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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Saturday, 1 December 2012

NEUTROPENIA


After a five-week induction and three-week consolidation, the next stage of Yasmin’s treatment was interim maintenance. This was supposed to consist of two months of oral chemotherapy at home with fortnightly scheduled hospital appointments for vincristine chemotherapy through the central line and two lumber punctures.
But as with consolidation, it did not quite go to plan.  During her first interim maintenance appointment at Great Ormond Street on October 22, Yasmin’s blood tests revealed that she was neutropenic. This is a word that most people do not need to be familiar with, but for parents of a cancer patient it is important that they know whether their child is neutropenic at all times.
A person is neutropenic when their neutrophil (a type of white blood cell) count is below 0.75. This happens because chemotherapy drugs reduce the production of white blood cells by the bone marrow. It means that the immune system is lowered and the risk of infection is therefore greater. It is not anything in itself to worry about but if a child develops a temperature while neutropenic it means an immediate hospital admission. Therefore, at times of neutropenia, the less contact Yasmin has with potential infections the better.
With Yasmin’s neutrophils at 0.5, the doctors decided to delay the start of interim maintenance until they recovered.
Yasmin skipping around Epping Forest in May 2012,
 one month before becoming ill
It had not been a wasted journey into GOSH, however, as Yasmin was at her most cheerful yet. She spent her time singing and dancing in the playroom and for the first time did not want to go home. The nurses, who we had by now become very familiar with, all commented on how chatty she was and how lovely it was to see her personality at last. It certainly was wonderful to have the old cheeky Yasmin back.
 One week later and Yasmin’s neutrophils had gone down to 0.1. A healthy person should have neutrophils between 1.5 and 6. Although her character retained its spark, with her pale face, dark circles under her eyes, uncertain shuffle, and straggly bits of hair, she looked like a stereotypical cancer child. Andrew had endless images of Yasmin on his computer and he admitted to me how hard it was to look at old photographs when she had been so healthy and well, taken at a time when we could never have imagined this would happen.
With her neutrophils still unrecovered by Oct 30, Yasmin’s consultant did not wish to delay interim maintenance any longer and decided to go ahead and start but we were instructed to hold off on giving her the daily dose of oral chemotherapy until her neutrophils were back on track.
We asked a nurse whether we had anything to worry about by the prolonged neutropenia, but we were assured that it is quite normal and her neutrophils should just start to recover by themselves at some point.
Along with the vincristine, Yasmin started a five-day course of steroids. This time there was no slow build up to bad behaviour. The effect was almost immediate, as if a remnant of the first steroids she had taken remained. Several hours after taking her first dose, she woke up in a steroid rage. Looking at each other, Andrew and I said: “Here we go again.” As Yasmin showed no signs of calming down by 11pm, Andrew took her downstairs to watch television until she fell asleep.
Yasmin’s intense rages continued over the next couple of days, with a lot of her jealousy aimed at her brother accompanied by screams of "I don’t want Isaac" whenever he needed a bit of attention. Fortunately, Isaac tends to smile at almost anything and didn’t seem at all troubled at the antipathy directed towards him.
We had become friendly with another family who live close by whose daughter by coincidental bad luck also has leukaemia. Two years older than Yasmin, she was more aware of her illness. When she next came to visit, she said to me that she had lost some of her hair but not as much as Yasmin. I noticed a flicker of recognition cross Yasmin’s face.
It was only days later when skyping nana and granddad that Yasmin mentioned it again. “I have leukaemia and I have no hair,” she said in a matter of fact way. She did not seem at all upset. I tried to broach the subject later when we were cuddling at bedtime but feelings are such a difficult topic for a two-year-old.
I simply said: “How is it with no hair?” but she just smiled and gave me her book to read. She had been choosing Jack’s Diary about the little boy who has leukaemia more frequently and she would enjoy it when we got to the end and he was all better. I am conscious that she is becoming more aware of the fact that she is seriously ill and what this means.

4 comments:

  1. Ah...neutropenia...we've often been there. In fact we're there now. Andrew's down to 0.2 and so is on no meds for the next week. Mind you, he's been down to zero before now. And steroids? God I hate steroids. Andrew has a 9 year old sister who used to take the brunt of it. Luckily his dosage is much lower now, and he can usually be calmed down with a nice meal of bacon, sausage, baked beans, black pudding, fried egg and fried bread. Yup, that's steroids for you.

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  2. Steroids are in many ways the worst part of the treatment for the parents!

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    1. Definitely! Andrew once ate a meal so filling that when he had finished he couldn't sit down because his stomach hurt...but he was still hungry! There is another nasty side to steroids that luckily is quite rare - Steroid-induced diabetes. It only occurs on high doses, and only if you're susceptible to it, but sadly Andrew was. It was diagnosed a week after treatment started, so if Yasmin hasn't got it then I guess she won't. It meant that for the first year we had to give regular insulin during steroid week. We don't any more, but he still only drinks diet fizz when he's on steroids, just in case.

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