Charlotte ‘CJ’ Adams is KUMB’s very own official mascot.
Thirteen year-old CJ, who was recently diagnosed with Acute Lymphoblastic Leukaemia, is undergoing some very tough treatment but, as you will read, CJ is battling bravely.Last week, CJ's Dad Paul, concluded his update by saying, "So I hope to report a good couple of days at school on Wednesday if all goes to plan."
Today, he sent us this latest update.
Well it's a case of me and my big mouth again!
Monday saw CJ go to school for the morning, which she really enjoyed, but which completely exhausted her. Late afternoon she had blood samples taken and that evening we had a call from the hospital to ask how she was? Puzzled by this, it turned out that her blood levels had dropped dramatically, but they thought it might be a contaminated sample.
Tuesday morning another blood sample was taken and sure enough, her blood levels had dropped. She was then admitted immediately into Basingstoke hospital for a blood transfusion which took place overnight. The said they were amazed she was walking as her red blood count was so low her muscles could not have been getting any oxygen.
Wednesday saw us spend all day at hospital, wondering why her levels had dropped so badly. The Consultant is a bit puzzled too! He thinks she has some underlying infection about to start so all sorts of blood tests have been done.
Her central line, where it enters her chest, looks red and we think it may be infected, but until things kick off properly we won't know for sure. Also looks like she'll need more blood tomorrow too. Fortunately, her chemo has only been delayed by one day so far. So it's another night in hospital for CJ and Julie, and a great way to spend my birthday! Poor Charlotte felt so guilty she kept apologising to me but I didn't care, I just want her feeling better.
Thursday was a day of uncertainty. Would she be well enough to come home, or would it will all kick off so that they would have to give high dose antibiotics and keep her in etc. ?
(Fri) Just back from the hospital! She came home at 1 pm today, and by 7 pm her temperature was back up to 38.4, so we took her back to the hospital. They're not sure what's causing this at the moment so now they are blasting her with triple antibiotics.
Really pissed off though: we got to the ward at 8.15 pm, saw a doctor briefly, then a nurse took some blood, and by 10.45 pm no one (except us) had checked her temperature, no obs done, and no antibiotics given!!
At 11 pm, she finally got the antibiotics - which she is supposed to receive within 15 minutes of arriving at hospital with a temperature!. It was only because I kicked up a fuss that she finally received them when she did. They apologised for being busy and havng to admit too many new cases that evening, the problem was it was at the expense of those on the ward in the first place. I'll be having words with the consultant tomorrow.
This morning she was quiet and sleepy but by lunchtime had livened up, so I managed to get Julie out of the hospital for and hour or so to do some shopping (for Charlotte!). When we got back she looked tired and fell asleep.
She woke up at 6 pm, when her friend Emma came to see her, and she was much worse. Her temperature went up to over 39 degrees and we were all a bit concerned (including the doctors). However, they are persevering with the antibiotics for now and when I left at 9 pm her temperature had come down again. The problem is there are no signs of an infection anywhere, so they can only treat the fever with broad spectrum antibiotics, and now they think it may be a viral infection. We'll have to see what happens over the next few days.
So, a pretty horrible week continues. She really is quite poorly at the moment, even when she says she feels okay she looks awful. You just want to cuddle her and make it all better, but all you can do is cuddle her.
KUMB did some research into the world of bone-marrow transplants. The very word “transplant” conjures up images of major surgery but, in fact, if a donor is found to be a suitable match the bone marrow is removed by needle and transplanted into the recipient intravenously. It’s a simple process but donors are always required so why not, as Paul says, contact the Anthony Nolan Trust at www.anthonynolan.org.uk to see if you can help.
We also heard this week from a chap called Mike Merritt-Holmes. Mike is one of those crazy people who once a year leaves his travelcard at home to go on a 26 mile 385 yard run around London. This year Mike will be braving the elements, pantomime cows and the prospect of running downwind of Paula Radcliffe in order to raise funds for the Anthony Nolan Trust. Anyone wanting to sponsor Mike can contact him at: www.justgiving.com/mmh2005.
Kumb members are now posting fund-raising ideas here - http://www.kumb.com/forum/viewtopic.php?t=56630.
Don’t forget you can also send your good luck messages to:
Charlotte Adams
c/o Eggars School
London Road
Holybourne
Alton
Hampshire
GU34 4EQ
Good luck CJ!!
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