HB 98
WBC 0.07
PLT 23
N 0.0
Another platelet transfusion being done tonight. Lauren seemed more alert today and got on her laptop for 10 minutes which was a first in a while. She tried staying up to watch the Olympics opening ceremony, but fell asleep. Sleeping a lot these last few days, as expected. These blogs aren't covering everything she's being treated for each day, so please don't think she just sleeps - there are a few things happening eg. x-ray yesterday to check why her 'port' was hurting, creams for rashes etc etc. Fevers are persisting.
Julie or I continue to clean the room each day - I reckon we've taken off half a layer of lino already. Lauren uses mouth wash at least 4 times a day because she can't brush her teeth whilst neutropenic - infection risk from brushing, particularly if she cuts herself.
For Adelaide based readers (also Brisbane, Cairns & Perth), consider walking in the inaugral Leukaemia Foundation's "Light the Night" - a first in Australia at Elder Park, Wednesday 17th September 5:30pm - 8:30pm. Visit www.lightthenight.org.au or call 1800 500 088 for details.
Friday, 8 August 2008
Thursday, 7 August 2008
Update #33. Day +7
HB 92
WBC 0.02
PLT 17
N 0.0
Platelet transfusion today. Mucositis getting worse. Nothing else of significance.
WBC 0.02
PLT 17
N 0.0
Platelet transfusion today. Mucositis getting worse. Nothing else of significance.
Wednesday, 6 August 2008
Update #32. Day +6
HB 131
WBC 0.05
PLT 22
N 0.0
- Still crook.
- Christmas tree has even more pumps on it - see photo. Can't wait to chop this tree down!!!
- Was given a drug to help boost/assist her immune system.
- Lauren shaved her head today as her hair was falling out in clumps. Hopefully the last time ever I can say I have more hair than her!!!!
- Our hands are about to crack apart from the number of times we wash them through the day. I think sandpaper would be easier on them!!
- Biggest challenge - trying to untangle all the lines/tubes/chords to let Lauren get out of bed for a comfort break, next to her bed.
Tuesday, 5 August 2008
Update #31. Day +5
HB 69
WBC 0.04
PLT 23
N 0.0
- Blood transfusion (2 units) today which should see a rise in tomorrow's HB reading.
- Platelet transfusion as well (1 unit)
- CT scan carried out as routine due to fever persisting greater than 72 hours. Scan was clear. Temp exceeded 40 degrees in early hours of the morning.
- Been Lauren's worst day yet in how she's feeling. She's in pain but being managed appropriately via one of the numerous pumps and corresponding drugs.
Kate & Nathan had their first Sydney sports carnival at their new school today. Nathan got a third place, Kate two thirds and a fourth. They're really settling in well in this school and are thriving on the harder challenges in work load and planning. I have changed my opinion of public schools for the better if Rainbow St is typical of the public system (no offence meant for St Johns, Bruce!!).
Took Kate & Nathan to Coogee beach this afternoon for the first time since arriving here - was able to because volunteers from a corporate were cooking dinner for any families at Ronald McDonald House tonight, which freed up some time for us. Whilst we're not staying there, they invited any families from the ward. Was good to catch up with other families over dinner. Exchanged war stories - eg. a lady who's been travelling up to the Sydney Children's for over 11 years, since her daughter was 1!!!! because she (daughter) has persistent inoperable brain tumours that keep reappearing and she's now nearly lost all her sight. The longest stint they've gone without having to be up here is a whole 18 months!!! Unbelievable!!!.....and she was soooo positive!!!! I reckon you could write a book about all these war stories as a fund raiser for a charity!!! There's hundreds of such stories and all inspirational. You have to meet the kids to know what I mean.
Tomorrow night, Camp Quality NSW is doing Pizza in the ward so Julie & I will try and both have dinner with the other two kids for the first time in a while, seeing as we'll be in the ward and within easy reach for Lauren.
WBC 0.04
PLT 23
N 0.0
- Blood transfusion (2 units) today which should see a rise in tomorrow's HB reading.
- Platelet transfusion as well (1 unit)
- CT scan carried out as routine due to fever persisting greater than 72 hours. Scan was clear. Temp exceeded 40 degrees in early hours of the morning.
- Been Lauren's worst day yet in how she's feeling. She's in pain but being managed appropriately via one of the numerous pumps and corresponding drugs.
Kate & Nathan had their first Sydney sports carnival at their new school today. Nathan got a third place, Kate two thirds and a fourth. They're really settling in well in this school and are thriving on the harder challenges in work load and planning. I have changed my opinion of public schools for the better if Rainbow St is typical of the public system (no offence meant for St Johns, Bruce!!). 
Took Kate & Nathan to Coogee beach this afternoon for the first time since arriving here - was able to because volunteers from a corporate were cooking dinner for any families at Ronald McDonald House tonight, which freed up some time for us. Whilst we're not staying there, they invited any families from the ward. Was good to catch up with other families over dinner. Exchanged war stories - eg. a lady who's been travelling up to the Sydney Children's for over 11 years, since her daughter was 1!!!! because she (daughter) has persistent inoperable brain tumours that keep reappearing and she's now nearly lost all her sight. The longest stint they've gone without having to be up here is a whole 18 months!!! Unbelievable!!!.....and she was soooo positive!!!! I reckon you could write a book about all these war stories as a fund raiser for a charity!!! There's hundreds of such stories and all inspirational. You have to meet the kids to know what I mean.
Tomorrow night, Camp Quality NSW is doing Pizza in the ward so Julie & I will try and both have dinner with the other two kids for the first time in a while, seeing as we'll be in the ward and within easy reach for Lauren.
Monday, 4 August 2008
Update #30. Day +4
HB 90
WBC 0.02
PLT 10
N 0.0
- Platelet transfusion today. Nose bleed from last night got worse this morning.
- Throat pain from mucositis getting worse, morphine increased. She's not talking unless essential due to the pain.
- Lauren gone down hill quite a bit in a day ie. in comparison to yesterday.
- Fever still there. 39.4 degrees tonight. Forgot to mention she's had a fever since Day +1.
- Only thing of note today, her christmas tree (see photo Update #25) was replaced with a new Christmas tree that has 'two trunks' and more pumps than before. The number of lines going into Lauren are more confusing than trying to unravel christmas lights. Must be six pumps utilised as that many powerpoints are being used.
WBC 0.02
PLT 10
N 0.0
- Platelet transfusion today. Nose bleed from last night got worse this morning.
- Throat pain from mucositis getting worse, morphine increased. She's not talking unless essential due to the pain.
- Lauren gone down hill quite a bit in a day ie. in comparison to yesterday.
- Fever still there. 39.4 degrees tonight. Forgot to mention she's had a fever since Day +1.
- Only thing of note today, her christmas tree (see photo Update #25) was replaced with a new Christmas tree that has 'two trunks' and more pumps than before. The number of lines going into Lauren are more confusing than trying to unravel christmas lights. Must be six pumps utilised as that many powerpoints are being used.
Sunday, 3 August 2008
Update #29. Day +3
HB 93
WBC 0.02
PLT 25
N 0.0
Blood nose again tonight, so another potential platelet transfusion tomorrow.
WBC 0.02
PLT 25
N 0.0
Blood nose again tonight, so another potential platelet transfusion tomorrow.
Saturday, 2 August 2008
Update #28. Day +2
HB 73
WBC 0.02
PLT 54
N 0.0
- Blood transfusion today.
- Feed line was inserted this morning as Lauren had a reaction to the platelet transfusion last night.
- She's been watching TV or sleeping.
Weekends have been really good weather here, but during the week been basically raining since we arrived. Saw more rain in 20 mins one morning than in a whole year in Adelaide!!! Very windy yesterday & today. So windy, saw a chicken lay the same egg 3 times!!!!
A few people have asked about our email address in Sydney - just to advise it's the same as in Adelaide ie. Krelsh@........
WBC 0.02
PLT 54
N 0.0
- Blood transfusion today.
- Feed line was inserted this morning as Lauren had a reaction to the platelet transfusion last night.
- She's been watching TV or sleeping.
Weekends have been really good weather here, but during the week been basically raining since we arrived. Saw more rain in 20 mins one morning than in a whole year in Adelaide!!! Very windy yesterday & today. So windy, saw a chicken lay the same egg 3 times!!!!
A few people have asked about our email address in Sydney - just to advise it's the same as in Adelaide ie. Krelsh@........
Friday, 1 August 2008
Update #27. Day +1
HB 93
WBC 0.04
PLT 23
Neutrophils (N) 0.0
- Platelet transfusion required today as Lauren has persistent nose bleeds.
- Throat getting soarer from mucositis so morphine has been increased.
- A new nasal tube (for feeding) needs to be inserted as she sicked up the last one. Second time this has happened and likely not the last.
Otherwise all going well
Kate got invited to her first party tonight from a new school friend.
WBC 0.04
PLT 23
Neutrophils (N) 0.0
- Platelet transfusion required today as Lauren has persistent nose bleeds.
- Throat getting soarer from mucositis so morphine has been increased.
- A new nasal tube (for feeding) needs to be inserted as she sicked up the last one. Second time this has happened and likely not the last.
Otherwise all going well
Kate got invited to her first party tonight from a new school friend.
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