Good evening from Wales :) although Cerys is still in Liverpool with Jon :(
She's had a really good couple of days, where's she's basically been the old Cerys :D Her appetite seems to be returning albeit very slowly, and she's still very thin, but it's great to see her laughing and joking and teasing again. Iwan came up to see her yesterday too, and they both had tea together (melted my heart I tell ya!) and the Doctors now think her temperatures could just be down to the fact that she's got no white cells at the mo, so basically, if that settles, we've got a chance of getting her home for a few days, and the Consultant this morning has told us we'll have at least a couple of days, which will just be heaven. Our next hurdle is Wednesday, when she's having a bone marrow aspiration, and Lumber Puncture, which will hopefully show she's in remission, so please everyone keep everything crossed, touch wood, pray or do whatever your thing is, for us!!!!! The transplant has been provisionally booked for the first week in July too.........so ONWARDS AND UPWARDS!!!!!
Friday, 15 May 2009
Friday, 8 May 2009
Night 18 in the Alder Hey house........
and we're officially bored and narked off!!
Although still a little poorly, Cerys has decided the novelty has worn off being in hospital now. We're still here as she's had slight temperatures, they're concerned that the infection won't clear as they don't know 100% what it is (they've sent a test down to London if you please!) so they are still keen to be keeping an eye on her. She's generally well, although was down yesterday, which was down to the sedative she had to reinsert a nasal feeding tube I think. Her hair has also started to fall out, so we had to a serious discussion about that. We've skirted around the issue before, but now reality has hit home I suppose. Even on a down day, Cerys being Cerys, has decided that when it grows back, she'd like it black and curly, so we're going to see what we can do! She's decided she'd prefer to wear hats as opposed to bandanas, although I'm trying to badger home the message that she will be beautiful regardless, I'm sure she'll take it on board!!
So anyhow, yes, she's now receiving supplementary feeds too, as she's not eating very well. Barney and Anti Beryl noticed a difference in her today, so fingers crossed she'll get some meat onto her bones again in the next couple of days. She has also been scanned til the cows come home, we have pictures to show Miss Jones in school :) so we know that she's generally well!!! She's been to school today too, and some of her artwork has been placed on the wall by the enterance to the ward. I'll take a pic and post it when I get home.
Iwan is also doing well, although he has a cold, so can't come in for a few days. he now apparently doesn't like breakfast either, only Yorkshire puddings, which is worrying, but being three, he's entitled to these decisions I suppose!!!!!
Everyone at home is pulling together and helping each other out. My friends have been wonderful, and so supportive. I don't know what I'd do without any of them.
I'm going to pester the Docs for a more certain date for going home tomorrow too, so will try and keep you all informed. So that's the past few days in a nutshell. Chemo sucks, the boredom and solitude sucks, but getting a few steps closer to the end rocks.
Although still a little poorly, Cerys has decided the novelty has worn off being in hospital now. We're still here as she's had slight temperatures, they're concerned that the infection won't clear as they don't know 100% what it is (they've sent a test down to London if you please!) so they are still keen to be keeping an eye on her. She's generally well, although was down yesterday, which was down to the sedative she had to reinsert a nasal feeding tube I think. Her hair has also started to fall out, so we had to a serious discussion about that. We've skirted around the issue before, but now reality has hit home I suppose. Even on a down day, Cerys being Cerys, has decided that when it grows back, she'd like it black and curly, so we're going to see what we can do! She's decided she'd prefer to wear hats as opposed to bandanas, although I'm trying to badger home the message that she will be beautiful regardless, I'm sure she'll take it on board!!
So anyhow, yes, she's now receiving supplementary feeds too, as she's not eating very well. Barney and Anti Beryl noticed a difference in her today, so fingers crossed she'll get some meat onto her bones again in the next couple of days. She has also been scanned til the cows come home, we have pictures to show Miss Jones in school :) so we know that she's generally well!!! She's been to school today too, and some of her artwork has been placed on the wall by the enterance to the ward. I'll take a pic and post it when I get home.
Iwan is also doing well, although he has a cold, so can't come in for a few days. he now apparently doesn't like breakfast either, only Yorkshire puddings, which is worrying, but being three, he's entitled to these decisions I suppose!!!!!
Everyone at home is pulling together and helping each other out. My friends have been wonderful, and so supportive. I don't know what I'd do without any of them.
I'm going to pester the Docs for a more certain date for going home tomorrow too, so will try and keep you all informed. So that's the past few days in a nutshell. Chemo sucks, the boredom and solitude sucks, but getting a few steps closer to the end rocks.
Tuesday, 5 May 2009
What a few weeks..........
Right, have finally remembered my password, and got a second to update everyone!
Everyone probably knows we're at Alder Hey :( It all started when Cerys came home form Nain's screaming with pains in her legs, and after a night with no sleep, we took her into the hospital, who sent us here exactly two weeks ago today. They Diagnosed Acute myeloid leukemia, and she was given a Central line to start immediate chemotherapy. Since then we've had ten days worth of chemo, and when they hinted at us being allowed home, they found an infection in one of the three lines going into her central line, so we're still here!!! We're all going a little stir crazy too, she's bored, and wants to play with some other kids, and Jon is like a bear....no, not with a sore head, a bear with no bike I think!!!! So I'm sending him home for the sake of all our sanity again today.
So we're one load of chemo done, hopefully the temperature will remian stable over the next few days, and they have now inserted a feeding tube that will let us build her up calorie wise. Wish I had the same problem, my waistline has definately suffered by at least an inch!!!! We're all trying to stay upbeat, but we're missing home now, and longing for some normality before the second lot of chemo starts.
Cerys is amazing, she's been so brave, and has has smiled through mostly everything. She's been entertaining other children, and telling younger ones that there's nothing to be scared of. She's even been making me laugh when she's been hurting, and to say I'm proud of her is the biggest understatement of the naughties. She managed to have a good birthday too, and managed to play outside before the rain started! Iwan has also been a trooper, and has been good for Nain.
That's it in a nutshell!!! We want to go home, and can't wait to be normal again. Thanks to everyone for the messages of support, my friends and family are keeping me going, and I owe them all hugely. I do have some pics that I'm not really sure if I want to post on Facebook - Is it appropraite you think? so will post them here when I get home.
Speak soon
XXX
Everyone probably knows we're at Alder Hey :( It all started when Cerys came home form Nain's screaming with pains in her legs, and after a night with no sleep, we took her into the hospital, who sent us here exactly two weeks ago today. They Diagnosed Acute myeloid leukemia, and she was given a Central line to start immediate chemotherapy. Since then we've had ten days worth of chemo, and when they hinted at us being allowed home, they found an infection in one of the three lines going into her central line, so we're still here!!! We're all going a little stir crazy too, she's bored, and wants to play with some other kids, and Jon is like a bear....no, not with a sore head, a bear with no bike I think!!!! So I'm sending him home for the sake of all our sanity again today.
So we're one load of chemo done, hopefully the temperature will remian stable over the next few days, and they have now inserted a feeding tube that will let us build her up calorie wise. Wish I had the same problem, my waistline has definately suffered by at least an inch!!!! We're all trying to stay upbeat, but we're missing home now, and longing for some normality before the second lot of chemo starts.
Cerys is amazing, she's been so brave, and has has smiled through mostly everything. She's been entertaining other children, and telling younger ones that there's nothing to be scared of. She's even been making me laugh when she's been hurting, and to say I'm proud of her is the biggest understatement of the naughties. She managed to have a good birthday too, and managed to play outside before the rain started! Iwan has also been a trooper, and has been good for Nain.
That's it in a nutshell!!! We want to go home, and can't wait to be normal again. Thanks to everyone for the messages of support, my friends and family are keeping me going, and I owe them all hugely. I do have some pics that I'm not really sure if I want to post on Facebook - Is it appropraite you think? so will post them here when I get home.
Speak soon
XXX
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