7. Sep, 2016

12 Weeks In - Going For Gold

September is Childhood Cancer Awareness Month - #GoGold

12 weeks in, 84 days.

No update for a while as there has been nothing really to update on. Amelia is now on her 6th week of Consolidation. She is still doing very well. There has been a few occasions where Amelia has been a little poorly after her meds but on the whole she is doing fantasically well.

Last Tuesday Amelia and Tracyann went to RM for Meds (Cyclophosphamide) and it was at this point that the doctors were consulting to us about the next stage of Amelia's treatment - Interim Maintenance. We were under the impression that this was where the treatment decreases slightly - we were wrong. Amelia's plan for this is quite intensive.

Amelia will only go onto this treatment plan if the MRD (Minimal Residual Disease) test comes back as intermediate - this is a crucial day and the next big step in our journey. If this comes back as MRD Risk we are on a different course altogether, this will be the first week in October -Amelia's birthday is the 4th.

It was encouraging that the doctors were talking about Interim Maintenance and this is where we are concentrating our next efforts on. 

At the start of Amelia's treatment I had the biggest decision I have ever had to make and one that I had only 24 hours to call. It was weather Amelia would be treated under a Clinical Trail - I'm not going into detail on the differences and this is not the forum to detail my decision but it was tough, mainly as I had to make it on my own and not with Tracyann - she was 24 hour care for Mopsey. I was lucky that I had family support around me to help come to a decision. So just to add more to the mix, we are now at that stage again, when Amelia starts Interim Maintenance we have 2 decisions to make on Clinical Trails, at least this time I will have Tracyann. What adds more to it is that once we have decided it then has to go through a selector!

We have managed to get out a few times over the summer which has been nice but obviously nowhere near what we would have been doing, I'm not going to lie, it's been tough and it's actually quite satisfying that you lot are now back at school and work! 😀

Oliver starts school next week at Palm Bay and he is very excited, I think there is a part of Amelia that is dissapointed that she won't be playing the older sister at school, showing Oliver the ropes, she hasn't said anything but sometimes she does't have too. But it won't be long, we are not sure when Amelia will be back but at the moment it's looking like February.

September is Childhood Cancer Awareness Month - when this was first mentioned to us I wasn't quite sure what it all ment and to be honest perhaps I still don't fully - why only a month? One thing is for sure that out of all this, you just don't know, like I have always said from day 1 - it's so scary to think that 14th June 2016 we were fine, sailing along - 15th June 2016 BANG. Life isn't fair but one thing is for sure it's what you make of it no matter what situation you are in.

So, what's also been going on - we have recieved some wonderful support as ever from our friends, weather this has been donations to CLIC Sargent, donations to Amelia or friends knocking on the door and coming over (when Amelia is able to, no infections). I would like to say a special mention to all the wonderful pupils, teachers, parents and Ms Josephine at The Thanet Stage School of Performing Arts for the fundraising events and to the contribution to Amelia - Thank you so much. We are hoping Amelia maybe popping in soon, but I'll leave that to Tracyann!

I have said enough for one post, thanks for reading the blur...

It's good to talk and type X