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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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.





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