20. Aug, 2018

Majorca and Other Stuff

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.

D x