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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Monday, 4 March 2013

STARTING MAINTENANCE


Yasmin in the playroom at GOSH
Andrew, Yasmin and I went to Great Ormond Street last Friday for the start of our daughter’s maintenance treatment.
It was almost six months to the day when we first travelled there, shattered and worried sick, after ten days at our local hospital, to see if we could find out what was wrong with our seriously ill daughter. At that time, Yasmin couldn’t walk and remained curled up in pain and fear in her buggy, her face pale, her long hair matted around her sweaty head.
This time, our cheerful little girl, no longer a toddler, confidently ran the length of the corridor, eager to get to the playroom.
And although the drill was completely the same as the last several times we have visited, everything felt slightly different. We felt different. As a blog reader whose son also has been treated for leukaemia put it: “Welcome to the other side of the Dark and Gloomy Woods! You'll never need to go through them again.”
We had reached the other side.
Although we are relieved to get to maintenance, medical treatments will still remain a huge part of our lives for the next eighteen months.
As our haematology nurse explained, the tests that Yasmin has had throughout her treatment show that the leukaemia has gone. The next 18 months of chemo is to ensure it doesn’t come back, it should destroy any stray leukaemic cells and it will also train the bone marrow to grow healthy and strong.
The best news is that Yasmin is now at 97% for complete cure.
The bad news is that she must still have the following: daily oral chemo, weekly blood tests that involves her port being accessed with a needle and weekly antibiotics. Once a month, we will go to GOSH for Vincristine chemo through her line which is taken with a five day course of steroids. Yasmin is on steroids now and although the doctors indicated that because it is for a small length of time from now on, you don’t get the full effects, this is incorrect! Our daughter is incredibly bad-tempered on steroids. They increase her appetite and, an aspect I had forgotten, they make her wee so much at night she wets the bed through her nappy. This means I have to remember to get up and change the nappy to avoid changing the bed sheets, which I had to do last night at 3am. Steroids, five days a month for 18 months, is not a fun prospect.
Once every three months, we will be back in GOSH for a lumber puncture for chemo in the spinal chord. We also must avoid contact with chicken pox and measles, be constantly vigilant when Yasmin’s immune system is low and if her blood counts fall below a certain level, she will need a transfusion.
But, 18 months from now, that should be it. We will not dwell on any other possibilities. Our date for final treatment is October 30, 2014.

7 comments:

  1. Ho Ho! We love Vincristine and Steroid Week...not! Vinc makes their legs ache while the steroids make them grumpy. Not a fun combination.

    October 2014 eh? Only 9 months later than Andrew, who officially finishes Jan 14 the same year. Boys take a year longer than girls.

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  2. RE: Count Dependency. In the early stages you look on wikipedia and find out what a normal neutrophil count is (2.5 to 7.5). Then you learn what neutropenia is (under 0.7 or 0.5, depending on the hospital you're at). Then you get told that your child's neutrophils are 0.4...and a week later that they're 0.1. And when they get to zero...well, it feels like a disaster!

    Our Andrew has currently dropped to 0.7, so he's on 50% dosage. But due to a phrase I have coined - "Neutrophil Lag" - his figures will probably still continue to drop and he may well be down to 0.1 or below by next week. But you know, now we're into Year 3, we kind of think "meh". He's been zero before and caught a cold, and it didn't mean much. Things are much more relaxed after the first year (or even the first 18 months). Whether this is because you just get used to it all, or because you simply can't sustain that level of heightened emotion, I'm not sure. But the days of blood transfusions and bags of platelets (or as Andrew calls it - "platelet soup") are long gone.

    ReplyDelete
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  4. I have been reading your blog and I've lived a very similar situation, but unfortunately my end was not happy. When I was 8 months pregnant of my daughter I found out that my son 1 year and 8 months had leukaemia, the same kind of your daugther, he started the treatment and he was doing well, when he was 1 week away to start the maintenance, his temperature has risen and he needed to go to the hospital, but he didn't come back. He passed away 1 month ago. I wish all the best for you and your family, I know sometimes we think we cannot carry on, but we need to be strong for them.

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    Replies
    1. Dear Adriane,
      Thank you for your message. I am so very sorry to hear about your little boy. It is so unfair.
      I know there is nothing I can say to comfort you.
      I want to raise more money so there is a cure for every child that has leukaemia.
      Sending you lots of love for you, your family and your little girl.
      Karen
      xxx

      Delete
  5. You are doing a beautiful job to raise money. I would like to do something to help too. Thank you for your message.
    Adriane
    Xxxx

    ReplyDelete