The Calm Before....

Wednesday 25th February is an important day for me. It's the day I begin what the doctors call the "Conditioning" chemotherapy before we do my transplant. For the few short weeks leading up to that day, since my last chemo, I have been really well. I haven't spiked a temperature, I get out of the ward most days for an hour or so, usually just to ride around on the trike, and I've shared a room with a great girl called Madi (short for Madison), who is my age. I'm half her weight, and she's about half as tall as me again, but we get on well. We do the trivia quizzes together, and we've had a bit of success on that front. I'm even starting to get a bit of my hair back. It's a pity it will probably all fall out again with the next chemo, but it's been fun giving myself little mohawks and combovers. You don't realise what fun hair can be until you don't have any. I'm at school again now, except school comes to me. I'm doing Maths, Science, English and History everyday, and for fun things, the play therapist does cooking with us, so we'll call that Home Economics, the music therapist brings us all sorts of fun things to do, so we'll call that Music, and in my spare time, I love to paint, so we'll call that Art. So you see, I'm really quite busy. On top of all that, I'm gaining enough knowledge in medical circles to be fairly well up in Biology, Medical Technology, Anatomy, Chemistry, and have seen enough radio isotopes lately to include Nuclear Physics. That's quite a lot for a year 7 to handle, and especially when I have to do it in bed. I'm actually getting quite good at "self nursing". I can start and stop my own Naso Gastric feeds, after first checking that the NG tube is in my stomach by drawing contents out with a syringe and testing it with blue litmus paper (chemistry again), and then I hook myself up. I can take my own temperature, and the nurses usually get me to help them when they do my blood samples each day. "Eliza, could you clamp that lumen for me please? Eliza, do the litmus test for me please?" The nurses here at Camperdown Ward are really nice. There all fun and some are just a little crazy. There's a few Nicoles, a few Mels, a Fiona, a Jo, a Vicki, a Scott or two, a Rosey, and "Oh heeyyy" Eloise, and many more. They're all great.

The Big Day

Now we know! We now know my Bone Marrow Transplant will be the 6th March, 2009. I will have a very high dose chemotherapy for 7 to 10 days leading up to that date. The actual length of that chemo will be decided closer to the date, but whatever the length, it will totally obliterate any remaining bone marrow I have, clearing the way for the new bone marrow to establish itself. This is really giving me a new immune system, and because of that, I have to be in isolation for many weeks afterwards. Isolation times vary from 2 to 18 weeks, and the average is 8 weeks. Hopefully I can look forward to being average or a bit better, and be out of isolation in early May. This is the treatment that will cure my leukaemia. Bring it on!

Back into Chemo

After the lung operation, I felt really sore, even though Dr Harvey was able to remove the infection with key hole surgery, it still knocked me about for a while. After recovering for a few days in Surgical Ward, I was moved back to Camperdown Ward to begin my next chemotherapy. This chemo was much, much stronger than the first, and was known as the FLAG due to the names of the chemicals. The chemicals administered in this chemo were Citarabin and Fludarabine. The Fludarabine was infused every day for half an hour for five days, and the Citarabin was infused for three days, over three hours, and at least four hours after the Fludarabine. When they give you chemo, they also give you drugs to stop you feeling sick, but he one they gave me this time made me feel worse. I can't remember the name of it, but it was horrible. Then they gave me one called Dexamethazone, and it really helped me. In my first chemo, I was given Citarabin at the rate of 100mg per square metre of my surface area (which they calculate using my height and weight), every second day, for 10 ten days. This time, they gave it to me for three straight days, at the rate of 2g per square metre. That's 2000mg per square metre. No wonder I felt sick, twenty times the rate, and trying to recover from lung surgery.
Back in Camperdown Ward, I am now in the end room with a view out on the playground. With a new room mate from the Central Coast called Maddie. She is also in Year 7, so we can do a lot of our school work together.

Back for the Big One

After the Australia Day Weekend, I came back to Sydney for what is to be the beginning of the treatment that will finally cure my leukaemia. We arrived on the Wednesday morning, and went straight to what we call "Fish Bowl". Fish Bowl is part of the Pathology unit where we go to have blood samples taken. It's called Fish Bowl because the walls are painted with a "Nemo" theme. After you go to fish bowl, we go to Oncology Clinic where we see the Doctor, have infusions, sometimes have lumbar punctures, and while waiting, catch up on sleep or play with the playstations. One thing about Oncology Clinic, you learn how to wait. The girls who run the desk there say the same thing to everyone when you walk in . "Good morning, take a seat".

On the Thursday morning, I was not allowed to have breakfast. In fact I had been "nil by mouth" since midnight, but I was allowed to have clear fluid until 6am. My surgery was scheduled for 1.30, but the surgeon, Dr Harvey, came out at 12.15, and said, "Are you ready?" So at 12.30, I went under general anaesthetic to remove a 1.6 cm long lesion of infection in my left lung. After nearly 4 hours, Dr Harvey emerged from the recovery room to tell Mum and Dad it had gone how he had hoped. He had been able to do key hole surgery, and he was confident he had been able to remove most, if not all of the infection.

They are giving me three days to recover before they start my second last chemo. I'll need them. I feel absolutely awful. I have morphine to help with the pain, and a chest drain to get rid of the fluid.

Home Sweet Home. Again!!

This is just too good to be true. The Australia Day Long Weekend. I've had all my blood tests, I'm booked into theatre to have this infection removed next Thursday. My plateletes have been topped up. Dr Shaw says, "Well, you might as well go home". He didn't have to say it twice. We thought we might go up the coast and let me put my feet in the ocean, but that didn't work out, so we just decided, lets go right home.
We got home on Sunday night. We snuck in. We didn't tell Kristen and Rhys we were coming. Mum, Dad, and Georgia hid in the bedroom. Aimee hid under the desk. Dad hid the car next door. I sat on the lounge with just my head showing. Kristen and Tom came in, and Aimee made a little noise to make them look. We got them a beauty.
The next day, Kristen let me come with them in the Australia Day Parade in the back of Roylances ute. It was fun. I did get a bit hot though, so we didn't hang around at South Circle, because I can't be in a crowd. We went around the other side and watched the boat races from there in the shade. Kristen and Kaitlyn had a raft in it. I would love to say it was a sleek, streamlined beast, which cut throught the water with effortless ease, but I can't. At least they went in it, and they didn't come last. On Tuesday, we just stayed at home, watched a movie and had an early night, because I had to leave early for Sydney again the next morning. I had an appointment again with Dr Shaw, and my surgery the next day.