One Year On

Well today is November 3rd 2009, one year since I was diagnosed with Leukaemia. One year on, I am back at school, and getting back to normal. I did actually go back to school for a few hours each day before the school holidays, just to get the feel of it, but since the holidays, I have been back every day for the whole day. I do get a little bit tired, and the hot weather has been a bit hard to take, but it's so good to be back with my friends.

One year on I am down to only one medication, twice a day. That's the aciclovir, the anti viral which gives me some protection against things like chicken pox, which I can't be immunised for until about two years post transplant. That would be about February 2011. Maybe they'll let me have it a bit earlier. I've been having some of my other immunisations lately, and they have been given to me in the leg. Two days later it feels like someone has kneed me in the leg and I can hardly walk. I go for my next check up with Dr Shaw on the 18th of November, when I also have to have a bone density test. My next biopsy will be on the 9th of December.

The school holidays were great. In the first week, Aimee, Georgia and I all went on a Country Hope camp to Wagga. It was such a good camp. We did so many fun things, and met some really nice people. Carmel Josephs was one of the main organisers. She works for Country Hope in Wagga. She knew Mum and Dad because she used to live in Forbes, and her son Brad went to school with my brother Rhys. Brad and Rhys are both going to Uni at Wollongong next year. Anyway, back to the camp. We did lots of craft activities, went in a hot air balloon, went on a Harley ride, went swimming, went fishing, and lots more.

We had to leave the camp early because on the Thursday, Mum and Dad picked us up and we went to Melbourne to visit my Uncle Dallas and Auntie Olga and my cousins Ethan and Cameron. We always have a good time at their place.

After the holidays, and back at school, and I've just got back from my Year 7 excursion to Tea Gardens. What a top trip that was.

I am feeling a little better each day, and I don't need to take the Ondansatron as often, but sometimes, I just have to have one so I'm not sick. My biggest problem is my weight. Dad says he sort of knows how I feel, because he has the same problem, except in reverse. The good thing is, that I'm not losing weight, but I'm not gaining any. Dad reckons he's the same, but he can gain it any time he likes, even by not eating.

Here is all my family just before we left Borambla after the Country Hope Camp; me with Georgia at a fun park near Melbourne; and me getting some pole dancing in at the park near my cousins house in Melbourne.

What a Great Week

This week was a great week. This week I finally went back to school. Only for two periods, but at least I got back. Bridget, the hospital liason is meeting with my teachers on Thursday to work out the best way to help me back into school. Going back to school was something I really was looking forward to, but the big, BIG, news this week was the much awaited arrival of Archie Quirk. Our friends David & Taryn had their first baby on 19th September, a beautiful little baby boy they named Archie Robert. Taryn & David promised me a nurse, and I couldn't wait. We finally got to visit them on Monday, and I had my nurse. He is so cute. (This is me on our front step, with my trusty hat ready to go for my first day at high school, finally. Me arriving at the Gates of School, with my year advisor for Year 7 Miss Danielle Forbes, and me with Archie.)

What a Fantastic Day

Today was a fantastic day. Today I went with Dad in the plane to visit his clients and friends the Harleys at Balowra near Nymagee. Dad really wanted me to go, and I'm really glad I did. The trip out only took 45 minutes and when we got there Phil and Marie met us at the airstrip. They were so nice. I can now see why Dad likes going to Balowra so much. Phil and Dad went to the wool shed to look at the wool, and Marie took me straight to the house. The Harleys have got a really cool buggy their grand children drive around in on school holidays. It is so much fun, I really want one. Marie showed me how to drive it, and I was hooked. We went up to the shed, me driving, to pick up the boys for lunch. I drove Dad back in the buggy. Marie made us a lovely lunch, and then I took Dad back to the shed, in the buggy. After Dad spoke to Dave the classer, we went back to the plane and flew home. I want to go back to Balowra again soon. The Harleys were so nice. (Below is a picture of me with the Harleys, and the buggy. Richard, Phil, Marie and Phillip. The Harleys call Phillip "Man". The other pictures are me in the buggy, me at the controls of Dad's plane, and looking out my window at the big mine at Parkes.)

When I got home to Forbes, Mum gave me some really good news. She said that Dr Shaw had called, and said I can finally go back to school. Yee haa!!!

What a really great day!!!

Biopsy Number 2

On 7th September I had my second bone marrow biopsy since transplant. I have to have a biopsy on the marrow every three months for two years. I have a general anaesthetic, and they insert a fine needle into my pelvic bone from behind about 2.5 cm from my spine. The extract a little of my bone marrow to test. My first one (three months ago) was clear and that's what we expect them all to be. My blood results are still good, and improving slowly all the time. I'm feeling more and more energetic, and I only have to take three tablets morning and night, Bactrim and Acyclovir. My only problem is my appetite. I just can't eat enough quantity to get enough calories, and so putting weight on is a real challenge for me. I may have to have the NG tube back in for a while if I can't fatten up a bit soon. Mum puts them in for me, so I don't have to go to Westmead for that.

I've been doing some fun stuff since my birthday though. I went in a "So You Think You Can Dance" competition my old school was putting on to raise funds, with my sisters Kristen and Aimee. We came third, but I didn't care if we came last, I was just so happy to be able to do something I love again. I hadn't ever done that dance before, so the girls had to teach me in a few days. I had so much fun. Mum and Dad have said I can go back to dance lessons again now, just avoid sick people still.

A few weeks ago I went Ten Pin Bowling in Orange with everyone, except Rhys. He is usually working somewhere on weekends. It was the best fun. I was a bit tired afterwards, but it was worth it. (Check out the style below. Another strike coming up!!!!)

The last two days have been fun too because I've been to the Forbes Show. Mum and Dad said it was a bit of a risk going to the show, but the fun factor won out in the end and the show wasn't too crowded. The acyclovir tablets still give me protection against viruses, and there's not too many coughs and colds around at the moment. I had a great time at the rides. The Music Trip and the Cha Cha are probably my favourites. We got our show bags, watched the demolition derby, and went home for a pizza and video night.
(Here's me with Georgia waiting to go on the Cha Cha, and on the Music Trip!)


Today was a lovely warm day, and Dad has been getting the pool ready for summer, so Georgia and I went for a dip. Dad wouldn't come in because he said he only swims when the water is over 28 degrees. Wimp. It was a bit cold I must admit, but we stayed in for a few minutes. (Me with Georgia in the pool. My first swim in nearly a year!)



We should get some biopsy results this week. It's always a bit of a nervous wait, but fingers crossed, all will be well.

Now Officially a Teenager

Yay, I'm finally a teenager. Today I turned 13.

Over the weekend I went on a camp with Canteen to a place called Attunga, which is near Canyonleigh in the Southern Highlands. I had a great weekend talking to other girls who had someone in their family with some form of cancer. I made some new friends. On Friday afternoon, Mum and Dad dropped me at Sydney airport where we met the Canteen girls. From there we went to Wollongong, and then to the camp, picking up other girls on the way. Yesterday, Mum and Dad and Georgia picked me up in Canberra, and we came home.

http://www.canteen.org.au/

What A Week!!!!

What a week we've had this week!

It all started last Sunday, when Dad, Mum, Kristen & Aimee ran the City to Surf to help raise funds for Cure Our Kids. They ran as part of the Cure Our Kids team, which had about 350 people in it, and was the biggest fund raising team in the race. While they ran the race, our friends Bridget & Sarah came to mind me at the unit at Bondi Junction. We talked, played Scattegories, watched tele and talked some more until Dad and the girls got back early in the afternoon. It was the first time any of our family had been in the City to Surf, but I'm sure it wont be the last. Dad and Aimee ran together and their time was 91.02 minutes. They crossed the line together. Mum and Kristen ran some and walked some, and their times were 113.56 for Kristen and 115.32 for Mum. They had a great day, but they were all pretty sore for a few days. They said it was well worth the trouble though, and are very grateful to all the wonderful people who sponsored them. The sponsorship page is still open, so anyone who wants to, can still support Cure Our Kids. Just click on the Woods Family City to Surf link on the left of this page.

Top: Mum, Aimee, Kristen & Dad with Camperdown nurses Stacey, Justine, Scott, Nicole & Mel.

Right: Dad & Aimee at the start.

Below: Kristen stretching before the start; The view down William St after the start; Mum sets a cracking pace up Heartbreak Hill.

Bottom: Kristen & Aimee recovering at Bondi; The Woods Family Cure Our Kids City to Surf team at Bondi Beach.

Kristen and Aimee went home on Monday because Kristen had to work and Aimee had to go to school. Mum and Dad and me, went back to Westmead, where I had to have my fortnightly blood tests done. On Tuesday, Dad played in a Ronald McDonald House Charity Golf Day at Castle Hill Country Club. He had fun, but he said it was a pretty challenging golf course. On Wednesday, Dad went to work, and Mum and I had appointments with the dietician and the RMH Tutor. Her job is to see if I need help to catch me up with my school work. Then, today (Thursday) I went into surgery at 10.30 am to have my central line removed. This is a big thing for me. Now I can go swimming again and I wont have the risk of picking up an infection in the line like a did a few weeks ago, putting me back in hospital for a week.

Tomorrow, I'm going on my first trip with Canteen, on a girls camp in the Southern Highlands. Mum and Dad will take me to the airport tomorrow, where I will catch the bus. Then I will meet them again in Canberra on Sunday. This will be the first time I have been away from both Mum and Dad for nearly a year.

I have an appointment with Dr Shaw next Wednesday and then a bone marrow biopsy on 7th September. I hope to learn soon after that, that I can return to school.

Back in the Good Books

Things can change quickly when you are being treated for leukaemia. Last week they took a turn for the worse. This week they did the opposite. One of the best things about my central line infection was that it made my new immune system really work. And it did. My WCC shot right up to over 11 when I was feeling really sick. Today I had a CT scan of my lung again. There's a slight little white patch still there, but my cough has now gone, so the white cells are really kicking into gear. My blood results are really good today. WCC is 5.2, Neutrophils are 3.2, Hb is 122, Platelets are 211. So I'm really like a normal kid, nearly, except I don't yet have enough B & T type Lymphocytes in that WCC. There the ones I need to protect me from infections. There the ones I need to be able to go to school, to go shopping, or go to the movies. They're currently on 0.2, but they need to be over 1.0. Best of all though, today I was given the news that my central line will come out the next time I'm in Sydney. That will be another general anaesthetic, but it will remove the possibility of picking up another infection there. Last week we discovered a way to go to the movies without putting me at risk. We go to the drive in at Blacktown. We think it's the last one left in Sydney. It's really cool, I get to sit in the front, and Mum and Dad sit in the back. Dad said that's how it was in his day anyway, and when I asked him could he see the movie, he said it didn't matter, he never really saw the movie when he went to the drive in anyway. Huh? I don't get it? Old people can be weird sometimes.

Back on Track...........again!!!

Well, after that little episode with the bacteria in the central line, I'm back on track again. A couple of days in hospital, and a daily visit to the hospital for some intravenous antibiotics for a week will have me back where I was, I think? I still don't seem to be able to keep these NG tubes in for long, but with a bit of luck, I wont need them for too much longer. I am gaining weight slowly, and the doctors have told me if I can get to 35kg, then they'll probably let me stop. I'm having this week back at RMHW so I can have the daily antibiotics, but should be home again at the end of the week. Never a dull moment in this business.

Whoops! What a Bug.....er!

It doesn't pay to get too comfortable sometimes. This week was supposed to be like any other week. Come to Oncology Clinic at Westmead, have my blood tests, see the doctor, make sure everything is ok, go home. Uh uh!

Late last week, Dr Shaw had phoned up with the news that my "immuno globulin" level was too low, and when I came down next, I would have a transfusion of these to top me up. Simple!!! I've been on fortnightly visits because the only reason I need to come to clinic weekly was to have my central line flushed, which Mum can do anyway. Fortnightly blood tests and therefore visits, were sufficient.

This week, we came down the night before, same as usual, and on Wednesday morning, Dad took me up to fishbowl to have my bloods done, and one of my lumens hep locked. (The central line has two lumens, one white and one red, and after blood is taken, these are flushed with saline, and filled with heprin so that blood doesn't clot inside them. This is called hep locked for short). The other lumen was left alone, because the nurses in clinic would use that one to do the tranfusion of immuno globulin. After the visit to fishbowl, we went back to Ronald McDonald House and had brekkie, then Dad went off to his wool sale. Same as usual.

After brekkie, Mum took Georgia up to the hospital school, and then she took me to clinic for my usual meeting with Dr Shaw. All my blood results were good, and apart from a nagging chesty cough, most likely due to me now having white cells to mop up any residual infection, all was well. So, let's do the infusion, then we'll head home to Forbes.

After about thirty minutes, I was starting to feel really sick. Debbie, the nurse decided we should take me to a private room so they could monitor me. I think she suspected something was wrong. After about an hour, I was in real trouble. My blood pressure had plummeted, my temperature was about 39.6 and I had the rigors (shakes) really bad. I was being sick, couldn't drink enough to satisfy my thirst, and on a down hill spiral. Debbie decided it was time to take some action. Back came Dr Ruchira who agreed, get the fluids going and let's start the antibiotics. About half way through the third bag of fluid, Dr Shaw came in and said if my blood pressure didn't stabilise after the third bag, I would be going to ICU. Intensive Care Unit. Never been there before, but I was too sick to care. I'm pretty sure Mum and Dad (who had arrived back just as I was starting to feel off) were really, really worried. Anyway, after the third bag of fluid, and the first of the antibiotics, my blood pressure did stabilize, and I started to feel a little better. I even felt well enough to eat an icy pole. It was a big relief, especially to Mum and Dad, when the doctors said I was going up to Camperdown, and not to ICU.

On Thursday morning, the nurses took my bloods again, and I was on three of the antibiotics I'd been on after transplant. Gentimyocin, Timentin and Teicoplanin. At lunch time, I was told that the lab had managed to culture a "bug" in my line, and that I would have to stay in hospital for at least a week. Oh well, best place to be I suppose.

I was really starting to go well too. My appetite is slowly coming back. I've got more energy, and can run around in the yard. Just to make sure we don't get too relaxed, I get a bug in my line. They are now thinking of taking my central line out to reduce that risk.

These "bugs" in a central line are not uncommon for kids like me, but if you get one, things get pretty scary. Oh well, I think I'm on the mend, again.

City to Surf

On the 9th of August is the City to Surf. This year, Dad, Mum, Kristen and Aimee are going in it to help raise funds for Cure Our Kids. http://www.cureourkids.com.au/
Cure our Kids is an organisation which helps kids like me and families like mine when we are faced with things like leukaemia. Dad and Aimee are going to run the race, Mum is going to start running, and Kristen is just going to walk it. In reality, probably only Aimee will run the whole way, but we'll wait and see. You can help us help the Cure Our Kids Team by sponsoring the Woods Family at this link.
http://city2surf.everydayhero.com.au/the_woods_family

At Long Last

After my last visit to clinic, the doctors have allowed me to now visit fortnightly. This is only because Mum can flush my central line, and has become pretty good at putting down my NG tube if I throw it up. My blood counts were down a little, but are still at an acceptable level.

Today, Dr Shaw phoned us at home with probably the best news I've had for ages. It's been a long, long time coming, but at long last we finally got the news I've been hoping to hear. He told me I can now eat Maccas chips. That is providing they are cooked fresh. Now I can't wait to get there.

Here's me and Georgia with our new wool beanies, and my impression of a french film producer.

My Century

Today is day 100 post BMT. Apparently most people start to notice a bit of a difference about this time after a bone marrow tranplant. They all describe how their appetite is starting to improve, and they don't feel as sick. That is probably true, but the progress is so slow, it's really hard to notice. At clinic last week some of my counts had retreated a little (not enough to be a problem) which could have had something to do with the little sniffle I'd picked up. One thing I cannot afford to do is relax about being near people with colds. My official counts were Hb 103, which was up a little, my WCC was 3.8 which was slightly down, my neutrophils were down a little to 2.8, but my plateletes were up to 130. I don't seem to be able to keep these silly NG tubes down though. Another one came up yesterday, so I'll probably have to get a new one today. Not the way I'd planned on celebrating my first tonne.

Being home is sometimes a little boring because I can't go to school, or shopping or anywhere like Maccas, but sometimes I have to make my own fun, and anyone who knows me, knows I love clowning around. Below is my impersonation of the seven dwarfs. Happy, Doc, Sneezy, Bashful, Sleepy, Dopey and Grumpy.

So Far So Good

I've been home now for nearly two weeks. My first visit to clinic at Westmead since I came home was last Wednesday. Dad was already in Sydney, so Mum and I drove down on Tuesday afternoon and we all stayed in one of the RMHW units. On the Wednesday morning, we all went over to pathology (we call it Fish Bowl, because the walls are all painted in a Finding Nemo theme) and had my bloods taken, and my finger pricked. Dad went off to his wool sale, and Mum and I stayed to see the doctor. This time we had Dr Ruchera who is one of the "fellows". She was the one I had most of the time when I was in the isolation room in Camperdown Ward. Anyway, she had some premliminary results for the biopsy I had done before I left (two weeks ago, tomorrow) which were very encouraging. There was no leukaemia detected in the test, and my blood counts are really on the move. My WCC is now 4.1, neutrophils are 3.1, platelets are 122 and haemoglobin (hb) is 99. The hb is the slowest to move, but the doctors are happy with it. I will have to have a bone marrow biopsy every three months for two years. So far, so good. I still have about another three months to go of this semi isolation I'm in. No crowds, no takeaway, no school, no sniffly visitors, and avoid chicken pox like they were swine flu. Lots of my friends have been immunised against chicken pox, so I need to stay clear of them for two weeks from when they had their needle. I'm still having trouble with eating very much, and twice since I've been home I've chucked up my NG tube. The first time I did it, we went up to the hospital here at Forbes and Doctor Draper put a new one in for me. The second time, which was only yesterday, Mum did it. Mum and Dad have seen it done that many times, they always said they could do it. So, Mum did. Good on ya Mum.
This week I have to go to Sydney on Tuesday morning to have a barium swallow. This is where I drink some flavoured (hopefully) barium and have an xray at the same time. This is to see if they can find a reason that I'm still feeling sick.

Home.

After the Bone Marrow Biopsy yesterday, Dr Emma said that she saw no reason why I couldn't have my central line flushed and locked on Tuesday, rather than waiting until Wednesday, and then I could go home. I wanted to go home so badly, that Chrissy the nurse flushed and locked my lines, and said "You leave the Doctors to me. Off you go". It would just mean I was going to have to go for nine days instead of seven. My counts are good, and I have no real reason to be here. Besides, Georgia is playing in the school netball team on tuesday (today), and I wanted to be there to see it. So Mum and Dad hopped in and packed and cleaned, and we finally left the Ronald McDonald House Unit in Redbank Road, Westmead, at 6pm on Monday night and headed for our real home in Forbes. It has been a long haul, and I know it's not over yet, but being home is a big relief for everyone. Now I have to try and get back into school as best I can, even though I wont be able to go to school for a few months yet.

So, at 10.45 pm last night (Monday 25th May, 2009) after 2 Central Line insertions, 2 Major Surgeries, 7 Bone Marrow Biopsies, 2 lumbar punctures, 7 CT scans, 9 X rays, 2 echo cardiographs, 16 invasive procedures including 6 NG Tube insertions, 7 venepunctures, 31 finger pricks, 26 blood transfusions, 54 platelet transfusions, 3 bouts of chemotherapy, and 1 Bone Marrow Transplant, with a bravery bead for each event (including a bead for 3 reward days, 11 happy days and 1 holiday) and after 204 days away, I am home!

Bone Marrow Biopsy Monday

Monday was Bone Marrow Biopsy day. This was the first bone marrow biopsy since the transplant. Since I've done this a couple of times before, I knew the drill. Nil by mouth from midnight except for clear fluids. Then absolutely nil by mouth from 6am, and hope that my turn isn't too late in the day. It wasn't, and at 10.00am I was nodding off under general anaesthetic. I was only out to it for about 30 minutes. We wont have results for this biopsy for a couple of weeks. We're all just hoping the results are good. Here's a picture of me ordering my formula (the stuff that goes through the NG tube) outside the formula room, and me with the Oncology Clinic nurse Chrissy after my biopsy. Chrissy is a real character. She sings all the time. She even sings to the fish in the fish tank. They seem to like it. She is actually a really good singer.

Now all I want to do is to go home. I should now be on weekly visits to Oncology Clinic, which means I can go home to Forbes and come to Sydney every week, rather than live in Sydney and go to clinic every 2nd day. In time, if my counts keep improving, and my biopsy results are good, I could go to less frequent visits.

Nearly there!

Remember last week Dr Shaw said he really didn't need to see me for a week? Well, that's where we are now up to, except that on Monday I am having my first bone marrow biopsy since transplant. In case you've forgotten, that's where they give me a general anaesthetic and insert a fine needle into my pelvis from the back and aspirate a sample of bone marrow for testing. It usually takes about half an hour, and I'm usually asleep for about 45 minutes to an hour. Ever since I arrived in November, there has not been one bone marrow biopsy where they have been able to aspirate a big enough amount to get a reliable test. Now that I have a new bone marrow, which is working better and better every week, we are all hoping that they will be able to acquire enough sample to test. Assuming that I'm ok after that, and assuming that I don't need to go to clinic next Wednesday (because I'll have been there on Monday), then I'll be going home to Forbes. That means I'll be going home to Forbes for more than just two days. It means I'm going home. I'll still have to come to the Oncology Clinic every week for a while, but fingers crossed, I will get to fortnightly visits soon, then monthly, then 3 monthly.

It's really weird. The thing I want to do the most when I get home, is to go back to school, but unfortunately, that will have to wait a few more months yet. I will have to be so careful when I get home that I avoid possible sources of infection. The rules are pretty simple, and some may seem a bit extreme, but they are all there to help me stay well until my bone marrow is producing enough white cells (in particular cells called T cells) to fight infections. I'll be able to have visitors, but not in big groups. I can't wait to see my friends, but here are a few simple rules to follow that will only help me. If you have a cold, or a runny nose, you shouldn't be near me. If you have not had chicken pox, you shouldn't come near me. If you have had chicken pox, you should be immune, and will most likely not be carrying the virus. If you haven't had them, you could be carrying them and not even know. If you have been exposed to someone who is unwell and you're not sure, you should wait a few days before getting too close. You will need to wash your hands before you visit me, and this is one of the simplest things you can do to help me avoid any problems. Best thing to do, will be to call first, and if you're worried about something, just ask Mum or Dad. They've been drilled on all this for so long now, they probably know as much as doctors anyway.

On Saturday, Mum and I went to an art and fun day at Ronald McDonald House which was hosted by Westpac. Dad went with his brother, Uncle Nige, and his mate Murf, and rode their bikes up to the Hunter Valley and back. After that, we went home to Forbes with another load of stuff we've acquired over the last 6 months, and arrived about 9.30 pm. On Sunday, Mum and Dad did a few chores, and I went for a fish at the lake with Kristen and Tom, and had a kick of the footy with the Hemmings on our front lawn. Apparently, while I've been away, Rhys and his mates have started a new "tradition" of kicking the footy on our front lawn every Sunday. Since it's so long since I did this, my foot is really sore now. On Monday, Dad was at work, and I just hung around at home, although I did sneak down town with Mum to get some things at the newsagent. Then, on Tuesday morning, we came back to Sydney, so that I could be here early on Wednesday (today) for my blood tests. My results are a little better again. My haemoglobin is still hanging in there at 87, and my WCC was 3.6, with the neutrophils at 2.5. My platelets on the other hand were up to a whopping 105. My doctors are pleased with these results.

So now, all I have to do is work on getting this NG tube out. That could take a while. Today they've changed one of my drugs. The anit fungal drug, Voraconizole is being substituted for another drug that will hopefully stop me feeling sick each day.

Today we made the presentation of the trike (on behalf of Forbes Rugby Club) to the Physio Department. Remember how I said the Rugby Club wanted to get me a trike to help me get mobile again, well they raised the money, and we managed to get two trikes for only a little bit more than one was supposed to cost. We have given one to the Physio department, and I'm keeping the other one until I'm better.

(This is me with the trikes at Physio with Bronwyn and Jenny)

Then, just as I was going home, I ran into none other than cricket legend, Max Walker.

Home in Sight

At clinic today, my blood results were good. Not much change mind you, but good. The doctors are at least pleased with where they are, but of course we all want them to be flying along. Today I had a CT Scan on my lung, again, just to see how that old infection site is going. We don't yet have the results for that. On the 25th I am due to have a bone marrow biopsy. This will be the first one since my transplant, so we are all hoping for a good result. Today, Dr Shaw confirmed that he only needs to see me on a weekly basis, so after the biopsy, I will be going home to Forbes, and visiting the hospital each Wednesday from there. It should work out ok, because I can just come to Sydney with Dad as he comes for his wool sales. I still have to try and steer clear from crowds, and that's why I will have to be careful with visitors when I get home. I'll tell you more about that later. Even when I go to Ronald McDonald House for a meal, I have to eat away from all the others, but so too does my little buddy Logan. So, Logan and I eat together in a room by ourselves. This is a picture of me with Logan.

Home for Mothers Day

At clinic last Wednesday, Dr Shaw said that he didn't want to see me until next week and that if I wanted to, I could go home. So, Dad came down on the Friday, having told the other girls he wouldn't be back until next week, picked up Mum and me, and home we went to Forbes. Unfortunately, because I have to be so careful about catching something, I couldn't really announce my arrival. It was very difficult remaining low key. It was nice to be at home with everyone for Mothers Day. We also went out to David and Taryns farm on the river near Forbes. It's such a lovely place on the river under the big river gums. (The picture at above shows me fishing with Dad's friends Quirky and Murf at Quirky's farm).

On Mothers Day, we had a picnic at the lake,(below). Forbes is a beautiful town with a lake through the middle, and we like going there for a picnic. We came back to Sydney on Sunday night, and hopefully, after my CT Scan this week, and my biopsy next week, I will be cleared to go home for longer periods.

One Less Pill

Today (day 61 post BMT) I went to my Wednesday clinic and was given two pieces of news by Dr Peter Shaw that I have wanted to hear for ages. Firstly, he has told me I no longer need to take the Urseo tablet. Urseo is a drug that prevents clotting in major organs, but in particular, the liver. They usually don't stop this drug until day 80 post transplant, but because I haven't had any symptoms of this, and because he'd like to see my nausea go away, he thought one less medication might help. Suits me! Urseo was one a big fat one. The other thing he told me that made me smile was that he felt it unnecessary for to come in again until next week. Hopefully that will be the start of my once weekly visits, which will mean home is that much closer. Next week I am having another CT scan of my lung. This is because they want to check the place where I had the lung infection removed. The anti fungal drug I take, called Voraconizole, is at a lower than ideal level in my system, but before they change it up, Dr Shaw wants to check whether I need it at all. He is such a cool doctor this guy. He's really thorough, and leaves nothing to chance, and he really gives us a lot of confidence in him. With any luck, I might be able to stop taking another tablet next week. I'm sure one of these is what makes me feel chucky each day. Fingers crossed!

6 Months On.....

Yesterday was 6 months since my diagnosis. I came to Westmead for some more blood tests, and didn't leave. My blood results are looking good now. Yesterday, my haemoglobin was 89, just hanging in there, but my platelets were 81, they've really jumped up. My WCC is 3.4 and my neutrophils are 2.2. They seem like little numbers, but they are big for me. Remember, the last chemo I had made all these numbers, zero. I'm back over 30 kg again too, and starting to eat a little more each day. The more I can eat, the sooner I can lose the NG tube. I have to be careful what I eat though. I can't have takeaway for at least six months. Nope, not at all. I can't have things with grain, like grainy bread, but that's ok, I prefer white bread (hey, I'm a kid). I can't have things like soft cheese, or yoghurt, I can't have salad unless it's made fresh by us, I can't have pizza, except frozen, or made by us fresh, I can't eat fruit that's bruised or over ripe, and the list goes on. I've just rediscoverd mandarins. They're yum. It shouldn't be for too long, but I just can't take the chance.

The doctors have said I can now go to twice weekly visits to clinic. This will be for probably two weeks. After that, they should tell me I can come in once a week. By then, I should be able to go home. That will be early June. I hope so. When I first started treatment, the nurses told Mum and Dad that we'd probably be here for about 7 months. June 3 would be 7 months. Isn't it weird how doctors and nurses know that stuff? I guess they've seen it before.

It's just been me and Mum here this week. Dad took Aimee and Georgia home on Sunday so they could get back to proper school. I wont be allowed back to school for a few months, and then it will only be half days. I'll have to do "distance education" or at least have my school work sent home.

A Lap of the Park

Parramatta Park is just a short distance from the hospital here at Westmead. It has a great walking and bike track running around it. Most of Parramatta Park is the original Government Farm with Old Government House as the centrepoint. Old Government House was built by Captain Arthur Phillip, but was extended and lived in extensively by Governer Lachlan Macquarie and his wife. Parramatta Park is bordered on the northern and western sides by the hospital and the suburb of Westmead. The railway line on the southern side, the Parramatta CBD on the south east corner, Parramatta Stadium and the Parramatta pool on the eastern side. The Parramatta river runs through the park. Sometimes we see the Parramatta Eels training. Today we saw the Premier, Mr Rees, going for a walk. There is a cricket ground between the river and the stadium which is part of the grounds of the original Kings School before the school was relocated to where it is today at Carlingford.

Today I had a slow start to the day, but once I got going, I felt quite good. We all went for a walk, or in my case, a ride around Parramatta Park. Today has probably been a slightly better day for nausea, and I've managed to eat a little more. Thank goodness for plain rice crackers. Today I ate a mandarin for the first time. It was delicious. I am slowly getting my tastes back. It's not that I don't want to eat, but with the naso gastric feeds going for 16 hours per day, I just don't feel hungry.

Here are some pics with me on the new trike the Platypii (Forbes Rugby) are donating to the hospital when I'm finished with it. With Georgia at the start of the ride, then me with the Parramatta river behind, with Mum in front of old Government House, and with Aimee in front of Governer Macquaries bath house.

May Day

Friday the first of May is a significant day. It's the first day of May! As far as I'm concerned though, it's day 56 since transplant. Since my last post, nothing much has changed for me. I visit the Oncology Clinic on Monday, Wednesday and Friday. My counts are very, very, very slowly climbing, but I can't rely on them to be higher every time, than the time before. Sometimes they go back a bit. My platelet count seems to be holding, but my haemoglobin is slipping a little every time. It's probably inevitable that I will require another transfusion eventually. I still feel sick quite often, but it is probably slowly subsiding, although it's so slow you wouldn't notice. The doctors were testing me for some sort of virus called Adeno Virus. It apparently lives on all of us, but they wondered whether my lack of immunity was letting it affect me. Today I had another test for it, but it was negative, so maybe I'm just taking a long time to get over the nausea. Dr Melissa thinks I might be able to go home in 3 or 4 weeks. That's nice, but that's what she said 3 or 4 weeks ago. Oh well, slowly, slowly. I think I am feeling better, and I'm more mobile than I was. Uncle David and Auntie Cathy, and my cousin Hannah came to visit me this week which was good. It gave me someone different to play in Wii.

Just this afternoon, Dad and I went to Castle Hill and I took delivery of the trike that my friends at Forbes Rugby Club bought for me. I haven't yet taken it for a hit out, but that's my first job tomorrow.

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.