Update #47. Day +25. Hello from Lauren (& Julie)

Hey everyone its me Lauren,

Mum and Dad have been hogging the blog and now that I’m feeling better I thought maybe it’s time for me to do one.

The last couple of days have been fantastic for me; I’ve been feeling a lot more energetic, and just generally well. I had my first walk out of my room,
it felt so good to get out. Today they took me off my feeds, and instead of the double Christmas tree I used to have I now have a single one so I think I’ll be out of this room more often now as it is easier to move around with a single drip pole.

Some other fantastic news is hopefully this week I get some day leave where I’ll be able to leave the hospital for the day and come back to sleep!! Fingers crossed for tomorrow!

My counts are definitely showing that my bone marrow is working and reproducing, as my platelets were 100 and something today, which is enough to donate if I could!! The doctors are really pleased at the way I am going!



I’m still a touch itchy and shaky but hopefully all that will clear up soon.

That’s about it I think,

Well better go, hopefully see you all soon!!

Lauren

P.S thank you to all those people who have sent gifts and cards, I really appreciate them (and the cards make my room brighter as well!!!)

Hi all,

Going by all the texts I received today everyone is concerned something is wrong as there has been no blogs.

Last week, the Graft vs Host disease hit Lauren with this awful itch all over, hence Michael and I didn’t get much sleep as we were up most nights with her. Her temperature was still high and she was generally unwell and tired. Itch to treat is worse than pain and was driving Lauren crazy as she was on so many drugs and nothing seemed to ease it for her. But thankfully she is feeling a lot better and has some “waves” of itchiness but nothing like last week. The frustration of not being able to help and the sleep deprivation made for us all being a little cranky !!!!!! Sorry typo “me” being a little cranky !!!! (B/S - delete 'little')

Oh how good it was to see Lauren walk around the ward for the first time, she has to wear a mask, (she will have to wear one for some time out of the hospital) she has got quite weak with her muscles so looks like we will be doing lots of walks when we get home to build her up. (she won’t be able to go to school for 3 mths when we get home).

Anyway thanks all for your concern, we will only now be updating the blog as things come up, so be assured no news is good news. Hope to get some photos on the blog for you soon.

Luv Julie

Hb 92 (range 115 - 165)
WBC 4.63 (3.50 - 11.00)
PLT 130 (150 - 450)
N 1.8 (1.7 - 7.0)

Update #46. Day +20

Hb 83
WBC 4.46
PLT 108
N 3.9

Itchiness from GVHD now all over Lauren's body. Comes and goes like the waves at Coogee. She has some creams to use to help, but the drugs to knock her out seem to eventually have the best impact. Don't know what to do to help her as it's not on her skin's surface, though I think she's playing it up for all it's worth as she now gets a foot massage each night from Mum or Dad - whoever's on shift. Fever is now low grade which always is an improvement in how she feels.

Had her first guitar lesson from the music therapist this afternoon. Went a whole 5 minutes before she was too tired, but she's keen to do this each day. Her taste buds seem to be coming back slowly following the radiotherapy/chemo.

Tonight is her 30th night in this bed & room. Her limbs are aching a bit, more from the lack of use and any muscle tone in her limbs has all but gone. She has a few sips of drink through the day, but her main feed is via the nasal tube and TPN (total parenteral nutrition) which is intravenously fed to her for ongoing nutrition.

Update #45. Day +19 (GVHD)

Hb 84
WBC 4.60
PLT 95
N 3.6

Slight improvement in how Lauren feeling today. She definitely has graft V's host disease which is a good thing. Just hopefully won't get too severe. Itchiness under her skin on her hands and feet becoming unbearable for her and keeping her awake. Sleeping a lot through the day.

Update #44. Day +18

Hb 95
WBC 5.75
PLT 78
N 5.1

Hi All,

Well Lauren’s a little better from Friday, still low grade fevers, but blood pressure stabilized. Still very nauseous, but at least a little more alert. Walked in yesterday for my shift at hospital and she was playing a card game with Michael, which was great to see. Michael cheating of course – can’t help himself. !!!!!!! (this is Bullsxxt folks!!!)

She woke through the night with very itchy palms and feet. Doctors have checked this morning and feel it could be some Graft V Host disease (GVHD) which is a good sign, so keeping an eye on her today to see if it gets worse. Also today if Lauren feels up to it, they are allowing her to go for a walk in the passageway of the ward, will take two of us to keep the “Christmas Tree” in tow but when you have been in the same room for 4 weeks she is willing to give it a go. She needs to wear a mask, but are keen for her to try as she is getting a lot of muscle pain due to being in bed for so long.

Kate and Nathan went to Grandmas for the weekend and are enjoying having ‘sleep-overs” at her house. Nathan rang me in hospital as they had seen a shark (only the fin) at Manly beach; the lifeguards were calling the surfers out the water. He was so excited – I was so excited it was cold and he wasn’t in the water !!!! On the weekend at Coogee Beach they had two whales sighted. Was going to walk down early on Sunday morning to see if they were still there as my turn to be home that night - but bed was too good, pulled the covers up and went back to sleep. Having lovely weather -sunny and 18c, so finally got a chance to sit on the balcony with my ipod (the best gift ever from my lovely friends) and enjoy the moment.

Have you all sensed Michael might not want to come back to Adelaide – showed him a real estate ad for this area. Basically, starting at 1.5 million, buys you a small house no driveway or garage (they park on the street here) so he would have to sell his camper trailer, Think I have put an end to that thought of moving. But I must admit we both love being near the beach. Seems to be a D.I.N.K.S area (double income no kids) as walking up to the hospital one Saturday morning there was not a seat spare in any of the cafes, and the smell of those cooked breakfasts/hot coffee was irresistible, well just bought a take-away coffee!!! Thought of home where Saturday morning is sport/swimming etc. and a bowl of weet-bix !!!!!!!!

Lovely talking to you all.

Bye for now
Luv Julie

Update #43. Day +17

Hb 84
WBC 9.48
PLT 58
N 8.7

Update #42. Day +16

Hb 111
WBC 9.88
PLT 42
N 9.2

Whatever the infection is, continues to give Lauren a fever and making her sick and subsequently uncomfortable. Thankfully she hasn't vomitted up her nasal tube these last few days. You can see the rise in her neutrophils (N) trying to fight the infection itself. Unfortunately, to assist combat the fevers a cannular (drip into her hand, which she hates) was inserted today as they needed another line into her and her 'port' is already fully utilised with numerous drugs. This also meant the return of another pump to the 'christmas tree'. Hopefully they'll be able to ascertain the cause/location of the infection soon.

Tonight the Concordia card came in handy to fan Lauren down as she is terribly hot and already on whatever medications are available, to make her feel more comfortable. New antiobiotics they started yesterday might do the trick soon. Process of elimination - not an exact science at all.

Thanks for the emails about people joining the 'Light the Night' walk. Wish we could be in Adelaide doing it as well. (see update #40 for details).

Kate & Nathan got a break from living in the unit this week when we found a great park in Coogee, with one picture here showing them joining us for our late lunch last Thursday. Today they got to see some more of Sydney with another ferry ride, this time to Manly - always therapeutic being on Sydney harbour.

Update #41. Day +15

Hb 104
WBC 9.10
PLT 47
N 7.2

Hi all,

Michael and I are both in hospital with Lauren at present as she is really unwell. Has had consistent high temps (40') throughout last night and today, blood pressure low and is extremely nauseous/vomitting intermittently. Doctors sent her for CT scan this evening trying to work out where possible infection is. They assured us that this is all part of it (I think they say it to make you feel better) they are trying to give her medication to ease nausea, then she vomits!!! vicious circle.

Feeling low at present as Lauren is so sick again, (bummer - as she was starting to be more alert and feeling better) please, please keep praying and sending positive vibes to Lauren (some for me too please!!!!) hopefully get some news on the scans soon, believe they are speaking to radiology dept now.

bye for now
Love Julie

Update #40. Day +14 (2 week mark)

Hb 109
WBC 9.65
PLT 45
N 4.5

The good news is some of the pumps on the 'christmas tree' are starting to disappear (well one anyway !!) or others are not being used continuosly anymore, which must be good.

Lauren spent today with a fever and has been feeling sick as they try and increase her feeds through her nasal tube. Thank goodness when she sicked up a few times today the tube didn't come out - how we are grateful for little things like this. Mucositis has just about gone - it certainly isn't troubling her anymore if it's there.

Julie & I had lunch together today for the first time since being up here, at Coogee beach as Grandma spent the afternoon with Lauren. Coogee is magic. Could easily live here.

By the way, anyone interested in joining a team for the 'Light the Night' walk in Adelaide on September 17, there's a team being registered by neighbours. Visit www.lightthenight.org.au or call 1800 500 088 for details. Under "join a team" search for: "Invergowrie Ave Friends of Lauren" and follow the links from there. Thanks Louise for organising this (see Update #34).