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

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).

Update #39. Day +13

Hb 105
WBC 12.09
PLT 31
N 5.8

We know everyone is most likely aware of the good news regarding Lauren engrafting by now. Thanks for all your emails, text messages, phone calls and apologies if we don't respond to all of them as there were heaps (and thanks for them all).

Lauren phoned me to tell me the good news yesterday morning (Julie and I alternate one night with Lauren and one 'home' to recuperate (which can happen once Kate & Nathan go to sleep) as you don't get proper sleep when in the ward) - wish you could have heard her telling me on the phone - was obviously scarier for her than she was letting on along the way and one major weight has been lifted off her shoulders. She's faced something many people who are reading this blog (including me) have yet to do - actually faced their mortality. We still need to go through graft V's host disease (GVHD), but at least we do so knowing the new marrow has at least taken. She sent us the following email which is golden.

hey mum & dad, just a little note 2 say thanx 4 everything u have done 4 me!! u have helped me get through this!! I LOVE U!! LOVE Lauren xoxoxoxoxoxoxoxoxoxooxoxoxoxoxo
http://www.00fun.com/wordsoflife.shtml

You may notice the white blood count and Neutrophils today have reduced since yesterday's reading - this was expected as they turned off the GCSF yesterday (Granulocyte colony-stimulating factor), a stimulus to promote growth of new white blood cells, particularly neutrophils.

Lauren received a huge card (filled with numerous other cards from the kids and teachers at Concordia College which made her day and she wants it set up on a special place on her 'wall'. We need a fifth wall!!!!!
nb. please do not send flowers as they are not allowed in Lauren's room or the ward because they can carry living organisms/potential infection etc.

Update #38. Day +12 Engraftment!!!!!!!!!!!!!!!!

Just wanted to say Hi to you all

WOW what a day today, Doctors walked in this morning and said we have some great news, “Lauren you have definitely engrafted !!!! which means the donor cells are now working." Lauren just burst into tears and then so did I - Oh my gosh those were happy tears mixed with so much emotion of this huge journey !!!!! We still have some hurdles in front of us but I feel like we are on top of that mountain, at the peak!!!! I wish I could explain this to you all, to know what this feels like is unbelievable, I just keep crying all the time. Think I need some retail therapy this arvo !!!!!!!

As many of you know I really struggled last week with seeing Lauren so sick. I have never seen someone so sick and weak before, and not being able to do much about it was really hard. Doctors said she will start to feel better as cells come in and that has definitely happened, still very weak but a little more alert and able to have a few sips of drink, Gets on her computer for awhile but gets too tired. One of the hurdles we now have to watch out for is the Graft Vs Host disease, the Doctors want to see some of this but not too much, so looking everyday for strange rashes and checking liver, gut function as it can affect the liver, so keep those prayers up, we are not out of the woods yet.

Girls - any suggestions for good hand cream? Have been using Hemp Cream from Bodyshop but these alcohol wipes etc are taking their toll – can’t afford for hands to get cracked as that can be infection risk for Lauren, so trying to use gloves as much as I can.

John (friend and hairdresser) hope you are reading this – please order in the industrial strength colour for my hair when I get back, the grey hairs are taking over!!!!!!!!

Thanks again for all those prayers, positive thoughts and love you are sending – feel them all the time.

Missing everyone

Love Julie

Hb 85
WBC 21.21
PLT 36
N 12.7 !!!!!!!!!!!!!!(>0.5 for for third consecutive day = engraftment)

Update #37. Day +11

Hb 106
WBC 10.07
PLT 37
N 6.2 (second day in row > 0.5)

Basically tomorrow if Lauren has a third day in a row where her neutrophils are greater than 0.5 again, they'll consider her new marrow to have engrafted from day +10 !!!! No fevers through the day today.

Still have to go through graft V's host diesease (GVHD) but at least currently on the right track (and coming in early at this stage). Some drug they're giving to assist in the creation of neutrophils is being reduced today or tomorrow as her bone marrow seems to be picking up the challenge itself.

By the way, the blood readings on these blogs are mainly for there aside from our own record, for the nurses and Dr's at W&C Hospital following Lauren's progress and a few friends in the medical fraternity who know what the numbers mean.

Also, if anyone from St Johns is looking at going on the 'Light the Night' walk in Adelaide on Sept 17 or organising a team (see Update #34), can you let us know via email as a family who used to be involved with St Johns, now living in the hills would like to join in.

Update #36. Day +10

Hb 120 (ref range: 115 - 165)
WBC 2.93 (ref range: 3.50 - 11.00)
PLT 20 (ref range: 150 - 450)
N 1.6 (ref range: 1.7 - 7.0)

Good numbers from Lauren's neutrophil (N) increase. We know the medical team are very happy to see these numbers coming through already. She's been feeling lousy today with a persistent bleeding nose. A platelet transfusion today hasn't solved it yet. Has kept her awake all day and she is now very tired, but finding it hard to sleep with the bleed. They've just 'packed' her nose which hopefully, will allow her some sleep now. Fevers are on & off through the day currently.

Caught up with the Borgas family from Adelaide who were in town for the weekend and joined them with Nathan & Kate for a ferry ride to Olympic Park and tour.

Update #35. Day +9

Lauren was much better today. Was able to get out of bed for comfort breaks on her own - first time in a while. Also for most of the day the fever was gone, which is making a real difference in how she's feeling. She ended up waking up last night and watching some of the Olympics opening ceremony after all. Whilst we know Graft V's Host disease (GVHD) is yet to hit, it's nice to have her feeling better for a while to give her a chance to recuperate for the next stage. (She's also giving lip, which is always a good sign she's feeling better).

Had 1 unit of red blood today, so her haemoglobin (HB) should be higher tomorrow. Also, too early to call, but it's nice to see nearly 1/3 of her new white blood count (WBC) show up as neutrophils (N) which must be her new bone marrow producing. We have been warned this can be very volatile at this satge, but none the less, a good sign.

Had a photo of 'Patsy' to put on today's blog, but lost the photo. Patsy has worked in the Oncology ward for the last 33 years at Sydney Children's Hospital and for the last 30 of those years has cooked a barbecue lunch every Saturday for the kids and their families, except when she's been on leave. Incredible lady and great barbecue. Will have to get a new photo next Saturday.

HB 80
WBC 0.66
PLT 56
N 0.2

Update #34. Day +8

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.

Update #33. Day +7

HB 92
WBC 0.02
PLT 17
N 0.0

Platelet transfusion today. Mucositis getting worse. Nothing else of significance.

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.

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.

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.

Update #29. Day +3

HB 93
WBC 0.02
PLT 25
N 0.0

Blood nose again tonight, so another potential platelet transfusion tomorrow.

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@........

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.