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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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.

2 comments:

  1. This is so hard on you. Hellish and impossible to do anything but what you're doing. But it must be killing you. Sorry.

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  2. Yasmin, Andrew and I all currently up watching the news! Less stressful than trying to get her to sleep!

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