Blog

19. Jul, 2017

It's funny how you feel and change your mind on situations depending how you feel at the time, when I took the photo on the left of Amelia, I didn't think anything of it and when I saw it even after a month after it had been taken I still didn't think it didn't look like her.

Now when I look at this photo I sweat, I feel thankful and I think what a brave girl she is. She was of course her cheeky self but I just don't recognise her.

I said I would never post this photo of Amelia, but as time goes on I start to feel different about situations. I really had to think hard about posting this, but I think it is the right thing to do.

This not only shows how much Amelia has gone through, but all of us and I'm not being selfish when I say that, I'm starting to reflect and admit that we are all part of this.

I also think that this picture makes a huge statement to the wonderful staff and The Royal Marsden, St Geoege's and The QEQM, we have had some minor incidents but in the whole they have been amazing.

So, the picture on the left was taken August 2016 and the picture on the right was taken 2 nights ago.

A picture paints a thousand words - take that Naughty Blood Cells.

D x

23. Jun, 2017

It's been a tough week.

Amelia has struggled in the hot temperature and combine this with steriods this week it's been hard. Tracyann has been showering Amelia during the night as Amelia is so itchy from the steriods/vincristine. 

Just really struggling tonight, we are all tired and feel like shit to be honest.

Need this week over and to come off the steriods and let the vincristine do it's thing, although we have this every 4 weeks until October next year.

Amelia does plough through it, doesn't complain, I know alot of people that cry over a splinter, not her, she is so strong.

481 days to go, it can't come quick enough. 

x

13. Jun, 2017

A year next week that Amelia was diagnosed, we are not focusing on that as you can imagine.

Amelia has done her first full week at school, apart from Tuesday mornings when she has her weekly bloods - now known as "spot on Tuesday's". 

This in technical terms, basically means that the blood levels are of a level that the medication can stay at 100%, we need this to stay at this level to eradicate any relaspe.

Amelia seems to have settled back into school very well, although she was very tired on Friday.

We had a fantastic 3 days at Legoland at the end of May, Amelia and Oliver has a great time and didn't want to leave! It was a fun break with plenty of rides and treats. Just seeing both enjoy themselves was great, seeing Amelia in the water park with not a care in the world was a feeling that I will remember for the rest of my life.

How quick a year has gone, but what a year.

Dan, Tracyann, Amelia and Oliver X

21. May, 2017

There are 8 cycles of treatment in maintenance phase, 1 down 7 to go. 

As most of you know Amelia is doing really well, the first phase of maintenance is now complete, this was completed on Thursday when we went to visit Amelia's consultant - Dr Elsje, it was great to see her, the relationship you build with the medical team is critical, she went through Amelia's blood results and there was no issues, a full examination of Amelia and we were done. 

It felt strange not seeing the Oak Centre at The Royal Marsden for 3 months, a place you connect with and rely on so much is then taken away just as fast as it arrived. We wont be seeing The Royal Marsden for another 3 months, 7th September is when we are next due a consultant meeting, although we will have to have a visit to swap over meds.

So a really good visit.

A little bit of exciting news that we can say is that we have nominated Amelia's Community Nurse Suzie, for The Sun Newspaper Health Awards. This is a great way of recongnising the wonderful work that the Nurses do, so guess what, we have The Sun doing another photo shoot this week, the children a very excited!

We are still waiting for the CLIC Sargent magazine piece to come through, which also should be good.

That's about it really Thumbs up

Dan x

3. May, 2017

I want to start this post by saying a great big thank you to Andy, Elliot, Lee and Natalie that all did the London Marathon on 23rd April, they all raised money for CLIC Sargent for Princess Amelia, we cannot show enough thanks to you guys, you truly are amazing. 

Amelia has CLIC Sargent community nurses every week take her bloods and checking her levels, so to have 4 friends run a marathon for this great charity is truly amazing. Thumbs up

Well, we continue on this journey, nearly 11 months in and Amelia is doing really well. We have looked back on some of the photo's and to me it seems such a long time ago, yet it's gone so quick. We also realise how lucky we are and how strong we are as a family and our amazing friends that have supported us.

Amelia is continuing her dancing, she has started 2 new classes, stretch class on a Tuesday (she is determined to do the splits) and trust me, she will! Also a commercial dance every other Sunday - she loves this one! Oliver is loving his football, he is now doing 2 hours on a Saturday morning at Margate.

We also had a lovely family wedding at the weekend in East Grinstead, congratulations to Kristen and Mark, Kristen is Amelia's 3rd cousin! We all had a fantastic day and Amelia and Oliver had a brilliant day, laughing, playing and enjoying themselves. It was great to get dressed up, relax and let the kids be kids. We even had a game of football outside of the reception, Liam and I came off worse!

Thursday 18th May is the day we go to The Royal Marsden to see our Consultant.

8 Cycles until end of treatment, we are nearing the end of the first - 7 to go.

End of treatment date - 18th October 2018 - 532 days.

Thank you all for reading my ramblings....

D x