25. Jul, 2016


We arrived at The Royal Marsden today at 7:55am and had the obligatory game of pool whilst waiting to be assigned to the daily schedule of the doctors/nurses. We had Kate looking after us today, another new nurse and slightly mad, she got on with us!

Our consulatant Dr Elsje is currently on holiday and Amelia was seen by another doctor today. She was fully examined and the obligatory questions were answered. Last Wednesday Amelia had her lumbar and we enquired about the results, knowing that the recent blood tests have come back with positive signs, so when doctor came back 15 minutes later and confirmed that the bone marrow confirmed below 5% blasts (normal level 0-5%) and that Amelia was in remission, we were thrilled.

A wave of emotions went through us and I'm sure Tracyann and I didn't really know what to say to each other or to Amelia! It was shear relief and exactly where we need to be after 5 weeks - the treatment plan aims to get 85% of Leukaemia patients in remission within 4-6 weeks. Amelia is bang on schedule. As Amelia said "It's because I'm doing all what the doctors and nurses are telling me" - you certainly are darling.

Now, let's get this into perspective remisson is not cure. It is however, a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. Amelia will have some naughty blood cells still in her body, current medical methods cannot detect what level, this is what consolidation (block 2) is designed to eradicate.

A few people have asked me what leukaemia actually is well here is a simple statement -

Leukaemia is a cancer which starts in blood-forming tissue, usually the bone marrow. It leads to the over-production of abnormal white blood cells, the part of the immune system which defends the body against infection. Blood cells are formed in the bone marrow, the spongy tissue found inside the bones.

Amelia's bone marrow is starting to produce the correct levels of red and white cells and platelets. 

So what does consolidation look like, well, Amelia has been introduced to 3 new types of chemo, the first which she had today was cyclophosphamide, which she has to have 4 hours of fluids with, so quite along process. Amelia was hooked up at 10:50am and unhooked at 2:50pm, this was after a lumbar procedure at 10:00am!

It was after the cyclophosphamide that we had our real first sign of a heavy side effect (apart from hair loss). Amelia had two dizzy spells and was was quite fragile, however, she did perk up and the doctors were happy she could go home.

We got to Detling Hill when the sickness started and Amelia is still having sickness now.

This could be a long night either at home or at Rainbow Ward.

It's been quite a day for Amelia, it's awful when you child is poorly as many of you can relate to, even if it's a simple tummy bug, but knowing this is being caused by poison that is being put in her just seems cruel. 

So what has been a wonderful morning and still is fantastic news has turned into a poor evening. As ever Tracyann has been Amelia's rock and she truly is a wonderful Mum to both our beautiful children. I just try and make Amelia laugh and do the chores - driving, lifing, paperwork, chemist runs, food runs etc...

Singing off now, it has been a great day for us.

Thank you all for your support, we couldnt have got through the last 4 weeks without you. Here's to the next block of 10 weeks - Together We Are Strong!

Love The Winsbury's