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.