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.

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

Monday, 29 October 2012

STARTING ORAL CHEMOTHERAPY


As Yasmin recovered from her port operation in the hospital bed, the pharmacist came to talk to us about the oral chemotherapy our daughter had to start that day and would be on for the next two years. As it was a daily dose, we would be administering it ourselves at home. The pharmacist explained that we had to take extra care. We were advised to wear rubber gloves in case the toxic medicine spilled onto our skin. We also had to be careful in disposing of Yasmin's nappies because of the toxicity of her urine. This only made us worry about what it was doing to her little body.
It was the day before the Liberal Democrats conference which Andrew would be attending in his capacity as a news photographer and a hilarious video of the Party leader, Deputy Prime Minister Nick Clegg, making an apology speech had been turned into a song and had become a YouTube hit. Andrew hadn't seen the video yet so we watched it on his laptop with Yasmin. She immediately also started singing the catchy chorus: “I'm sorry, I'm sorry, I'm so so sorry.” This cheered us all up.
As Yasmin hated being in the hospital, we were hoping to get home that day but as she had been running a high temperature, she had to stay in another night to be monitored, to everyone's dismay. Andrew had to get to Brighton by 8am the next day and I needed to get home to feed Isaac at night so we were left with a logistical nightmare. In the end, I went home at about 8pm and returned with the car for 7am the following day, exhausted from the night feeds.
A very fed up Yasmin was already up and positioned in her buggy, which had become her refuge over the months of illness. She repeated: ''I want to go home," for five hours straight until her temperature came down and the doctors were satisfied she could leave.
As soon as we were out of the door, she brightened up and was incredibly chatty in the taxi, prompting the driver to marvel that she was only two. It is true that Yasmin talks more like a four year old than a two year old.
Once home we went to the supermarket for supplies and treats, one of Yasmin's favourite activities. She was full of beans laughing in the trolley as she danced with a jar of pesto while making up songs.
An hour after she had eaten her dinner I put on yellow washing up gloves to give Yasmin 2ml of Mercaptopurine chemotherapy through a medical syringe. Yasmin had got used to taking a constant stream of medication by this stage and took it more or less uncomplainingly. This one obviously tasted horrible as she pulled a face before quickly drinking from her beaker of juice.


Wednesday, 24 October 2012

GETTING A CENTRAL LINE


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Yasmin with her wiggly
When Andrew and I were first given Yasmin's leukaemia diagnosis we were shocked to find out that at day 28 of treatment she would have a central line fitted into a vein near her heart into which chemotherapy could be administered and blood taken.
It was too much to take in. In the space of a few weeks, we had gone from having a healthy child, to a very ill child, to a child with a life threatening disease who would need a permanent medical device fitted under her skin for two whole years.
It was explained to us by one of the doctors in a matter of fact way, but it really brought home how intensive Yasmin's treatment would be and how very ill she was. Like the hair loss, it would also be another obvious outward sign of cancer.
However, after four weeks of horrendous cannulas in hands, feet, and a vincristine chemotherapy spill into the tissue in her hands, it became clear why a central line was far preferable. As strange as it sounds, Andrew and I couldn't wait for it to be fitted so that Yasmin wouldn't have to go through the trauma of cannulas anymore.
We were given the option of a Hickman line where the silicone rubber tube is tunnelled under the skin and remains there or a small implantable port in the chest which is accessed weekly by a special needle. This would mean the tube would only be there when the port was accessed. We decided to go for the port as it would mean that Yasmin would be able to go swimming and have a bath when the port was not accessed.  It also carried less risk of infection than the Hickman line.
While under, Yasmin would also have the key Minimum Residual Disease test. This would tell us how well her body had responded to the first four weeks of treatment and would determine her treatment plan for the next two years.
As it was a big operation, Yasmin had to stay in overnight, and so, one month after getting her diagnosis, we found ourselves back on her old ward.
At the time of diagnosis, Yasmin had barely eaten for a month. She was painfully thin at just 10kg, with her long curly brown hair pulled off her gaunt face into a ponytail. Now, after a month on steroids, her appearance had completely altered. She had a thinning boyish crop and weighed in at 12.8kg with a round belly and puffy face.
The week before she went in for the operation I had prepared her by reading her a book called Jack's Diary which explained in very simple terms what it was like to be treated for leukaemia. Yasmin laughed when we got to a page with 'naughty' blood cells with funny faces and she started to say to people she had 'leukema'. In the book, the line was called a Wiggly so I told her she would soon have a Wiggly worm to play with and we both sang 'There's a worm at the bottom of my garden.'
On Thursday, September 20, Andrew stayed overnight with Yasmin and I joined them the next morning, leaving Isaac with Grandma Sandra once more.
After coming round from the hour long operation, Yasmin was very distressed and steroid-hungry, her chest all bloody. It was upsetting to see.






Sunday, 14 October 2012

FLEET STREET'S FINEST RAISE £10,000 FOR GOSH


Andrew auctions his own picture

Fleet Street photographers raised an astonishing £10,785 in just a few hours for GOSH by auctioning off prints of their best-known and most creative images.
A portrait of American country singer Johnny Cash by Peter Macdiarmid and a signed print of a dust storm in Maseru, Lesotho, by Magnum photographer Ian Berry were among the prints ferociously fought over by a roomful of snappers.
Other iconic photographs at the sale included Bobby Moore lifting the World Cup in 1966, Madonna kissing Britney and the first shot of Peter Sutcliffe, the Yorkshire Ripper, after his arrest.

Johnny Cash by ©Peter Macdiarmid
After hearing about Yasmin’s leukaemia diagnosis, Andrew’s news photographer colleagues immediately wanted to do something to help. Many were extremely generous in donating some of their most prized images and equally generous in bidding for each others work.
Andrew donated three photographs of David Cameron signed by the PM and another signed print of London Mayor Boris Johnson.
Oxford Street shoppers in the snow by ©Steve Burton
We also managed to come away with original prints of Ronnie Wood and Keith Richards on tour and a black and white of John and Yoko on their famous honeymoon bed-in. I was also extremely pleased to snap up this lovely image of shoppers in the snow on Oxford Street by Steve Burton.
A huge thanks to Kelvin Bruce and Eddie Mulholland for organising, Edmund Terakopian for the raffle which raised £1350, Richard Chambury for his role as auctioneer and to all those who donated their brilliant work and to everyone who bidded.
Watch this space for details of future events, including an online auction to enable more people to have a chance of owning their own prints.

Sunday, 7 October 2012

ICONIC PHOTOS TO BE AUCTIONED TO RAISE MONEY FOR GREAT ORMOND STREET HOSPITAL


©Mirrorpix
Iconic photographs ranging from Bobby Moore lifting the World Cup in 1966 to Madonna kissing Britney are to be auctioned to raise money for Great Ormond Street Hospital.

After hearing about Yasmin’s leukaemia diagnosis, Andrew’s news photographer colleagues have been extremely generous in donating some of their most famous shots for the auction to be held from 7pm on 11/10/2012 at The Dog House, 293 Kennington Road, London, SE11 6BY.

© Max Mumby
Details of the event can be found here and a preview with some of the pictures here.
© Paul Edwards

Thursday, 4 October 2012

WORST BIRTHDAY EVER


Sept 10  Andrew and I celebrate our birthdays just five days apart although - it pleases him to point out - he is one year younger than me.
This year Andrew’s birthday, on September 5, was the first really lovely day since our daughter had fallen ill. As she is not able to go to play groups, her childminder, or to start nursery yet, Yasmin is desperate for company of her own age. Andrew’s birthday was the first day one of her little friends came to pay a visit and the two girls played happily together. It was my first sense of normality since this had all began.
Following our guests’ departure in the evening, Andrew and I ordered a takeaway and made a birthday toast with prosecco as Yasmin started to tentatively walk around the house. Watching her taking the most steps in months, albeit very wobbly, was surely one of the best birthday presents possible.
Sadly, my birthday on September 10 was to be spent at Great Ormond Street where Yasmin had to have another dose of intravenous Vincristine chemotherapy. But we were told we would only be there for a few hours and we planned a mother and daughter pasta lunch in a restaurant as a treat afterwards.
Celebrating my birthday after a long day at the hospital
Grandmother Sandra came to care for Isaac and Yasmin and I set off together on the tube. As usual, she was alarmed to find herself at hospital once more and even more so when anaesthetic cream was applied to her hands, already full of pricks from all of the previous needles. Forty-five minutes after the cream had been applied one of the doctors came to insert the cannula. But digging around in Yasmin’s vein for 20 minutes or so while my daughter screamed: “It’s hurting,” proved fruitless, as the doctor was unable to get the cannula to draw blood.
Several doctors and nurses had already explained to Andrew and I how important it was that the cannula was able to flush and draw blood from the vein as, if not, there was the risk of the Vincristine getting into the surrounding tissue.
A specialist phlebotomist was called and the hour-long process of applying cream and waiting for it to take effect was repeated. Thankfully, this time the phlebotomist managed to insert the cannula straight away.
But when the doctor came to put the Vincristine in, Yasmin began screaming that she was in pain and it seemed to take hours, although it was probably more like half an hour. The doctor and nurse were talking in low voices about whether it was bleeding back. When the doctor finally finished, Yasmin’s hand suddenly ballooned around the cannula and the doctor ran out of the room to get a member of the plastics team. I jumped up behind Yasmin’s chair so she could not see my panic and tears and managed to mouth to the nurse: “What is the problem?”
She explained that there was a possibility that the Vincristine had spilled into the tissue. For ten nerve-wracking minutes I imagined a doctor running in to amputate Yasmin’s hand, before the nurse reassured me that the likelihood was that it would be flushed by making lots of tiny pin pricks into the hand.
I tried to distract Yasmin in the playroom for a further awful 45 minutes while waiting for the plastic surgeon to arrive. When he saw the hand, he immediately said that it was nothing to worry about, that in a few weeks the skin on the surface would peel away but there would not be any serious damage. 
This was a huge relief but Yasmin was thoroughly depressed at spending all day in the hospital by this time and started shouting she wanted to go to the restaurant for pasta.
We finally left the hospital at 4.45pm, jumped on a very crowded tube to get back home and called at a fabulous Italian near our home for my birthday meal. With the steroids still in full effect, Yasmin insisted on eating a ready meal spaghetti that she knew I had in my handbag - much to my embarrassment - before her children’s meal arrived, but she devoured that as well.