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

Wednesday, 30 January 2013

ON SLEEP (OR LACK THEREOF)


Yasmin and Winnie settle in for the night
One of the most difficult aspects of Yasmin’s illness and treatment has been the impact it has had on her sleep patterns and therefore those of the whole family. Coming at the same time as the arrival of Isaac, it has meant Andrew and I have survived on little more than two to three hours sleep in a row for almost eight months. We are dealing with the stress of cancer mostly in a state of exhaustion.
Prior to Yasmin’s illness she was a super sleeper after I, in a state of mental collapse, engaged the services of a sleep consultant when she was nine months old. Up until then, she had woken us up every two hours to be cuddled or fed back to sleep: she was breastfed until one and therefore had got into the habit of feeding to drop off.
The wonderful sleep specialist Andrea Grace managed to sort Yasmin out, almost immediately, with a few simple changes to her routine – mainly that she should be put in her cot awake and allowed to settle herself. From then on, Yasmin snoozed for twelve hours a night undisturbed.
But this all stopped when leukaemia took hold.
As Yasmin’s doctors misdiagnosed her illness as reactive arthritis, our daughter was left in pain in her knees which became steadily worse over the course of two months. It was so bad that she would cry out in the night as though she had been kneecapped. Because of the pain, we were rushing her in and out of A and E at this time but were constantly discharged home with paracetamol. Yasmin was in so much agony she could not settle and Andrew and I took her into our bed where we would take it in turns holding her knees until she passed out.
When Isaac was first born, I would doze in the spare room with him so I could feed him through the night while Andrew tried to comfort Yasmin in our room. But once she was diagnosed, I ended up with both babies in with me. At this time, Andrew and I were being woken up every hour through the night.
One morning, after having hardly slept with the two children in my bed all night I got in touch with Andrea once more to tell her of our predicament. She kindly offered to come and help me with Isaac and advised we should only tackle Yasmin’s sleep once she has finished her intense phase of treatment in February.
As soon as Andrea had visited, Andrew and I established a proper nighttime routine for Isaac. Now, at six and a half months he is sleeping through all by himself in his cot for twelve or thirteen hours.
But Yasmin is another story. When she is on steroids, she wakes often through the night. And each hospital admission puts her bedtime up to 10pm due to the constantly disturbed sleep.
As her treatment has progressed, she has become more and more dependent on me and will only fall asleep when I am lying next to her. This can take an hour or more. I lay down with her at 8pm to try and get her to settle and am still there at 9pm or even 10pm – she calls out for me each time I try to creep downstairs to have some semblance of an evening. For the past few nights, I have given up and she is currently sat on my lap at 9.40pm playing with her lego.
Yasmin has not once slept in the lovely Minnie Mouse bed we bought for her when she turned two and we have no idea how to get her from our room into her own bed.

Tuesday, 22 January 2013

SNOW


Isaac in our snowy garden
The world has turned white. Schools are shut. Children, wild with excitement, sledge down the slopes in Epping Forest. Everyone is out making snowmen, enjoying the white powder.
I imagine the life we should be living. Yasmin, two and a half, cheeks flushed from fresh air and happiness steps carefully through the snow in her Wellington boots before minutes later screeching with joy as her sled picks up speed. Isaac, snug in his snow suit, chuckles to see his sister playing, and he tries to wiggle from my arms, desperate to follow.
But that life halted last summer. Instead, in our alternate universe - full of syringes, needles, drips, kind nurses and the smell of disinfectant - we are unaffected by the passing seasons.
Our daughter, drained from the latest infusion of bright orange chemo, does not have the strength to lift up from the sofa. Her stick legs are wasting away again from the inactivity and the previous week's sickness which stopped her eating for five days.
Her face has thinned, accentuating her blue eyes which appear almost black. Her nose, more prominent against her gaunt cheeks, reminds me somehow of a little mouse. I call her 'my little mouse' as I carry her around the house. I can feel her bones sharp as she presses against my body, holding on tight with the little energy she has. She clings to me all day and calls out whenever she wakes in the night, which can be every hour.
Her face resembles a skull with its bare forehead and hollowed eyes: it is as though chemotherapy must take her to the brink of death in order to restore life.

Saturday, 19 January 2013

DELAYED INTENSIFICATION DELAYED



Isaac visits his big sister in hospital
No matter how many times we have to do the mad hospital dash, it is always with the same sheer panic.
The first two weeks of intensification were relatively painless. Despite the high dose of steroids in week one, Yasmin’s mood swings were not as bad as they had been before, or perhaps we are better prepared now. Andrew was around quite a bit and he took her to her Great Ormond Street appointments while I stayed home with Isaac.
But she did look a completely different child to the lively girl who, just the week before, had excitedly opened Christmas gifts. She was tired and took on the look that all children on heavy chemo share: dark, deep inset eyes, skin so pale it almost shines, all spark and energy gone. Her hair, which had been growing back, fell out again.
Yasmin enjoying our garden before latest
hospital admission
The following week, I found if difficult to manage again with the two children at home all day. After all of our Christmas visitors had gone and Andrew returned to work, it was a shock to get back to so-called ‘normal’ life.
It was a struggle just to get both kids, fed, clothed and in the car to go anywhere. One morning, after battling to get them out for Yasmin’s yoga therapy class, I completely lost it when I got to the children’s centre to find that the car park had been taken over by work men and articulated lorries, so there was nowhere to park.
“I have a child with cancer in the car who needs to get to a therapy class, where am I supposed to go?” I screamed like a woman possessed at the men, who were being anything but helpful, before I burst into tears when the family support worker came to my rescue.
Yasmin was more difficult despite being no longer on steroids and I wondered whether the drugs were still in her system or whether it was just a symptom of the terrible twos.
We did have some good news as we bought a new car. Our pleasure was somewhat marred when, on the way back from the garage after Andrew had just picked it up, Yasmin was violently sick all over the freshly valeted seat. We checked her temperature which was normal and spoke to GOSH who advised us to monitor her. She improved over the next couple of days, although she was very grumpy. I recognise this now as a sign of a brewing illness.
Four days later she seemed lethargic and when I took her temperature it was 38.6. As her neutrophils were down to just 0.1 - meaning a suppressed immune system - I had to take her immediately to hospital.
People are always telling Andrew and I that they don’t know how they would cope in these circumstances. But of course, there isn't any choice. You can’t just walk out and leave your children to get on with it.
Some days I feel that as a family we are all coping well. But there are many days when I don’t feel like I am coping at all and other days when I simply do not want to cope with it any more. Instead, I long to be able to put the children to bed early and go dancing with my husband and get wildly drunk, or eat a meal with friends at a chic restaurant. Andrew and I rarely drink these days, let alone go out socially together, as we never know when we may have to take Yasmin into hospital.
It seems that each time I reach the point when I don't feel I can cope any more, Yasmin has an unscheduled hospital stay. When this happens, the adrenaline kicks in and suddenly you can deal with anything: the lack of sleep, the stress. The priority is getting our daughter well and home once more.
Yasmin was very sick for the first couple of days and continually vomiting. But by the third day she was feeling better. As her neutrophils were so low, she was confined to her room so intense boredom replaced the sickness and she was desperate to get home, as were Andrew and I. We have lost count of the number of weekends we have spent at our local hospital since last June.
We took it in turns in sleeping at the hospital or coming home to look after Isaac. We did the switch over around 7pm which was usually Isaac's bed time so instead of being tucked up in his cot, he was being driven around in the freezing cold.
But, of course, he wasn't bothered and instead, enjoyed the extra hour he got to smile and coo at his parents. Isaac turned six months on January 8 and is now getting into position for when he starts to crawl as well as scoffing down three meals a day. He remains the most chilled out, happy baby.

Wednesday, 9 January 2013

ITV'S NEWS REPORT ON YASMIN



video

She's only two, she has leukaemia, but she's helped raise more than £20k to help other children.
Yasmin Parsons was diagnosed with cancer just four months ago and faces two years of chemotherapy.
But her family has been dealing with that trauma by focusing on other families.
They've been speaking to our reporter Toby Sadler.

Saturday, 5 January 2013

YASMIN BECOMES A MEDIA SENSATION

The Parsons with Eddie Mulholland and Kelvin Bruce, who organised the
photography auction with the cheque for £21,500 raised for charity.

We started 2013 with a flurry of excitement.
New Year’s Eve was a quiet night in as Yasmin was wiped out with high levels of chemotherapy but two days later she featured in the news for raising a massive £21,500 for Great Ormond Street Children’s Hospital in just four months.
The story appeared on BBC online, the Daily Mirror, The Times, The Telegraph, the Evening Standard, the Metro, MSN, and most local newspapers.
In the morning, I was on BBC London Radio and following an afternoon spent with television crews in the house, Yasmin’s story also made ITV and BBC London news.
Thanks to the publicity, more and more money has been pouring in to our Justgiving Fundraising page.
We would like to take this opportunity to thank everyone who has donated. Every single penny goes to making a real difference to children’s lives by improving equipment and facilities at the hospital or by funding vital research.
It is not so long ago that very few children with acute lymphoblastic leukaemia survived. Now, thanks to the improvements in treatment and facilities, survival rates stand at 90% plus.
There are still many horrendous diseases out there where the prognosis is not as good. We want all sick children to have a chance of a full recovery and while they are being treated we want them all to be able to have the same standard of care as Yasmin is receiving at GOSH.
The £21,500 raised includes more than £10,000 from the photography auction organised last October, all of the gift aid from donations to the blog, as well as money raised by neighbour Estelle, who inspired by Yasmin's story pledged to climb Mount Kilimanjaro for GOSH with four friends. They have almost met their target of £3000. Many thanks Estelle!
If anyone else would like to organise a fundraising event in Yasmin's name do get in touch. We can publicise any events here and you can put the money raised directly onto our fundraising page or you can set up your own page and we can link the money raised.