My Child Has Cancer: Things You Could Do And Say By Those Who Know

This is written from the hearts of over 50 parents of children with cancer. 

These words are borne from heartache, love and experience.

What you do and say makes this thing a whole lot better for me.  You…


  • Keep in regular contact and adopt a ‘no fuss approach’. Thank you.
  • Talk to me about my child’s cancer.  I need to talk about it.  It’s a huge part of our life now.  Thank you.
  • Pick up the siblings, drop off groceries or prepare a meal.  You take out our bins on bin day, cut the grass, wash the car.  Thank you.
  • Ask if you could go to my house before I come home from the hospital to give it a clean.  We don’t really need this but it is so specific and I can see you want to do something practical.  You wash my bed linen instead.  Thank you.
  • Play with my child so that I can pop out for some fresh air or go for a shower.  Thank you.
  • Are there for ME.  You love my child but you are the only one who makes me feel normal!  You are also the first person to check in if he’s not doing OK.  Thank you.
  • Overwhelm me with an outpouring of love, understanding and empathy.  Thank you.
  • Set up a meal train for our kid’s lunches.  It is so nice to know that so many people want to help. I even had a mum say that her heart was filled with love when she made those lunches. Thank you.
  • Arrange a meal train so that every Monday there is a lovely home cooked meal for us.  If you had offered I would’ve said no.  Thank you.
  • Prepare food and meals for us which is a huge stress relief especially with lots of hospital stays! You cut our grass if summertime.  Thank you.
  • Phone to check in and to see if we need anything from the store.  Thank you.
  • Send cards and little gifts and include all the siblings as you know they tend to get pushed aside when a brother or sister has cancer.  Thank you.
  • Pay for an ironing lady to do two black bags of ironing. You just gave me her number and said just call her when you’re ready.  Thank you.
  • Gave me a couple of Costa gift cards…for coffee at the hospital, or if I just wanted to escape for a quiet cuppa etc.  Thank you.
  • Sent my child an iTunes gift card to download games or films etc.  Thank you.
  • Made up a parcel of PJs and toiletries both for me & my child.  Thank you.

Please don’t…

  • Do nothing and ignore me “because I didn’t know what to say.”  I would rather people say the wrong thing than saying nothing at all.
  • Excuse not texting because you think ‘we have a lot on.’
  • Ignore my other children.  It is lovely that you ask how my child with cancer is and how I am but please also think about my other children and my partner.
  • Say, “we have been following your child’s daily plight on Facebook”.  We don’t journal extensively on FB so I know that it’s just a platitude.
  • Say “let us know the next time your child is in the hospital as we would like to visit.”  And then not turn up.
  • Say, “Well I didn’t want to bother you because you seem like you have loads on …”
  • Tell me stories about grandparents, uncles, acquaintances you know who had cancer which is totally unrelated and who aren’t children.
  • Say, “don’t worry it will all be fine, he will be fine, he is a fighter.”  I know you say it because you don’t know what else to say but no one can see the future where cancer is concerned.

What surprised me …

  • I thought were my closest friend but you haven’t been there … not even a text.  People who I didn’t really know have been amazing.
  • A journey like this has shown me who my real friends are and it has also introduced me to new friends.
  • My friends of 20 years never once helped me or popped in to make sure I was OK.  I found those who I’ve known longer didn’t want to be there.
  • Someone very close to me never asked how my child was doing but a new friend from school came to the hospital and brought a goody bag of little things for my child and her sibling which filled them with delight.  That meant a whole lot.
  • You get to see the true colours of friends and family.
  • The friends and family we thought would be there for us have been nowhere to be seen. No phone calls or texts.
  • It’s been a very interesting learning experience of people’s behaviour. As others have said, I have been amazed at the kindness and generosity of people – some who were friends and some who we hardly knew. I have also felt a little disappointed/surprised by others, but luckily that’s in the minority.

In summary, here are a few wishes …

  • I wish friends and family would just ‘do’ rather than wait to be asked.  We have so much to think about, we don’t really know what we want.  Plus (for us as a family) we don’t find asking for help easy as it makes us feel like we’re failing in some way.  Simple things like cooking a meal, offering to babysit, hospital visits, listening to us rant, cards through the post, actually getting in contact rather than a ‘we are always thinking of you’.
  • Please be more proactive and specific, not vague.  Some friends said, “hope to see you soon” whereas others said, “when can I visit? Tues, Wed or Fri are good for me.”  Guess which one I text back first and arranged to see?
  • If you are offering to help, please don’t be too polite.  I haven’t got the time or energy to encourage people to come or worry if they’ve been pushed out of line in the pecking order of visitors.
  • Please understand that when we say we are OK we aren’t.  Little things make all the difference.  Normal life goes out the window.  At the beginning, I was so busy concentrating on what was happening I forgot to eat.
  • When you visit me in the hospital, turn up with food!  One visitor brought me a big box of mince pies.  If I’d popped into the shop myself I’d probably not have chosen them because making decisions about what to eat when your poorly child can’t eat anything without vomiting is difficult.  Those mince pies were lovely.
  • Some friends/coworkers are afraid to bug me because I must be so busy.  In actuality, during treatment, there is lots of waiting and downtime that are better filled with connecting with people than more worrying. Stay connected with me!
  • When our child was diagnosed, my head was spinning with thousands of things that needed to be done.  Ask me for a list!
  • Don’t forget the siblings.
  • I really wish some people would have texted more often just to see how we were or to chat for a little about anything. It was pretty lonely being in there with little interaction with the outside world.
  • I’m not gonna ask for help, so offer to do something specific, on a specific day. Then I can just say yes please or no thanks.
  • Keep asking how my child and family are doing. Being over a year into treatment my child *looks* “normal” but if anything I am finally coming out of the fog of just getting by during that first year of treatment and still need support. I am eternally grateful for the people who always check in on me regularly because sometimes, they check on that one day when I really needed to know I’m not alone.
  • Invite me to normal social events.
  • So what do we need…company.  Either in the ward or drop by the house when we are low in energy.  We crave actual conversation & laughter but also for you to listen and develop an actual understanding of this world.
  • The thing I would’ve loved most is a few homemade dishes sent up in Tupperware to the hospital as I got completely fed up with the limited choices and fast food.
  • DO anything, something, whenever… send a note (send one a month), let us know we are on your mind even if we don’t know you (friend of a friend sent the nicest card), keep sending notes months/years past diagnosis, acknowledge that THIS SUCKS every part of it sucks, every part. I have been so blessed and let’s not kid ourselves money has helped the most with copays, food, and gas etc. but I have been most touched by the personal notes and stories of encouragement that seem to appear at just the right time.


Thank you to everyone who has contributed to this blog so openly and honestly.

Many of us are on a long, bumpy road and we would like to thank everyone who has and continues to support and love us.  

We couldn’t do it without you!



The Day We Met Dr H.

Two years ago today we met Dr H.. for the first time.  Whilst he’s a very nice bloke indeed, I really wish we hadn’t.  That day will be etched in our life story forever.  It changed the essence of our hopes and the direction of our dreams.

Thursday 28th January 2016

It’s about 5pm, a hospital room in the Children’s Assessment Unit of Poole Hospital.  Dr H. walks in and introduces himself.  We had no idea at the time how important this person would become in our lives.  Without any delay, he said something along the lines of, “it would appear that Felix has leukaemia.”  He briefly explained how they had to come to this conclusion, what it meant and the treatment plan.  Blood was mentioned, enlarged liver and bruises – a conversation using a language we had never heard of before.  We were then given space and time just the three of us,  Dylan, Felix and I time to process this devastating news.  I think we are still processing it now.

From this moment on we were catapulted into the world of Children’s Oncology.  We were led to Dr H’s consulting room where we were given books and leaflets about Leukaemia:  a book for kids about leukaemia, one for grandparents, information for school even one on leukaemia and pets.  We were then shown what would soon feel like our second home, Dr H’s consultancy room.  Felix was then, with the utmost sensitivity, invited to have a look at some information about Piam Brown Ward.  He was encouraged to look at images of children bloated through steroids and bald from chemotherapy – a simple gesture to help prepare him for what was about to come.

Whilst Dr H and Felix started to get to know each other, the start of a relationship which would prove invaluable during those really tough times, Dyl and I were offered the privacy of his consultancy room to make the most difficult phone calls of our lives.  The phone call that would shatter the lives of those we loved the most.  Through tears, we tried to explain the diagnosis, the plan and what would happen over the next few weeks.  We placed the phone down, tried to compose ourselves and went back out and embraced our beautiful son.



Felix was admitted to the ward and we started to get used to an environment that would soon become so familiar to us.  Dylan left to collect our other children with the unfathomable task of trying to explain to our then 7 and 11-year-old why he was so late.  At this point we knew one thing, we had to be together.  So Dylan returned with Tals and Rufus so that we could all seek some sort of comfort from each other.  We laughed and we cried.  We became #TeamBrown.


Diagnosis Day
28th January 2016                                                                                         Poole Hospital


That night, as Felix slept, I laid wide awake on the small and cramped parent’s bed and cried and cried and cried.  I had no idea how I was going to get through the night, let alone the next day or the 3 years and 3 months of treatment.

Two years on and we are still laughing and crying but now with hope and aspiration.  There have been some really tough times, times when I wondered if we had the emotional and physical capacity to cope with all that Felix faced.  Throughout all of it, Dr H has been a constant for us.  He has been our expert, our confidant and our guiding light.

So, to mark the 2 year anniversary, we will be spending tonight watching a local band raising money for Poole Children’s Unit.  This is a special band though.  It is a band made up of doctors and nurses, most of whom have treated Felix at one point or another and our very own Dr H!  For once, we will be there to support Dr H in his hour of need as he has always been there for us.

So here’s to the next 12 months until the next anniversary and To Martin and the Mavericks – Let’s rock and roll our way through this thing!


28th January 2018                                                                                       Home



Martin and the Maverick

My Blog’s Honest Truth

My blog has always been a means through which I have tried to make sense of this crazy world we live in.  Whether it is exploring my feelings and experiences of having a child with cancer or a personal view about a current issue or debate.  Whatever it is, I have always blogged when I wanted to about what I want to.

Since hanging out in the virtual blogging world I have become more and more exposed to the commercial world of blogging and quite frankly, it’s just not for me.  There is a professional world of bloggers who, quite simply, have a completely different perspective on the purpose of blogging.  There is the talk of SEO, self-hosting, analytics and brand collaborations which are all far beyond my realm of understanding.  This is not a criticism by any means but by becoming part of this community, I have felt pressured to adopt a more committed and strategic approach to my blog.

This was exacerbated by becoming a #UKBA18 finalist for the second year running.  Once the finalists were announced, I received a number recommendations from a variety of bloggers about what I needed to do to meet the judges’ criteria to win.  From the content of my next few blogs to my website design and the frequency of my blogs.  I listen intently and started to draw up an action plan designed to give me the best chance of winning.

Then I stopped.

I stopped because I realised I wasn’t being true to myself, my blog and my readers.  The reason I started the blog was for me and then I realised that actually, I could help raise awareness of childhood cancer and be a supportive platform for families both nationally and internationally.  Yes, I would love to win the Health and Social Care category I am a finalist in but not as part of a strategy.  I want to win it to help raise the profile of childhood cancer and the families it affects.  I want to win it to be able to stand there and stand there tall and proud in honour of the beautiful children who have endured the pain and suffering that should not be bestowed on a child.  I want to stand there for the siblings who experience living with the harsh reality of childhood cancer on a daily basis.  I want to stand there in honour of the families who lives have changed forever when they heard the words, ‘Your child has cancer’.

I want to win it because it is an honest and frank account of life, family and education. From a parenting and educational perspective, it explores the finer details of daily life with the added dimension of having a child with cancer.

This is my Blog’s Honest Truth and I nearly lost it.


My 2017 in 100 Words

So, 2017 was all about being human, simplicity and leukaemia … still.  The leukaemia is always there but I consciously try not to give it the attention it craves.  Instead, I want to celebrate what it means to be human and the simplicity of this wonder.  The love between us, the kind gestures, the thoughtful words.  The simple “how are you?”, the smile of understanding or the time to chat and mull things over that are troubling; all of this void of judgement or criticism. Thank you to my trusted family, my loyal friends and new acquaintances for simply being human in 2017.

Now it’s your turn – sum up your 2017 in 100 words.  Who will be first?

#anyonecanblog #100words #2017 #yourturn #beinghuman


Why I’m Wishing you a Lovely, Imperfect Christmas

So this year, we are very much looking forward to a lovely imperfect Christmas.  We won’t be sharing out Christmas day with aunts, uncles, grandparents, nieces and nephews as is depicted on those oh so wonderful Christmas adverts.  We are not spending endless evenings with friends adorned with stylish winter wear drinking the finest mulled wine whilst regaling in laughter.  We will not be using words like stunning, magical or amazing to describe our festive season.

It’s not that I don’t like Christmas, I think it’s a lovely time of year.  What I don’t like is the pressure and stress the idea of a perfect Christmas causes individuals and families.  Whilst I would love to have all of my family around the table on Christmas Day I can’t.  It’s no one’s fault at all; time, distance and family dynamics make it impossible.  We can’t go out and enjoy endless evenings of indulgence because we simply can’t afford it, don’t have a babysitter and we are quite frankly shattered by 7 pm.  When superlatives are used it denotes that the experience or things are of the highest quality or degree which implies all else falls short.

Instead, this year we will be having a lovely and imperfect Christmas.  Just like a lovely weekend, a lovely night in or a lovely walk.  I look forward to experiencing the imperfections; it’s the imperfections that we remember and talk about in years to come.  We have had quite enough stress and anxiety of late; there is no way I’m going to let the notion of perfection cause anymore.

So, to those of you who are exhausted by work, shopping and preparations consider this instead.  Christmas will be just lovely as other aspects of your life are.  Lovely like the meal you had the other evening, lovely as your child’s smile this morning and as lovely as the conversation you had with a friend the other day. For those who will find this Christmas very different to those in years gone, either through illness, separation or loss we send you our love and strength and I hope you find comfort in something lovely over the festive season.

I hope you all find the lovely over Christmas and are able to smile through the superlatives and perfection that will be forced upon you.  Christmas is not a time for superiority or greatness; it is a time to be and enjoy the simplicity of loveliness.

Wishing you all a lovely and imperfect Christmas!


Let’s Get Rid of Homework

As both a parent and a teacher I have always debated the value of homework.  There have been a few things this week that have happened that have swung my viewpoint.

On Tuesday evening I casually asked my son, you know the one being treated for leukaemia if he had any homework.  His reply was, “Yes, but it doesn’t have to be in until next week, I’ll do it on Sunday afternoon”.  On one hand, I’m proud that he is able to manage his time well enough and can put aside time when he will feel more refreshed to tackle it. On the other hand, I feel sidelined that precious family time at the weekend is being eaten in to by school work.  I, of course, did not say this to him as I want him to respect education and his teachers, however, I cannot help but feel less and less supportive of the endless homework tasks which intrude our personal lives.

As a parent, it is our responsibility to nurture our child’s physical, emotional, social and cognitive abilities by helping them develop and hone the knowledge and skills they need to reach developmental milestones and progress further.  This can be achieved through directed modelling, teaching and guidance and as a product of our inherent values, behaviour and lifestyle.  I believe that as parents, we should support and encourage a love of learning and curiosity in the world around us through exploration and enquiry.

I have seen and experienced that the relentless setting of homework can obliterate this desire to learn, instead of replacing it with immense stress and pressure for the child and the family.

I met with a young man today who was concerned about an argument he had with his Mum the previous evening; the trigger was that he was unable to access the homework he had been set.  I saw a post from an exasperated parent on Facebook asking for help about a Year 7 Science homework.  Another parent in the supermarket asking how he can help his son who consistently has meltdowns about his homework tasks not being good enough – but why?  Because he sees his 5-year-old peers take in pieces of art clearly designed and made by the parents.  For him, his attempt on his own just doesn’t quite look as good no matter what his parents say.

I have worked with families where there are 2 adults and 4 children living in a two-bedroom flat – where can they complete homework?  Families with no access to paper let alone resources to make a Tudor House.  Families where both parents work who want to spend time enjoying their children rather than completing sterile and useless MyMaths tasks, or those plain and dull worksheets which are given purely to tick a box.

Homework is killing our children’s love of learning.  Are we not meant to be preparing our children for the world of work?  What other occupation, apart from teaching, are you expected to complete work beyond your hours of work?  Yet, we expect our young children to do this.  This concept of homework is even more difficult for children who are on the autistic spectrum to comprehend – school work should be completed at school right?

As a parent and a teacher, I tow the line about homework but I am becoming increasingly opposed to it.  I am more than happy to go through spellings or times tables in the car or whilst we are out for a walk.  If my children show interest in a particular topic or issue we will discuss it or research it in more depth.  We will talk about political and social issues, we will write letters and stories that have meaning, we will draw a beautiful image representing the day we have had.  This is far more meaningful than trying to recreate a Tudor House.

I do believe that work beyond the classroom becomes relevant and important as children embark on their GCSE and A Levels.  Children do need to develop skills of research and inquiry for further study and success in the workplace.  I also believe that there is an argument for determined practice but this needs to be driven from within and a desire to learn and succeed; not a product of relentless persuasion from a parent.    Children do need to develop skills of time management and meeting deadlines and this can be mastered in time, as they approach adulthood and independence.  Imagine the enthusiasm if the concept of home learning and individual inquiry started at 14 years old rather than 4 years old.  Unfortunately, by the time children reach GCSE, homework has become an arduous task with little meaning or benefit.  It is purely a task which has to be endured; there is no investment or passion.

Let our kids be kids when they are not at school.  Let our kids explore the world around them.  Let them simply enjoy time with their friends and their families.

We need to remove the unnecessary pressure and stress of homework.  We need to allow children to enjoy and relish the precious time they have beyond the classroom.  We need to liberate our children to enjoy the fun and freedom in life.


Life is Cruel

In the last 24 hours, another family and community have been ripped apart by the devastating news that a young girl has died from cancer.

The statistics tell us that cancer in children is rare – it feels far from that at the moment.

I had the pleasure of teaching this young lady and meeting her at an oncology review.  Her wide smile, forgiving eyes and determination told the world that she would do all she could to beat her diagnosis.  I thought she would.  Heartbreakingly, she didn’t. As is the case for so many children.

Daisy will always have a special place in my heart along with Alice and Ernie who have also passed away this year.  Their smile,  determination and passion will be buried deep in my soul.

These wonderful, special and unique children will live forever in our memories.

But they should not have gone so soon.

They will always be missed.

Life is Cruel.

#Daisy #Alice #Ernie #Jack #Ciara #Gaia





Back from my Blogging Holiday!

It’s been so long since my last blog and this has been a conscious decision following Childhood Cancer Awareness Month.  The response to my #ablogaday was phenomenal and thank you to everyone who contributed and all who engaged with it.  What I was not prepared for was the emotional toll that came with it.

Throughout September I was inundated with blogs from friends, family and virtual friends who all wrote enlightening and inspiring pieces straight from the heart.  Of course, I had to read and edit blogs where necessary, I hadn’t thought this bit through.  At the beginning, it was fine but as the days went on, the rawness and honesty in these blogs started to weigh me down.  It was the hurt and the pain that so many people carry round with them that hit my heart.  On 25th September #ablogday stopped.  In all honesty I think a was waiting for Mr Brown to contribute, and once he had my pursuit was over.  I needed a holiday so I packed up my Blog and spent some time away.

I’m back with a new haircut and everything!  I’m back and really looking forward to writing again.  I’m back recharged and emotionally back on form.  One thing that makes me so proud of Mrs Brown’s Blogs is the positive engagement that takes place and the supportive platform it offers others.  This is want I now want to build on.  Whilst Childhood Cancer is still part of our lives and always will be, I want to move away from it being the main emphasis of my writing.  I now want to explore the myriad of parenting and family experiences that we all enjoy/despair of each day.  There will of course be the added dimension that my son is in treatment for leukaemia but all families have their unique dimension.  And that is what is so wonderful about us all.  We can all celebrate our achievements, worries and concerns – none are more significant than others, it’s all about perspective.

I’m so pleased to be back and look forward to sharing my thoughts and feelings about the crazy and often confusing world around us.  I have plans to explore behaviour as communication, our daily routines and how we goal set for ourselves and our family.  I want to start to combine my emotional journey with my experience as an educator to explore the everyday nuances of life.

I hope you’ll continue to join me on this journey.  I feel truly blessed to have the opportunity to be excited again – Let’s chat about and enjoy those small things!


Majorca October 2017 – A Blogger’s Holiday


#beinghuman by Rose Driscoll

Doing the dishes is something I hated doing, it made me feel like a non-stop washing machine I felt anything but human while doing this despised chore.  Oh, how I loathed a full sink no matter how many times I cleared it the sink would still be full by the end of each day.

Most days I did everything I could to avoid the mess, putting it off, I even thought of buying a dishwasher but even then I would still need to load them.

I thought doing the dishes was pulling me away from the things that really mattered like spending time with my boys it was also pulling me away from things I enjoyed like reading, watching tv, going out…all I could see was this never-ending full sink.

However, since Isaiah got sick my views have been changed as these few months I’ve felt like a robot going through the motions to help Isaiah survive. I’ve had to do a lot of things that I would happily rather do the dishes than doing them. Nowadays I feel the most human when I’m standing at my sink with a cloth in my hand and elbows deep in fairy liquid washing dishes beings me back a sense of normality in a very chaotic chapter of my life.
Being human is doing things you really don’t want to do even the dishes which I now embrace with welcoming arms.


washing up


Life’s Firsts

When we’re born it’s all about our firsts.  Our first poop, our first smile, our first sleep through the night.  Then we celebrate the first step, the first word, the first day at school.  It’s all about firsts.

As we get older those firsts dwindle but they are still as important.  The first date, the first job, the first baby.  They are still there but less often.  That is until some form of trauma or loss occurs.

I now find myself relishing firsts in the same way as I did when the children were first-born.  Since Felix’s diagnosis, firsts have become all-encompassing; the first haircut, the first birthday, the first Christmas.  We are currently increasing clinic visits to three weeks for the first time, Felix got winded for the first time yesterday, we are soon to go on our first holiday abroad since Felix was diagnosed.

When we are growing, these firsts are exciting and exhilarating.  This time around I approach these firsts with caution and trepidation.  I can remember last year as the first Christmas loomed upon us – I was pleased and relieved to see it come and go.  The seconds are easier, this is now the #newnormal.

This occupation we have with firsts are apparent not only following trauma but also through loss.  Any first moment, experience or occasion without a loved one is significant and tough.  My heart goes out to all of those experiencing firsts through loss.

We all have and do live through these firsts.  When we are younger, firsts tended to be emblazoned with happiness and delight.  As we get older our firsts become shrouded in hope and resilience.  It is this hope and resilience that is #beinghuman.  In the most emotionally charged moments, we survive.  We survive because we are driven by our inner soul and our we are motivated by our mindset. We know that we have to live through these firsts before they become a last.

As our first foreign holiday approaches, I am drawing on everything that is #beinghuman so that I enjoy and relish how lucky we are to have this first.  I have to bury my worries and caution and replace my feelings with the happiness and delight that I remember from those wonder years.

I really can’t wait for the second though!

#beinghuman #doit #blogit

Life's firsts