Charlotte, Mummy & Leukaemia

Good day Sunday, 5 June 2011 at 18:59

Taken from my original diary on Facebook

Charlotte woke at 6 this morning and woke up with a big appetite. After a chocolate cake to keep her going we went down to the restaurant at 7.30 where she tucked into 2 sausages, a rasher of bacon & half a slice of fried bread...and to my surprise tried a little of my fried egg. I enjoyed a good breakfast as well to set us up for the day.As soon as we got up to the ward again Charlotte asked Lol (a lovely auxiliary nurse on our ward) for a ham sandwich & nearly demolished two slices of bread with ham.

We left hospital just after 9.30 to have a day out of the place. Heather looked after Charlotte allowing me to go to Church. It was good to be able to go. I expected to find it very emotional but actually was fine and as I whilst I was listening to John Cossins speak so passionately actually had a big smile on my face. Just as the service finished my phone rang. I decided to answer as wasn't expecting any calls. It was a Nurse from Poole Hospital to tell me that the Consultant from Southampton had rang to say that Charlotte's last bone marrow biopsy showed the leukaemia now at less than 25%. This was what they expected or hoped for as all the tests on Charlotte's type of cells indicated that she should respond to this regime of chemo, but it doesn't always work out that way. So it was a tense wait. If it hadn't dropped to below 25% she would have had to move from regime A (the lowest) to Regime C, which would have meant stronger chemo drugs including an extra one which we would have to go to Southampton for on Tuesday. On Friday at Southampton we actually met a little girl a year older than Charlotte who has the same as Charlotte and she didn't respond and is now on C, so it does happen. It was great to hear and I was able to share the news that prayers had been answered with everyone before leaving Church.
After a roast lunch at Mum's with the family Charlotte fell asleep in my arms and we both had a long sleep on the sofa. At 3.30 Charlotte said she wanted to go back to hospital now...and I'd been worried about her not wanting to go back! lol..hmm not sure how to take that one!
It was good to get some time at home and it made me look forward to getting home. The Consultant here at Poole had warned me that its very stressful when you first go home, and that's when theres two parents so I was a bit concerned how it would be. Having said that we didn't really spend much time at our home on our own and when the nurse mentioned we may go home tomorrow I felt quite nervous. When you're in hospital its all very safe & you're in a bit of a bubble really. It feels like when we go home it will all actually become 'real' and I'm a bit apprehensive how that will make me feel.
Charlotte's hair has started to fall out today,:-( just about half a dozen at a time for now. The Clic Sargent social worker gave me a children's story book called Joe has Leukaemia, so I've read this to her this evening to remind her about the hair loss and it being caused by her medicines.She says she's not going to wear a hat! The nurse confirmed that it will start about now, so going to get her hair cut into a short bob as I've been told it makes it easier to handle while she's losing it.
At the moment she still doesn't want to change her clothes as she doesn't want to see her wiggly (central line) so hoping that will come a bit easier soon. She's due an injection into her thigh muscle of another chemo drug (she had one 2 weeks ago), we see the Dr here at Poole and then may be able to go home. Her steroid med's are oral twice a day so I will administer those once we're discharged. Then we come back here Friday for an IV drug into her central line. Expect a fairly busy time when we first go home as we will be visited at home by the POO (Paediatric Oncology Outreach) Nurse & the Community Nurse.