About this blog

This blog documents the story of our family after our daughter Yasmin was diagnosed with leukaemia when she was two years old, just six weeks after our son Isaac was born. Now, three, Yasmin is on maintenance treatment for acute lymphoblastic leukaemia (ALL) until October 2014. The first post can be found here or you can read how my husband Andrew and I felt when we got the diagnosis and when Yasmin started the most intense phase of treatment. The main purpose of the blog is to raise awareness of childhood leukaemia and its impact on families and to raise money for the different charities that have supported us during the most difficult of times. We have helped to raise £33,000 for charity so far, including £30,000 for Great Ormond Street Children's Hospital where Yasmin is undergoing treatment. Anyone wishing to donate can do so at our JustGiving page HERE. All money raised goes directly to into research, better facilities and care. We are now also raising money for Haven House Children's Hospice where Yasmin has been attending for respite care. You can get more information on Facebook or you can follow me on Twitter here.
The blog and our fundraising efforts regularly feature in national newspapers and magazines while the BBC has covered our fundraising here and ITV here.

Language Settings

HERE ARE OUR LANGUAGE SETTINGS (more Japanese to follow): EN |  JA

Monday, 21 July 2014

WHY I HATE AND WHY I LOVE STEROIDS


Meal out on Yasmin's birthday after afternoon spent in hospital
Yasmin is on day four of her monthly five-day course of steroids. I am counting down to the end of treatment by how many courses of steroids we have yet to endure – barring the unscheduled hospitals stays, they remain the worst part of treatment. We have three left until October.

I hate steroids because almost immediately my usually happy, fun, although cheeky, daughter is replaced by a mini monster as described in The Story of the Steroid Monster.
It means all outings, parties and holidays which fall at that time are half ruined by her foul moods.
I hate having to state to everyone wherever we go, that my daughter is on steroids as way as an explanation for her bad behavior.
But most of all, I hate steroids because they make my daughter sad. She has no control of her emotions at this time and is overwhelmed by the anger and fear that they can induce in her. The only thing I can do is hold her. How she clings to me throughout this time.

I love steroids because when Yasmin took them for five weeks at the beginning of treatment, they ensured my daughter, all skin and bones and gaunt pale cheeks, piled on weight. My own beautiful little Michelin Man.


But most of all, I love steroids because they are a part of the treatment that is the cure.

Friday, 18 July 2014

THE HAPPIEST OF BIRTHDAY PARTIES - WITH PRINCESS ELSA

Isaac enjoys the bouncy castle before the guests and rain arrives!
“I’ve got all my best friends in the world ever here,” Yasmin shouted as she bounced wildly with three princesses, Spiderman and Winnie the Pooh, on the superhero bouncy castle we had hired for her 4th and Isaac’s second birthday party.
To see her so happily enjoying herself with her nursery friends was such a magical moment for Andrew and I. Yasmin has had trouble settling into pre-school, finding it difficult to make her own friends after so much time in hospital and this has been one of our biggest worries. Everyone wants their children to have friends. With Yasmin’s hair starting to thin out again, she looks different from other children and she is now much more aware of this and the amount of time she spends unwell.
So we were delighted that six of her nursery friends could attend her party along with a number of other friends. The wild bouncing was short-lived due to sudden and unpredicted rain – but we had our friend Kay who had volunteered her services as a face painter to entertain and at 3pm the arrival of Princess Elsa from Frozen, to the delight of the girls AND boys who were mesmerised by having a real princess in their midst.
Elsa with Princess Peppa Pig Yasmin
I have never seen children at a party sit so quietly as when Princess Elsa told her story, before they all started colouring in special pictures she had brought along with her. Isaac, who loves princesses as much as Yasmin ensured he got right to the front, nestling into the hem of Elsa's skirt.
After party food and cake, Isaac was still at the table when everyone had stopped eating, stood on the chair with chocolate all over this face (I don’t think he could quite believe that he had been allowed unlimited cake and crisps.)
Yasmin's second best quote of the day was: "This is the best party ever."
Go Yasmin!
Although in my mind, nothing can quite compare to last year's Wizard of Oz party, this year an important thing had happened - Yasmin had enjoyed her day with friends she had made herself - a huge achievement. Isaac - my perfect boy - is always happy no matter what!


After most of the guests left, Yasmin and Isaac finished off a perfect day opening their presents – Isaac’s favourite being a Fireman Sam helmet which he almost went to bed in.
The next day, Yasmin had her first school sports' day. Although, she was tearful when Andrew, Isaac and I arrived to cheer her on and initially refused to participate, a bribe of an ice pop got her into it and it was lovely to watch her running with the other kids. After missing or postponing most other school related milestones, it felt good to watch our child running alongside her friends like any other kid.


Tuesday, 8 July 2014

HOLIDAY AT HOBURNE NAISH

“Sammy, Sammy, Sammy!” Yasmin and Isaac sang loudly during the nightly holiday ritual of dancing along to Sammy the Seahorse, Hoburne Naish’s children’s entertainment.
For an hour every evening on our recent week-long trip to the New Forest, Hampshire, they twirled with new friends on the dance floor, gaining confidence as the week went on. The disco (followed by past bedtime soft play) was undoubtedly the highlight for Yasmin, Isaac’s may have been the ball pool followed by cuddling the real Peppa Pig at Peppa Pig World (second trip there, quite enough for any adult, thank you very much), but, for me, the highlight was our first day spent in beautiful sunshine on the gorgeous resort beach. 
The simple pleasure of splashing in the water, searching for shells and digging sandcastles with nana and granddad brought huge smiles to both kids’ faces. I am noticing this more now – on the rare occasions we get to go swimming, Yasmin becomes fearless once more and enjoys just being a child. The joy of being alive – which is always evident in Isaac - shines from her face at these moments.
On a day trip to beautiful Lymington
 We had gone back with my parents to the same holiday park that Andrew and I took the children to last year, which had been our first real holiday as a family of four, and was kindly arranged again by the Thomas Ball Children’s Cancer Fund.
Yas and Isaac at the
front for Sammy
By going to the same place, we were able to really mark the difference in both kids. Last year, we had watched Yasmin tentatively edge up to other children, only to be rebuffed now and then. At the time, Yasmin’s hair had just started to grow back and with her crop cut she looked striking but very different to all the other girls who tend to wear it long. She was unsure of herself and unused to mixing with her peers. This year, after several happy weeks with her friends at nursery, she was more confident and ready to make friends by herself.
And, of course, Isaac was just a baby last year, whereas now he is a cheeky little man, full of personality and fun. He showed himself to be a ladies’ man on the dance floor (like his dad). Both children really enjoyed the kid's club on our last three mornings there.
The only downsides – as there always are when you are living with leukaemia treatment – were Yasmin was on a course of steroids for half the trip which meant horrendous mood swings and difficult to manage behavior for a few days. And I was on my third course of antibiotics for pneumonia and still feeling wiped out. My bout of pneumonia has made me realize that I must find better ways to alleviate the stresses of getting through treatment - not an easy thing with two young children. However, despite this, it was a fantastic and much-needed holiday after a stressful couple of months.


Sunday, 15 June 2014

TEAM GOSH HIKE BEN NEVIS RAISING £4000

Thanks for all the kind messages everyone. I'm on the mend now. 
For Father's Day - here is my fantastic dad's blog post about the mighty Ben Nevis hike which has raised £4000 for Great Ormond Street plus £2000 for Haven House.

"It's always further than it looks.
It's always taller than it looks.
And it's always harder than it looks."    
-- The 3 rules of mountaineering.

On arriving at the Glen Nevis Visitor Centre at 8am on the 28 May, Paul jumped out of the taxi and immediately began to scan the area for midges. Spotting several clouds of them, he unfolded his, and his wife Ann’s large ‘Highlander Micro Midge Net’. After suffering badly from midge bites five years earlier on Ben Nevis, he wasn’t going to be caught out again. We all used anti-midge cream just in case.
Along with a group of family and friends, my wife, Barbara and I were walking up Ben Nevis to raise funds for Great Ormond St Hospital, which is treating our granddaughter, Yasmin, for leukaemia. We had hiked up the ‘Ben’ with Paul, and Chris Harris in 2009, so we knew what to expect, a long hard slog to the highest mountain in the UK.
There was 13 in our party, four of whom we thought might not make it to the top, Paul had already said he would only take Ann so far, my cousin Dave was going as far as he could, and my cousin Jack also was going to try his hardest after training back home in Arizona.
We set off in good humour, a light drizzle had faded to nothing, and our temperatures rose with the height gain. Barbara had set out an itinerary for the hike, which meant we would stop for a coffee break after two hours. As we were chatting to fellow walkers, and also receiving unsolicited donations from two kind strangers, Stefan and Graham; the time seemed to go by in a flash. Approximately 400 people per day walk up Ben Nevis, mostly friendly folk. 
By now, most of us had removed some of the layers of clothing, and were ready for a breather.
Ann, Paul and Dave had gone down, and Jack was deciding whether to carry on. After joining us for a drink, Jack did go down and we continued onward and upward past Lake Lochan Meall an t-Suidhe.
We crossed the half-way point of Red Burn. 
The knowledge that we were over the half-way mark cheered us enormously.
Our group had split into the teams, the youngest members, Shaun, Steve, Callie and Greer had surged ahead, and were now dots in the distance. I was walking with Barbara, and Kath, and, slightly lower down, Chris was accompanying Debbie, who had little hiking experience, and he was very kindly keeping an eye on her. 
With occasional stops for photographs, then a longer stop for lunch, we finally reached the first snow slopes, and realised that the top was going to be clear, which was fantastic, as on our first ascent in ’09, the top was shrouded in mist.
When the Romantic poet, John Keats reached the top of Ben Nevis in 1818, he describes in his sonnet  'I look into the chasms and a shroud/ Vapurous doth hide them.' And ends: 'All my eye doth meet/ Is mist and crag, not only on this height/But in the world of thought and mental might.'
As we climbed further up the snow slopes, I looked back down and could see Chris with Debbie doggedly coming up, I was very relieved and pleased that Debbie had made it, coming this far she was certain to reach the summit.

The summit of Ben Nevis was now in sight, with Ben Nevis challengers approaching the top. Steve had by now scorched ahead and had waited for us, but had started to feel cold so we met him on his way back down, and he was elated to have made it.
Postcards and photo books can only hint at how gorgeous the Scottish Highlands really are. To be enveloped on all sides by crags, peaks and mountain flowers  while breathing in  cool fresh summer air cannot be replicated in any media: print or electronic. We hiked steadily upward through the snow, and the rugged beauty surrounding us banished the worst of our growing exhaustion.
The views from the top of Ben Nevis were outstanding, we had been up many hills and mountains over the years, but nothing can compare to this, our reward, for making it this far, is a glorious 360-degree view that extends for over 100 miles. It was even possible that we could see Northern Ireland.

Ben Nevis Challengers, on top of the world! We had a short break for coffee and chocolate, and for the photographs, we raised our cups to Yasmin, who was our inspiration for the challenge, then started the difficult task of descent.
But we all realised that we had performed well, and had accomplished the task we had set ourselves.


:: Ben Nevis claims four lives in the average year and must be taken seriously. Equipment is important - you may well sweat on the way up only to find that you rapidly lose heat at the summit, so wind proofs are essential, as are good walking boots. The ascent will take 3 to 4 hours for fit walkers and the return journey will not take much less. Most people should take it steady and allow the whole day.

Thursday, 12 June 2014

THE STRESS OF CARING FOR A CANCER PATIENT


Yasmin and Isaac in Grandad's tractor
It is exactly two years since Yasmin first got ill and I have often wondered how long it would be possible for us to keep going beyond cancer diagnosis, intensive treatment, oral chemo every day, weekly blood tests and the hellish almost monthly unscheduled hospital admissions, the fear your child might die, worries about the future, worries cancer might come back, worries about side effects, all while caring for a new baby, worries for the new baby that he might also have leukaemia, concerns about the impact of treatment on a child's social development, worries about how she will feel when she learns what it meant to have had cancer, fears that life will never be 'normal' again while, all the time, trying to keep as much a semblance of a normal life as possible, which means one or both parents returning to work - in my case very part time, paying mortgages, bills, not being able to juggle things always as Andrew self-employed, cancelling most breaks or nights-out booked in order to provide a 'much-needed break from it all' because instead we have a heart-stopping journey to hospital followed by yet another five nights in hospital beds, amid stress of the council messing up Yasmin's school application despite her clearly having a special need, and the feeling that there is never any break from it because no one else can care for your children like you can and you need to be there for them even when you get sick with worry and stress. 
In my case, I have an answer. After three weeks when I had adenovirus in April, two months nursing both kids through adenovirus and chicken pox, my chest infection may have developed into a pneumonia and I am finally, after two years of intense stress too exhausted and ill to look after the family. Let's hope Andrew does not also fall.