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

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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. 

Finding a son and a brother … the lost babies of the 1960s and 70s

This is a repost to celebrate my brother’s birthday today.  I know it is not #CCAM related but is part of our family’s history.  When I posted this last year, it touched two families who have gone on to find where their babies were resting, having lost them decades before.  I hope this post reaches out to touch more families who are waiting.

Happy birthday Darren.  We found you just before Felix was diagnosed.  We will all visit you one day soon – you are never far from our thoughts xxx

Back in the 1970s, when a baby was born ‘sleeping’ or died shortly after birth, their existence was far from recognised let alone celebrated.  There was no dignity in death for these young souls.  I have grown up knowing that I had an older brother who died a few weeks after he was born.  I have also grown up knowing that my Mum and dad had no idea what happened to him after he died.  All they had was a birth certificate and death certificate.  They didn’t have any photos of him, no chance to take handprints or footprints, there was no funeral, there was no memorial.

Mum would often talk about ‘her little boy’ particularly around his birthday in September, but quite often out of the blue.   He was born in 1971, after a long and difficult labour, with spina bifida and encephalitis.  Mum and Dad had no idea.  Back then there was no screening available and very little monitoring in comparison to the care received today.  Immediately after delivery, Darren was whisked away to a different hospital 25 miles away. My dad went with him in the ambulance.  That was the only and last time they saw him.

That was 46 years ago now but it is still a huge part of our family history.  My parents went on to have me in 1972, then my two sisters and grandchildren have followed yet Darren has never been forgotten.   He was a son, a brother, an uncle but there was never any positive way to remember him because we did not know where he was.  There was a void in our lives.  This chasm of heartache rippled through our lives. Mum would often talk about trying to find out what happened to him and where he was but didn’t know where to start both practically and emotionally.  Dad kept his thoughts and feelings to himself.

Then came the turning point in our lives. It was coming up to Darren’s birthday last year when we were watching a soap with a story line in it about still birth.  Mum talked again about trying to find him.  Where was he buried?  Was he buried or was he cremated?  She talked about how right it is nowadays that babies who do not live long are given respect and dignity in death and how the parents are supported in a way that she wished she had been all those years ago. This lack of recognition and respect for Darren continued to fill her with anger and sadness.  As I listened and watched her emotions, still as fierce as they must have been all those years ago, I decided that if she did not have the strength to find her baby then we would have to do it for her.

Only a week or so after this conversation I had found charity whose mission was to reunite parents with their babies who had had brief life back in the 1960s and 1970s.  The situation was not unique to us, but many families who had lost babies as it was common practice in those days.  There were families worldwide who had no idea what had happened to their child.  I contacted the charity and gave them the relevant details of his birth and all that I knew about his death.  On 25th September 2015, they phoned me with the information that my parents had been craving for so many years.

Mum and Dad now know that Darren was buried at Avonview Cemetery in Bristol on 26th October 1971, 3 weeks after he had died.  He was buried with another baby in an unmarked grave in a corner of the cemetery.  Sadly, you would not have known that anyone was buried there, but since they have found him they have been able to plant a tree to remember him and lay a plaque celebrating his short but important life.  This year would’ve been his 46th birthday, this year they will have somewhere to go to remember him.

For us, our family is now complete. He is no longer ‘Mum’s little boy’ he is our brother, their son and my children’s uncle.  He now has the dignity and respect that should’ve been bestowed on him all those years ago.

It is hoped that by sharing our story it may help others find their lost babies.

This is for you big brother xxx

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The cancerous Elephant in the Room vs Motorbikes, Ale and Video Games ~ A Guest Blog by Simon Bower.

My wife Karen, is one of those rare people who can walk into a party full of strangers and leave with new friends and social plans for the next few weeks. I can only marvel at her ease with strangers and the manner with which she effortlessly engages on a social and professional level with all. I, on the other hand, find this level of social intercourse for more of a challenge and making friends and acquaintances more of a slow burn.

Meeting the Brown family for the first time I assumed would follow a similar path, with me making my best attempts to cover my social awkwardness until I discovered that Dylan and I had something in common. This common thread was something that allowed us to communicate in a different language and I soon discovered that this language was something very dear to the both of us and one that we spoke with the same dialect. I refer to the language used by those that are professional on the outside while rebel on the inside, the language of emotion and freedom, of wide open spaces, the language of oil and dirt, the language that allows two strangers to unite over a common interest that revolves around an inexhaustible subject, the language of the motorcycle.

To those that know me and to those that are now rolling their eyes, I do promise that the remainder of this soliloquy will not be about motorcycles, although there is a risk that the odd motorcycle related nuance may permeate.

Dylan and I soon discovered that we had more in common, we both liked video games and real ale and armed with these three subjects it seems obvious that we were destined to become friends and conversation between us unlikely to be lacking. It was not more than a handful of months later and shortly after a reasonably raucous NYE, at which Dylan demonstrated his penchant for Patrick Swayze, that his son and middle child was diagnosed with ALL.

ALL doesn’t really mean anything to me, or at least it didn’t at the time, but basically its leukaemia, I still can’t remember what ALL stands for and a google search and subsequent definition would undermine my honesty. I know that it is cancer (I will not give cancer a capital c as it doesn’t deserve on) and I know that it nasty. I remember a tearful Mrs Bower telling me that ALL is the most common of the childhood leukaemia, which is a good thing. I found it quite difficult to see anything good about it, and while I refrain from using expletives I am confident that I could find a choice selection that could accurately describe my feelings towards this news.

I write from here on, intentionally selfishly about myself, how I felt, the effect it had on me and how it affected my relationship with the family hitherto known as Brown now as Team Brown and my friend Dylan. This will prove rather a challenge from one whom, according to my wife, suffers from an emotional deficit and lacks the ability to express feeling, but I will give it a go.

I am a methodical person, logical and I apply a somewhat Spock like objective perspective to decision-making. I am not prone to emotional responses, is it right to apply this Vulcan like process to such an emotionally evocative situation? Not necessarily, but that is what I did.

My thought process as follows. I am not medically trained and while I do consider that I would be quite competent with the administration of antibiotics, and range of creams and potions childhood cancer is a little beyond my level of unqualified expertise. I therefore quickly concluded that medical opinion and suggestion was best left to the experts. Team Brown have a great group of friends and family all very capable of providing support to the whole family and I am pleased to be able to consider that my family were part of this network. I just needed to define my role, in terms of what is required and what I would be able to offer, considering my personal qualities and emotional deficit.

I decided that the best I could offer would be to listen, offer no opinion just keep it business as usual, the norm or at least as close to normal as possible. While no psychologist, I am of the opinion that one cannot live and breathe a problem on a full-time basis and that time off is necessary to avoid the risk of the issue defining you. I can imagine, and I can only imagine, that having a child with cancer can become all-consuming and impossible to switch off from and so I decided that where and when possible that my relationship with Team Brown and my friend Dylan would continue to be as normal and that cancer would not dominate.

Handshakes became hugs and opportunity for coffee or beers became less frequent during treatments times but we still managed to meet up. While the cancerous elephant in the room was always present so was the friendship with the same talk about beer and motorcycles and our newly discovered shared frustration of spousal dishwasher stacking. The elephant was allotted time as and when required, but was not allowed to take over. I hope this was enough for at least a few moments of mental respite. On a more selfish note I have got to know a few of Dylan’s other friends who I now consider my own. They are all good chaps despite not riding motorcycles, and I know that they have all been there for Team Brown. I make no specific or further reference to them as this is not about them, but you know who you are.

I have never considered how I felt about the crisis that Team Brown have faced and continue to face. I have children myself, and so far, I am fortunate enough for them all to be healthy. I suppose what I think in this moment of contemplation is that the experience serves to reinforce the fragility of life and that what we take for granted can easily be upset. It reminds that irrespective of how challenging and difficult my children can be on occasion that these events would pale into insignificance should one of them become so seriously unwell. It reminds me that what I may consider as important today, could be irrelevant tomorrow and that as a parent having children the experience can be as wonderful as it can be devastating.

cancer (I have had to adjust my MS Word settings to start a sentence without a capital) will at some point choose to touch your life in one shape or another. There is no instruction manual to help you, you cannot prepare for it, you cannot plan for it and you cannot spend your life wondering when and where it may happen, for that way madness lies. What you can do is deal with it, pull up your socks, put on a brave face and even a smile if you can and meet it head on, and hit it hard. That is certainly the approach that I have seen demonstrated by Team Brown, the family that I am privileged to call friends. Those that know Team Brown or keep in touch via the interweb will be aware of their journey and I can only hope that the small part that my family and I have played has made their journey a little more bearable.

Dylan and I are still friends; I don’t think that anything has changed. We still meet up drink beer or coffee and talk motorcycles, although we have a new subject of conversation now, Adventure Motorcycling. It’s my birthday today and he bought me a T-shirt. It’s a size too big, so I’ll change it on my home, he doesn’t need to know that I am a size slimmer than he.

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Returning to Work When Your Child Has Cancer ~ A Guest Blog by Sarah Bennett – Day

We are nine months into our journey with acute lymphoblastic leukaemia. So far, our 3-year old son Ru, has done really well and we have thankfully had a relatively smooth path to date. Whilst the chemotherapy and steroids have some horrible physical side effects, it is the emotional impact of having leukaemia that has hit us all the hardest. For Ru, who was once a confident social boy, intense treatment regimes and the unpredictability of being held down repeatedly for procedures to be undertaken has resulted in him becoming understandably, insecure and anxious. He needs to be next to someone 24 hours a day.

During the early days of treatment I spent a lot of time wondering if I had missed Ru’s symptoms of illness. As well as being a mother to four other children, I am a midwife and work clinically and as a university lecturer. Had I made my life too busy or spent too much time building my career to notice how unwell my son was? My clinical health knowledge didn’t assist me at all in the early days. How was Ru still able to run virtually everywhere and attend nursery with only a third of the haemoglobin his body needed and virtually no platelets at all? Questions such as these set the seeds of doubt in myself regarding my capabilities as both mother and midwife. As such I made it my mission to ensure I would not miss anything of significance with Ru again.

So since diagnosis, Ru and I have virtually never been apart. To start with, both him and I found this comforting. However as the weeks went on and we spent the days avoiding public spaces to try to reduce chances of infection, being together non-stop has become increasingly challenging. Whilst I have tried to play with toy cars for days on end, I have found I am not as creative with play as I’d like to be and do not engage the way a three-year old desires. I have battled with craving to go to the bathroom by myself to get some space and then guilt when I acknowledge that I’ve been reading Facebook whilst simultaneously trying to play with Lightening McQueen. There are constant emotional dichotomies when I recognize that I am so very grateful Ru is still alive to be able to play with, yet at times, I am stifled and saddened at the loss of Ru’s normal childhood and my old life and identity beyond a cancer mother.

This awareness alongside a reduction in the intensity of treatment plans has seen Ru return to pre-school nursery on days when he is feeling well. We have seen him flourish since returning to play with children his own age and stimulated with creative play far beyond my capabilities. I have had to accept that I cannot make his treatment side effects better through just being next to his side everyday. That he would have had leukaemia whether I was a working mum or not, and that me being at home full-time will sadly, not be enough to prevent a future relapse. Whilst these sound like obvious statements, having a child with cancer can be so emotionally consuming that it makes you question every thought process you have. How will others view the fact that I have chosen to put my three-year old with cancer into a pre-school nursery? More importantly how much guilt will I feel if, in the future, Ru relapses and I have to face the fact that I choose not to spend every waking minute with him before he starts school this time next year.

These are questions I cannot answer. Whilst our pace of life has certainly slowed down and we have a greater awareness for each other, life and the simple everyday things, I am seeing that both Ru and I are now craving and ready for some of our old life. As such I am due to return to part-time work shortly.

I’m certainly nervous about some conversations I know will be held by kind enquiring colleagues, as cancer etiquette is incredibly challenging in itself. I am sadly still along-way off from thinking that all will be well in the future, or feeling completely at ease that I am choosing to be at work rather than with my son, even though I can clearly see both him and I need this. Simple questions such as “How are you / Ru?” are therefore not easy to answer honestly and have the potential to destabilize. For now, a general “today is ok” is likely to be a typical response. So whilst Ru’s needs and health will always come first, I am hopeful that a return to work will provide me with some welcome relief from non-stop thinking about cancer and will enable me to being less critical of every thought process and activity that I undertake with Ru regarding whether I have provided him with a good enough life if his life is suddenly cut short? I have to accept I cannot take on this responsibility myself and that Ru’s life is enriched with normal childhood activities and knowledge that he is surrounded with an army of love both in and beyond his home environment.