Amelia continues to struggle to shake of the virus that hit her before Christmas, it took me out for 2 weeks.
So Amelia is back in hospital, Rainbow Ward QEQM.
I'll be honest, we have been complacent, we desperatley wanted Amelia to have a nice Christmas, which she did, but she wasn't firing on all cylinders. Going to Butlins in between Christmas and New Year should not have happened, but we went and I now regret that decision.
When I look back at this time last year (the blog helps) we were so more strict with control of our health in regards to people visiting/washing hands etc..
Well, we are now back in that mode and all the calender has been cleared so we can concentrate on us 4 again. Selfish yes, the right thing to do - totally.
It's been a tough month and this week it won't get much better.
Well, Happy New Year to you! Goodbye 2017 and Hello 2018.
What a year 2017 has been, in terms of Amelia's health it's be great! She has really done well this year, her general health has been good, energy levels have vastly improved and we have managed to do a lot of things that we didn't do in 2016.
Looking back on the year we started maintenance treatment, this also saw the last lumbar puncture, a total of 15. We saw football teams arranging charity games for Amelia and CLIC Sargent, friends ran the London Marathon, a family wedding, trip to Legoland, The Sun's Who Cares Wins Awards and we even managed a holiday where we visited Everton FC!
I suppose if there was a "down" moment it was probably December, where we have all struggled with illness. This resulted in Amelia spending time in hospital and was really close to spending Christmas there, but we got her home and although not 100%, she is far better than she was and we even managed to get away for a few days.
So, what does 2018 look like - well, the maintenance treatment finishes on 18th October (289 days from 1st Jan 2018) and we are planning some celebrations for that! Oliver turns 6, this little guy amazes me every single day, I can't really put into words or articulate how this boy has coped for the past 18 months, he is just amazing and such a wonderful boy, he deserves the world.
In March both Tracyann and I are going to be doing the Marsden March, which raises money and awareness for The Royal Marsden Hospital, will be posting a Just Giving page in the New Year, I know you wonderful lot have done so much but we really wanted to do something for The Royal Marsden, so a small donation would be great
Have a wonderful and prosperous 2018, Happy New Year to all our family and friends.
Love Dan, Tracyann, Amelia and Oliver
Well, it's been a while since our last post and quite alot has gone on!
Back on 2nd November Amelia had her consultant appointment at The Royal Marsden, we saw Dr Elsje and Amelia was fully examined - she was told she was the model patient, great news! The meds have increased in volume due to Amelia growing, basically body mass, this time the vincristine has affected her more than on previous occasions, what with the time of year we should have forcasted that there will be a visit into hospital.
That happend this week, off to Rainbow Ward at the QEQM, bloods taken and although Amelia had a virus there was no bacterial infection which was good news. The virus spread through the household, starting with Daddy - so he is getting the blame! I'm just pleased that the virus wasn't as servere as what I had had.
Amelia is still off school and still struggling, just goes to show what an increased dose of poison does to your body, she wants to go school so hopefully next week where she can join in the Xmas fun.
Fingers crossed we are all back to health ready for the weekend, some surporses are in store
Thank you all for your support, I recived some messages on social media in the week, just out of the blue, some friends asking if I was ok, really nice touch, I don't see these people that often but have know them a long time, great to get a message of support, really means alot.
Well, that's about it really, we all wish you a wonderful Christmas - where has a year gone? Just imagine, this time next year we will be chemo free.
Merry Christmas and a Happy New Year, enjoy your family time.
Dan, Tracyann, Amelia and Oliver X
Well, theres only one subject making the headlines on the blog, that's The Sun's Who Cares Wins Awards 2017 that happend last Wednesday, apologies for all those people wanting a blog update! Just been really busy.
It was such an amazing day, although Amelia struggled due to the fact that she had chemo on the Monday, Vincristine, which really does knock her, but she as ever, battled through and won the attention of the celebrities! All the celebs were great with all the children and posed for photos and made a fuss of everyone if I'm honest, although Daddy nearly put his foot in it by calling Penny Lancaster - Rachel Hunter, that would of caused issues!
The day was quite amazing in the fact that there were so many stories portrayed that at times the whole room was still and you thought that you were the only one in the room, for example Stepping Hill hospital first responders to the Manchester bombing were there and won a special recognition award.
Another example were the parents of Jemima Layzell, who was the 13 year old girl who donated 8 of her organs after suddenly passing away with a brain aneurysm.
Remarkable people, I actually questioned why the hell were we there, to be perfectly honest.
Again, it just brings home how lucky we are that we are in the position we are in, count every day as a blessing and live for today!
Half term is looming, I'm off work and we are planning a good one! Amelia and Oliver are both well, next consultant appointment is in November, the end of this month will be under a year left of treatment
Love all of us x
So today, we celebrate Amelia's 8th birthday. We have had a very nice evening whilst stuffing our faces a Kasper's! Amelia had a great time.
Amelia's main present this year was a pair of Heeleys, basically trainers with wheels on! As if we haven't spent enough time in hospitals we thought we would just increase our likelihood that we would end up in A&E! Anyway the practice is well underway....watch this space!
It's quite a month for birthday's as Mummy and Daddy both turn 40! Less said about this the better!
Amelia continues to be well, weekly bloods being taken on a Tuesday does get her down slightly, but who wants to have to be accessed every week? The blood results are exactly where we want to be and the meds continue at 100%, roughly a year to go.
So next Wednesday we are invited to a very special event, something we are really proud to be part of. We are off to The Sun Health Awards - Who Cares Wins in London, as Amelia nominated the CLIC Sargent Community Nurses led by Suzie. The night will be hosted by Lorraine Kelly and Amelia has bought a new dress, she is really looking forward to it. Fingers crossed on the night, more information if your are interested can be found here -
As some of you know we were approached by CLIC Sargent some time ago to feature in some of their literature, so Amelia made her debut in the Year End Review below -
Exciting times for Amelia and she deserves some good limelight, thank you all for your continued support.
Love Dan, Tracyann, Amelia and Oliver x