18. Jul, 2016

End Of Induction

So, since the last blog we have reached our first month and are now on day 33, this week sees the end of induction (block 1), it really has been a rollercoaster of a month, there are some bits that I can't remember, they say that the mind forgets what it doesn't want to know, but there are times when I can remember the most irrelvant thing, thinking it may be important at some point?

A good bit of advice that was given to us at the start of this journey was for all of us to have a notebook and pen at all times. For Tracyann and I this was important as to write down questions and take doctor's notes etc. For Amelia we said this was her book and she can write whatever she wants in there - Mummy and Daddy were not allowed to look at it, unless Amelia wanted us to, so far we haven't looked and she has not asked. It's important that Amelia has a voice in all of this, she has always wanted to be in control of situations (don't know where she gets that from!) and wants to know what the doctors are doing to her, she has a fair understanding of the naughty blood cells, mainly from a childs book supplied by CLIC Sargent that explains naughty blood cells in a very basic format, again I pay tribute to Amelia, she really is one remarkable 6 year old.

So, we have had nurse visits everyday this week, this is to administer the anti-biotic for the PICC line infection, this finshes tomorrow and we have seen no rise in temperature, which is good. The nurses are also taking blood every other day just to monitor, this is the good news that I mentioned on FB.

Amelia's last chemo session was on Friday 8th July, she didnt have a lumbar last week (Lumbar Thursday) as her neutrophils were so low, basically there was no point as the bone marrow readings would have been "masked" by the chemo. Bloods were taken today and we had a fantastic phone call at about 3:30 this afternoon, Amelia's platelets were at 181! This is a really good set of results as they had been 50-80 (normal are between 150-400) during chemo, now we must not and won't get ahead of ourseleves but seeing this is good, the platlets are being produced by the bone marrow. The white cells and neutrophils are still low, so we need to understand the relationship between the two, a question that I will be asking on Wednesday. But the nurses were pleasantly surprised.

Which brings me on nicely to this week. Amelia is at The Royal Marsden on Wednesday for a Lumbar, how rude upsetting our Lumbar Thursday eh! She will also be having her PICC line removed and a port put in, which is great as there will not be this cannula swinging from her arm and she can wear dresses and even go swimming when she is a little stronger.

Thursday is an interesting day as both Amelia and Oliver may both be on Rainbow Ward at the QEQM at the same time, Amelia has a chemo session and Oliver is in hospiatl to have his adenoids removed and grommits in, a simple procedure but having one child admitted to hospital is bad enough but 2 is taking the piss. But I know, needs must and they are in the right place, jsut doesn't make it right tho does it?

Staring next Monday is Amelia's consolidation block (block 2) and will mention in more detail in the next blog, but this will be a 10 week programme which is very heavy for her. 

As ever thank you for your time in reading the blog.

Enjoy the sunshine, we are!! Wild

Love Dan, Tracyann, Amelia and Oliver XX