A Family Reunion

"Find your tribe", it's the advice I give the many parents of children with additional needs who contact me.  It doesn't matter if you child has a confirmed diagnosis, you need to find people who "get it", who understand what it's like to live 24/7 with a child who has taken you for a ride on the extreme parenting roller coaster.

We were lucky (I'm ever the optimist), Daisy received a confirmed diagnosis of Costello Syndrome when she was 6 months old.  At the time she was one of the first children in the world to be tested for the sporadic mutation on the hras gene which causes the syndrome, at the time we were told that it was so sporadic the chances of having a child with Costello Syndrome were 1:1.25million.

My speech at the Houses of Parliament (for Together for Short Lives)

I'm so busy at the moment, it's crazy!  Juggling the demands of my day job three days a week with freelance commitments and campaigning on behalf of families like ours.  Families who are caring for the sickest children in the UK and those who are grieving the loss of their child...

It is this work, my campaigning work, which gives me the most pleasure and fulfilment.  It isn't about simply telling our story, it's about working with some of the biggest influencers in the palliative care sector to effect change, to really make a difference.

Tonight I'm in a hotel in Bristol and tomorrow I will join a closed event of academic and medical influencers discussing how we manage end of life care in the UK.  In the evening I will be speaking at a public event looking at what needs to change, how we can do things better.

It's another night away from my children but it's another opportunity to change hearts and minds, to learn from what has gone well, what has not gone well and to continue to move forward in engaging the public in open conversations about how we talk about death and how we care for those who are life limited.

Earlier this week I attended an event at the Palace of Westminster as an ambassador for the children's palliative care charity, Together for Short Lives.

And then she was gone

You were here and now you are gone and my arms ache for you.

Did I do enough?

Did you know how much I loved you?

Did I spend enough time just being your mummy?

My lovely girl.  My Daisy Rose.

I miss you so much.  We all miss you. We miss your voice calling for us, the way you chose which sibling would have a hug depending on what you needed them to do for you.

I miss our cuddles, our special times together.  Chatting to you and telling you funny stories to keep you entertained on the endless trips to hospital for appointments. Singing together as I set up your infusions.  Answering your endless questions.

I avoid the shops you loved, it hurts too much to remember your request for shopping, for money, for big girls clothes, for a new toy....

I talk to you a lot, I dream of you a lot.  I wave to you in the stars.

The house echoes with emptiness.  The silence is deafening.

When you died I switched off your beloved ipad, with all your music and TV shows and games and photos.  I have not switched it back on since.  It still has your fingerprints.  Tomorrow I'm going to turn it on again.  Once more the house will be filled with your soundtrack.

I'm reliving every last moment. It pains me that you were in so much pain at the end, that you were poked and prodded in your last hours.  But we didn't know.  We had been so close to the edge so many times, every time you let us glimpse into the abyss then you turned the corner and came back.  This time you didn't, I knew you were so tired.  You had been tired for so long.  Since daddy died.  your beautiful spark was gone and you tried so hard but it was all such an effort.

And I knew, at the end, it was time to let you go.  And much as I hate the thought that your last hours were filled with fear and pain I am glad we were able to reclaim you and bring you home again. Bring our girl home just as you asked.

I hope that you knew how much you were loved.  How we made sure that we fitted in a lifetime of memories into your 12 years.  We did so much, everywhere I go in London there is a memory of a place we went together, time spent together, precious time.

I always knew our time was going to be short, I could never imagine that we would have the gift of twelve years with you.  Yet I want more, just a last hug, to hold you in my arms, to feel your little curly head against my cheek.

I hope I did enough, I hope you were happy, I hope you knew how much you were loved.

I was so lucky to have been your mummy.

xxxxx

22/12/04 - 31/01/17

#rememberingdaisy
#wasthisintheplan

Wear Jeans, Change Lives

Daisy was born with a completely sporadic gene mutation which caused her to have the rare disease, Costello Syndrome.  She was rare, especially as it was likely that she had some secondary, undiagnosed mutation which caused her to have such extreme symptoms.

The decision no parent should ever have to face

Nearly 6 months ago I had to make a decision that no parent should ever have to face.  I had to agree to the hospital turning off my daughter's life support and to let her go.

I always knew the day would come.  I knew that Daisy would die before me but I just did not know when or how.  As it was we had 12 years with her.  In her final three years the effect of the seizures and long term total parenteral nutrition (TPN) caused brain and neurological damage. We could see a clear deterioration, a very slow but painful decline.

When Daisy was about 7 she was referred to the palliative care team, she had been under hospice care since she was 6 months, but in agreement with the hospital we understood that we needed to focus on maximising Daisy's quality of life and enjoying the time we had with her.

The long goodbye

We took Daisy back to school for her funeral, one last trip to the school she loved and had attended from the age of three.  I wanted to hide under a rock but because Daisy touched so many lives it was important that everyone got a chance to say goodbye.

We did her proud.  My beautiful rainbow girl even arranged for a rainbow to appear over the school at the very end.

Realistic Resolutions

"I don't make resolutions"

Andy always made this announcement at New Year (whenever I started reeling out my list for the year).

He firmly believed the focus should be about changing habits , not making unrealistic promises.  "It takes six weeks to change a habit" was his rationale and he felt that you didn't need a point in time like a new year to make changes, we should be constantly thinking about what we would like to do differently or change and make realistic goals so we don't set ourselves up for failure.

I do like a resolution however, I love a deadline, it drives me and being a naturally competitive person it gives me something to work towards.

In 2012 I resolved to get back to running again.  I had always been a regular runner, even from my teenage years but it had tapered off as a result of the long hospital stays with Daisy, the comfort eating was making me bloated and I took a look in the mirror and decided that this was not what I wanted.

Looking at you now, you would never know

Daisy was born by c-section.  That wasn't in the plan.  My other children hadn't been born that way.  We had hoped for a home waterbirth, the same as Jules two years previously.  But as always with Daisy she called the shots.  Things were not looking good, I had been in and out of labour for a few weeks and eventually my consultant decided that she had to be delivered.

So instead of a valentines baby we had a nearly Christmas baby.

Andy rushed down to the NICU once I was back in recovery.  "It's Daisy Rose" he told the ward administrator when she asked him if the baby had a name.  Years later she told me she still remembered that, after the hundreds of children that she had to officially register as patients she still remembered Daisy's arrival and Andy informing her that she was Daisy Rose.

We celebrated her 12th birthday today.  12 whole years since she arrived.  No-one quite knew what was going on with her, they still don't.  She has so much more than her main diagnosis.  She has something else going on which isn't covered by the Costello Syndrome Diagnosis.  Maybe one day they will find out, maybe they never will.  But she is still here and still defying the odds, despite everything she has been through.

We went to see Disney on Ice today, travelling there by train, Theo came along to help and she loved it.

On the way back she laughed as a man dropped his newspaper in his rush to board the train and he laughed back and smiled.  As he left the train he came over to say hello; "I lost my little girl this year' he said.  "Daisy lost her daddy this year" I replied.

Even though Andy had died a week before Daisy's birthday last year, this feels like the first year we celebrated it without him.  Last year we had made plans for her birthday, last year we hadn't even had his funeral.  Last year I was still numb and in shock.  This year is the first birthday and Christmas we celebrate without Andy.

All day Daisy has talked about Daddy.  When I asked her what she wanted for her birthday she told me "Daddy back".

But life has to go on when you have children, so we celebrated.  12 whole years since Daisy arrived in our lives and turned them upside down.

Running down corridors
Through automatic doors
Got to get to you
Got to see this through
I see hope is here in a plastic box
I've seen Christmas lights reflect in your eyes*

Happy Birthday Daisy Rose

(*Lyrics from Wires: Athlete)

Cancerversary

So here we are,three weeks later, following a mammoth 8 hour surgery at Great Ormond Street Hospital, Daisy is stable enough to be transferred to our wonderful hospice, ShootingStar-Chase for a two week rehab stay before coming home.

Once again she has defied the odds, amazed the medics and charmed everyone who has come into contact with her.  Her team have been incredible and we are so grateful to her surgeon and his team who gave us our girl back, albeit with even more small bowel missing, some blockages and adhesions unravelled, stomas moved and replumbed and a few surprises including a previously undiagnosed duplex ureter and a Meckel's Diverticulum identified and dealt with. 

Daisy signing "home" to her Daddy on the way to the operating theatre

We are still struggling to get on top of her pain but hopefully the meds can be tweaked and managed while she is at the hospice.  Those 8 hours in theatre were the longest ever, it seems each surgery gets harder and harder, you never get used to it but with all her complexities this was the most risky and the hardest for us to deal with.  We are just so pleased she is out the other side and continues to defy the odds and grab life by the hands.  A skill she clearly gets from her Dad - this was the first long hospital stay since Andy's cancer diagnosis and it's been tough being away from him, from the other children and being with Daisy - all of them have needed me and I have needed all of them.

So tomorrow will be a new chapter, the next stage in Daisy's healing coincides with the 7 year anniversary since she first started on Total Parenteral Nutrition (TPN), the intravenous nutrition that she relies on 24 hours a day, 7 days a week to stay alive and thrive.  The 4th November also marks another new anniversary in the Nimmo Family Calender - 1 year since Andy's cancer diagnosis. It's been an incredible year for us, "the best of times, the worst of times" the least few months especially have pushed us to our limits but as always we have found strength and reserves we did not know existed.  Andy and are not inspirational, we are ordinary people thrown into extraordinary circumstances - fucking surreal circumstances actually, our lives would never make it to a soap opera storyline because no-one would believe it!

To mark this incredible milestone, I've let Mr Nimmo himself loose on my blog.  Those of you who know Andy well will know he doesn't hold back so be warned there is swearing.

 Happy Cancerversary Andy

Happy cancerversary to me!  4th of November 2014 a day of filled with 'Fuck!' Really? Oh for fucks sake, cancer? You couldn't fucking write this' looking at each other with incredulity and laughing once we got our heads around it. Very quickly we had a plan and started the chemo the day before my birthday 3 weeks later.

So it's been one orbit around the sun and what has happened?

Well, first things first and the latest results from the scans. The treatment for the SIRT to shrink the tumours in my liver has been fairly successful as there has been shrinkage, but in the one crucial tumour it did not shrink in the way it was needed (away from the blood vessels) in order to render it operable.

But the SIRT seems to be the gift that keeps on giving as it has also given me radioactive induced liver disease, a very rare complication and my liver is not in a fit state for any intervention surgically. I'm also off chemo as my body needs all its resources without having the poison to deal with in order to get it healthy. 

My primary tumour has become active and I've got another small tumour in my pelvis, which is not really a worry. 

and the pulmonary embolisms kept in check by daily injection.

So it's a delicate balance in my recovering and making sure the primary doesn't progress in order to get to the next step. 

I was told that my cancer is incurable on day one and it means living with it to a greater or lesser degree dependent on how the disease progresses or not. 

So If someone asked you what would you do if you had a year to live? What would you focus on, what would be important to you what would you feel at the prospect of a limited life?  Well fortunately as a family we have taken every opportunity and lived with mortality since Daisy's birth and have had many talks about death and dying. For me this is one the keys to being happy, living without fear.

As a coach and trainer, I have worked with so many people in the past on changing limiting beliefs about themselves and opening a new way of seeing themselves without the limits they have imposed on themselves. For me it has been straightforward to deal with things, my favourite phrases are 'fuck it what's the worse that can happen?' If you already know the bottom line and are not afraid of it ends then fear has no power over you..

When you have followed a process and dealt with almost every objection and take responsibility for things its easy you have control and influence in you choices. Practise what you preach.

You have choices in how you behave and respond to anything and understanding for what caused it and what options you have. I choose to be realistic and positive and it's served very well for the last year and will next too. that has been there but has become more important to live well. 

Everything I worked on with my core values and what enables me to to get the best from this experience has worked brilliantly.

I achieved my goals set out and have arrived at the point to and be working on year 2 which of course will have Glastonbury as the 6 month goal! (Yes - we struck lucky in the ticket lottery yet again!)

Time is a finite resource and 'Spending time' is such a throwaway phrase until there is a real cost of not doing so. Things like being with the children but the thing is you can't force them to do that just be open to the opportunity when they really want to. 

It has been a very tough transition for them to adjust to the circumstances with everything else going on in their lives and they have done remarkably but we have always encouraged self reliance and the attitude of if you want something you make it happen and not accept excuses. Our role is to make them as independent as possible and able to make effective decisions for themselves. It's served Steph and I really well and along with being resilient. 

I'm starting hypnotherapy again as I really enjoy it and want to explore my subconscious and how I can harness that mind body connection. No 'Angels' or 'magic' or any quantum conscious bollocks just good old classic Milton Erricson and newer NLP techniques to see if I can reduce the pain from peripheral neuropathy and use internal recourse to help heal my liver along with the plethora of drugs I'm taking.

The sheer physical toll of the 17 chemos (each a 3 day infusion of some of the most potent chemicals known to science), the radiation, the drugs to manage the symptoms and the side effects have hit me hard, especially the last 3 months but I'm getting stronger day by day in, small increments. You live with Cancer fatigue which is so beyond tired and have to just adjust to what you can do rather than what you unable to. 

So the cancer is incurable which is very different from terminal, by the way, and to maintain and take the forward steps via chemo, radiation therapy and any thing else that will reduce or maintain. Being off chemo will allow my liver the chance to recover but at the same time monitoring the activity going on. i can live with it like many others and still have a great quality of life.

Friends, this has been fantastic as I have had such love from friends already close and have helped us practically and just being there having a cup of tea and a chat.  But also people I haven't seen for years that I've reconnected with and new ones. I'm so grateful for all the lunches, coffees, beer and most important sharing time with them. it gives me such energy and boost almost vampire like.

I also working on a couple of projects which I'm very excited about and will no doubt be posted here when the time comes.

I'm so sorry not have been able to keep up with people I so want to see and meet especially the last few months and the open offers still there but being so ill recently put the halt on that just for the time being. 

There have been so many times over the last year where we have been laughing and weeping tears from the banter, silly pictures and piss taking, being told to check my 'cancer privilege' by my 16 year old daughter Xanthe and my boys telling me to 'just get on with it, anyone would think you have something wrong with you'!

Humour, having fun and new experiences have been essential to feeling the way I am after a year and will continue. It has of course at the same time taken me to very dark places in danger of not being able to recover but I bounce back, seeing the possibility of dying up close is such a huge thing to process, part of which is saying to yourself 'this not the end, I will get better by facing it and of course 'fuck it what's the worse that can happen'.

I have experienced the some of worst pain in my life but it always fades as you cannot physically remember pain in the same way as experiences and emotions long past. This makes it easier sat in the toilet at 4 am chanting 'all this will pass' along with the expletives that actually help to reduce pain. 

The most emotional time is what I might miss out on the future with my family and my soul mate is the thing that cuts the deepest and the toughest to get around as  its a primary biological and emotional driver and it's a challenge but it can be lived with.

All of this of course would be redundant if I hadn't had the first class medical support which has made the whole process easier and relatively stress free as you don't worry about appointment and scheduling as they are flexible to our needs.

The cornerstone is of course is Steph, I know you all should know by now what an amazing and incredible person and how much she achieves, from running to every day dealing with all phone calls from all the people involved with Daisy's care the meetings and appointments every week and how she has the massive respect from all in how she not just survive but thrives. I mean she is a paid journalist and writer for the Guardian, the Independent and the Huffington post for fucks sake, she just makes it happen, no limiting beliefs.

On top of all of that helping me at every opportunity to make sure I'm keep taking the drugs, eating and hydrating. I would not be here if it wasn't for her and the highly skilled medical professional team dedicated to getting the best from the situation.

So we go again for another orbit around the Sun and the quote from my favourite film of the year (the Martian) hit the nail on the helmet:

 'At some point, everything's gonna go south on you and you're going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That's all it is. You just begin. You do the math. You solve one problem and you solve the next one, and then the next. And If you solve enough problems, you get to come home'

I Couldn't put it any better.

So I can't wait for the year coming as it will be different to the one with new experiences and the unexpected. I mean this time last year I had no idea I would meet and hang out with Dave Grohl! Another great example of making something happen.

Onward and upwards! we go again! for another year to celebrate Cancerversary #2  - 4th November 2016!

Conceal it, don't feel it

I have come to realise that over the past year my life has been guided by Queen Elsa of Arendelle.

Yes people, I now look to a fictional animated disney character for guidance.

Time and time again, when it all gets too much and things get me down I channel Elsa, scattering ice crystals into the air

This works really well, try it.  In times of stress remind yourself, what would Elsa do?

Hitting the Wall

Marathon runners know this term well - hitting the wall.  That point in the race where your reserves have run out, you legs are screaming in pain and you have to do all you can to overcome that voice in your head which is saying "you can't do this".

We have hit the wall. Not surprisingly really, 17 rounds of gruelling chemo over 3 days, an intensive course of Selective Internal Radiation Therapy (SIRT), coupled with a very complicated family life is going to have it's toll.

The Medical Symposium, the Ordinary Mum and the story of an Extraordinary Girl

I'm writing this in a somewhat jetlagged state......

Yes!  I made it, following my successful crowdfunding campaign I was able to fly out to Seattle to attend the Costello Syndrome Family forum and more importantly present Daisy's story at the Rasopathies Medical Symposium.

When your child has a rare disease (and an even rarer manifestation of the syndrome) then the chance to meet with other families and to discuss issues with the doctors at the forefront of research into the disease is immeasurable.

It is rare to be in the same room as children and young people who look so similar to my own daughter but at the same time it was bittersweet as it really brought home to me how different Daisy also is to the other children who share her gene mutation.

Let's talk about death (so we can get on with living)

We really don't handle the whole issue of dying well in this country do we?  It's just not something spoken about, a taboo subject.  We are all going to die so why do we not make sure our wishes are clear so that whenever or wherever it happens those who are left behind know what to do.

We have been thinking and talking about death a lot recently in our family. For 10 years we have lived with the knowledge that one of our children will likely not reach adulthood.  She has defied the odds over and over but medical intervention keeps her alive and that can't keep working forever, we don't know when, we don't know how but we do know we have to cram in a lot of living with Daisy because she is not going to be around for as long as the rest of us....or so we thought.

Overcoming my British reserve (all thanks to Amanda Palmer)

When I go to Glastonbury I prefer to wander around around, discovering music that I might not otherwise have heard if I stuck to a rigid list of bands I want see/the mass media suggests I see.

It was during one of these wanderings in 2013 that I found myself at the Other Stage watching the most amazing crowdsurfing I had ever seen.  I saw this incredible woman being carried across the crowds with a huge train billowing behind her, and all the time she was singing, a strong powerful voice, a strong powerful song.  This was my introduction to Amanda Palmer.

Amanda Palmer Crowdsurfing at Glastonbury 2013 (from glastonburyfestivals.co.uk)

Learning to dance in the rain

Sorry readers, I have neglected you for far too long.  Truth is, this crazy, busy, plate spinning life of mine has gone into warp drive and this combined with some lovely seasonal lurgies knocking us all down like dominos has left very little time to do any writing.

I'm just back from a  half term break with Jules, thanks to respite support from The Children's Trust at Tadworth and my mum stepping in to hold the fort in my absence.

I  really needed these few days away from what has become our normality to regroup and recharge, things happened so quickly over the past few months and it has been difficult just to catch my breath with the speed of events.

I went back to Normandy, so strange to think that last August Andy and I managed to work the logistics to take a break here without children, it was a lovely few days together, oblivious to the bomb that was about to go off in the middle of our lives.

It is amazing though how quickly it has all become our new norm; chemo, injections, juggling respite, adapting to a new raft of medical terms.

After 5 gruelling rounds of chemo, Andy had scans which showed that the drugs are working, the primary tumour in his bowel  and the secondaries in his liver have shrunk by 30%. In fact the treatment is working so well that the liver surgeons have asked for 2 more rounds in addition to the initial 6 planned to optimise tumour shrinkage.  The plan is then for more scans, followed by a week of intensive radiotherapy treatment on the primary tumour and while that is cooking (the oncologist's term), resection of Andy's 3 liver metastases, followed, once he has recovered by removal of the primary tumour.

Another year over, and a new one just begun...

"So this is Christmas, and what have you done?  Another year over, and a new one just begun..." (John Lennon)

Well hello 2015, and what do you have in store for us?  2014 was interesting to say the least.

It's amazing when you sit down and do a bit of an audit of good things versus rubbish things that happened last year we did manage to squeeze in a lot:-


Good Things

Going to Disneyland Paris
Going to the Caudwell Butterfly Ball and Kylie Minogue meeting Daisy (while Andy sneakily managed to put his arm around Kylie's teeny tiny waist)
Going to Latitude Music Festival in our Camper Van
2 Marathons, 1 Ultramarathon, 2 10ks, 2 Half Marathons, a couple of 20 mile road races and a smattering of club races/cross countries completed
The arrival of Pluto! (our working cocker spaniel puppy aka bundle of trouble)
A lovely family reunion at Andy's cousin's wedding
A few days in France, sans enfants
Celebrating Daisy's 10th Birthday - a huge milestone
Seeing the Poppies at the Tower of London

Pluto (5 months) in the Autumn Leaves

They said you wouldn't make it

They said you wouldn't make it

the doctors, the medics.

They said go home, enjoy your time.

We don't need Cancer to remind us to seize the day

There has been a big gap since my last post.   I have had a post in draft for a while, one about the arrival of our lovely little cocker spaniel puppy Pluto and how he has turned our world upside down and had such a huge impact on our family.

But along came something that turned our world upside down even more, and has had a bigger impact on our family than we could ever imagine.

Andy, my brilliant, opinionated, insightful, clever, rock of a husband has cancer.

And the world as we know it will never be the same again.

Richard Dawkins & the danger of generalisation in 140 characters

You have probably noticed that I don't normally jump on the bandwagon when someone makes a crass comment about disability - I might send a tweet or two but that's as far as it goes, I tend to think the Cllr Colin Brewer's of this world are not the mass voice of reason and intelligence and only represent a minority.

But today I really feel the need to write about someone who commands a huge global audience and is well known for his reasoned arguments based on scientific logic.  Richard Dawkins is a respected scientist, Vice President of the British Humanist Association and Ethologist.  He is the author of many best selling books on Science and Atheism and commands a huge worldwide following.

I remember when...

I remember when you could walk

When you only had one tube

attached to a benign pump

when we dared to dream

about mainstream school

independence

sleepovers

a life of your own

when caring for you didn't need a nursing degree

or a 24 hour team

when we had hope

that you could just be a little girl

and not a patient

or a condition

or a diagnosis

now we just hope

that we can fill your time

with love and laughter

and take away the pain