grown-up girl at a family birthday dinner

dressing up in an op-shop bride's dress and veil

When I put this blog together, I had hopes of keeping it updated with Rose's milestones.

So much for my intentions!

Here we are, five years after Rose received what she describes as "the best birthday present I've ever had."

Here is our bouncing 6-year-old school girl, whose liver function remains (fingers crossed) perfect.

TELEVISION SERIES ABOUT ORGAN DONATION

We're glued to the television every Thursday night at 9.30pm, for a series that's being shown on Channel Nine.

The Gift

We can't be objective in recommending this, because we've met so many of the people featured in the series. Most notably, Rose's little mate Bella, pictured in my earlier post, is one of the kids whose story is told.

friends, then, and now. . .

Rose on the left, and Bella on the right.

Photographed in our hospital room in December, 2003, about 5 months before Rose's transplant.

Rose and Bella play hilariously together whenever they meet. Their common experience (both born with biliary atresia) isn't exactly on their agenda. Dancing is, as well as cuddling, and falling over.

The time has come now for Bella - she requires a liver transplant.

Australian Organ Donor Register

Shane waits outside the broadcasting booth at ABC Melbourne's radio studios

On Tuesday 6 February, we were guests on Jon Faine's Conversation Hour, interviewed by Jon and his co-host Marieke Hardy.

Jon and Marieke first interviewed Allan Turner, the father of the late Zaidee Turner. His daughter's sudden death in December 2004 led to Zaidee becoming the only child organ donor that year in the state of Victoria.

In honour of their daughter, Allan and his wife Kim set up the awareness-raising organization Zaidee's Rainbow Foundation. Many readers will already be familiar with the work of this formidable man.

Coincidentally, Allan recently left a comment on this blog, and I sent him an email in reply. I had no idea though that that we would be meeting him so soon. Rose was delighted to cuddle him, and to chat with him about the lovely Zaidee.

Zaidee's middle name is Rose.

Rose leaving the ABC's Southbank studios, gripping her Nan's hand, Rose claiming that she was keen to eat a cheese sandwich

The day when we held our frail 8-month-old, hovering below 6 kilograms, wondering whether or not she would live. . . well, it seems more distant than ever.

ROSE HAS BEGUN KINDERGARTEN

The Australian Transplant Games are over until 2008. Rose's photo made it to a couple of newspapers this week: the Geelong Times (article entitled "Plenty of heart on the track"), and the Herald Sun (article entitled "New shot at life").

My incredibly generous cousin and her husband have been hosting us on the beautiful Bellarine Peninsula, near Geelong, so that we could easily attend the Games. We're so grateful for their love and for their personal support. And on a broader level, they are strong supporters of organ donation, with a much loved family member six years ago having donated all of her organs, changing forever the lives of eight recipients.

I have mentioned baby Rani. She died this month before she could receive a liver transplant that she desperately needed. Please think of her bereaved family, and others like them who will lose a family member this year because of the shortage of organ donors.

Most importantly, if you do support organ donation, please clearly communicate your wishes to your family, to spare them the anguish of wondering what you would have wanted. Many of those reading this blog will have already taken the crucial extra step to talk with family, apart from signing up on the Australian Organ Donor Registry. But there's no harm in my mentioning it again.

Rose is the youngest registered competitor in the National Transplant Games, being held this week in Geelong.

Pictured here at the opening parade, with some of her cute little Victorian competitors.

Rose's 10 metre run will be in honour of two people: her wonderful donor who has saved her life; and her little 12-month-old friend Rani, who died on September 1, waiting for a liver transplant.

Organ Donation

Rose's excellent doctors, and possibly hundreds of other professionals, delivered her to the point of being able to receive the gift of a donated liver. Our family and friends held us together during the long wait.

But without the decision of a grieving family and the gift that flowed from their actions, nothing could have helped Rose to survive for much longer.

Overly sentimental words seem inappropriate in thanking families who have agreed to the donation of organs. It's hard to get the words right.

I want to tell families who have donated organs that we cherish the gift of Rose's liver; that our little girl is now strong and healthy, with no apparent memory of her illness; that we never forget their generosity.

We are, of course, registered organ donors.

Shane describes like this his feelings about Rose receiving a liver:

"With young children, it is usual to imagine with excitement and trepidation their future; fanning out like the branches of a tree are the unrealized possibilities for their lives. I see Rose sitting at the trunk of such a tree, her life full of potential but as yet still narrow. With that potential our little girl also carries the skill, dedication, love and luminous generosity of the people who have made her life possible, and on her journey, nestled close to her heart, she cradles the liver of her greatest friend."

In the pink, mucking around with her sisters at home. Rose's liver function is now normal, and she is in excellent health two years post-transplant.

3 years old

Walkerville South, Victoria

Rose is delighted at the chance to spend a whole week in the same house as her cousins, who have generously invited us along to their beach holiday.

with one of her uncles

Christmas morning

Walking to collect the kids from school

Rose had a trip to the Emergency Department last night. She fell into what we were later told is a common Melbourne Cup Day trap for inquisitive toddlers - touching a hot barbecue plate!

Shane and Rose being interviewed for the ABC TV news, at the Royal Children's Hospital, celebrating its ten year old liver transplant program

at the school fete

Rose was last night permitted to sleep in the family birth centre with Shane and Mia and me. We're grateful to the staff for granting us that experience, which was very settling for Rose. She spent this morning falling in love with her new baby sister.

Rose became a big sister tonight, with the birth of Mia.

Forster, New South Wales

Port Macquarie, New South Wales

on the farm

Crowdy Head, New South Wales

Manning River, Cundletown, New South Wales

Crowdy Head, New South Wales

Crowdy Head, New South Wales

Crowdy Head, New South Wales

Central Station, Sydney

late night at the school musical

Discharged from the ward after a 2 night stay

Awaiting discharge from hospital, and enjoying the novelty of her lunch tray

brief hospital re-admission

Rose has had a rotten cold. She spiked 40 degrees on the thermometer last night, so to be on the safe side we brought her in to Emergency.

The medical staff in Emergency, when they discovered the many volumes of Rose's medical history, decided to err on the side of caution and admit her. Naturally, when "liver transplant" crops up in a child's file, the doctors tend to proceed conservatively.

She's having some IV antibiotics for a couple of days. Aside from her respiratory infection, she seems fine. Thankfully, her mild illness seems unrelated to her liver. Rose is enjoying socializing with a parade of her former health care staff.

at the party for her second birthday, Rose tries playing the game of Uno with her cousin

Easter lunch in friends' garden

not just a Valentine's Day celebration; a positive pregnancy test!

EXCERPT FROM EMAIL TO FRIEND WHOSE LITTLE GIRL WITH BILIARY ATRESIA IS DOING EXTREMELY WELL

She has enquired about Rose's progress, and I'm replying here:

". . . the transplant surgeon last Friday reckoned that she's "normal". A couple of her liver numbers are still to settle on exactly normal, but they're hovering down near normal. Bilirubin, albumin and ALP are all looking beautiful. (Her last bilirubin level was 2, a big drop from her very orange days that had her bilirubin up over 600!)

But getting away from numbers, she's talking away, scooting around on her bum (her version of crawling), eating like a horse, sleeping like a top, is pushing 11 kilos. She's a very robust little girl. (We always knew she was mentally and emotionally robust, but now her body is coming to the party too.)

She ditched her nasogastric tube at the end of November and is on minimal medication. She hasn't had so much as a cold since she was discharged, despite exposure to all the germs in the school community that Lewis and Hannah must carry home with them every day."

EXCERPT FROM EMAIL TO FRIEND

". . .thanks for asking, . . Rose is thriving. She's fantastic liver-wise, and is busily catching up on the milestones she missed while lying on her back. She. . . sleeps beautifully, eats like a horse, and is great fun - we're all having a ball. That Royal Children's Hospital is bloody spectacular, with its cast of hundreds of brainy and kind people who looked after Rose and our entire family. They didn't want just to keep Rose alive, but to become a healthy girl.

Whenever we visit the hospital for one appointment or another, it takes us the whole day, really. We visit her ward, of course, but outside the ward we bump into so many people who we became close to, from the dears who sell raffle tickets at the front door, to the technicians in obscure little specialty departments, to the shrinks, the PSAs, and even the guys who used to make our coffee nice and strong first thing in the morning after a sleepless night with Rose. And of course the other fellow patients in there, some of whom aren't nearly as lucky as Rose has been. Life is great, but we'll never forget the people who made it that way."

brief day surgery to have one stubborn stitch removed

A year ago I hoped that Rose would one day get her feet sandy at the beach.

My hopes are realized, but she has yet to learn to like the feeling. She cries if her feet venture off the towel!

asleep in a shade tent at the beach - her first-ever beach experience

Rose in the capable arms of her cousin

getting acquainted with a cousin at Christmas lunch with Shane's side of the family

This girl doting on Rose at today's picnic is the beautiful daughter of dear friends. She and her brothers showed remarkable warmth and maturity when they visited Rose in hospital not long before her transplant.

Many of our friends have children who have been aware of Rose's illness. It has been fascinating to see the tenderness with which these older children interact with Rose. It's like some of them can truly appreciate the situation from which Rose has progressed.

That femur seems to have healed up.

Rose's physical strength and flexibility seem to be improving at an exponential rate. It is hard to believe that she could barely hold up her head in late September when she came home from hospital.

Goodbye to the nasogastric tube that has been a part of Rose's life for the last 15 months.

She pulled it out two nights ago. So before re-inserting it for her, we thought we'd offer her formula to her in a bottle.

She happily took it, something she hasn't done until now. She took all feeds orally yesterday, and medicines too.

So if she eats, drinks and takes her medicine: no tube required.

This is a very significant step along Rose's road to a normal life.

Rose giggles with her wonderful general surgeon. One of Melbourne's best-known and expert paediatric surgeons, he has operated many times on Rose during her long illness. Nothing is too much trouble for him.

Enthusiasm for solids is carried over to the next day.

Rose has decided to eat solids for the first time - starting with lamb cutlet and roast potatoes!

Rose is in the baby hammock, left rear, safely evacuated by her aunt.

Our birthday lunch this afternoon with the extended family was interrupted by the barbecue catching on fire(?!)

Rose's uncles seem to be trying to suppress smiles.

We bump into our nurse friend at our school fete. He's delighted to see Rose enjoying life out of hospital

Enjoying the school fete. This time last year Rose ended up in hospital the night before the fete, with pancreatitis.

It still feels like a supreme novelty to be attending hospital OUTpatient services, rather than the far more familiar INpatient ones.

Pleased at having pulled out her nasogastric tube. (Rose retains it only until she learns how to eat and drink. Easier said than done for children who have had oral feeds banned for long periods.)

waking up at home

Rose leaving hospital after 10 and a half months' continuous hospitalization

Some of the nurses on shift for Rose's last day in hospital. The party lasted all afternoon long.

Rose in the arms of her paediatric hepatologist - the wonderful conductor of the enormous "orchestra" working to heal Rose. We love this brilliant woman.

Rose has another farewell session with a favourite nurse. He gave her an inscribed copy of the wonderful Pat Hutchins book "Rosie's Walk". Boy, does that tale parallel our Rosie's Walk!

A long journey with this exceptional nurse. She's the first nurse we encountered on the ward last September when Rose began her series of admissions for liver disease. Rose spoke her name shortly after learning to say Mum and Dad.
We have grown very close.

A snuggle with a favourite nurse

A story on Nan's lap

Have I mentioned that one of the complications of liver disease is an inability to absorb Vitamin D? This deficiency in the vitamin can lead to brittle bones.

In Rose's case, not only is she vitamin D deficient, but she has been too ill during her life to bear any weight through her bones. A recipe for super-weak bones.

To cut a long story short, Rose's femur was accidentally broken this week. It happened in Radiology, nobody's fault, in the presence of my mother, poor thing, who was doing one of her twice-weekly overnight stints with Rose.

By the way, we wouldn't have coped nearly so well with Rose's illness and recovery without the herculean backup of my parents. It is fitting that they were present at Rose's birth. Since the moment she emerged into the world they have accompanied our little family at every step. After Rose returned to the ward from ICU, my Mum began doing regular overnight stints with Rose. This has had many effects. One, it gives the kids the experience of having both Shane and I home with them at night, something they missed out on with Shane and I in our usual routine of alternating sleeps at the hospital. Two, Mum and Rose are deepening their bond. Three, Mum is enjoying developing a relationship with Rose's large health care team. It's rewarding all round. Mum says she wouldn't miss this opportunity for quids. Aren't we lucky?

Everybody feels terrible about this broken femur, but once her leg was placed in a cast Rose was again happy. She's waving that leg around quite nonchalantly. Bones mend.

We're naturally cautious whenever we move her, wanting to avoid any further fractures while we wait for her bones to strengthen.

How do we find the words to thank complete strangers (and anonymous friends) who, upon hearing of our broken-down washing machine, have chipped in to buy us a new one? The kindness in this community seems boundless.

physio session - back to basics physically, after so long lying down.

EXCERPT FROM EMAIL TO FRIEND

"Rose has just passed her 8 month milestone for continuous hospitalization, and her 3 month milestone for transplant was today. She is a GREAT kid!"

Rose throws herself backwards in the safe arms of this particular nurse. They know each other well, and it's a private game that they play.

Rose with her great buddy, Pop (maternal grandfather)

Two of Rose's favourite nurses returning her to her bed on the ward, after a couple of hours back in ICU (dodgy breathing after a procedure this morning under anaesthetic).

EXCERPT FROM EMAIL TO FRIEND

This time it’s Shane doing the writing!

“Rosie is powering on, she has regained the ability to smile, kiss, talk and now she also giggles, although we can't make her giggle too much as it looks like it begins to hurt after few chuckles and we don't want her splitting her sides.”

A fresh start for Rose's head of hair. While she slept, I snipped it off close to her head.

She is wearing a "faux pearl" bracelet, part of a set of jewels made for her by one of her beloved nurses.

EXCERPT FROM EMAIL TO FRIENDS IN MY BOOKCLUB

“She's finally going quite well, after leaving ICU About 10 days ago. Thought we'd never get her off the *^$% ventilator - it was very scary.

If I’d known on the day of transplant that she wouldn't be returning to the ward till 50 days later, I'm sure I would have had kittens when we handed her over to the transplant team.

I didn't cope with the ICU experience at all well. It's fortunate for Rose that Shane so deftly took up the emotional slack. He's a very steady fella, thank heavens. Imagine if Rose had two nervous nellies as parents.

Rose herself is a steady little rock too, of course. She didn't smile till last Tuesday, nearly 8 weeks after transplant. Truly, it seemed that she had utterly forgotten the notion of happiness. Not only was she not smiling, but her eyes looked so sad.

Not any more - we're so relieved and grateful to see her happy again.”

After school with Rose

Hannah plays with Rose's feet

Humpty Dumpty had a great fall

She seems to know that she smiled a minute ago

I know it's blurred, but the final photo in the short series above shows Rose's first smile since May 6.

Rosie lost most of her hair during her time in ICU. Every time I brush olive oil through it like this, it seems that a hundred or more hairs come out.

It might be best to just cut it all off and start again. . .

View out of Rose's window, just before sunset

A ward girl again.

Look at the natural light flooding the room. A small thing, perhaps, but one of the many aspects of our familiar environment that we're appreciating in its contrast to the ICU environment.

WE'RE OUT OF ICU!

Transferred to the ward today.

Rose has miles yet to travel in her recovery, but this move from the intensive care setting, at Day 50 post-transplant, means the world to us.

A magnificent step today - off the ventilator!

Rose has picked up suddenly and significantly since the decision was made to recommence feeding her parenterally (direct into the bloodstream via a drip).

This kind of feeding carries risks. While it undoubtedly enabled her to gain her pre-transplant fat, and it is a useful way of nourishing the extremely ill, total parenteral nutrition (TPN) can place a strain on the liver. Rose's new liver can hardly afford any extra strain.

But on the other hand, she's had so much trouble keeping down any food, that she has become quite under-nourished again. She needed energy in order to fight and recover, and start breathing on her own again. TPN is providing that energy.

They'll be keeping a close eye on how her liver handles the TPN.

Moved again to the room with the natural light. It makes an enormous difference to the atmosphere in the room.

Rose seems to be biding her time. She seems more relaxed.

EXCERPT FROM EMAIL TO FRIEND

Some lighter stuff. . .

”I'm also reading some very entertaining children's fiction. Hannah dragged home about 4 kilos of books from her library visit yesterday.

The one I read to her tonight is a 25 year old story called The Wild Washerwomen! 7 wild washerwomen go on a violent but funny rampage lasting weeks. They had had it with their exploitative boss and tipped a pile of dirty washing on him before wreaking havoc on their own village and the surrounding ones, travelling around on a carriage drawn by a mad goat!

Challenging stuff for Hannah at bedtime - she needed to knit a few rows of scarf to settle down after hearing of the slightly violent triumph of those washerwomen!”

Back in the room with Rose, Hannah gets back to her many ways of amusing herself.

Rose has been struggling with the task of breathing. Her oxygen saturation dropped this afternoon. Hannah and I were asked to leave the room while Rose was re-intubated.

We waited in one of the fluorescent-lit waiting rooms, and I tried to talk calmly with Hannah while my anxiety level rose.

Hannah kept me on an even keel with her matter-of-fact chatter. To pass the time we took photo portraits of each other and of her bear.

One of Rose's favourite ward nurses visits to give her a pep talk: you have to fight, Rosie!

Lewis cuddles Rose on his 11th birthday

EXCERPT FROM EMAIL TO FRIEND IN THE UK

This is again my Australian friend living in the UK whose baby girl is just 10 days older than Rose.

“We're going OK despite the setbacks. Rose's dodgy liver function numbers (bilirubin, gamma GT, ALP) are slowly starting to level off and sometimes fall, which is what they're supposed to do. Last week, they were climbing and her jaundice was deepening - always a worry!

She had the ventilator removed a few days ago, but is still receiving some breathing assistance via CPAP. With any luck she'll be off that today, and might even go up to the ward.

She's properly awake now that the morphine's clearing out of her system, and appropriately cranky when the nurses have the audacity to suction her airways! Shane reckons she says "Help!" After a month of not hearing her, her little voice sounds so sweet!

We're staying positive.”

Shane and Rose have an afternoon nap

The ward nurses took Shane and me out for lunch, to the pub across the road. What a treat to spend time with these fine people who have become our family, not to mention the rare opportunity to feel some fresh air and winter sunshine.

The love they have for Rose is palpable. Many of the ward staff have been visiting her, at all hours. Rose sometimes has dozens of visitors across a 24 hour period.

We're pining for ward life almost as though the ward is "home". You can see how an extended stay in ICU has our world skewed a little: the goal is not yet even to get Rose home - just off the ventilator and back to the ward!

EXCERPT FROM MASS EMAIL TO FRIENDS

"Rose has had us worried a number of times since transplant. She's been back to theatre four times, has fought off all manner of bugs, been extubated once and re-intubated within hours, had six perforations in the small bowel sewn up, blah blah blah.

But then very scary news this week: a liver biopsy showed that her new liver had suffered some early rejection of the bad kind. The kind that attacks the blood supply to the bile ducts. There's evidence that she has had some generalized damage to the bile ducts! There could be problems with bile properly flowing out of the liver.

When we heard this, I flipped out with anxiety, because of course her original liver condition, biliary atresia, was all about damaged bile ducts trapping bile in the liver, causing cirrhosis and eventual liver failure.

However, this new damage has occurred because of rejection, but the rejection has somehow burned itself out and is no longer active. Rose doesn't have a progressive, degenerative disease like she had with the old liver. Some kids apparently recover slowly from the kind of damage she has now. This new liver, even if damaged, is infinitely better than the one they removed.

Bottom line is that while it's pretty devastating to hear that her new liver now has problems, it should get her back up to the ward and eventually home. If she needs another transplant further down the track, then so be it. Let's see how far this liver can take her.

I know I sound kind of resigned, but I have to admit it's been a hard week to get through. Some positives though: she may be taken off the ventilator tomorrow, and if she copes with that, she might be able to return to the ward we know and love.

Will try to keep you posted. I won't send a photo at the moment - Rose is looking very battered and bruised, and has had sad eyes for a month! She's off the morph as of this morning. She did reach up and touch my face tonight, for the first time in weeks. Can't wait for a smile.”

EXCERPT FROM EMAIL TO FRIENDS

". . .the little rascal is still on a ventilator in ICU 4 weeks after transplant! But that's another story. . . she's having a rocky ride - her new liver had some early rejection that has left the bile ducts with some damage. She's been back to theatre 4 times since transplant with all kinds of problems, including 6 little perforations in her small bowel. We're waiting to see how things settle, but she's continuing to fight. She's a great little kid!"

EXCERPT FROM EMAIL TO FRIENDS

These are people we shared a room with at the hospital late last year. Their daughter has a very rare degenerative neurological disorder. They have emailed us, and I'm replying here.

"We've had Rose down in ICU for nearly a month. We are very lucky that she received a liver transplant on 6 May. She's been battling away on a ventilator since then, returning to theatre 4 times to fix various complications. We're hoping she can start to progress soon."

EXCERPT FROM EMAIL TO FRIENDS

These are friends from the kids’ school. Their child has had surgery and treatment for a life-threatening illness, at the Royal Children’s Hospital. They were in the hospital last Tuesday while their son had treatment.

"Shane and I were both around the hospital on Tuesday. . . We had a very sad afternoon and evening, but thankfully not because of Rose.

A boy who'd had a . . . transplant on the same day as Rose's transplant had been sharing Rose's room. (They keep transplant recipients isolated together because they have the same barrier nursing requirements, etc.) Naturally we'd spent the past nearly 3 weeks in his family's constant company. Lovely folks. . .

Sadly, the boy was assessed to be brain-dead on Tuesday, and his family had to go through the harrowing process of withdrawing treatment and saying their goodbyes to him. To be so close to their loss was very intense and humbling. The nurses were bloody amazing.

Rose, though she looks bloody shocking at the moment with huge healing incision scars, tubes coming out and going in everywhere, ventilator pumping away, huge belly and ongoing jaundice, seemed, to Shane and I at least, full of life that day. She had a raging fever, but spent the day air-kissing everyone and babbling (silently, because she can't make any sound with the ventilator).

We felt (and feel!) so grateful to have her, and so very sad for this boy’s folks."

Today is Rose's first exposure to natural light since transplant day three weeks ago.

Her bed has been moved, within Intensive Care, to one of the few rooms with a view. It's a huge morale boost for all of us to have her watching a patch of sky and the branches of a beautiful eucalyptus citriodora (I think). I gather it's also a welcome change for Rosie, after three weeks under fluorescent light all day and night.

Very ill, but banging her special drum on loan from Music Therapy, with another fond favourite from her ward nursing friends.

Rose's hepatologist writes up the necessary pages and pages of drugs on Rose's current chart

A visit from one of Rose's favourite nurses from the ward

EXCERPT FROM MASS EMAIL TO FRIENDS

“Hi everyone, Some of you already know that yesterday Rose received the gift of a new liver. She'd been on the waiting list for just four weeks, but her medical team reckon the donor liver came along in the nick of time. Her bleeding was becoming serious, to the point that no matter how many transfusions she had, nothing was really working anymore.

We had even gone as far as having me tested for liver donation, a step that Australian transplant teams are very reluctant to take, especially when the donor already has other children. I had passed all the tests, had a CT scan, and was all ready to go through with it if she deteriorated suddenly without a donor organ becoming available. We're so relieved that things didn't need to go that far.

We've had a huge couple of days, and we're all tired, but everything's gone beautifully so far. The surprise news is that the surgeons discovered that Rose's pancreas seems to be fine after all. (For those of you with a medical background, her lipase is plum normal today!) It seems that a couple of large structures on the diseased liver itself had been pressing on the pancreas, apparently causing Rose's pancreatitis. The surgeons and the liver specialist had never before seen the likes of this thing that had developed on Rose's former liver. [warning: images of the actual diseased liver at the following link] The old liver was so diseased it was like a "little brick". . . Better out than in, eh!

Tonight Shane and I are home together for the first time since New Year's Eve. This is because Rose doesn't know whether we're there or not at the moment, thank goodness. She's heavily sedated in Intensive Care, to prevent her moving too much while her new liver settles in. We'll be back with her constantly as soon as she shows any sign of rousing.

The liver is already working really well, but it will take a while for her severe jaundice to clear. There may be any number of complications to come, but there's no point worrying about that yet. The transplant surgeon says he has never seen a transplanted child look so good in ICU immediately after surgery.

I must go to bed. We're on top of the world! We're so lucky! I've attached a couple of photos: one of us with Rose in the hour before she went off for her transplant, and another of Rose with Lewis and Hannah.”

EXCERPT FROM EMAIL TO FRIEND IN THE UK

This is again my Australian friend living in the UK whose baby girl is just 10 days older than Rose.

"Rose was placed on the transplant waiting list one week ago, and she's chubby and happy and gorgeous. She has no idea she has end-stage liver failure! It's weird! The doctors reckon kids cope with liver failure heaps better than adults do - I don't get it! Adults would be lying in a hospital bed feeling at death's door, while kids like Rose play and laugh and babble all day long. What's the story?

It's a nerve-wracking wait, a bit like waiting for a baby to arrive, really. Very much like it. Every day, you wake up thinking "Is it going to happen today?" Rose is so "ripe" for transplant, having finally grown almost to the weight they wanted her to get to, remaining infection-free, doing all the right things. The challenge now is that she might start to deteriorate before the right liver comes along.

But as usual, there is much to be hopeful about. The transplant surgeon, who we have come to love, again came to see us tonight, and gave us a very upbeat talk about his opinion of Rose's long-term survival chances. He's an inspiring man who seems to know what he's doing, and reckons Rose should be transplanted in the next couple of weeks and should do very well. He's putting her long-term survival chances well over 90 percent. If she gets through the first week post-transplant, her chances of a near-normal life are great. Apparently if things go wrong, it all tends to happen soon after transplant, but he says Rose is in good shape.

Of course, the one thing he can't do is magically produce a liver for Rose! I feel that I can't say "fingers crossed", because we can't get away from the fact that we are waiting on somebody's death and their family's generosity! How can I hope for that? I don't hope for that, but of course I hope that Rose can be healthy. One of the paediatric liver specialists today said that in the future when a child needs an organ transplant we should be able to ring the tissue engineering bank and request a size 1 liver/heart/whatever for a baby with A-positive blood group. Still, we're so much further ahead than the situation was twenty years ago when these kids always died.

Anyhow, I look forward very much to getting back on the path of having a baby at home to write to you about. It really will be like bringing Rose home for the first time, after she has a transplant.”

One of the nurses who has got to know Rose very well. She is currently working as a transplant coordinator with the Victorian Liver Transplant Service based at the Austin Hospital.

EXCERPT FROM EMAIL TO FRIEND

”Shane's doing an extended stint in the hospital this week. . . He's been there since Sunday night. I'm in home quarantine with a cold. It's not even a bad cold, but Lew, Han and I are all infected, so we're keeping our filthy germs to ourselves.

Shane and I are being completely over-the-top protective of Rose in the 8 days before she's popped onto that transplant waiting list. It's so important that we keep her infection-free, because they can take kids off the list if they have anything like a cold. Imagine if we had to take her off the list over Easter - one of the busiest times of the year for organs becoming available (you know why: people dying after car crashes. It's too sad!) Anyhow, we just can't risk her getting a sniffle, because if she's not ready for the Easter transplant season, she might have to wait months, go downhill, maybe miss out altogether . . .

We're feeling pretty excited about Rosie. She's chubbing up beautifully, playing, babbling, being ridiculously cute and loving. One of her fellow "liver babies" received a transplant two nights ago in a 15 hour operation. So far so good. Those surgeons are getting a fair bit of practice transplanting little kids these days. Usually they do 5 transplants a year at the Children's Hospital, but we've watched 4 kids have transplants since October. 3 of those have happened since the David Hookes Foundation was established. . .”

EXCERPT FROM EMAIL TO FRIENDS

These are friends from the kids’ school. Their child has had surgery and treatment for a life-threatening illness, at the Royal Children’s Hospital

“. . . maybe I'll bump into you at school again soon. That's about the only time I'm out in the real world these days, but I must admit it doesn't occur to me to think about what I might be missing out on socially. Priorities shift down to the ultra basics, and I'm content with that as we concentrate on steering Rose to good health.

I don't know about your social life, . . . but ours is very much on hold in the leadup to transplant, with visitor restrictions, etc. The hospital team is getting pretty protective about Rose, especially as she needs to stay in tiptop shape if she's going to make it onto the transplant list. We're just having family in the room at the moment.

. . . We heard today that Rose's official placement on the transplant waiting list is probably blowing out by 4 or 5 weeks. The doctors agonized over a decision about whether or not to immunize her against measles-mumps-rubella before transplant, even though babies usually need to be at least one for that particular vaccine. They have decided to go with the jab, but that means she needs to wait till the live virus is out of her system. About 4 more weeks.

It's a setback, but a tolerable one, especially when we consider the possibility that her life post-transplant would be threatened if she caught an infectious disease. She'll be artificially immunosuppressed for life, to prevent organ rejection, so it's worth being thorough about immunization before she has a transplant. She's had lots of extra vaccines lately, sweet little pincushion!”

EXCERPT FROM MASS EMAIL TO FRIENDS

“A quick note to communicate the important news that Rose is going to be placed on the waiting list for a liver transplant, in about 8 days.

Yesterday the transplant surgeon came to see Rose, and said "Well, there's not much to say. Let's book her in!"

A moment of anguish on him pronouncing those words - I truly thought he had said "It's looking grim". Can you imagine my relief when I cleaned out my earholes and took in what he had actually said?

We know we're still a long way from Rose being in the clear, but the fact that she's made it through to being listed is huge . . . Her liver specialist says that despite her small size, Rose has proved that she has a really strong constitution, and has a fighting chance. Transplantation is her only chance for a healthy life; her liver condition would otherwise kill her in the coming year or so, or even sooner if she succumbed to a nasty infection.

It's a very emotional time, knowing that we'll be waiting on the decision of a grieving family to donate. Impossible to ignore the gravity of that. One of Rose's ward mates is booked in for a transplant at 6 tomorrow morning - just in time for him, as he's critically ill and had only been moved down to Intensive Care today. A little 5 year old guy. Heady times.”

EXCERPT FROM EMAIL TO FRIEND

This friend emailed to ask what she could do for us – a common question from friends and family. We are lucky to have such strong support.

“We're getting great care, from pretty well every department in that hospital. Talk about straining the health dollar!

I can't think of anything we need, but I can tell you that each time I receive a little email like yours, it boosts my spirits. It really does help to know that people are thinking of us.

And Rose is, indeed chubbing up beautifully. The transplant surgeon visited her last weekend, and says he's very impressed and encouraged. He may even decide to transplant her before she hits 8 kilograms.”

EXCERPT FROM EMAIL TO A FRIEND

Another long lost friend, discovered via the internet. This time, the friend is one I lived nextdoor to in 1969! We lost touch in about 1981. Lots for both of us to catch up on.

“Life's really busy because our baby, Rose, is sick - lots of hospital admissions in her little life, and she has been in Royal Children's since start of December.

Her dad, Shane, or I stay in there with her every night, while the other sleeps at home with the older two kids. I'm about to head in to hospital now. Rose is in an isolation room, with only family allowed to visit, because of her lowered resistance to infection.

The single room thing is a blessing for us during this long admission, as it has its own shower and toilet. Not many patients in the Royal Children's enjoy such luxuries!( We've had lots of other admissions in the general wards, cheek by jowl with other patients and their carers. I'm a light sleeper, and don't sleep a wink in those circumstances!)

I could tell you the story about Rose's illness, but it's a long one and I really need to get off this computer within the next 5 minutes. Bottom line is that we're trying to grow her large enough for a liver transplant to be viable.

It's been a very rocky ride, but she's still hanging in there. She's being fed direct into her bloodstream now, with a little bit of breast milk through a nasogastric tube. Any other ways of feeding we tried just didn't allow her to absorb anything, and she was skin and bone. Really hard to watch, when our older kids were just so easy to grow as babies. . .”

EXCERPT OF EMAIL TO FRIEND

I'm updating her on the progress with weight gain since Rose's total parenteral nutrition (TPN for short) began at the end of January.

"Rose is going well at the moment. Has put on half a kilo, and we're feeling good this week."

EXCERPT FROM EMAIL TO A FRIEND – THE MOTHER OF ANOTHER LITTLE GIRL WITH BILIARY ATRESIA

She sent an email asking how Shane was going with his hunt for a cause of Rose's pancreatitis.

“Our specialist has us not really focusing on the lipase theories - basically because she says it doesn't change the management of Rose in any case. I think Shane needed a bit of a breather from all the heavy scientific detective work anyway, but I reckon he'll get back onto it if needed.

The aim is still: grow, keep well, and transplant. The transplant team want her to be 8 kilograms. Blow me down, she seems to be starting to put on some weight.”

EXCERPT FROM EMAIL TO A FRIEND

“. . . as for Rose, Shane reports that she had her most settled night ever. . . He on the other hand couldn't sleep - the only time in recent memory that he's had the opportunity to actually SLEEP alongside Rose, and he had insomnia. Head filled with crazy theories about why Rose has pancreatitis, so he had to hop onto the internet.

The doctors are encouraging him to do his wacky research - that's the odd thing. . . Anyhow, who knows - he might find something about pancreatitis.”

EXCERPT FROM MASS EMAIL TO FRIENDS

An email to bring everyone up to date, after a very emotional month or so.

“long time off air. . .

Still in hospital with Rose, who continues to struggle to gain enough weight to make a transplant a safe enough procedure. We've been in since 2 December, and it's pretty tricky juggling everything, as you'd imagine, but I think we're staying focused most of the time. The adjustment process continues to work away at us.

Lots of medical spanners remain in the works for our Rose, the worst of them still chronic pancreatitis. Aaarrgh! They still have no idea what's causing it, and haven't succeeded in stopping it either. Pancreatitis isn't even something that happens in kids with Rose's liver condition, so she has us all scratching our heads, and Shane trawling the internet for clues, night and day.

Oddly, despite all the trouble with her kooky pancreas, Rose's liver is kind of holding its own (as much as a liver can, in a baby with end-stage liver failure!?) That might not sound a sensible statement, but her liver is doing some of the work it's supposed to be doing. Though not enough for her to speed ahead with growth. The waiting IS terrible sometimes.

We've had some very scary discussions with her beautiful doctors this last month or two: about Rose's odds of getting to transplant stage at all, facing transplant surgery itself, about all the obstacles in the way of her being a healthy kid, about mortality. One of these scary discussions took place two days before Christmas, and in the presence of Lewis and Hannah. Boy, were there were some emotional pieces to pick up after that meeting!

Christmas Eve and Christmas Day in themselves were really enjoyable because we had Rose home on leave, but, it's fair to say, bittersweet. I think the whole extended family were putting on a kind of collective brave face, trying our best to envision future Christmases with Rose, to imagine Rose growing, thriving.

Anyhow, after Christmas back to hospital and a bit of a growth spurt for Rose. Yay! Then a week or so of "the trots", dehydration, weight loss. Boo! More wild fluctuations since then. A surgically-placed intravenous line went into her jugular vein about a week ago, to give the doctors easier access to her bloodstream for some of the stuff they want to try. Man oh man it's a cliché, but we really are on a roller coaster!

So many positives though: Rose seems to love life, even if she's tethered to an intravenous line for weeks on end, pricked and prodded and repeatedly awoken and conferred around! She's remarkably sparky and playful and curious for someone so frail and immobilized, and she's very loving.

Shane and the kids and I are all seeing the child psychiatry team at the hospital, to stop us going around the bend as a family. That's pretty new, but we reckon it's going to be a great thing.

My poor old bosoms are still bravely trying to pump out at least a bit of milk, to boost Rose's antibodies.

Tougher every day are the bonds between Rose and her big siblings. Rose brightens whenever Lewis or Hannah enter her room. When they deliberately get too close to her, Rose loves trying to pull their hair out of their scalps, or slapping their willing faces. Lewis and Hannah, despite their own ups and downs, are so tender and accepting of Rose, and desperate to bring her home. To bring all of us home in a single household again! We're proud proud proud of the three tough little kids.

Life is exhausting, exciting, difficult, and precious.

We know you're all still barracking from every corner! GO ROSE!”

Occasionally, Rose leaves her room to visit one of the various departments in the hospital. She loves going for a pram ride, and blows kisses to everybody she meets along the way.

Allowed a drink of water from a bottle for the first time in months. Rose hasn't forgotten how to suck. It made us cry to see her do this simple thing again.

Tennis in the morning, and talking with the hospital's fantastic child psychiatrists in the afternoon. The kids are adjusting well to the situation.

the long corridor in the hospital


and the familiar lift ride to the fifth floor

Special leave overnight for New Year's Eve.

Last night we brought Rosie along to our friends' party. We rugged her up and sat in their rambling garden in the balmy night air, enjoying the opportunity for Rose to gaze at the moon and stars.

One kind acquaintance, a father of four, held his arms out to receive Rose the moment we walked into the garden. He swaddled her up and sat with her for ages.

Another good friend of ours wept onto Rose's head and found herself unable to speak. It's a shock for some to finally see the extent of Rose's malnutrtition.

We have great friends who shower us with their love.

The enormity of Rose's situation again hits me, after the elation of having her home over Christmas. Tears flow, Rose's hand tenderly reaches up, and she gently strokes my face.

That she is here is all that matters for the moment.

Christmas lunch with Rose's maternal extended family

Rosie's feed pole and a whirl of colour surround her in the lounge room on Christmas morning

Rosie has been given overnight leave for Christmas. She's in the car for the first time in twenty-two days.

Home on Christmas Eve

It's a bittersweet thing to be bringing Rose home, but for such a short time. We've all been upset about the recent medical opinions on her survival odds.

But then we look at her sweet, happy little face, and just enjoy her.