Treatment problems & peoples kindness

The phase of treatment Charlotte started at the end of February is called 'Maintenance', and actually lasts till the end of her treatment in August 2013. The idea in the first few weeks & months is to establish a level of the daily & weekly oral chemo drugs that do their job as far as the Leukaemia is concerned but at a level that leaves her with some immunity. This is usually done by building up to a maximum dose but if necessary reducing to short of that if that's what Charlotte's body tolerates. Unfortunately we haven't been able to do this yet with Charlotte after more than 4 months, because it does suppress her immunity, she has become unwell several times, after each time she's ill her neutraphil (immunity) count is nearly wiped out completely, so her chemo is stopped. We wait for it to build back to a certain level, then re-start the chemo, then she's ill...and the viscous circle continues. She's missed more weeks of chemo than she's actually had chemo. The Consultants have started to question whether something is wrong, which is obviously is a bit of a worry when they start to think like that. But so far Charlotte's chemo, tests & bone marrow have done what they're supposed to, her last bone marrow biopsy in April showed her still in remission so for now its being put down to bad luck.

Last Friday Charlotte had her latest chemo via lumbar puncture at Southampton. She has to stay led down flat for an hour after the drug has been put in, of which the first half of that she's normally still asleep from the General Anaesthetic. She has to be starved from the night before, so usually children are ravenous when they wake, and Charlotte was for the first dozen procedures. However, she then realised that when the GA drug goes in her IV line, she can taste it in her throat, and she doesn't like the taste. So now she feels sick at the thought of what is coming, and when she wakes afterwards she still feels sick, won't eat & eventually is sick a few times. This has happened about the last 10 times now, and turns what should be a short morning at the hospital into a day long ordeal. If we leave the hospital too early she's sick in the car on the way home, which is a 25 mile journey on motorway & dual carriageway. So last week we tried something new. She was given a particular sedative beforehand, this made her forget about feeling sick and at first seem to have worked as she was talkative when she woke & ate a little. However, after a couple of hours she was sick at the hospital & then sick twice more in the car on the way home. So apart from making it better for her before she went in, it just delayed the inevitable. She soon picks up the next day though, and she tucked into a Full English Breakfast at Sainsbury's the next morning.

Whilst we were at Southampton we noticed that the exit site of Charlotte's central line looked sore, they decided to give her some antibiotics to bring home, only to change their mind 2 hours later and said "lets see what happens"...what happened was we ended up at Poole Hospital for 4.5 hours Saturday night to get the problem looked at again, to have it confirmed that it did need treatment. After a dose of IV antibiotics we came home with a 7 day course of another antibiotic and had to go back Sunday evening for it to be re-checked and another dose of IV, plus an extra trip to oncology clinic Wednesday at Poole for our consultant to check it. The redness & discharge has gone but there is still a swelling just above the exit wound, so we have to keep an eye on that and check it settles. The staff really annoyed me at Poole Saturday night making comments that Charlotte was very well & had no temperature, I heard a nurse say this on the phone, and then add, "although to be fair, she does have a painful swelling". It really annoyed me, I don't go to the hospital unless we have to, and in fact our consultant says the slightest concern I take her in, even if she's got no temperature. When she came in the room, I advised her that Charlotte was actually admitted with a very nasty infection of her line site in April, she had no temperature, was very well in herself & the bloods didn't even show any sign of infection....you only knew by looking at it!

Charlotte fundraising activity has been in the paper a number of times, which led to a local business JB Precious Metals raising funds from a Gold Buying Event and presenting those to Charlotte, along with the gift of a new bike from the owners personally. I explained to them at the outset that we weren't raising funds for us but to give something back to Charity to help children with cancer. They insisted they didn't want to give to the Charity, they wanted to support Charlotte personally. I was blown away by their kindness it is a wonderful gesture they have made and will make a real difference to us.