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




me & Alfie Boe (and Daisy of course!)


Daisy inspecting another London Marathon Medal & declaring it good


First camp of the year


Disneyland Paris


Rubbish Things

Daisy's orthopaedic surgeon confirming that despite surgery her inability to walk was neurological in origin and therefore less put rightable
Andy being diagnosed with Stage IV, metastasised colorectal cancer


Thoughts on the rubbish things.....

Daisy being wheelchair dependent is rubbish, it is really tough to see her continue to lose her abilities, this is not supposed to happen with Costello Syndrome, if anything the children gain abilities or stabilise, Costello Syndrome is not a degenerative condition .  Which is why we remain convinced that there is an underlying mitochondrial disorder going on as well as the Costello Syndrome.  We transferred Daisy's cardiac care to Great Ormond Street Hospital this year and her cardiologist, on meeting her for the first time said exactly the same, there are too many systems affected for it not to be mitochondrial and this would explain the slow but constant deterioration.  I don't know, maybe we will never know.  A few years ago I would be pushing and pushing for answers but I think 10 years of this has worn me down a bit.  We would like to know why Daisy presents so differently to all the other children who have Costello Syndrome but we know it won't change things, only give us an answer why.  The only hope I cling to is that maybe it will help guide how we manage her care and symptoms.  But at the moment, despite everything, she is doing OK and we have reached a fragile equilibrium with her, helped in no small part by the regular respite we receive on a weekly basis from the amazing nursing team at the Children's Trust at Tadworth and the outreach and occasional stays at ShootingStar-Chase hospice.

Because with the other, utterly rubbish thing that happened in our lives last year we need Daisy's support services more than ever.

From a very selfish view point the cancer diagnosis has been rubbish because now not only am I a man down to help manage the huge workload involved not just in looking after Daisy but also the needs of our two boys, both at different stages of their journey with autism and a daughter about to sit her GCSE exams, but I also have an extra person to care for.

When you have cancer you just need to focus on your own needs.  The chemo regimen Andy is on is as strong as it gets without killing him so as you can imagine it is wiping it out, and hopefully reducing his tumours in size in the process.  So I need to make sure he makes all his appointments, takes his meds, eats good food regularly and has everything he needs in place to focus on getting well and getting through this.

When he was diagnosed, the doctor turned to me and said "This will bring you to your knees".  To be honest I don't think he fully realised who he was dealing with, I was brought to my knees when Daisy was born and the full impact of her diagnosis and subsequent intestinal failure hit, I now have legs of steel but they have wobbled a few times over the past few weeks and knowing that for two nights a week when Daisy stays at The Children's Trust I get a break from IVs and TPN and stoma bags, catheters and seizures (and children's TV), has kept me going.  Although when you have four children you don't really get a break, those moments of peace have to be snatched and that's where my running has become even more important.

Not surprisingly I'm more tired than I was last year, mainly due to the lack of sleep (I often find myself relegated to the bottom bunk in Jules's room as Andy has insomnia or is vomiting post chemo) and the physical stress of looking after a wheelchair dependent 10 year old who cannot manage any aspect of her own care takes it's toll.  But I am still running, I have lost pace and I can't put in the 40 mile weeks but I can get out 3 - 4 times a week still and my aim is to remain race fit so that if the opportunity arises I can sneak in a quick race or two (although I doubt that this is going to be a year of PB's unless I run a distance I have never run before).

So a New Year has just begun.  We saw 2015 in with 3 of the children out of the house and Theo having decided to have an early night, it was the closest we could get to an evening on our own.  Andy started the year having completed 3 rounds of chemo, he has 3 more to go.

The parting words from his oncologist as he visited Andy on the ward on the 30th December were 'Well I'm afraid this is going to take up a lot of your time in 2015" - in the words of a teenager, no shit sherlock!

For the benefit of those who don't know and to help you understand how our 2015 is going to pan out we thought we should share Andy's treatment plan.

As you all know we are the biggest supporters of the NHS, Daisy would not be here without this incredible institution, I will defend it always.  So it will come as a huge surprise when I tell you that Andy's cancer treatment is all being managed in the private healthcare system.  A couple of years ago we took out a private medical policy, our rationale being while our children receive incredible care within the NHS, they and Daisy especially, relied on us being able to function.  I decided that if we needed something done (and in my mind I was thinking simple things like a knee op or physio) then we needed to get it sorted quickly with minimum down time and at a time that could fit around Daisy's care.  Little did we realise that it was the best decision we have ever made.

Andy's chemo regimen is called FOLFIRINOX, it is a very hard hitting, full on regimen normally only used in advanced pancreatic cancer.  It involves the infusion of 3 chemotherapy drugs in one round.  Under the NHS this rarely available for advanced colorectal cancer and is a completely postcode dependent regimen as an individual case has to be presented for funding. He also receives an infusion of a monoclonal antibody called Bevacicumab.  Unlike the scatter gun approach of chemotherapy, monoclonal antibodies target the tumour cutting off it's blood supply.  This four drug combination gives Andy the best chance of shrinking the secondary tumours in his liver so that they can be removed by surgery.  Bevacicumab (brand name Avastin), is a very expensive drug, it does not have NICE approval and is therefore not available (or possibly in very rare, exceptional circumstances) on the NHS.

Facetiming Daisy to minimise cross infection risk while neutropenic

The bottom line is that by having his treatment privately Andy is getting the gold standard, the treatment that his Oncologist has studied and researched and knows will give him the best chance of sucess.  Going privately may potentially mean the difference between life and death.

So every alternate Tuesday Andy goes to hospital to have the first lot of infusions put up.  The day before he will have bloods taken to ensure he is OK to have chemo.  So far so good.  Monday is also Daisy's blood day so we spend the day discussing Haemoglobin, neutrophil, platelet and liver function levels for two members of the family.  The first day of infusions Andy now spends on the ward and stays overnight, the infusions take a long time  it can be very tiring so he is more comfortable on the ward.  The next day he comes home with a small pump with the chemo in and returns on day 3 when the pump has finished, normally mid afternoon.  He is given a bag of meds to take to help manage the side effects and 24 hours after the chemo finishes I start his 7 day course of injections to help stimulate his white blood cells and reduce his risk of infection.

We have also learned that these injections are also not routinely available on the NHS and when they are prescribed it is certainly not for a 7 day course, yet without them Andy risks contracting a serious infection which his body would have no resistance too.  Often people can die from infections when having chemo, living with a daughter who is colonised with some very nasty bugs the risks are high so again we are grateful that Andy has the maximum protection from the infection risks of chemo treatment that you can get.

The plan is 6 rounds of this chemo regimen, next week he starts round 4.  Then two weeks after the last round he will have repeat scans.  This is where we will know if the chemo has worked and the tumours have shrunk.  Andy certainly feels better than he did when he started chemo and his issues now are less with cancer symptoms and more chemo symptoms but until he is scanned we will not know.

After we know where we are with the scans, and in the hope that the chemo has done it's job then a decision will be made on the next phase.  Either chemo radiation for 30 minutes a day for 5 weeks with the aim of further shrinking the primary tumour to make surgery as straightforward as possible or straight to liver surgery to resect the liver and remove the tumours followed, once Andy has recovered by bowel surgery to remove the primary tumour and form a temporary stoma.  Then once all the surgery has taken place there will be more chemo and hopefully at some point a reversal of the stoma.  No wonder the oncologist said that this would take up a lot of 2015.

But at least we have a plan and the end point is for Andy to be in a position of being NED (no evidence of disease) (our scottish family will laugh at the ned reference).  But chemo and surgery allowing we all still need to have a life, we have to have time together as a family when cancer is not the topic, and we have to have time together as a couple.



Maybe by the end of this year we will get a family photo with everyone looking at the camera


Again and again we are so grateful that we had already made that mind shift to one of seizing the moment, always Daisy reminds us to do this.  We have found that a couple of days before chemo is due Andy feels full of energy and back to normal so we have managed to meet up with friends, go out to dinner, do normal stuff.  And the plan for this year is to do lots more normal stuff and maybe a bit more special stuff, so looking forward to 2015 this is what we want to do- call it resolutions, call it a bucket list, this is how we balance out our lives and make every day count:-


  • Celebrate some milestone birthdays - in a few weeks Theo will turn 18, the following month Xanthe will turn 16 and then in the summer Jules will become a teenager.  We love a celebration, what better excuse than a milestone birthday


  • To make sure Daisy has as many fun experiences as possible - I have been looking into hiring a wheelchair accessible canal boat for the day, tickets for shows in London, a trip to Legoland and hopefully, with a huge amount of planning and supported by some carers a family holiday for a few days (this is increasingly difficult because of Daisy's need for a specialist bed and seating and having a wheelchair accessible place to stay but we won't let that put us off, I'm researching options and no doubt we'll come up with a solution)


  • Glastonbury 2015 in our camper van - this is a big focus for Andy and I, we love festivals, we love our camper van and most of all, as regular blog readers know, Glasto is my most favourite place in the world. 


  • A romantic break to the South of France together - a few days, just Andy and I , no children in the place where our story began (sort of).  Although we had been together for a while I made Andy officially propose to me in the South of France and trips to the Cote D"Azur were part of our life for many years.


  • Lots more gigs and shows.  Family friendly ones, ones with Daisy, ones on our own - we live in the best place of the world so see live music and theatre, we want to make the most of it.

The whole aim is to make sure that next Christmas, when John Lennon asks me "and what have you done?" - I can reply, we did a lot John, we did a lot and guess what? it wasn't all about the cancer.



2 comments:

Twinsplustwo said...

You are an inspiration Steph. I just hope there is plenty of time in the not too distant future when you don't have to be inspirational, and that you can grab as many of those precious non health related moments as possible. xxx

Georgina Badrudin said...

Hi Stephanie

You don't know me but I found your blog after after seeing a post on SW19 network re recommendations for wheelchair accessible Christmas grottos. As a fellow local mum of a young wheelchair bound daughter (quadriplegic CP) I can sympathise with many of the issues Daisy and you as a family face.

You seem to be very very well researched so I am sure you already know about it and maybe already been there but have you thought of going to The Calvert Trust? We went to the one in Exmoor twice last year as a family and had the most amazing time on each occasion. The range of activities is both challenging and inclusive enough to ensure every member of the group, disabled or not, have an experience to remember, and the staff and facilities are fantastic. Of you can go I would thoroughly recommend it.

I wish you and your family all the best against the challenges you are facing this year, and hope you are able to stay strong. You sound like an amazing person!

Georgina

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