16. Sep, 2016

3 Months In

I'm starting to think when to update the blog and how frequent of an update I should give. People ask about Amelia so often, so I really want to keep this up to date, but on the other hand I don't want to bore people. I also find that people who are not sure to ask on how Amelia is, as they don't want to keep asking me. I can understand that, but I really don't mind. I have always loved talking about her. So please ask.

We are now 3 months in and we have adapted all forms of our life to accomdate this, this has been very tough but the way Amelia, Tracyann and Oliver have handled it has been amazing. I talk so much about Amelia and Oliver (quite rightly) but Tracyann has been a total rock in this situation. The way she has cared for Amelia has been beyond exceptional and I know she says she is being a Mum and that's true, but, this goes to a place where no one should be at. So proud of my family, words cannot explain. My wife is amazing and I want everyone to know. I won't pretend it's not hard trying to keep the normal day to day life going, we still have bills to pay, but I can goto work and this is a distraction but Tracyann is 24/7, I knew she was special when I married her.

We had a consulatant meeting on Tuesday at The Royal Marsden and they are really pleased the way Amelia has responded to her treatment. Amelia will have bone marrow taken on 6th October and this will be run through an MRD test, this test needs to come back intermediate and not risk. We are told that there is 0.5% chance that the test could come back at risk but we know this won't be the case. We then move into the next blcok of treatment, Interim Maintenance - this is just as intense as the last 2 blocks to be honest, although we were under the impression that this was a slight reduction in treatment. This does depend on what treatment plan Amelia goes on, another decision that we will need to make regarding UK clinical trails. 

We also had a trip to QEQM on Thursday this week, this was for a platlet transfusion as they were low. This is due to the chemo and nothing else.

Amelia is still dancing, singing etc..quite remarkable really. She is amazing!

Count so far - 

Lumbars - 3

Chemotherapy Sessions - 38

Steriods - 15

Community Nurse Visits - 27

Dressing Changes - 12

Infusions - 11

Hospital Stays Overnight - 21

Isolation - 19

PICC Line - 1 (Coming out and port in on 6th Oct)

Bloods Taken - 46 !!

Procedures (Anesthetic) - 8

Transfusions (Blood, plateles) - 13