite team Bournemouth.  I talked about Felix and his passion for football, and before I knew it they were in contact with Fe and arranged for Fe to meet him at Reading Football Club. Over the past 18 months, Yann has been a rock to Felix and The Brown Family.  They will all be friends for life, and to be honest, Yann is probably the only person who Fe can relate to regarding the treatment he is undertaking at the moment. He has been a tower of strength to them all and a truly inspirational person.

I am so proud of how Team Brown has dealt with this situation, it has opened my eyes into a world that was unknown to me before.  Kerry has lots of doctors knowledge now too and the children all seem older than their years.  There is still a road of treatment ahead of them, but we will head down it together. Through laughter, humour and the ability to not let this cancer win. I am proud to say I am Felix’s Auntie, the non-selfish manner he has approached his cancer, also helping other youngsters deal with their diagnosis and how he always makes my girls and me smile, makes him an unbelievable young man.