Update #50. Day +33. Day leave, to night leave, to back in hospital

Since last update Lauren has had a few more days "gate leave" and was fantastic for her to spend Friday and Saturday night at the unit. Sunday night saw her return to the ward as one of her kidney readings is going the wrong way and they've put it down to a chemical reaction from the combination of drugs she's on - particularly from the drug for the suspected fungal infection. She's been on hydration through the night on Sunday, Monday and tonight as she's now drinking enough through the day herself, but the readings were still declining until this mornings reading. One of the expected hiccups along the way. She's been surprisingly well and I think the leave from the hospital is actually helping her spirits soar. Although we've stopped taking her out too much.

One of our early blogs when we arrived in Sydney was the other Adelaide girl who was in the next room at the time was going home soon after a successful transplant - well she may be going home this week, although she's now got Shingles. So we're not going to push it with the field trips too much. You just don't know.

The good news is Lauren hasn't had a full blown fever for a long while now which has helped with her feeling so well. She challenged one of the nurses to a singstar competition the other day. Lauren won the first song, Tina won the second, so no doubt a playoff brewing. She wanted to stay in and continue the challenge rather than leave the hospital (I think the drugs are now playing with her mind), but thankfully the nurse had a talk to give at a meeting and had to go.

Hb 89
WBC 3.50
PLT 130
N 1.7

Update #49. Day +27. Day leave again (afternoon at least)

Today saw Lauren get day leave again in the afternoon. She had to wait for a visit from the infectious disease Doctor to look into a suspected fungal infection in her lungs, so she filled up a bit of time learning guitar with the music therapist.

She's being treated for a possible fungal infection as a result of the scans over the last few weeks here and months prior in Adelaide - the cause of the delay in the transplant in the first place. Having said this, they're still happy for her to have day leave at the moment. Whilst she's not getting fevers, her temperature spasmodically keeps running a little on the high side indicating something is brewing somewhere. The only way to be 100% certain is to operate for a biopsy as it's so small and not very accessible - which is not an option, so she's just being treated as if it is fungal infection. More drugs, but thankfully can be taken orally rather than the drip (Christmas tree is just about dead now, yeah!!!). Drip just goes on at night for feeds, more as a top up for fluids as of tonight.

Tonight Kate & Nathan got a cooking lesson for scones from Janelle of Channel 10's, "Ready, Steady, Cook" show who volunteers at Ronald McDonald house once each week and Ambassador for same. Lauren used to watch the show in Adelaide and wants to meet Janelle when she's allowed to mix with people again.

Hb 88
WBC 4.09
PLT 146
N 1.4

Update #48. Day +26. Lauren's first day leave from hospital

Today saw Lauren leave the hospital for the first time after 36 consecutive days . Was great to have her out and have the family together for a short time after Kate & Nathan came home from school. Last night they opened up a room so the family could be together for the first time in over a month and today saw this go to a new level where she got to leave the ward during the day and see some of the local beach areas (whilst avoiding people), as she is still at risk of infection, particularly up to Day +100. Her blood counts continue to go well and no fevers for a number of days now.

Bought some alcohol wipes today to maintain cleanliness - only issue is they only come as a carton so we now have 1,125 wipes, which should see us wiped clean for a long time yet!!!!



Hb 90
WBC 4.10
PLT 129
N 1.4

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