Friday, 9 March 2012

2 more sleeps ..

I can't believe where this week has gone, I had meant to write in this blog a bit more often, but well the best laid plans often go out of the window.

Its been a busy week, I've become friends with a new family on facebook who's little boy Kyle was recently diagnosed with BRB. He's sadly lost an eye and is receiving laser treatment to his remaining eye. What I find amazing is that he's 8 and a half. Age 6 was indicated to be the upper age it can happen, and thats the milestone I'd mentally set for Harry but am going to have to rethink that one. They seem a lovely family and I hope we will become good friends, typical they're down south, I still have to find someone quite close to us.
Katy remains a good friend and I hope we can amass more people in raising awareness for retinoblastoma.

Harry had a visit from Lynn, his Visual Impairment teacher who he loves. They need to build a good relationship together as they will be spending a lot of time together. She is really pleased with him, he's becoming more mobile and we're learning what his sight limits are, he still whacks his head when he's rolling but he seems to have adopted a strange cock-eyed head position when he's in front of the TV. The 50" screen has to help!! His Occupational Therapist also came, she wanted to see what Lynn does with him. His physio is coming next week to go through the plan she's put together and then they will all come again just after Easter. We've got so many plans we have to do with him, and I know he needs it but sometimes it feels like we're not allowed just to let him be. Our lives are controlled by his many appointments and when one's over there's always another just around the corner. Its 12mths since we went back to the GP and she told us she was going to refer him to ophthalmology and ever since we've practically spent every waking moment working round hospital appointments.

I REALLY REALLY HATE BRB, and I am really scared of what it can do to children, and I live in hope Harry will be one of the lucky ones and just have to learn living with rubbish eyesight, the other outcomes are not acceptable.

Well, 2 more sleeps til Birmingham. Am sure all will be okay, it better had be.


  1. I admit I am jealous of Lynne. I want him to love me the most!!

  2. Hi
    Our 11mth old granddaughter has also recently diagnosed with Retinoblastoma. We are from Manchester.
    Our thoughts are with you all and little Harry.

  3. Hello Sandra, Lovely to hear from you.
    I may well bump into your family at Birmingham. Whats your granddaughters name? How is she doing? Its weird as you think you're the only one dealing with this evil cancer and then you meet the lovely families in the same boat and it somehow helps.
    Please keep in touch x

    1. Hello
      Her name is Macey, her mummy has started a page for her on facebook "Macey's Retinoblastoma childhood eye cancer"
      She is not doing to good my daughter has just phoned to say they need to take her back to hospital as she is not keeping any of her food down, poor little thing. They are back at Birmingham on mon 19.
      We have been told she has lost the sight in one eye, she is having chemo to try and save some of her sight in the other eye.
      It has helped us alot to know there are families who know what we are going through
      Sandra x

  4. Hanty Raychel, he loves you the most x he will miss you this trip x