Charlotte, Mummy & Leukaemia

New chapters & anniversaries Saturday, 31 December 2011 at 15:26

Taken from my original diary on Facebook

Its just over 3 months since I last wrote but felt that the time was right as we approach the year end to write about the last few months which has seen us start new chapters in our lives & mark anniversaries.

Our new home made possible by the amazing help of Leaf

November was a big month for us following our house move on the 5th. Natasha & Sara from Leaf have done so much for us, finding this home & supporting us in our move here. Leaf: Leukaemia Educating & Fundraising is a local based charity who help blood cancer patients. Tash set the charity up when she was diagnosed with Leukaemia herself, and whilst they set up to help adults when they heard of Charlotte & I they offered from their resources to support us. It was an amazing answer to prayer for us as having looked at the rental market I felt quite despondent about where or what we would end up. We have a lovely new home which is so much more than we needed or hoped for.

We had some milestones & anniversaries as well. 18th November was 6 months since Charlotte's diagnosis, 22nd the first anniversary of my Dad's death; it was hard to believe it was a year already & also how much had happened in that year. My Dad was a City fan like me & everytime I watch a game on Sky I miss him not being there, can't believe he didn't get to watch them win the FA Cup or get into Europe, but on a serious note he's missed how his grandchildren are growing up, he'd have been so proud. Charlotte still talks about him a lot, she has a memory box with some of his things in & is always playing with them.

Charlotte with her Grandad, the day before we found out he was terminally ill & the last photo I have of him

The day Charlotte's hair fell out @ the beach

The 6th December was the end of week 28 of Charlotte's treatment, a quarter of the way through. Although it sounds good to think six months has gone, to think she has 3/4's of her treatment left seems forever!Charlotte started her 1st intensive phase of treatment on the 9th September and 10 days in was really rough, missing 4 days of school, and all her hair falling out over 2 days. She went back in to school as normal on the Monday, not phased at all about it. On the 7th week she was really sick, for 5 days she wasn't keeping anything down, in some cases even the anti-sickness med and on the 5th day we ended up in hospital overnight by which time it settled. It could have been the chemo drug she was having at that time, but she was sick the first time at the hospital before it had been given, so that coupled with her blood results made the Dr's believe it may have actually been a virus. She's due to start the phase again later this week, so we'll see how she is with it this time. ts been amazing how well she has responded to treatment and kept well generally especially considering she's been in school so often with little or no immune system. It was lovely to watch her in her 1st nativity, even tho she was a little stage struck.

The following day, 1st trip out w/out hair

We have had soo much support from Charities since diagnosis. You know that Charities exist & they must help people but I think until you are on the receiving end of that help you don't realise how much of a difference they actually make to peoples lives. Obviously as previously mentioned there's Leaf who have helped in a major way, as well as giving us tickets to see Jack & the Beanstalk last week. The social worker on the ward at Southampton is provided by Clic Sargent, she has helped a lot with support, benefits & grants. We've had support from Wessex Cancer Trust, Joe Glover Trust & Poole & District Children's Cancer Fund, without them we wouldn't have managed to have our camping holiday, bought curtains for our new home, got our old car repaired (before it finally totally gave up!), enjoyed Cinderella & a really special day at Paultons Park/Peppa Pig World. We had some help for 3 months from Home Start, particularly over the summer holidays with Charlotte & helping me pack to move home. We have a support worker from The Rainbow Trust, who took Charlotte out weekly before she started school & still supports us on hospital visits and other times....I can't convey how grateful I am for all of this, it has made a difficult time a lot easier than it would have been.

Enjoying Peppa Pig World

She loved watching Cinderella!

Chistmas Day; Nurse Charlotte

We're about to start the last intensive phase of Charlotte's treatment (all being well), after 8 weeks Charlotte will be on week 39 of treatment and the beginning of 73 weeks of maintenance treatment. It will be easier going than the other phases. She'll be on a daily oral chemo drug (for all 73 weeks!), a weekly oral chemo drug, along with a 5 day course of oral steroids every four weeks & a trip to hospital just every 4 weeks for an IV chemo drug into her line. She'll still be on antibiotics every weekend. She also has chemo via a lumbar puncture & a bone marrow test on Week 41 & every 12 weeks after that.

Finally tomorrow is the start of a New Year. I'm sharing my testimony in Church in the morning....the theme: 2011 An exciting Year....not what people might expect me to say but I'm not saying by any means its been easy, its been the hardest of my life...but also exciting in the way prayers have been answered at different times & the security I've found in my faith.