22. Oct, 2016

Stage 3

So here we are at stage 3 - Interim Maintenance, also 4 months in. Time has gone quick, which I think is a good thing?

Please excuse any spelling mistakes - I'm very tride....tired....

This week has seen the first week of this stage and on Monday we were at The Royal Marsden for Amelia's Glomerular Filtration Rate(GFR) - bascially the die through the kidneys to ensure they are working correctly. This is due to the level of chemo that will go in Amelia's body has to be flushed through and the kidney's must be working well in order to keep the toxicity levels at a minimum. Pleased to say that there was no issues here and we were good to go.

The worst thing about Monday was trying to get a cannula in Amelia's arm, It wasn't nice. I'll be honest on here, Tracyann and I had to hold her down. It was upsetting for us all and something that seems so easy in all this was very difficult.

So back at The Royal Marsden on Tuesday for a 4 o clock start, Daddy couldn't make it due to work commitments so Grandad was the driver. 

Amelia started the flush through at about 2am on Wednesday morning (24 operation you know!) ready for the chemo the following morning. The chemo is administered at 2ml an hour! Very small amount due to the toxicity levels, it's a 48ml syringe so will take 24 hours, this is aslo while she is hooked up to a flush. Also on Wednesday Amelia had a lumbar, connected back up to chemo after tho! 

We were so proud of Amelia today, cannula - straight in, she sat still and done it - what an amazing girl X

So with the chemo being taken off Thursday it was then a game of waiting until the correct levels were showing in order to come home, we didn't really know what to expect and after advice from our consultant Oliver and I went up on Friday afternoon. However, results cam back and we were not going home. So Oliver and I booked in to a hotel as the levels were so close we were convinced that we would be going home Saturday morning.

With these test as the time goes onlonger the pass levels get tighter - they need to ensure that the levels are low and are being removed from the body. Saturday morning Amelia missed the level by 0.02. We were gutted.

Amelia was very upset as you can imagine. Try telling her it's for the best just does not wash after 6 days.

So Oliver and I came home and we are hoping tomorrow will be the day. This is nothing to worry about and different people take longer than others, at least we know for next time as we have another 3 of these at this stage.

I must take time to praise The Royal Marsden more, I sometimes get wrapped up with all the information and how Amelia is doing, but The Oak Centre at The Royal Marsden is at the pinnacle in Oncology. The staff are amazing from the Consultants to the Doctors to the Nurses to the Cleaners (probably not what their called) they are just fantastic with the children. It is quite an amazing place. We have also met (Tracyann has met, I've seen) some brave, brave children/young people. You could look at the place and walk out of their a complete wreck BUT people don't, not sure what it is but everybody believes and so they should!

On the charity side of things I'm trying to get a total together for CLIC Sargent so any outstanding charity money that was raised over the summer, could we please get on the Just Giving page - thank you X

I've got a BIG idea for something next year, needs a little planning and will be calling on a few people for help - i've contacted some already but you maybe getting a message of me real soon 👍

Love Dan, Tracyann, Amelia and Oliver.