Eleanor’s chemotherapy schedule is split into two parts. The first is called ‘Induction’ which covered the first 24 weeks of her 18 month schedule. This began with 10 straight weeks of weekly chemotherapy, followed by treatments on week 13, 17, 21 and 24.

From week 25 (which begins on the 3rd July) we move into the second part which is called ‘Consolidation’ During this phase she has 3 weeks of weekly chemotherapy followed by a 3 week break and this continues for just over 12 months.

We are now at the end of the induction phase. I simply cannot believe how fast the time has gone and now we have reached this juncture, I feel like I have taken a big deep breath and started to reflect on the last 5 months of our lives.

People say to us all of the time, “I just don’t know how you do it, I’d be a mess” and the truth is, you probably would be a mess, but you would still do it. You wouldn’t lock yourself in a room and leave your child to fight alone, I don’t believe any parent would. Yes you will find it hard, yes you will probably at times think your child is going to die, but you will still push on and you will still fight alongside them until your last breath.

There was a point right at the start when I thought I would never understand all of the medical jargon, that I would need to get a degree in nursing to even begin to make sense of any of it, but now I do understand the majority of it. I can usually reel off her last blood counts with the knowledge of what each one means and it may have been daunting at the start, but that part has become much easier with time.

Some other things become easier with time. Instead of having to hold Eleanor down screaming when she has to have her port accessed, we now just have to talk to her, calm her and hold her arm or t-shirt out of the way so it doesn’t touch the part the nurse has just made clean and sterile. I always hold my breath until that needle is in, every single time, and I have lost count how many times that has been now. The process is getting easier, but it will never be easy to understand why she has to go through it.

You have a million people around you praising you for your strength and positivity, spurring you on, helping you over each hurdle. It’s amazing and heart warming but it also has kind of a negative effect. What if you have a day where you don’t feel strong? A day when everything is just too much and your haunting negative thoughts are overwhelming. A day where you just want to scream because it’s all so incredibly unfair. Will these people be disappointed in you? Will they lose their admiration? Will you lose their support? Because let’s be honest, it’s much easier to support someone with a smile on their face than someone crying into their coffee!

I think I am naturally quite a positive person so it comes easily  to me to be happy and positive and see the best in a bad situation. There are days when I do feel a bit hopeless though, I look at little girls riding along on their scooters or bikes with their parents trailing behind, playing in the park unaided or sitting quietly and watching Disney films and it breaks my heart that Eleanor misses out on those things. Those things that when you become a parent you just take for granted your child will eventually do. I feel jealous of people when they complain that their child has a cold. I wish Eleanor just had a cold. I wish I could give her some Calpol, a cuddle and it would all go away. But it won’t. When someone takes their child to the cinema to watch the new big film. I’m honestly dreading when the new Frozen film comes out. Eleanor loves Frozen, she was and still is a huge Frozen fan but she won’t be able to watch the new film. When all of her friends at school are talking about Elsa’s new dress it will mean nothing to her.

Thankfully these days are rare and when Eleanor smiles her beautiful brave smile or laughs her infectious laugh, all the pain just goes away, back into a little box inside my head, where I hope, one day, it will be able to stay.

  1. Tessa 28th June 2015 at 21:58 - Reply

    Love and hugs to you and Tim and Princess Eleanor ❤️❤️❤️ We are all still here for you and looking to share your blog gives us an understanding of how hard this journey is that you are all on if you want to rant then you do so , you are never far from my thoughts and heart love to you all x

  2. Nick O'Hara Smith 30th June 2015 at 04:15 - Reply


    You can rant and rave among those who love your family (thousands of peeps) and it won’t diminish their support for you, Tim and dear Eleanor.

    The work you are both doing to get the message out is nothing short of fantastic and Eleanor is receiving the kind of support and love that must be the envy of many!

    I am sure medical advances will give Eleanor sight again at some point when treatment has ended for the tumour.

    We know this is a long tortuous road for you all and I for one, absolutely guarantee you will not walk this road alone.

    You have a wondeful family!

    Much love to you all! xx