Blog

6. May, 2018

Not to sure where to start really. 

The decrease in red cells tied in with a scheduled visit to our consultant at The Royal Marsden, this was a great opportunity to ask some questions and get some real answers. 

This wasn't like the other visits to the RM, this had a different feel about it, we knew something wasn't right regarding Amelia's blood counts and although QEQM had scoped the bloods we still didn't have answers. 

QEQM had also put Amelia on folic acid, which we were told was for her iron levels, it wasn't, her folic acid levels were low - makes sense typing it, but when your led to believe this is for iron levels and not folic acid by a medical professional you tend to go with it. Our consultant said stop the folic acid with immediate effect! This had the potential to reduce the effectiveness of a chemo.

Anger set in and more questions from us. We were also told that QEQM did not have the capability of viewing the blood to a level that would detect adnormal cells.

I think it's fair to say that alarm bells were starting to ring in my head, I didn't want to jump to conclusions but this was extremley hard not too. 

Our doctor could sense and see our apprehension, so a full scan of Amelia's blood would be done.

I can't describe the feeling, but it felt very similar to June 2016, severity was less but the gut wrenching space in the pit of my stomach was there - I said right at the start of the blog I can't explain the overwhelming sense of feeling that hits you and I probably will never be able to explain it, it's just something that occurs through trauma? 

It was a long weekend waiting for the results to come through, I was actully very comfortable regarding the results, that'show I felt, as Amelia had no signs of fatigue or pinched brusing, but there was that small chance.

We had planned a full on weekend as we had a friends birthday celebrations and we tried to put it to the back of our minds, but I often looked at Tracyann that weekend and I could tell she was struggling.

The call from our consultant came Monday afternoon at 5pm - she phoned Tracyann's phone whilst Tracyann was on the way home from work.

Bloods were clear - it's a virus.

Tracyann came straight home as I was waiting (children at Nanny Pat's), we cried, the relief washed through me and my eyes actually hurt.

It was obviously the news we wanted but the emotion was just raw.

 

So what were the next steps in order to get Amelia's red cells back to a normal level (within treatment levels). Amelia required some antibiotics on a monthly basis until the levels are sustained at where they should be.

So Amelia and Tracyann were once again at QEQM Rainbow Ward on Wednesday.

The day went to plan, Amelia was hooked up for 4 hours. The end of the day didn't go to plan, basically Amelia was accessed the previous day by the community nurses and had used and access to AMelia's portacath that could not be removed by the nurses at the QEQM!? Pardon? This has never been an issue before? There are various types of these and now QEQM were saying that it's against policy for them to remove it?

To add fuel to the fire, the doctor had to Google Amelia's anti-biotic to understand what the hell it was.

With this combination Amelia and Tracyann were not in a good place and I was working, frustrated and dissapointed were an understatement. 

To add to this Thursday morning at 3am Amelia was sick and had a big headache - the anti-biotics! Not once were we told about side effects from the doctors, after I had read up on the meds the side effects were clear. 

Amelia fully recovered by Friday afternoon but a nightmare week TBH.

So, at the moment, Amelia is good, she looks well, she has good energy levels and treatment continues, these events we just have to ride right?

164 days until treatment ends and 80 days until we go on holiday.

Much love and thank you for your continuous support.

Us x

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