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, four, Yasmin finished all her treatment for acute lymphoblastic leukaemia (ALL) in October 2014 and she had her port out - marking the end of her treatment in February this year. 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. This year Andrew and I will hike Ben Nevis for Children with Cancer. Anyone wishing to donate can do so at our fundraising page here. 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.

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Sunday, 1 March 2015

YASMIN, 4, FINISHES LEUKAEMIA TREATMENT AT GREAT ORMOND STREET AFTER TWO AND A HALF YEARS!




On February 16, two years and eight months since we first took Yasmin into A and E with symptoms of leukaemia and two years and six months since she started treatment, we drove into Great Ormond Street for Yasmin's final part of the acute lymphoblastic leukaemia (ALL) protocol - the removal of her port.
This port was first put in in October 2012 and it has been regularly accessed with a needle since then and used to deliver chemotherapy, antibiotics blood and immunoglubulin transfusions or to take blood out for testing. It has helped to save her life. Yasmin was only two when she started treatment so she has no memory of a life without her port, without needles and syringes. When we have talked to her in recent weeks about her port coming out she has said, "I don't want my port out, I like my wiggly.' It has become a familiar friend.
We had to drive Yasmin starved into London because of having an anaesthetic for the operation but once we arrived Isaac and Yasmin played happily for hours in the playroom before it was time for her to go under around 12pm.
I felt deeply emotional as I chatted to some of the nurses and the fantastic play specialist on Safari. We noticed another family newly arrived that day into the world of the seriously ill children.
 It was almost an hour before we were called to find Yasmin in recovery. We had been warned she would be in a bad mood but she was deeply distressed to find a cannula in her hand - a precautionary measure in case of an emergency now that the port was no longer there. It took me 45 minutes to calm her down enough to eat her lunch and have a drink before they could remove the cannula. From then we had our warrior child back.

The wonderful charity End of Treatment Bells has been putting bells into children's cancer wards and I contacted them last year in the hope that one would arrive before this day. Happily, it arrived just days before and Yasmin was the first bell ringer. When I first read the words on the sign many months ago, my eyes filled with tears as I imagined a time when we would be able to ring this bell. 
"Ring this bell, three times well, its toll to clearly say, my treatment's done, this course is run, and I am on my way."
Now, after many stops and starts, here we were. Doctors and nurses gathered around to hear Yasmin ring the bell and, with a little help, she rang it many many times as everyone cheered and clapped.
 Not long afterwards, highly emotional once more, I thanked a couple of key members of our team telling them, "This is the best hospital in the world, thank you so much for saving Yasmin's life."
"It is very much a partnership and we often overlook the role that parents play," one of the nurse specialists replied.
Andrew and I watched Yasmin and Isaac playing in the corridor, both full of life and energy, and we remembered the child we had brought in there all those months before: skinny, frail, in excruciating pain, unable to walk and clinging to me and Andrew. We remembered being given the diagnosis, not being able to imagine an ending to the nightmare we had been plunged into. 

A short while later, we took two healthy, happy, children home. This part of our journey is over.



Tuesday, 10 February 2015

SNOW - PART TWO


“It’s snowing! It’s snowing!” shouted Yasmin looking through our bedroom window with such excitement it was impossible not to be equally moved, despite the early hour.
We have not had snow in our garden for two years and the last time it snowed Yasmin was having intense chemotherapy and was unable to move off the sofa. It was the closest she had looked to death. I wrote this post about it at the time.
Since then we have had total Frozen indoctrination, which meant the arrival of snow last week also brought the promise to dance like Elsa and Anna in the garden, transformed into a winter wonderland.
Andrew and I got the kids dressed and we all piled out into the garden and into the street so that we could enjoy the snowy morning.
However, the change in the weather also meant that we almost missed Yasmin’s appointment with the chest specialist that we had been waiting for since October and which happened to be that day. 
The Central Line tube wasn’t running so we had to drive in and a 40 minute journey took almost two hours. I spent most of this time stressed out on the phone trying to confirm we were coming in and trying to ascertain whether the appointment would still go ahead. Fortunately, it did. We had been worried that Yasmin might haveTB since October when this had been expressed as a concern to us and we have waited all this time to find out more. But the chest specialist discharged Yasmin with no further concerns, sending us for an X-ray (yet another one) to confirm this, on our way out.
So Yasmin’s port should have come out last Friday. The operation to remove the port, which is really the end of treatment for us, should have happened at the beginning of December but has been constantly put back due to Yasmin having to have more and more transfusions. Last week, was a dance of uncertainty. On Monday (when incidentally I was in A&E with a suspected fractured nose from Yasmin accidentally head butting me - it's fine, but now I have tonsillitis!)  we thought it wasn’t coming out, on Tuesday, we were told it probably was due to Yasmin’s chest being clear. On Wednesday, this was confirmed as happening. On Thursday, I was wandering around at work close to tears with the anticipation that the port was coming out the next day and THAT WOULD BE THE END…but just as I was taking this in, GOSH called to tell us that they had had to cancel the appointment due to an emergency on the ward which meant non urgent cases were being struck off the list. We have been waiting for this since October, I said.
I cannot begin to describe how consistently disappointing this has been. We reached our end goal in October yet we are still not at the end. Thursday night was a night of celebration however, as Andrew won a prestigious photography award at the Picture Editor's Guild Awards,while Yasmin was awarded an achievement certificate the next day in school assembly for progress in reading.
Now, the port is scheduled to come out next week at the beginning of half term. We had wanted a family week away next week but that plan is now on hold again – we need this port out first.
It feels like Andrew and I have been climbing a very steep, treacherous mountain for a very long time. We started the climb carrying Yasmin in June 2012 (Isaac joined us a month later in July) and we reached the summit in October 2014 when Yasmin finished her chemo. We have been waiting to get back down to normal life since then, but our descent keeps getting stopped. It is lonely at the top of this mountain. At times, it feels as if we are the only ones here, waiting.
Just a few more days now and we can begin our journey home.

Tuesday, 20 January 2015

A TUMULTUOUS CHRISTMAS AND A HAPPY NEW YEAR PART 2


A carousel ride by the Eiffel Tower
Queen Karen with corgi Yasmin
Unbeaten by a fractured arm we set off for Paris on December 30 for four almost perfect days. Even the journey over on the car train was fun and on our first night there we enjoyed ten pin bowling at our resort hotel. A real 'normal family activity'!
We spent two days exploring Paris.  I lived in Paris for a year at the age of 20, and had a fantastic time exploring the clubs by night and the museums by day. It will always have a special place in my heart and it was great to return with the kids and discover aspects of the city I didn't know about when I was younger and child-free.
Yasmin and Isaac rode mini cars and a carousel by the Eiffel Tower, we dined on NYE in a restaurant close to Notre Dame and we enjoyed sunny winter weather every day.
On New Year's Day we went to Disneyland. We avoided the huge queues (three hours for the Princess Parade and some people were queuing with toddlers....!) and instead went on just a few rides. 
One of my earliest memories is going on It's a Small World in California's Disney Land and it was fun to take the kids on that. But the highlights for Yasmin and Isaac were watching the Winter Parade  (two and a half times! "Ok that's enough now guys - it's freezing.") with Princess Anna and Elsa leading the way and the real Father Christmas with a magnificent white beard bridging up the rear.
In the evening, we joined Mickey, Donald and all the other characters at Mickey's cafe and even got their autographs. It was a happy day. 
Just briefly, I remembered the horror of one day in hospital when Yasmin was undergoing yet more painful procedures and I couldn't see an end in sight.
I wanted to distract her from it all so we looked at Disney videos on Youtube and I promised her we would be going there soon and there would be better times ahead.
Although Yasmin finished her chemo treatment in October, we are still waiting to see a chest specialist, she is still having immunoglobulin infusions and had one two weeks ago accompanied by my parents and Isaac all having a day out at the hospital.
My parents came for  a delayed Happy Christmas as we were unable to go to them beforehand, as planned, due to Yasmin's fractured arm.
2015 should be the year that Yasmin's port comes out which for me really marks the end of treatment. 
In a few weeks, her arm should be out of its cast, her port should be out and she should be a normal healthy little girl once more.

Even the cough that has been troubling us since April has seemingly stopped over Christmas so it may be that it is nothing to be worried about after all.
During intense chemotherapy treatment, our world was often reduced to a single room, a hospital bed where our baby girl was fighting for her life.
Now, the world is slowly opening up to us again, with all its endless possibilities.


Shortly after our return from Paris after New Year, I was sitting in my newsroom when the awful news about the attack at the Charlie Hebdo office (and later the Jewish supermarket) came on the wires and television. It's impossible to write about our lovely trip to Paris without thinking of those who lost their lives and their families.

Saturday, 10 January 2015

A TUMULTUOUS CHRISTMAS AND A HAPPY NEW YEAR PART 1

As I didn't update the blog in December we have got a little out of sync. But here is our Christmas!

Mary with a broken arm
Isaac in his carol concert
Apparently we don't spend enough time in hospital. On December 15, six weeks after Yasmin finished her chemotherapy treatment she fell from the third level of a soft play at our gym to the floor, fracturing her arm. She had been seated chatting quietly with another girl at the time and simply fell backwards. The first aider at the gym didn't think there was anything majorly wrong but I know my daughter. After all she has been through she has a higher pain threshold than most and just because she wasn't making a huge fuss I knew that she was in pain. I took her straight to children's ward and sure enough she had a buckle fracture and was put in a cast. 
We finally got home around 10pm and Yasmin was due to be Mary in the school carol concert the next day. I told her she didn't have to do it but she was determined and laughed on the way to school 'I will be Mary with a broken arm.'
The carol concert was in the church and she had to sit in the nativity scene on the altar the whole hour in front of the whole school. How proud Andrew and I were. Yasmin missed her first ever nativity last year when she was in nursery as we had an emergency hospital dash with a high temperature the night before which I think ended up in a three day stay. (Don't want to speak too soon, but wow we have't had to do that in how long?) Andrew and I were absolutely gutted last year when she missed out on being a twinkling star. Here is the post from last year.
Seeing your child in their first nativity is one of the big rites of passage for a parent, so to miss out last year was devastating. It set us apart once more from the other parents getting on with their normal live and it felt like we were never going to get back on track.
Isaac also had his own nursery carol concert which was all chaotic cuteness with around 40 pre-schoolers singing carols and nursery rhymes all to their own rhythm.
Because of the fractured arm we had to alter our Christmas plans again. I had planned to take the kids to my parents up to Christmas Eve but due to Yasmin's hospital appointment for her arm we couldn't go which was a disappointment for everybody.
Christmas morning was perfect though. Both children were hugely excited by Father Christmas. Four is about the perfect age to experience the magic, Isaac is perhaps still a little bit young at two. 
There were squeals of delight when we found Santa's reindeer had eaten the carrots and everyone was happy with their gifts.
We enjoyed a beautiful walk in Epping Forest before lunch and it was one of those sublime moments when you feel everything is right with the world. I remember breathing it in and experiencing it fully.
Unfortunately, poor Andrew succumbed to a bug (possibly the norovirus) suddenly in the afternoon and completely missed his Christmas turkey for the first time ever. He was asleep in bed with a high fever all afternoon. So it was a strange kind of christmas - magic and mayhem in equal measure.

And you can find the latest post here.



Wednesday, 7 January 2015

THE SPARKLE RETURNS - HAPPY NEW YEAR!

Walking in Epping Forest on Christmas morning
Before Yasmin got ill and started treatment, she had the most stunning sparkling blue eyes framed by the long lashes inherited from her daddy. People would comment on them all the time. 
The sparkle completely disappeared in the past two years as the chemotherapy killed her cells and brought her to the brink of death. On steroids, her eyes would hollow and her pupils would be large and black. The rest of the month the colour in her eyes was diluted and dull. I had almost forgotten what she looked like with the sparkle in her eyes. I caught my breath the other day when I realised that the sparkle is back.
Yasmin looks healthier than she has done in almost three years. Her hair is thickening and starting to curl around her ears. She has more energy and the cough that has been plaguing her since April appears to have gone, just like that.
Isaac watched intently the other day while his sister was being pricked by a big needle so that her port could be accessed for her infusion. We had a day out at the hospital with my parents in tow. Hospitals, blood, needles and nurses are completely normal for both children.
Isaac has transitioned from the perfect baby stage to very cheeky and often naughty toddler stage. He pushes boundaries all the time then laughs and put his thumb up when you try to discipline him. He is adorable.
Yasmin and Isaac two years ago when Yasmin was Isaac's age
Andrew and I are both enjoying seeing his character evolve day by day. We can no longer compare his development with Yasmin's because at this exact age she was undergoing the most intense treatment, was completely bald and weak from chemo. 
I keep saying, "We missed this stage with Yasmin" but of course Yasmin didn't jump from age two to age four, it's just that her development went off at a tangent. And our minds were occupied with keeping her alive rather than watching her grow.

But we are almost done with all that. She is sparkling once more.
Happy New Year!
Christmas morning in Epping Forest

Thursday, 27 November 2014

THE END OF LEUKAEMIA TREATMENT BUT NO END IN SIGHT


Yasmin finished all of her chemotherapy and her treatment for leukaemia on October 31. But due to a number of ongoing issues it does not feel as though we are at the end yet.
The last chemo
Her port is scheduled to come out of her chest on December 10 and we had been hoping for a family escape to the sunshine for Christmas as we have not been able to have a proper holiday away since this began. I was focusing on that as marking a new beginning for us as a ‘normal’ family, without chemotherapy, without Yasmin having a port under her chest, without cancer, without worry.
We had also planned an end of treatment party for December 14.
However, Yasmin's consultant told us two weeks ago that her chest CT scan has revealed tiny flecks. There is no concern that this is cancer but as he is the oncology specialist and isn't sure what it is, Yasmin is now being referred to the chest specialist at Gosh. As Yasmin has had a cough since April which has been diagnosed as a chronic bronchitis, and this persists, there are concerns that the flecks may be a kind of TB that she may have contracted in a swimming pool. We never go swimming due to fears of infection so this can only have happened at our Center Parcs holiday in May.
So at present we are in a kind of limbo waiting to hear what the chest specialist thinks and therefore are expecting the port out operation to be delayed until after Christmas.
In addition, Yasmin has had to have a series of immunoglobulin transfusions. These take all day and her third was this Monday and are extremely unpleasant.
Celebrating the end of chemo with cake!
Despite feeling down about not knowing what is going on, we wanted to mark the end of chemotherapy at least with a little party with just the four of us and we had cake, candles, streamers and dancing.
Of course, it is good that treatment is at an end but as Yasmin is still having other treatments there is no sense of relief yet or a feeling of ‘It's over’.
It feels so unfair to Yasmin after saying ‘we're nearly at the end’ for months to get to the end but it still to be going on and her still having to endure awful procedures.
I made Monday's tranfusions 1000 times worse by accidentally knocking the needle out of her chest which meant she had to be reaccessed again with just cold spray and no anaesthetic cream and the screams of pain were horrific and all my fault.
Yasmin took it all in her stride. Withing minutes of screaming she was happily chatting to the nurse about Frozen.
I've been just too thoroughly fed up with it all to post recently. Just a while ago, I felt I couldn't go on until December 10 which has been our end point for two and a half years. And now we have no end point and this is just going on and on…
I don't want to give the wrong impression. We do not sit around in despair all day long.
Apart from her cough, Yasmin is healthy and running around, enjoying school and ballet classes. I am extremely fortunate to have just spent an incredible week in Tokyo for work and we make most of all the time we have together. 
Shortly after her CT scan - my beautiful wonderful super star
I feel exactly like a counsellor described to me one time - a split existence, a duality of emotion. It is nowhere near as bad as anyone imagines on the surface as you get on with life and laugh and joke. But really you can never put into words the horror of it all and it is far worse than you can ever describe. Both these seemingly opposite feelings occur at the same time. 
A friendly woman who started to chat to me in the hospital playroom the other week told me about her son and then casually asked why we were there. As most friends and acquaintance know about Yasmin, I don't often get to see the look of shock, horror and pity she revealed when I explained it was childhood cancer. Seeing your own pain reflected in the eyes of another was not a experience I want to repeat.
It is amazing how your levels of managing disappointment shift when going through something so prolonged and life changing as this. I certainly don't stress about the small and minor frustrations that seem to send other people into despair. Even the devastation we feel at each setback is short lived. Your brain adjusts and you somehow cope with what you have been given. As my wise cousin Jayne once told me, whenever you feel you can't take anymore, you find some more strength from somewhere to get through it. But almost all of this strength comes from Yasmin and Isaac. Yasmin who goes through so much and never ever complains and Isaac our perfect boy. 
There may be no sunshine but I have booked Disneyland Paris for New Year's Eve. We are lucky compared to many many families.
At present, we are all here. Really, that is all that ever matters.