Firstly, let me apologise, I was meant to update the blog before we went on holiday and after our last trip to the RM, however holiday mode caught up with me and before we know it we were on the plane!
So our last visit to the RM was on 12th July and Amelia's consultant Dr Elsje van Rijswijk fully examined Amelia studied all the results (this is obviously done before we get there) and was really happy with Amelia's progress, including the Parvovirus which is completely gone from her body.
Hearing Dr Elsje report after seeing Amelia is always a welcoming and comforting, she's the boss and we a pretty much governed by her, even at QEQM they always consult with the RM and if the local RM doctor doesn't know then it's onto Dr Elsje, these professionals are amazing at what they do and we are so very lucky to have the best in the world at The Royal Marsden.
So a glowing report.
Tracyann and I had already had the discussion before we arrived at the RM about raising the subject of the protocol post 18th October - Amelia’s end of treatment date.
We had a whole host of questions and I wasn’t sure weather this was the right time to ask, but asked we did and I have to say Dr Elsje was most accommodating, we knew she would be but we are going into unknown territory so we were not sure that the answers we were wanting, we were going to get.
However, we were very pleased of the outcome. Basically on the 18th October all chemo stops! Amelia will have some anti biotics for a few weeks to support her immune system, there is then some protocol stuff to check that the body is ok, basically has the chemo damaged anything. The check-ups for the blood go from a current weekly to a 6 weekly. Of course we will get a full run down when we go back on the 4th October – now that’s a different story!
Some of you may know that the 4th October is Amelia’s birthday and she has an appointment for chemo (Vincristine) we had known this back in 2016 – the dates don’t change, however we hadn’t told Amelia but Amelia knows how to read her medication card, so when we told her, she said “Yeah, I know”, well me and Tracyann just looked at each other and we could tell what each other was thinking – does this girl get any braver, her courage is that of 100 lions let alone 1.
So when Amelia turns 9 in October she will have Vincristine – FOR THE LAST TIME.
So we left the RM is a buoyant mood and this set us up for holiday very nicely.
I probably broke the speed limit on the way to the airport – I couldn’t get there quick enough, believe me, this was a much needed holiday, we were off to Majorca for two weeks!
We had an amazing time, it was great to spend time with the family and Amelia and Oliver loved having their cousins around them all day, I’m sure at one point Amelia spent at least 7 hours in the swimming pool in one day. Before Amelia was diagnosed, she was doing well with her swimming, we weren’t going on a weekly basis but was trying to go at least 2/3 times a month, however this has pretty much been non-existent since June 2016, this has impacted not only on Amelia but Oliver as well, basically Amelia was either Neutropenic or not strong enough and when we did go it wasn’t consistent enough to get her confidence up. However, two weeks in a swimming pool has kicked the last two years right in the back side! Amelia is now underwater diving and swimming in short (5/6 meter) spurts! Well done Amelia.
It really was an amazing holiday enjoyed by us all, memories that will last a lifetime.
We returned home with a bit of bump to be honest, we landed on the Friday and Amelia was due chemo on the Monday, so reality did hit home. The 4 week Vincristine at QEQM, this is the one where it wipes Amelia out for 5 days, so there have been a few pyjama days, good old Netflix!
Facebook memories have been an interesting read over the past couple of months from two years ago, some of it I have actually forgotten we done as everything was a blur but seeing the photos and states pop up are quite humbling, my family and friends still amaze me, thank you.
So 58 days until end of treatment, doesn’t seem real if I’m honest, doesn’t seem long ago we were at the start of this journey and now I feel we are on the downhill slope to the finish line, couldn’t of done it with out you.
Well, it's been a while since our last post, we have all been really busy and enjoying the weather!
It's been a good few months, Amelia has been really well and the Parvovirus has well a truly gone, thank goodness for that! We have been nice a busy enjoying the nice weather and Amelia's attendance at school has been the best it's been. Oliver is doing really well at school and he is also enjoying his football at Margate, so much so I'm now running an U7 team! 🤪
We did have a small setback this month when Tracyann was involved in an incident at work, which resulted in having some time off, she is now back at school although a bit shaky.
Amelia's blood results have been stable - Spot On Tuesday's - and this week her results were outstanding, basically her levels remained the highest they have been a week after chemo since December - great news!
Today we went and saw Amelia and her friends perform in "Palm Bay's Got Talent" and they smashed it! Everybody did - well done to the girls who sang "This Is Me2 and well done to all the pupils who took part - Brilliant!
I would also like to use this post to say congratulation to the NHS on their 70th birthday, although it's not without it's struggles, I'm convinced it's the best medical service in the world, perhaps you have to have a story to formulate an opinion and I'm sure many of you have, but, I can safely say that if it wasn't for the NHS Amelia wouldn't be here today.
A strong statement but fact.
As I say it has it's problems but when the severe hits they are they. St George's Hospital in London were outstanding, my thoughts often go back to June 2016 and believe ot or not I have comforting memories, knowing that you are in this kind of care when you need it is comforting.
Amelia has 104 days of treatment left - 104! Wow! We have a the penultimate consultant meeting next Thursday before treatment stops.
.......Just let that sink in for a minute.....Look how far she has come, so, so proud of her, Oliver and Tracyann.
It really does feel we are on the home straight now.
I'll give an update next week post consultant meeting.
P.S Come On England....It's Coming Home!
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.
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.
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.