Childhood Cancer Awareness month #teambrown

On Thursday 1st September 2016, we will be joining others to watch Bournemouth Pier #glowgold to help raise awareness of childhood cancer and this is why:

Because my seven-year old son doesn’t know what to say when people ask him how his brother is.

Because my daughter gets frustrated that she can’t tackle her brother at football even though he tackles her.

Because he has low immunity he has to avoid crowded social events where infection cannot be traced.

Because my husband wakes at night in utter panic and fear about what has been and what the future might hold.

Because my child is not a fussy eater but exposure to the wrong types of food and water could be life threatening.

Because he used to be the fastest sprinter in the school, now he struggles to run at all.

Because his grandparents struggle every day with the helplessness of seeing not only their grandson suffer but their son and daughter hurting beyond words.

Because sometimes children do not want to tell a stranger why they are not in school.

Because when my son answered a questionnaire he said he felt ugly.

Because his friends are scared that the same will happen to him as happened to that person on the TV.

Because, sometimes, people just don’t know what to say to me.

Because asking a child to remove their hat on a theme park ride is one of the most devastating things to happen to them.

Because my son has developed a medical vocabulary beyond his 10 years.

And most of all, because very time I look at my son it breaks my heart to think about what he has been through and how his life has changed irrevocably.

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Turning 44

I have always loved the number 44.  It’s a bit out of character for me really as it’s just a number, how can you ‘love’ a number?  No idea why, I just have a thing for the number 44.  So, as we welcomed the New Year in this year I can remember thinking, “this is it, this is going to be the year for me”.  I had no idea why it would be remarkable, I just knew it would be.  Jeez, it certainly has been that.

As my birthday drew closer, it became apparent that not only would I be celebrating another year older but also the last of my son’s IV chemotherapy.  Like all special occasions that we look forward to, it felt like it would never arrive.  The run up to it was unbearable, my emotions were all over the place.  As a distraction, I dedicated my thoughts and feelings to Rio 2016; on reflection not the best idea.  Whilst I’ve always been quite at ease with getting older, the utter brilliance of the athletes in Rio certainly confirmed my entry into middle age.  Their youth, energy and athleticism couldn’t be further from my current mental and physical state.  So as my birthday approached, I was also accepting that, at last, my days of youth were long gone.  This feeling combined with relief that this intense phase of treatment was coming to end didn’t mix well.  Throw in the excitement of putting the house on the market and worry about returning to work, the result was a mixture of grumpy and feisty, argumentative and tearful, ecstatic and pensive.  I was either snapping at everything anyone said or crying over the chopping board whilst making lunch.  I was an emotional mess!

So, at last, the day finally came.  I turned 44 and Felix had his last IV chemotherapy.  The day started with the usual family gathering in bed with breakfast, cards and a bin bag full of wrapping paper.  I was thoroughly spoilt by all.  The celebrations continued in hospital with the chemo being administered in a party atmosphere with, of course, doughnuts.  The interludes in the day included visits from family and friends, a cheeky pub lunch and a perfect evening out with friends at a local pub.  It really was a day of fun and laughter for so many different reasons.

I woke up this morning a very happy and content 44-year-old.  The mixture of emotions which had dominated the week had dissipated completely.  The love and kindness which was directed towards us felt like a huge soft and warm blanket which enveloped us and symbolised that all is good.  It confirmed that 44 is going to a great year and I now know the reason why; with family and friends far and wide, anything will be possible.

Thank you to everyone who took their time to be with us yesterday, whether in person or in words.  Each card, message and conversation meant the world.  You all make this journey with leukaemia and getting older a whole lot easier! I Thank you 😘

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The thing that will go unsaid

As time is moving on, we are beginning to venture again into unknown territory and spontaneous happenings.  Since Felix’s diagnosis we have enjoyed the safety of home and familiar surroundings where people know our back story and explanations are unnecessary.  We have gone out of our way to ensure that everyone is well-informed and up to date with where we are at so that people feel comfortable and at ease with the situation.   As we start to ruffle our wings again and get out into the real world, we are meeting people who do not know our back story or where we are currently at.  I am not sure if this is a good or bad thing.

Felix has asked that if we meet new people we do not mention his diagnosis, he doesn’t see any need for it and I get that.  At the moment it’s hard because I do not want people speculating as to why he looks as he does.  I know I shouldn’t care but I want people to know where he is at to protect him but out of respect to Felix I don’t.  So, to the man in the shop who asked why he wasn’t in school or to the barber who questioned why he wasn’t getting his hair cut, I apologise for my rather vague response – he just didn’t want me to say!

This is something I need to get used to.  There are our wonderful friends, family and virtual friends who know so much about our last six months and leukaemia.  Yet, there will be new encounters and friends who will one day find out but do not need to know in the first instance.  This is what Felix wants.  As he said right from the beginning, “I may have cancer but I am still me”.  His diagnosis will always be part of us but as we reach the less intensive phase of maintenance we need to re-address the prominence that leukaemia has in our daily lives.  Yes, it will continue to play a huge part in our life story but not necessarily in our daily encounters and utterances.

It is a truly exciting time for us at the moment.  This week signifies Felix’s last IV chemotherapy and the end of the delayed intensification phase.  Once his blood counts recover he will start the maintenance phase of chemotherapy which will continue until 2019.  It is hoped that this phase will be far less intense and intrusive.  Felix will be able to attend school regularly again, I can return to work, we can look to the future.  There are some things that we still won’t be able to do like we used to but we are happily making plans to compensate for this.

So, as we embark on our new phase and start venturing into pastures new, we hope that that you will some with us and we can continue to meet new people and make more memories without having to introduce the intruder.  I can’t wait!

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Cancer and Finding Freedom

I had the pleasure of bumping into an old friend this evening at a local, well-known supermarket.  I had bribed the boys with the promise of sweets to cycle to the shop so that we could enjoy the last of the evening sun and I really fancied a glass of Prosecco, but the fridge was bare.  Anyway, as we were discussing who would go in to the shop and who would look after the bikes, I was pleased to see a friendly face walk towards us.

As the kids dived into the shop and conversation progressed, it transpired that the last time I had seen this lovely lady, at the same said supermarket, I had been somewhat preoccupied and desperate to leave as soon I could.  I don’t recall this event at all.  A couple of days later, this lovely lady heard about Felix’s diagnosis and put two and two together.  I had needed to leave the unscheduled encounter as soon as I could because my son had just been diagnosed with Leukaemia.

It was lovely to see her and, as is her lovely nature, she treated the kids to some quite massive bags of sweets.  For me, it brought to light how far we have come in the last six months.  I can remember those early days, often wearing sunglasses to take my youngest to school because by eyes were constantly filled with tears.  There were the regular trips to said supermarket to stock up for whoever was at home or for whoever was staying in hospital with Felix.  Then there were the emergency food trips to try to fulfil Felix’s steroid cravings or wine for me and Mum to help us sleep.  It was so wonderful to note that this trip to the supermarket was a stark comparison to those dark, early days.  This evening was filled with laughter, sugar and fizz;  a complete opposite to when I last saw this lovely lady.

There is a significant change in where we are at. We are able to go out as a family again and do most things that we used to do.  The only problem is that we have almost forgotten how to do it.  We have spent so many months being slaves to the regime of treatment that we have forgotten what ‘freedom’ in a sense feels like and how to manage choice.  We are so very used to having a treatment schedule, being told when and where to be and when there is no treatment, we are waiting for results or further plans.  This has made planning anything almost impossible.  However, we are starting to get a sense of free will again but we are sometimes finding that we are sat, waiting around, for someone to tell us what to do.

Inspired by another local family whose life has also been intruded by leukaemia, we have filled a pot full of fun.  In this pot, the kids find a variety of easy, free and accessible trips that we can do spontaneously, as a family.  It is hoped that this will help us rediscover a sense of freedom and adventure that we have lost to hospital appointments, chemotherapy regimes and blood results.  Whether it is a walk by the river, a spot of crabbing, spending pennies in the arcade or going for a cream tea, the lucky dip will hopefully encourage us to stop waiting around for someone to tell us what to do next.

It still surprises me how brief encounters or discrete happenings continue to add another level of understanding about what it means to have a child with cancer.  It truly is a complex old thing.  So, here’s to enjoying some good old traditional past-times and finding freedom again.

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Who’s looking after the baby?

So, you’ve delivered your beautiful bundle of joy and before you know it, you’re being asked about when you’re going back to work and arrangements for ‘the baby’.

I have had the pleasure of this rite of passage three times over, and each time the response has been different.  We have used a private nursery, child-minder, grandparents, after school clubs and our life saver, au-pairs.

When my youngest turned 18 months, it was time for me to re-launch my career in education and it wasn’t long before I secured a full-time leadership position.  The driving force behind this decision was that our child-care would be placed solely in the hands of an au pair.  At the beginning, my husband was hesitant as this was unknown territory, with the expectations in our society of regulated and certified child-care, this was a risky road to go down. I couldn’t see any other way of affording child-care when our children’s needs were so varied.  Baby Brown needed full-time care, Big Girl Brown needed to be dropped off and collected from school and Big Boy Brown was at pre-school in the morning and needed entertaining in the afternoon.  It was a logistical nightmare.  And so it was agreed, me returning to full time work  would only work if we had a live-in au pair; it made sense in terms of ease, finance and reliability.  The search began.  We searched the numerous websites available that provide the opportunity for au-pairs and host families to find each other.  It was a time-consuming and laborious process but one where we found our first au pair.

Our debut au-pair stayed with us for nearly 4 years! It was the most reliable and consistent child care we had ever had.  It wasn’t just the child-care that worked but the fact that she also made the packed lunches, changed the kids beds, did the ironing, cooked meals and arranged play dates.  The down-side of course is having someone live with you, but for us, the benefits of having an au pair far outweighed having someone living in the house.  The reason it worked so well was that we treated her as we would want someone to treat our daughter if she was an au pair.  This is critical for a positive and successful experience for both the au pair and the host family. The young adults who want to be au pairs are often female, straight out of school and looking to improve their English; they are extremely vulnerable but also courageous as take this huge step on their own into a different culture and way of life.  I was as keen for it to be a positive experience for them as it was for us.

Not all au pairs have the same experience though.  There are unscrupulous families out there who treat their au pairs as modern-day slaves.  We ‘rescued’ two au pairs from families where their treatment went against the whole principle of what the au pair/host relationship should be.  They had been made to sleep on the child’s floor, clean skirting boards with toothbrushes, act as a waitress at the host family’s dinner party never mind being full-time carer for the children.

When it comes to the child care conundrum, an au-pair can be a winner for both the children and the au-pair.  We are still in touch with our old au-pairs and their families, the children have a greater awareness and understanding of other cultures and countries  and at the end of the day, it was just like having a big sister.  I’m glad we took the risk and withstood the incredulous reactions to the fact they were not OFSTED registered.  Instead, our children were looked after in their own home, with consistent boundaries and routines.  A winner for #teambrown.

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