Blog

15. Jun, 2019

Morning all.

This is a quick update (hopefully)!

Three year anniversary today, not really an anniversay to remeber, hence I want to keep it short.

We all had an amazing time in Disney, but you already knew that from me taking over your timelines Big Grin

Amelia is doing really well, she is pretty much back to her normal self and it's been 7 months post treatment, all the consultant check ups have been good and the medical teams are very happy with her.

We are now just living life, exactly the way it should be.

I think I always knew that this would be my last post on the blog - 3 years. Thank you for being on the journey with me. I've used this platform not only to keep people (who wanted to) updated about Amelia but also to my advantage, I can say it has really helped, so thank you.

And that's it really a journey in our lives we will obviously never forget but now time to put it all behind us. We have made new freinds and probably lost some along the way, but in situations like this you have to look after your own and concentrate on one thing - recovery.

Thank you to our wonderful family, our wonderful friends, you have got us through it even when you didn't realise. 

Now were signing off.

Dan, Tracyann, Amelia and Oliver

 

19. Dec, 2018

Merry Christmas and a Happy New Year to you all.

We can't wait for 2019 - this is going to be OUR year!

Thank you for all your love and support during 2018.

X

 

18. Oct, 2018

*Big sigh*

 

I think this was probably going to be one of the hardest posts that I was going to write, just wasn’t sure if I wanted to post it.

Amelia has finished Chemotherapy.

It all seems a bit surreal that 2 years, 4 months and 3 days ago our Baby Girl was diagnosed, and the worst two years of our lives were to be lived out. I look back and think about that time and it still hits me like a tonne of bricks, although the feeling in the pit of my stomach has somewhat lifted. I wish that feeling on no one.

I know we couldn’t have got this far without the love and support of our friends and family, our loved ones have been there for us since day one and we needed them, to have such support has got us this far and will get us further. Also, all our extended friends, I think I have read every message on social media and have seen every like, there has been hundreds, you are all fantastic and we thank you all from the bottom of our hearts.

A special mention must go to Tracyann’s Mum and Dad and my Mum. We would not have done this without you. You quite simply have been a rock to us, always there when we needed you. I can’t really find the words.

We have laughed, cried, done both at the same time, there are plenty of stories that I remember to get through the day (slept in cars (me) and falling of chairs due to shear exhaustion) and would do it all again in a heartbeat for our girl.

It’s called survival instinct, I didn’t know it existed until 2 and half years ago, but you find this inner strength that you function on, you must. There are two people that out do me on inner strength – Tracyann and Amelia.

Tracyann has shown strength that I didn’t know existed within a person, as a Mum she has been pushed to the brink, yet, she found the strength to not only save our daughters life through being a Mum but also found the time and the strength to be a Mum to Oliver – my heart goes out to my wife, you have simply been superhuman, thank you.

The NHS medical teams along with Tracyann saved our daughters life – it’s that simple. I don’t know how close we were to losing Amelia in the first two weeks in St George’s Hospital in London, but I know that we would not be in the position we are in now without them. I also know that we are fortunate, when I say that, I mean that there are a lot of other people/families out there that are far worse of than us. But the NHS are a fantastic asset to this country, especially at the level we were treated at, I can’t speak highly enough of Pinckney Ward at St George’s Hospital and The Oak Centre at The Royal Marsden.

Now, Amelia.

Well, what can I say about this most amazing little girl.

You just amaze me every single day, to see how you have come through this Amelia, is just a shear credit to you. I’m not sure how you have done it, I don’t think I could of.

You have life skills that can’t be taught, your strength and determination along with you sense of humour, kindness and shear bloody mindfulness will set you up for a wonderful life, and, my darling, you deserve it, every single second. You have every asset that you need to reach for the stars.

I’m so proud of you my sweetheart.

There is one little man that we need to mention, that’s our Oliver. You, my big man are everything to us three. You have made us laugh when we needed it, cuddled us when we needed it and you have been wise beyond your years. Like you sister (Mella) you have attributes that will take you far in life. We are immensely proud of you and you should be proud of yourself.

You are a superhero.

I can’t write much more of I’m being perfectly honest.

 

So, what’s next?

No more Chemotherapy.

There will be some bloods taken for the next couple of weeks, this is to ensure that the bloods have balanced out, the last 4 months have been balanced (Spot on Tuesdays) so this is no real concern.

Check ups for the first year will be every 6 weeks (alternating between QEQM and Royal Marsden), in the second year this goes to every 12 weeks. Third year extends out and handed over to a long-term plan.

In the meantime, were going to Enjoy Life, Love Living!

Once again, thank you all so much for everything you have done for us.

One final note, thank you for reading these bloody blogs! It’s funny I use to think why anyone would want to sit and write about stuff and put it on the web, well now I know. This has kept me sane in the last 2 and a bit year. It’s also been quite a success as I do post it in other areas and I have received messages from all over the country.

I will keep the blog open for now, well you want to see the America pics, don’t you?

Dan

X

4. Oct, 2018

I'm starting this post on a truly sad note, as many of you will know, Tracyann's Mum - Georgina passed away on Friday 21st September. It really has been a difficult time for us all, but for Tom, Tracyann and Darren it's been extremley tough.

It's so very difficult seeing your loved ones go through such heartache. 

What makes it even harder is that Georgina has played a huge part in supporting Tracyann through Amelia's illness and to not see that through just seems totally unfair.

I knew already that Amelia gets her strength from her Mum, but this just confirms it.

It's just one day at a time at the moment.

Today, was a bit surreal - the last Vincristine and Steriods (grumpy meds, as Oliver calls them) week and the last visit to the Royal Marsden in treatment. I woke up feeling excited, nervous, tired and happy! Wow! Get through this week and then finish on 18th October.

So we arrive at The RM and we do our usual ritual and we soon get called in to see Dr Elsje - she is all smiles and so is Amelia, we are there, one week to go on these meds, then 3 more weeks on anti biotics to help the immune system and DONE! 14 DAYS!!!!

Now.....Amelia has had a poorly big toe for the last few weeks, the nail looks like it will come off, so we thought we had better mention it to the doctor....Dr Elsje examined it and went well, we can't give you steriods with this as the steriods will counter the anti biotics for the infection - so then the revelation that Amelia will not have Vincristine and Steriods now! What?! Eh?! Really?....

To be honest this is great news, as I know from Amelia being on ALL 2011 trail that she has had "too much" Vincristine (chemo) basically if you remeber when Amelia first started treatment we had to decide on wheather to put Amelia in for the trail treatment plan, we went for this and the randomiser slected a course of treatment that included more frequent Vincristine (all a bit complicated). 

So thats it - no more Vincristine or Steriods!

Amelia was examined and we had a good conversation about the next steps for end of treatment.

Nightly chemo until 18th October - 6 weeks of anti biotics - Portacath removed mid December - Echocardiogram - 6 week check ups alternating between QEQM and RM - No blood tests, once the blood levels have stabilised, which they pretty much have done (will have weekly bloods up until 18th October)

And we came home with a really surreal feeling. 

14 days to go - she is nearly there guys, she is nearly there. 

Will update blog on the 18th October Big Grin

Dan, Tracyann, Amelia and Oliver 

X

10. Sep, 2018

37 days, penultimate Vincristine and the last at QEQM, whatever milestone we want to use, it's getting close to the end of treatment.

There will be lots of different milestones now, just marking the last of this, the last of that, just surreal really, 2 years and 3 months ago *big sigh and blurred vison*.

I'm not sure how Amelia's feeling if I'm honest and perhaps I have not written enough in this blog about Amelia's feelings, to be honest it's very difficult. Not to write down but to read an 8 year old's mind and what is going on inside espically if she doesn't feel like talking. This is something we, as a family, will work through in our own way and use the support if we need it.

But it's very difficult. 

I just want to make her smile. 

Dan x