A Day Out

Just a quiet day today which started off with a nice sleep in. I don't ever feel guilty sleeping in, I always get woken up early to take some of my tablets and to get my feeds stopped, or started again. Yesterday Dad went for a ride on his bike with his brother (my uncle) Nigel. They went to Wisemans Ferry and back. Today we went to Parramatta Park for a picnic with my cousins Daniel and Patrick. We had lunch and then played some games, but we had to come home by about 3.00 pm because it was just too cold. Back to clinic again tomorrow. Let's see if I can get my counts up a little bit.

Here I am with Georgia and Aimee "sleeping in" on Sunday morning, and with Auntie Gwyneth, Patrick, Daniel, Mum Aimee and Georgia in Parramatta Park (I'm the one in the middle with the shorter hair style). At bottom is Uncle Nigel and Dad at St Albans near Wisemans Ferry on their ride.

Day 50. Anzac Day

Anzac Day 2009 is 50 days since tranplant for me. The last few days have been reasonably uneventful. I had my first clinic visit since discharge on Friday. There was virtually no change to my blood counts, and I haven't really started gaining weight again yet, but I have been feeling a little less sick. In fact, I went for two days without being sick, but I couldn't get three. All that does seem to be improving though. My cousins from Bathurst, Daniel and Patrick, and Auntie Gwyneth came to see me today. All I can do though, is hang around the unit, and visit the hospital. Hopefully tomorrow is a nice day, and if it is, we're possibly going to Parramatta Park for a picnic. Mmm, a possible picnic at Parramatta Park sounds perfect, particularly if we pack some pumpkin pie, pepsi, pineapple pieces, pistachios and potato chips. Tomorrow night is Grand Final night for So You Think You Can Dance, which I will be watching.

Go Charlie!!! Go Tahlia!!!

Good being Out.

It's nice to be out of hospital. I can sleep in without someone coming in to wake me up at 6am, or someone pricking my finger to make it bleed so they can test me for some level. It's nice to be able to do things we all take for granted, like going to the toilet without someone wanting to measure or test the result. But best of all, it's just nice to be able to sit at a table with my family and have a meal (even if I don't eat much yet), and share a room with my little sister again. Tomorrow I go back to the Oncology clinic to have my first blood tests since discharge.

47 Days Since Transplant. D Day. I'm OUT!!!!

I'm out. I've been D'ed. Discharged! Woooo Hoooo!!!!!!!!

Counts are: WCC 3.0. Neutrophils 1.2. Platelets 35. Haemoglobin 108. I can just hear you thinking, "Uh huh, ok, is that good?" Yesterday my platelets were only 25, and I haven't had a transfusion. I must be making my own! So, yep, it's good!!

Here I am with two of the Captain Starlights on D Day Morning.

The day started like every other day. Feeling a bit sick, bit of a chuck, swallow half a dozen pills, a little rest, some bloods taken, a visit from the doctor, and then, "Well Eliza, you can leave today." So after 171 days (10 days short of six months), 3 lots of chemotherapy & one bone marrow transplant, I have been discharged from the Camperdown Oncology Ward at the Childrens Hospital at Westmead. It feels good. Now I can stay at the RMHW Units with Mum & Dad, and visit the Oncology Clinic three days per week.

For me, being discharged does not mean I'm out of hospital without conditions. I need to remain in "isolation" to a degree. This means I am unable to stay at Ronald McDonald House itself because I cannot mix with a group of people, especially other children. You see, I just don't have any immunity to anything. All the immunisations I was given as a child, like measles, mumps, rubella, etc, etc, have all been lost. Over the next two years, I can be reimmunised for all these things. I cannot be immunised for chicken pox for two years, so that is why I have to limit my exposure to others. Even when I come home to Forbes, the doctors have advised that I limit my visitors to small groups, who are free of coughs and colds, and who are generally well, who are sure they don't have anything, and who wash their hands. I don't know how any of my own family will go if they catch a cold, I suppose they'll just have to move out until they're better. Hey there's an idea. I just figured out a way to get my own room!

So, even though I don't get to come home for a while yet, to get out of hospital is a big and very significant step for me.

Ready to roll (above), and Mum shows me the door (below)

Three of my guardian angels on D Day, Mel, Nicole & Debbie.








With Captain Powers in the now infamous"Girafeeta"pose


















Out of the ward........& out the door.

Day 46. This could be my last.

"My last what" I hear you ask! Well guess what! The D word has been used again. This time it has been used with a capital "D". At the Monday meeting yesterday, the doctors told Mum and Dad, that as far as they are concerned, they are happy for me to be discharged. So, fingers crossed, tomorrow (Wednesday 22nd April, 2009) I will be out of hospital. (It's Nannas birthday tomorrow, so that would be a nice present for her).

However, all that means is that I will be with Mum & Dad at the unit, and coming into hospital every second day to have my blood tests done. I hope that will speed my recovery, because I always feel better when I'm at the unit. Sometimes I get a bit sick, but it mostly passes before long, and I'm ok again.


Today, my counts were again largely unchanged, but my WCC was 3.2, which is my highest overall WCC since transplant, and I had some visitors as well. Our friends the Williams' dropped in to say hi.

Day 45

Day 45 seemed a bit of an anticlimax after Day 44. Not even nearly as much to report. Apart from what seems now to be the mandatory morning vomit, I had a pretty good day, with a couple of hours down at the unit. My blood counts are stable, which is good on one hand, but if you read between the lines, stable is really a bit of up, because my platelets are holding as well. I haven't had a platelet transfusion for nearly two weeks. I was having two per day at my low point. It's nice having the girls back here. I've had a sleepover with Kristen, and then with Aimee. Here I am painting a lady bug garden ornament with Cathy before leaving the ward, and with the girls down at the unit.

A New Dancer has emerged.

Kristen showed me a video that Tom took (thanks Tom) of the dance girls at half time. It was hilarious. The Platypii Mascot (aka Scott Grogan) joined in the dance. Apart from being a bit clumsy in the suit, he was picking up the steps pretty well. We reckon he should be a dancer. Good on ya Scotty.

This is me and the girls watching Scotty the Platypus dance, and me after everyone got back to Sydney after Elizas Day, sporting my Elizas day head tats.

More Pics from Elizas Day

Elizas Day Sock.

Colts preparing to pack a scrum.

Jacki Milton, before, and after with Hannah Dickens. You are a legend Jacki, thanks for putting your hair on the line for me.

Below is Hubbo with his hair, and without his hair. You look great Hubbo. I think I'll show your pic to the nurses here at Westmead.

The Master Auctioneer at Work. Thanks Randal.

Day 44. Forbes is the Best Town on Earth

Today I've felt better, but when I found out what everyone in Forbes did yesterday, I can't believe it. For anyone not from Forbes who reads my blog, you will probably want to move there. I cannot wait to get home! Dad and the girls got back to Sydney today, and showed me all about yesterday at Forbes Rugby Club.

The Forbes Rugby Club are called the Platypii. My Mum and Dad have been involved with the club since 1982. Mum and Dad have lots of great friends in the Rugby Club.

When the Rugby Club heard about my leukaemia, they had a meeting and they all decided they wanted to do something to help me. The President of the Club is Andrew Hubbard, but we call him "Hubbo". Hubbo asked Dad what the club could do to help me. Dad told Hubbo that I liked riding a trike around at Westmead because it helped my mobility, and gave me exercise, which was especially important after the lung operation I had. Dad told Hubbo that The Childrens Hospital at Westmead only had one trike for the whole hospital, and there were lots of kids who would like to use it. Hubbo told Dad that the Rugby Club would like to raise money to help me get a trike, that I can use while I'm getting better, and after I'm better, I can leave at the hospital for other kids to use. This was the beginning of what has culminated in Eliza's Day, 18th April, 2009.

Before long, a committee was formed, and Elizas Day was going to become a reality. Jacki Milton is an old friend of Mum and Dad's, and Dad told me she must have made this a special project especially for me. Dad told me that Jacki doesn't do anything by half. Soon there were lots of people on the job. More old friends of my parents put up there hands. Phil and Judy Prior (Phil is the first grade coach and used to play footy with Dad), Graham and Judy Ruge (Dad went to school with Rugey & Jude), Tracy Prior (Phil's sister and social secretary of the Rugby Club), Chris (Sprocket) Sweeney, Alison Uphill, and of course Hubbo, were all part of it.

I can't believe what everyone at Forbes has done, but I feel like the whole town is behind me, and willing me to get better. So many people donated things for the club to raffle or auction, to raise money for my cause, and so many people gave up their time to make it happen, and in time I'll find out who they all are, and I can thank them all personally.

The Forbes Rugby Club had special "Eliza's Day" socks made for the day. All the players bought there own socks, and this was how they contributed to the day. Dad told me that after first grade finished playing, they ran over to the side line and gave three cheers. "Hipipp, Eliza, Hippip Eliza, Hippip Eliza" and then went to have their showers. Thanks fellas, sorry you didn't win the footy, but you're all winners to me.

While the game was going, all the people I told you about at the top (and some others) were selling raffle tickets. Rugey was running a chocolate wheel. Kids were getting their faces painted. Anita Morrison was making fairy floss. My sister Kristen and her dance school were getting ready to dance. After the game, in the club house, the club ran an auction of things donated by some of the business around town, and some great stuff they got from other places. Norto (Andrew Norton-Knight), another old friend of my parents, got a Waratahs signed Rugby jumper. There was lots of stuff, and they decided to auction this. In Forbes, when you want ot have an auction, you get the best auctioneer in the business, another one of Dad's mates and old playing buddies, Randal Grayson. Dad reckons Randal could sell a fridge to an eskimo if he had to. Dorb (David Sly), yep another old footy mate, was MC. Even the boys from Bathurst Bulldogs bought a couple of the items. Then they told Phil, who told Dad, they were going back to Bathurst to auction them again, and raise more money. Thanks Doggies. I'll let you off for beating my boys this time.

Then, Hubbo came good with his threat to have his hair shaved if the target price was reached. It was, and Hubbo (courtesy of Hannah Dickens) cut off Hubbos hair. You don't look half bad Hubbo. All the other boys must have thought so, because they all stepped up to have their heads shaved, with Judy Prior charging them for the privelage, and Murray Fraser commentating and assisting. Best of all, Jacki sat down and had her hair cut off as well, and all this to raise money to help me get a trike, and to help me with my on going treatement.

I could go on and on and on, but I'll finish now by simply saying thankyou to everyone. Thankyou. Thankyou. Thankyou. I hope to be home soon.

Day 43. A Special Day.

For me, today was not much different to any other day here at Westmead, but I know it was a very special day for me. For my part, my counts were actually down a little, but nothing to be alarmed about. It was what was happening back home in Forbes that was so special.

Today, the Forbes Rugby Club had their first home game for the season against Bathurst Bulldogs, and they dubbed the day Elizas Day. They held auctions, ran a chocolate wheel, had face painting and jumping castle for the kids, had my dance school dancing at half time, ran raffles, made fairy floss, and all sorts of things to raise money to help me fight leukaemia. Mum and Dad always said they had great friends, and I can see why.

I can't believe how many people there were to help, and how many people were there to help make the day a success. I'll probably be talking about this day more when Dad gets back here with the photos. Dad has been sending me photos all day on the phone. Can't wait.

Six Weeks Since Transplant

Friday 17 April is six weeks post transplant. There's only Mum and me in Sydney today and tomorrow, because everyone else has gone home to Forbes for Eliza's Day at Forbes Rugby Club. I have been advised tonight that Hubbo will shave his head tomorrow. Let me tell you Hubbo, shaving it off is a much easier way to lose your hair than by chemo, but the end result will be the same. You'll look hot. The girls wont be able to keep there hands off you. I'm sure you'll be happy with that. You'll save heaps on shampoo, conditioner, time wasted in front of the mirror, and expensive trims. It's just so easy. Shower time is halved, so you're actually doing the planet a favour because you're doing your bit for global warming.
Today my counts are better. WCC is up to 3.0, the highest yet. Neutrophils are 1.6 and my Haemoglobin and Platelets are starting to hold. It's over a week since I had platelets. Still having trouble with the nausea, but I have managed to eat a little more today, but on the downside, they've put me back onto IV fluids, because I just physically cannot drink enough. I'm sure that wont be a problem at Grinsted Oval tomorrow. The Platypii take on the Bathurst Bulldogs. I know it wont be easy boys, but do your best. Go the Platypii. Thankyou to all the people who have made Eliza's Day for me. I'm sorry I cannot be there, but Dad, Rhys, and the other girls will be there for me. Big thankyous to Jackie Milton, Phil & Jude Prior, Rugey and Jude, Tracey Prior, Alison Uphill, Sprocket, and of course Hubbo. Thankyou too, to everyone else who has in any way contributed to the day. I'll find out in time who you all are, but thankyou all the same.

While the Platypii do battle with Bathurst, Melanie Bett will be representing Forbes at the Royal Easter Show. I really want her to be Miss Showgirl.

Go the Platypii.

Go Melanie.

Love Eliza. xx

Day 41 The D Word Has Been Used

Tomorrow is 6 weeks post BMT (transplant). Today, Mum and Dad had a meeting with BMT team, as they do every week, but today the doctors did use the "D" word. In hospital terms, the D word is something to look forward to, because it means DISCHARGE!!! Now, let's not get too far ahead of ourselves here, but they did use the word. Here are the "ifs". "If" I can get my fluid intake up, and "If" my nausea settles down, and "If" I can handle all my medications orally without throwing them back up, then they see no reason why I could not be discharged. This would mean visiting the hospital daily at the beginning, then three times per week, then once per week. Hopefully I can manage this over the next 4 or 5 weeks. Fingers crossed. Here is a pictorial history of day 41 so far. Cooking muffins with Cathy, and playing the Wii Australian Open with the girls. Making muffins is a good way to get rid of some of the drugs I don't want to take, he he he!!!

Day 40 afternoon

After Mel left, and after I chucked a sickie, I did manage to ride to the unit with Mum, Dad and Georgia for the afternoon. Whilst there, I partook in a piece of toast with vegemite. At first it tasted a bit yucky, but after a minute, it was getting better, and I ended up eating three quarters of a slice. This is me rediscovering vegemite. Mmm. I'm also drinking a little more each day, which is good, because if I don't, they are threatening to hook me up to fluids again. That would remove my mobility that I have only just got back, so I'll try to keep drinking.

The BIG Four Oh

The big 4 - 0. Day 40 is here. All my meds are being given orally. My feeds are running at 60 mls per hour. These are small but positive steps. The best thing about today is that I had a very special visitor. Our very own Show Girl, Melanie Bett came to see me while all the show girls were visiting the hospital. Good luck on Saturday Mel, we're cheering for you! She timed it really well, because as soon as she had gone, I felt really sick again. Not for long, but it wouldn't have been good while Mel was here. Hopefully I'll be out for a couple of hours in the afternoon.

Day 39

Today was a pretty good day. My counts had no change worth talking about much, but my red cells and platelets are behaving better. I felt a little sickish most of the day, but the Ondansatron has held it a bay well enough for me to get up, and get out. I spent most of the day at the unit with the girls, after starting the day with a spot of scrapbooking with Cathy. I like to get back before too late in the day so that I can have my bath. Very relaxing and therapeutic is a long soaking bath. I am eating a little more each day too. I've had a few noodles today and a few grapes, and a piece of pineapple or two. It doesn't sound much, but beleive me, when your stomach hasn't experienced solid food for three months, it's quite a lot. This is me scrap booking, and with Kathy (below), and heading to the unit with Kristen, Mum, Georgia & Aimee (taking the photo).

Easter Monday, Day 38

Easter Monday is 38 days post transplant. Started off a bit ordinarily, with a blockage in my NG tube, the one that my feeds go through, and then the finger pricking lady turned up, and this one hurt more than any before. Maybe my fingers are just too sensitive after being pricked so many times. One of the chemicals used to unblock the NG tube made me feel a little bit off too, probably because it's very acidic and high in sugar. It's also black in colour, and coincidentally taken by millions of people around the world every day. It's Coca Cola. It helps to dissolve blockages in the line. I was feeling a bit nauseas, but once I had my Ondansatron, and got up and about, I felt better. Ate some lunch, had a cup of tea, played a game of golf. Wii Golf that is. Check out my Wii golf character below right. In the top photo, I'm showing the girls my finger prick holes, and in the bottom picture, me and Kristen are listening to Georgia react after she "missed a putt" in Wii golf.

Easter Sunday, One of My Best Yet

Today the Easter Bunny came, my counts were back up, I went to the unit for four hours, and Kristen, Tom, Aimee, Georgia and I, all played Wii sports for the afternoon. I took an Ondansatron wafer this morning for the nausea, another one at 12.30, and then rode the bike to the unit. I even managed to eat a little bit of lunch (lettuce and beetroot, and two bites of hot cross bun) and still felt ok. I had to be back at the hospital by 4.00pm, not for any medical reason, but to watch the Tigers and the Sea Eagles do battle at Brookvale. I go for the Tigers, and so does Tom & Georgia. Dad's a Sea Eagle. Sea Eagles won. Never mind, I ended up doing some scrap booking with Kristen, and we've started our own Eliza & Kristen scrapbook. Actually, I did have to be back to start my feeds again, but to me, today, that was a side issue. I sure hope these good days continue, and my appetite keeps coming back. If it doesn't, I don't know how I'm going to handle all these Easter eggs. Here's me on Easter Sunday Morning (top), with Mum outside our unit in Redbank Rd, on the bike in the unit, and back in my room with my little Easter friends (bottom).

Easter Saturday

Day 36. Easter Saturday. Counts down a bit again today, bummer. However, my platelets are starting to hold a little better, so all is not bad. Kristen and Aimee arrived from Forbes tonight, which will be nice. Thanks for all the comments everyone. I'd better answer a few of your questions. Elly, yes, it probably was you I was chatting to. It could have been Josh Bennett, or even Kristen, or anyone of another fifty people, but it was probably you. Hi Carly. You wanted to know when I could have visitors. That's a tricky one. I can have visitors, but I just have to be really, really careful. Anyone who comes to visit me can't have a cold, a runny nose, a sore throat or anything resembling an ailment. They can't have had a virus within the last month, or have been with anyone who has. They should not feel unwell at all, and if they do visit, they must wash their hands before they come in, and I can only have a maximum of two visitors at a time. The fact is, that my isolation will continue for the next few months, even though I wont be in the isolation room. The bottom line is, if you have any doubt, don't come. Otherwise, when are you coming? You should check with Mum and Dad before you come, just in case I'm feeling a little off, or I've had a set back or something. I've been allowed out to go to the unit both yesterday and today, but each time I got there, I didn't feel too flash, so I retreated to the safety of the hospital. I am improving, but it's going to be a long and slow mountain road. Below is me laying in bed waiting for my transfusion to finish so I can get out for a while, giving myself eyedrops, and, at right, riding out of the ward on the bike for the first time in over a month.

Good Friday

Things were better last night, slightly, but this morning I wake up feeling a bit off again. Three days per week, someone from Pathology comes in to take a blood sample to test my cyclosporin levels (anti rejection drug). They do it by giving me a finger prick, which wears very thin after a while. They always seem to be able to coincide with when I feel sick. My daily blood counts have dropped a bit again which is disappointing. WCC was 1.8 this morning and neutrophils were 0.8. The doctors all say that's normal to go up and down, but when you've been down so long, up is the only direction of interest. Everything is being timed for me to be unplugged from about 12.30 for about 6 hours. During this time, I am actually allowed to go to the unit. Here's hoping I feel well enough. This is me last night chatting on line, and giving my own medications.