2012 what a year!

Well I'm writing this post on 1st January 2013....the year that Charlotte is due to finish her 112 weeks of chemo treatment! I started the year with a little girl with no hair, and have finished with the same girl with a head of really wavy hair, nothing like it was before treatment!

2012 has been another tough year for us, a full 12 months of treatment, lots of illnesses & problems for Charlotte, but also so many amazing experiences, happy times & special memories. For me personally its been a time where I've been learning a lot about myself and what my coping mechanism's have been in life, and how these do & don't work. 

As far as Charlotte's treatment is concerned in 2012 on 29th February she moved from the first blocks of treatment (alternate intensive & interim blocks) into the final phase, called maintenance which actually lasts for 17 months until the end of her treatment, at the end of July 2013. During 2012 she has had: 7 General Anaesthetics,  7 Chemo via lumbar puncture, 2 bone marrow biopsy's, 1 chemo injection in thigh muscle, 3 doses of IV chemo Doxorubicin (causing hair loss & sickness), 1 dose of IV chemo Cyclophosamide (causes bladder irritation, sickness, hair loss), 8 doses of IV chemo Cytarabine (causes tiredness, temperature, nausea), 16 doses of IV Vincristine (causes nerve pain, leg pain, fatigue),  14 x 5 day courses of high dose steroid Dexamethasone (causes increased appetite, mood swings, trouble sleeping, muscle weakness), and for a large part of the time since 29/2 daily oral chemo Mercaptopurine (causes tiredness), and a once weekly oral chemo Methotrexate (tiredness & nausea). All of these chemo drugs suppress Charlotte's blood counts and in particular her white cells which include neutrophils which fight infection. Whenever her neutrophil count falls below 0.6 her oral chemo has been stopped. She also had to take antibiotics every weekend twice a day to protect her against pneumonia type infections. However Charlotte has suffered a rare side effect that this drug itself has suppressed her white cell count which has meant she has only tolerated low or no doses of oral chemo for most of the time since February. Therefore, she has just changed to a different antibiotic drug and we are hoping this will improve her counts for the remainder of her treatment.

We were led to expect that once we moved into the maintenance phase of treatment things would be easier, but it hasn't really turned out like this. Charlotte has been admitted to hospital at least 15 times this year, mainly for infections or complications from her treatment, including an infection around the site of her central, shingles, many respiratory tract infections and even managed a fall downstairs breaking her arm! She's had MRI scans of her brain & back, both which thankfully confirmed no spread of cancer following back pain & headache, she amazed us all by laying still & unsedated for these, making me so proud of her! She has become more poorly after her four weekly chemo & steroids and we are currently working with the hospital to manage these side effects for her and help me manage.



Princess Charlotte in London

We've had breaks away at Center Parcs thanks to Leaf & Poole & District Children's Cancer Fund, a lovely holiday in Devon thanks to Oakley Waterman Caravan Foundation, an amazing Princess weekend in London thanks to Believe in Magic and so many, many more gifts & treats from so many charities & individuals.

On a day trip to Legoland

We have moved house yet again after 13 months in our last lovely home thanks to the support of Leaf, but are now in Council emergency housing awaiting a permanent home with them. This will mean we don't have to keep moving as can happen in the private rental market, and also takes the pressure off financially when I eventually seek to return to work. It means we can get into somewhere permanent that we can make our home.