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 is here or you can read how we 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 money for the different charities that have supported us during the most difficult of times. We have helped raise more than £28,000 for Great Ormond Street Children's Hospital where Yasmin is undergoing treatment. Anyone wishing to donate can do so 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 and I will be climbing Ben Nevis in 2014! You can get more information on Facebook or you can follow me on twitter here.
The blog has featured in national newspapers and magazines while the BBC covered our fundraising here and ITV here.

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

Thursday, 28 February 2013

REASONS TO BE CHEERFUL


This week is a glorious week. After six, long, often horrendous months of intense, at times terrifying and at others painful, treatment, Yasmin is scheduled to start maintenance tomorrow. This means intense chemotherapy is over and 18 months of maintenance chemo will begin.
In the early dark days and the times when our lives have been a living nightmare since then, as we juggled caring for a new baby with our daughter’s hospital admissions, Andrew and I consoled ourselves by saying as long as we can get through this first six months and get to maintenance everything will get easier. We just have to get through this.
Now, here we are.
As the intense chemotherapy is dependent on blood counts, Yasmin's treatment has been delayed several weeks throughout the course. The start of maintenance is also count dependent so could have been delayed yet another week. I didn’t realise how tense I was about this until the text came through from the nurse with the weekly blood count results. As soon as I saw the numbers stating Yasmin’s neutrophils were high enough to begin, I burst into tears and then sobbed uncontrollably for ten whole minutes while my daughter looked at me in alarm. A cork had been popped from a highly pressurised bottle. The relief was immense.
Yasmin combing mummy's hair
“It’s ok,” I said. “I’m happy. I’m crying because I am happy. When daddy comes home tell him we have good news.”
Yasmin is fitter now than she has been since last June. Her legs, which had wasted away after she didn’t walk for three whole months, have taken on muscle definition and can now support her well when she starts to dance, one of her favourite activities.
She is due to start nursery two mornings a week from next week and after eight months at home or in hospital she is looking forward to making new friends.

Sunday, 24 February 2013

ON BALDNESS

Yasmin started losing her hair within weeks of chemotherapy treatment which began six months ago. (I first wrote about this in the Telegraph.) Although her hair thinned out pretty quickly, she did not go bald until months later, in December.
Because the types and amounts of chemo that Yasmin has had changes all of the time, some weeks it starts to grow back as soft down only to thin out again a week or two later. At times there are longer straggly bits, while at others her head is egg-like.
As the hair loss has happened gradually, it has been less of a visual shock to Andrew and I than when it first fell out in clumps in my hand.
When Yasmin is at her most bald, it is really only when we venture out of the house that the reality of it, reflected in the eyes of strangers, hits us.
Of course, everybody looks at a bald child. I always wonder what people are thinking when they see us. I usually suppose that they assume that our daughter has cancer and then I wonder what they think about that.
But apart from once, when a woman of about twenty, old enough to know better, laughed and pointed to her friends behind Yasmin’s back, not realising that I could see, we have not had any negative reactions.
Last week, I took Yasmin and Isaac to the café at the park. As it was half term, it was packed with children, glowing with rosy cheeks from running around in the brisk air. I rehearse to myself my response if any of them ask about her hair.
But none of them did.
Yasmin feeds Isaac his bottle
Yasmin has only mentioned her hair loss about three or four times and appears to remain unbothered by the whole thing. It really is the least of what she has had to put up with. Her main concern about it is that she has been unable to wear hair clips. Today, when I remarked that her hair looked to be growing back because she has one long tuft in the middle, she immediately said: “Can I put my clip in?” “It’s not quite long enough yet,” I smiled. “But you will be able to, soon.”
The cocktail of strong chemos that made up Delayed Intensification have all been consumed and injected. Yasmin is having a whole week off any drugs before she starts the long awaited maintenance treatment next Friday – all being well. I have delayed her start at nursery for one more week to keep her well enough for maintenance treatment to begin.

Sunday, 17 February 2013

HOME CARE

The community nurse, who visits every week, administering chemo at home

Andrew and I took Yasmin and Isaac into Great Ormond Street a week ago for a full day of chemotherapy treatment. These days Yasmin spends her time on Safari ward driving up and down the corridor in one of the toy cars or playing with another little patient in the playroom. But because she had to remain attached to a drip for almost five hours - the longest infusion she has had - we went prepared with a bag full of toys and a collection of her favourite DVDs to use with a player borrowed from the playroom. This ensured she stayed in or close to her bed.
A long day ensued. We arrived around 10.30am and were not able to leave until after 7pm. The chemo she was having via an infusion through her line - Cyclophosphamide - was so toxic Yasmin had to be hydrated through a drip for three and a half hours. It came with a sheet with a list of scary side effects which we read and then shelved to think about another day.
Isaac enjoyed rolling around on Yasmin’s bed with his sister and the nurses commented on how they had not heard him cry once. He is such a good natured baby. Yasmin, too, was impeccably behaved and did not complain once of being bed bound for the day. As we walked back to the car through the lively streets of Bloomsbury, our daughter, instead of being wiped out as we had imagined, was cheerful and declared on passing a bright pub, filled with people and laughter, that she wanted to go in.
But ten minutes into our car journey home, both babies were fast asleep. So, we rewarded Yasmin with a family lunch out at a restaurant the next day instead.
At this stage of treatment, Yasmin has to have a shot of another chemo - Cytarabine - every day for four days in a row, for two consecutive weeks. Fortunately, we don’t need to go into hospital for this. Instead, the community nurse, who comes every week to do Yasmin’s bloods, comes to administer the drug. 
Last week, every morning, over breakfast, we got into the routine of the nurse coming to give the chemo. As Yasmin knows she is allowed to watch YouTube on my phone as a distraction to the fear and pain, she immediately asked to watch Miss Piggy as soon as the nurse arrived. 
Yasmin also has to have oral chemo every day for two weeks.  Andrew and I had been expecting sickness or lack of energy from the build up of having three different chemos in such high doses. But, apart from the first night when she vomited in bed, she has remained well and is full of energy. She has, however, lost her appetite for the first time in months, and is picking at her food. She has lost a lot of weight.
As we are so close to the end of this intense phase of treatment - now just two weeks away - we have had a semi-ban on children visiting due to all the germs they carry from nursery. Yasmin has had four unscheduled hospital admissions since we started treatment last August and I am hoping we can get to maintenance without any more.
The limitation placed on visitors means that I am home alone with both children most days without the diversion of children’s groups and other mums for much needed adult company. As my parents live too far away to visit regularly and we moved so recently that I do not know our neighbours, I feel isolated and, at times, unbearably lonely. 
The lack of sleep and the stress of living with cancer for six months has also taken its toll on both Andrew and I and is manifesting itself physically. We look permanently knackered, quite different from the fresh faced, carefree couple photographed at Yasmin's first birthday party.
Isaac is now more aware of his surroundings and of his place in the family and is therefore, quite naturally, demanding more attention. Having to look after him while keeping Yasmin entertained all day indoors with no friends of her own age, takes up an enormous amount of energy. I must remain upbeat all day long which means I have to suppress any sad emotions, my fears.
At yoga the other night, I thought I had arrived at the wrong time and I was surprised when this insignificant stress made me cry in the class. A beautiful parcel sent from Japan for Yasmin, which included a miniature card display for Girl’s Day which is celebrated on March 3, for the "health and strength" of daughters also made me weep due to the thoughtfulness and sentiment behind the gift. All the unshed tears have built up inside me and are waiting to spill out at the most inopportune moments.





Thursday, 7 February 2013

LIFE ON FAST PLAY




It is more than eight months since Yasmin became ill and six months since she started chemotherapy treatment yet it feels like less than three weeks, rather than three seasons, as though we have been living our lives on fast play.
The developmental difference between a two-year-old and a three-year-old is immense: in this time, our chubby, confident, toddler has transformed into a little girl. But, because her appearance alters dramatically, week by week, due to her drugs and level of sickness, it has been hard to register which changes are brought about naturally by Yasmin simply growing up. 
In the week following the third round of orange chemo Doxorubicin, she remained on the sofa, listless. Her eyes appeared haunted and at times unbearably sad. She looked much older than two and a half.
One night on the way up to bed, I hugged her and promised her that she would get better and we would be able to have lots of fun and I would take her to visit Peppa Pig in her house. This appeared to cheer her up and a short while later, she repeated with a smile: “I’m not better yet, but I will get better and then we’ll have some fun.”
She was so tired she would ask to go bed at 6pm only to wake up an hour or two later starving hungry. She was back on a week’s course of steroids and was eating huge amounts again. As with the previous times, she craved only certain foods and her latest food addiction was cheese on toast. She was averaging eight slices a day along with three to four Weetabix and portions of whatever Andrew and I were eating. This meant that her frame altered over the week from painfully thin to chubby with a pot belly. Because my mother, who was visiting, told her she needed to grow a ‘lovely fatty belly’ she was delighted with the results and kept lifting her top up to rub her tummy.
After seven, long, boring, days where I was housebound with the children, Yasmin’s energy returned and she gradually became her normal, happy, self again. She excitedly pulled her boots on and said she wanted to play outside and build a snowman or a snow dog. The snow, which had lasted for almost the whole week, all melted away, just the day before. But Yasmin was pleased to be out and able to play on her swing and slide.
She has remained well for the past fortnight which has meant Andrew was able to do a photo shoot with the kids at home and I have been taking them both regularly to the park. Isaac is so happy to be out, looking at trees blowing in the wind. He has spent so much time indoors. He is seven months old tomorrow and has cut his first tooth. We will celebrate his birthday with a family trip to Great Ormond Street.
Yasmin was due for her most intense dose of chemotherapy to date last Friday but because her neutrophils were down to 0.6 her treatment was cancelled until tomorrow.
As we are expected to be there the whole day, Andrew is also coming in. We imagine Yasmin will be wiped out once more. But as long as tomorrow goes to plan we are then only three weeks away from maintenance treatment. A step closer to a normal life.