Blog

19. Apr, 2018

We didn't really have the best day at The Royal Marsden today and when we look back at the last 3 months it probably was expected.

Basically, Amelia's blood levels are all good apart from the reds, we seem to be decresing in reds whenever we have a blood reading (normally once a week), because the other levels, platlets/whites and neutrophils are good and the blood was put under a microscope last week, there seems to be no cause for concern, so were being told.

Our consultant says that she has seen this before, where the numbers are reduced and no real sypmtoms and its related to Parvovirus, the Parvovirus is also basically "Slap Cheek" which we know has been around. 

So, this means that Amleia's red cells are at 69 and a blood transfusion is needed tomorrow, the bloods taken today will be scanned by Royal Marsden for this Parvovirus and that will take until Tuesday to get the results, they are also scanning for any adnormal cells.

So, sit and wait and don't let our thoughts run away with us, Amelia's energy levels are fine, no brusing and no fatigue.

x

 

18. Mar, 2018

Sorry for not blogging for a while, no excuses but I didn't really feel that I wanted too. 

Amelia has 213 days left until end of treatment and although this can't come soon enough, I'm not sure what happens after? How will her body react? Will it come back? I know people's responses will be not to think of this and to be honest, we haven't, but as the days tick by it's a question that enters my thoughts. It's a case of so near, yet so far, if that makes sense.

It's been a difficult start to 2018, Amelia had a horrible December and although she has recovered well it has taken it's toll on all of us. Her red blood levels have been low this week and I thought she would need a blood transfusion, but although she looked peaky she was still strong and her levels seem to have risen, so no transfusion, well done Amelia! We take bloods this Tuesday, so levels should be back to normal.

Thank you to everyone that sponsored us for the Marsden March, as you may know, we didn't make the March, this was mainly due to transport issues, although we had booked a hotel the night before and had everything arranged we had a issue with transport on the Saturday evening. We were bitterly disappointed. So, we will be doing a 14 mile walk to make up for this, when the weather breaks I will be organising a walk from Palm Bay to Reculver Towers and back, so if anyone wants to join us and get some sponsorship for the Royal Marsden Charity then you are more than welcome. 

Our next consultant appointment is the end of April, so that's our next milestone.

We are also looking forward to our summer holiday in July, to be honest, it can't come soon enough.

D x

11. Feb, 2018

Well after a much vistiting in hospital wards over the last few months we can safely say that Amelia has totally shaken off her virus and it's probably the best she has been for a long time. Great energy and a great colour in her face, the only minor setback was the Vincristine (chemo) which causes her to ache so badly, this caused Amelia to miss a few school days, but on the whole doing good.

Thursday 1st February was our 3 monthly to The Royal Marsden to see our consultant and again she was very pleased with Amelia's progress, the virual infection did set us back on terms of a treatment plan, but nothing that can't be caught up - great news. A full body examine and the routine investigation into Amelia's weekly blood results and all was good. I can never explain the feeling driving away from the RM with this kind of news, a warm inside feeling that is truly satisfying.

Can you believe we only have 3 more scheduled visits to the Royal Marsden - Wow.

So when Amelia is well she is bouncing, back to her normal self, so much so, that yes, it's Showtime again, being put on by the wonderful Thanet Stage School of Peforming Arts at the Winter Gardens Margate, starting Thursday 15th February, it will be a truly amazing show put on by Miss Joesphine, Miss Amy, Miss Syroon and Miss Jackie along with Sally, Tracy, Cathy, Natalie, Tracyann and all the chaperones (sorry don't know you all)!

Amelia has been working hard, as she did miss some of the classes when practice was going on, but trust me, she has been fully committed in front of the mirror. From 42nd Street to School of Rock. I'm going to watch it on Friday night and will no doubt have "something in my eye"!

Tracyann and I are doing The Marsden March on 4th March, if you would like to spnsor us that would be great, please see the charity events on the web page, all donations go straight to The Royal Marsden and you don't need me to tell you how amazing this chairty is. 

Well, thanks for listening and reading the ramblings of a 40 year old! Ha ha ha.

Dan X

 

P.S 248 days till end of treatment.

7. Jan, 2018

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.

 

Dan x

31. Dec, 2017

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 Thumbs up

Have a wonderful and prosperous 2018, Happy New Year to all our family and friends.

Love Dan, Tracyann, Amelia and Oliver