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.

Theres No Place Like Home

Well, Dr Shaw was true to his word, and I actually went home to Forbes for the weekend. My first weekend at home since the end of November last year. I had some of my friends come for a sleep over, just like the old days. The only difference being that I have to sleep on the lounge with a feed tube in my nose, and I have a little less hair than them. It was good to catch up with the gang and find out all the goss. My Uncle Dallas and Auntie Olga came up from Melbourne for the weekend with my two cute little cousins, Ethan and Cameron. We had some fun with them. Dallas & Olga actually saved there heads and helped raise money to help me. Not only than, but they thought my new style was so trendy, they thought they'd better get in on a bit of my action. There's a picture here of me with Olga.

It was great to see Rex and Kikey, Smokey and GT, Birdie and of course my little mate Baxter. He's so cute. I had to come back to Sydney early the next week for more tests, but this time, Ronald McDonald House has allocated us one of their units to live in. It's really good. It's nice and cool and we have our own lounge room again. Mum and Dad can lock the car up underneath as well. Dad was pleased by that, because someone stole the spare wheel cover of his Prado while it was parked at Ronald McDonald House.

2009 Plan B

Normally at this time of year we'd be heading off on holidays somewhere. This year we were going to go to the Gold Coast for a week or more and then come back to Hawkes Nest for a week, and maybe have a few days at Wyangala before school went back. Never mind, that will just have to be next year!
It seems I have arrived at a sort of cross roads in my treatment. Every time I've had a Bone Marrow Biopsy, the doctors have been unable to aspirate any actual bone marrow to test. This has made it difficult for them to test my marrow, but the last blood test they did, just before Christmas, was not showing any Leukaemia, but was showing a couple of "different" cells. These could be bone marrow trying to get started, or it could be Leukaemia coming back. Either way, the doctors don't want to wait to find out. Because my bone marrow has been rendered all but useless from a combination of the Leakaemia and the first round of Chemo, they now want to move as quickly as possible to Bone Marrow Transplant. The only delay with this is that I still have a fungal infection in my lung, which is being cleaned up with a drug called Voraconizole. On the 13th of January, I will be having another bone marrow biopsy, both from my hip, and from my sternum. I will also be having another lumbar puncture. A few days later, I will have another CT Scan to determine how much the lung infection has reduced. If there is any still there, the doctor wants to remove it surgically, so they can take me to transplant sooner.
As far as transplant goes, I have some good things going for me. I am in pretty good shape already and I have a matched for tissue type sibling as a donor. The only limiting factor now is the infection.
For the BMT, I will have a big chemo therapy. It will make me very sick, but it is supposed to clean up any residual leukaemia so that my new donated marrow can start work with a clean slate. Once I start the tranplant, I have to be in isolation with only the Doctors, Nurses, Mum, Dad and siblings visiting. If any of them have even so much as a sniffle, they can't visit. This isolation will go for about 8 weeks, but could be as long as 18 weeks. Then, when I get out of hospital, I'll have to stay at Ronald McDonald House for another couple of months until I'm off the daily visits. Once I go to weekly visits, then I should be able to come home to Forbes and just come back to Westmead once a week.
On Wednesday the 15th January, I had a really busy day. My neighbours from home and good friends the Bennetts came to visit, and my good friends the Sweeneys also came to visit. They brought Nanna and Fafa with them. While they were here, Sprocket, Daniel and Josh all lined up for a haircut. This new style of mine must really be catching on, everyone seems to want one. Sprocket even let me shave off his moe. Spocket has not been seen without his moe for 27 years. Even Kathy said she can't remember him not having a moe. Good on ya Sprocko!!!!
Also on Wednesday, we had an appointment with the head of the transplant team, Dr Peter Shaw. He's getting me ready for transplant in the next few weeks. Since I'm going to be in isolation for such a long time, we asked him if I could go home for a few days? He said yes! So, all going well, I hope to have a few days at home in the next week or so.

The Weeks that Followed

Week 2
The worst thing about hospital is finding things to do. Just because you're in hospital doesn't mean you get out of school either. The hospital has it's own school. The primary teacher is Carmel Dawson, and she's really nice. She makes me do so much homework though. I have to paint things, and make things, and decorate things. My class back at Forbes have been sending me cd's of the news each week too. Thanks Mr Davidson. Heaps of my friends have come to visit me too. Darcy, Carly, and Nicki Morrison came with their Mum, twice. Carly was having her braces fitted, and it was nearby so they came for two visits. Tarni and Tahlia came with their Mum and little brother James as well. They brought Grace and Kaylah too. There's a photo of us all in my gallery.
I'm not allowed to leave the hospital ward while I'm having "chemo", but after that I can. On Saturday morning, Dad went back to Forbes to pick up my brother and sisters and bring them to visit. One of the things about living so far from the hospital, is that you get to stay at Ronald McDonald House (RMHW). It's huge, for a house. It can hold at least 18 families. They all get their own rooms. They all have their own bathrooms, but they share the laundry (there are two big laundries with two big washing machines and two big driers each) and the kitchen. It has about 4 ovens, 3 dishwashers, about 5 or 6 microwaves ovens, and 2 or 3 cooktops. Out the back is a really good playground, just like you see at Maccas, but better. So for the next 6 months until I'm allowed to go home, we'll be living at RMHW.
So for week two, I was having chemo, not feeling too bad, hanging with my family. Dad & Mum bought me a laptop so I can "keep up with my school work". Ha ha. It's good for chatting and playing games. I can watch movies on it, and I've started having video hookups with my sisters and other family when they're back home.
Week 3
My third week in hospital wasn't much fun. I was feeling pretty awful from the chemo, and I got a nasty rash. Mum went back to Forbes to stay a few days, so Dad stayed with me in the ward. (Beside my bed in the ward is a little fold up bed which Mum or Dad, or even Kristen can stay on. When one of them stays with me, the other one can stay back in RMHW with the other kids. Even Kristen has stayed for a few nights. The worst thing about week 3 is that I'm starting to get a bit thin on top. We decided to save my long plait, so Mum snipped it off before it fell off. Eventually I'll lose my hair, but when I do, I get to shave Dad's head, and Rhys's head. Even my uncle Dallas and Auntie Olga are shaving their heads, so we can all look the same. Dad's cousin David said he'd do it as well. Only problem is, he's already bald. The Morrisons and the Parsons visited me again. This time they were down for the physical culture championships at Homebush. They visited again on the way home.
Week 4
One of the side effects of chemo is that you are very vulnerable to infection. That's why everyone who visits me has to wash their hands before they come in the room. That's also why no one can visit me who has a cold, or is feeling sick, or who has had a virus, or chicken pox, or measels etc, etc. The nurses, when they change the dressing on my central line, wash their hands really, really well, and usually a few times through the procedure. Despite this, I somehow managed to pick up an infection in the central line, which meant I had to be on anti biotics for 7 days. The first sign of this infection is you get a temperature. Because the chemo has killed off all the cells that help you fight an infection, you need antibiotics. These should have finished on Friday 28th November, but I was still getting temperature spikes, so they have had to keep me on them.
This week Jacob and his family visited, and, while they were here, Madam from Australian Idol popped in. She gave everyone a hug, and I got my photo with her and her autograph. She was really nice. Dad said she was hot, but I thought she was cool.
The best thing this week was I got to leave the hospital for the first time in a month, and we all went to School Spectacular at the Entertainment Centre. My sister Aimee was in it, and so were a lot of other girls from Forbes High School. It was a great night.
Week 5
There's just Mum and me here this week, until Thursday anyway. Dad went back to Forbes on Sunday to take Georgia back for her dress rehearsal for the Happy Feet Dance Factory performance night. I had to have another bone marrow biopsy so the doctor can see if the chemo therapy is working. This was only a short one. I was only asleep for about half an hour this time. I have a sore back after this though. On friday they did a CAT scan of my whole body to see if they could locate a site of infection, because I am still getting spikes of temperature. They found a little spot on the outside of my lung which they think could be the offending infection. They need to try some different antibiotics to knock it out. It could be a bacterial infection, or even a fungal infection, but they want to see if they can get rid of it.
Week 6
Just me and Dad here this week. Dad asked Dr McCowage if there were any results back from my bone marrow biopsy. He told us the good news was that there was no leukemia cells visible, but that there were really no cells visible at all, so it was too early to say much. Mum and the other girls went back to Forbes because Kristen had to start getting ready for the Happy Feet Dance Factory end of year concert next Saturday. Not only that, but Georgias school assembly is on Wednesday as well. The leukemia is bad enough, but what is really annoying is missing my Year 6 farewell and end of year assembly, and worst of all, the Happy Feet Concert. Oh well, next year. I have really lost most of my hair now. Dad is getting ready for me to totally remove his hair. Dad said he always wondered what he'd look like bald. Well Daddy dear, you're about to find out. My Uncle Dal and Auntie Olga from Melbourne, are also going to shave their heads this weekend. By Christmas time, anyone with hair at the Woods house will look a bit odd. My brother Rhys is shaving his too. Even our friend Sprocket is going to shave off his moe. This is a big call for Sprocket. I think he was born with his moe. Also this week I had to have a bigger operation. Because I'm still on the antibiotics, the doctors are trying to find out why I am still getting temperatures, so they decided they should do a biopsy on the infection in my lung. This means another general anasthetic, (my fourth I think?). For this, they use the CAT scan to guide a needle into the area where the infection is and take a little sample out. They take this sample and test it to see what sort of infection it is. While I was under the anaesthetic, they inserted an NGT. This is a Nasal Gastric Tube through which they can feed my while I'm asleep. Because I'm taking so many different antibiotics, and I have these temperatures, I just don't feel like eating, and I'm losing weight. So, they feed me through the tube, and I start putting weight on again. My friend Kaylah Howell and her sister Abbey and their Mum Denise visited me this week too. I wasn't feeling so good, so I wasn't very good company. They brought with them a big box from Kristen, but I wasn't allowed to open it until Saturday. What??? So on Saturday I opened the box, and inside was the Happy Feet Dance Factory Classical Scholarship trophy. I was supposed to wait for Dad to be there with me when I opened it, but I didn't know and opened it anyway. At first it made me cry because I wanted to be at the concert, but then I got used to the idea. Dad even invited nurse Angela in to be "the audience", but instead, she became Miss Angela, and presented me with the trophy. Thanks Kristen and Sam!!!
Week 7
This is a good week so far. Mum and the girls arrived back here on Sunday morning. They'd left Forbes on Saturday night straight after the Happy Feet Concert, and stayed with Mum's sister in Bathurst on Saturday night. Then they got up early and came to Sydney. They had to be here early, because we all had tickets to High School Musical, the stage production, at the Capitol Theatre. These tickets were given to us by Cure our Kids. Then, at 8.00 that night, I went to Kylie Minogue in concert at Acer Arena. It was brilliant. The Manager of Ronald McDonald House at Westmead organised these tickets for me, and I was able to get tickets for Mum and the girls as well. Dad took us in, and came back to pick us up. While he was waiting, he noticed that a few people were leaving from a side door, so when the door opened he snuck in. While he was standing inside, one of the security guards asked him not to stand in the aisle, and to take his seat. He saw the last four songs. Good work Dad. We had a little bit of goodish news on Monday as well. Dr McCowage came in on Monday afternoon and said they didn't yet have any results from the biopsy, but no news was still useful news. He also said that there was "a flicker" of my neutrophils coming back. Neutrophils are the component in your blood that helps you fight infections. Chemo therapy totally wipes these out. So when you're body starts to produce them again, it's a good sign. Dad and the girls went back home on Wednesday. I still can't shake this lung infection, although they've started me on some different antibiots, again. Another bone marrow biopsy on Thursday too. I am starting to get out a little more now. They are letting me out of the ward for 2 - 3 hours at a time, but I can only go to RMHW.
Week 8
Dad, Kristen, Aimee & Georgia came back on Sunday, and when Rhys gets here on Wednesday, we'll all be together again, and just in time for Christmas. Christmas Day is Thursday. This week I am probably feeling the best I have since before I arrived. On Monday, my blood tests revealed I had 0.1 neutrophils. Hey, at least it's a start. On Tuesday, the doctor told us they had finally identified the infection in my lung (it's called Aspergillus I think?) and they can now give me the correct antibiotic. It has a long name starting with V, I'll get back to you on that. All going well, I hope to have a gate pass for most of Christmas Day.
Merry Christmas everybody.
Week 9
Just before Christmas I had another bone marrow biopsy, and the results showed no leukaemia visible, but there is nothing else visible either. It seems the Leukaemia, combined with the first round of chemotherapy, have pretty much obliterated my bone marrow, and it's having a lot of trouble picking up again. Geoff McCowage, my doctor, is thinking we might now have to take a slightly different tac now. The lung infection is getting smaller, but the doctors are now considering whether or not to remove the remaining infection with surgery to speed up my recovery. On New Years Eve, as I was packing up my room, I had a visit from the Infectious Diseases team, who decided I should increase the level of Voriconazole (the antibiotic/antifungal drugs I'm on), and see if they can't get on top of it quicker that way.
My first night back with the family in nearly nine weeks was good, although it did feel funny to have Mum and Dad being my nurses instead. Because I am still having my feeds at night through the nasal tube, Mum and Dad had to set it up. Let's just say I got the feed ok, even though it was a little different to the way the nurses did it.
We saw the new year in at RMHW with a couple of the other families there, and our friend Rob Walker from Ballina came to see us as well.
On New Years Day, my first day "home" from hospital, I had a great day, playing cards, riding bikes with Georgia around RMHW, and being a fairly normal kid, until just after dinner. I had a slight nose bleed, and because my platelets were low (I was due to have platelets infused the next day), Dad & Mum thought they should check with the nurses at Camperdown Ward to see what they thought we should do. The nurses said to watch it and if it hadn't slowed or stopped in ten minutes, to call them back. Before ten minutes had elapsed, the nurses called Dad back and said we should go to the Emergency Department. Up we went, and after all that, I had to spend the night in Emergency having a blood transfusion. I got out the next morning, Friday, and had a great day. Jo, Taylah, Jayden and Jake Hemming came to visit, and stayed for lunch. My cousin Merryn and her boyfriend BJ also came to visit. My new hairstyle must be really trendy, because everyone who comes to visit wants me to give them a hair cut like mine. Jake lined up, but he only had a number two. BJ also had a number two, but he wouldn't let me take off his rats tail. Besides, Merryn and Dad did most of his haircut. After lunch, Anita, Darcy, Carly and Nicole Morrison came to visit. We had a great afternoon playing UNO, Cadoo and Hide and Seek outside. After that we went for a drive to drop the big kids (Kristen, Rhys & Aimee) into Parramatta to go to the movies.
Week 10
On Tuesday, 6th January, Dad's cousin Chrissy and her family, Neil, Jasmin, Amber, Braden and Bonnie came to visit from Shell Harbour. On the 7th, we had a lot of visits to the hospital, because we had firstly had to go to Pathology for my blood tests, then to Oncology clinic to see Dr Geoff, then to see Dr Shaw, and we finally got out about lunch time, and surprise, the Dwyers came to visit. Steve, Anne Marie, Brett, Trent, & my great friend Jess. It was great to see them and we had a nice couple of hours together. Today was also Mum & Dad's 25th Wedding Anniversary. They celebrated in fine style, with Chinese Takeaway on the Verandah of Ronald McDonald House, with me, Georgia and Aimee. How romantic! Huhmm!
On Thursday, I didn't have to do any hospital stuff, but we did do the lap of Parramatta Park again. It was nice and cool so it wasn't too hard on me. Dad still needs to push me up the hills, but at least I'm helping him get fit. He really should thank me. I'll talk to him about that I think.
When I was visiting Dr Shaw on Wednesday, he was assessing me for a BMT. No, that's not a sandwich, it's a Bone Marrow Transplant. Because I have been 7 weeks since I finished my first chemo, and I still haven't made my own blood cells, the doctors are worried that if they wait too long, they are giving the leukaemia a chance to get going again. So, they think they should move to BMT, which I probably would have had anyway, but now they have to do it so I can at least make some cells. When that happens, I will have to have a very big chemo which will wipe all my cells, make me feel really, really sick, and I wont be allowed to have any visitors for about 2 months. That's because I'll be in Isolation.

Welcome to Eliza's Blog

How your life can change in an instant. Mine did! How did I come to be here at The Childrens Hospital at Westmead?
It all started in mid October. I had been feeling tired, and I was having trouble finishing games of netball and touch footy. Even dancing seemed to make me tired. Sometimes I would get a bleeding nose, and it would take a long time to stop. Then I started to become anaemic (looking pale) and Dad and Mum took me to the doctor. He did some blood tests, and the results showed that I had low blood counts with lots of unusual looking blood cells. The Doctor made me an appointment to see the Haemotology Department at the Childrens Hospital at Westmead. My appointment was for 9.00am on 3rd November, 2008. Mum & Dad brought me down from Forbes the night before and we stayed at Murfs place at Blaxland in the Blue Mountains. Murf is a cool friend of Dad's who thinks every month is Movember because he has a moe.
Week 1
We arrived at the emergency department of the Childrens Hospital, at 8.30am on Monday 3rd November. Once we arrived the nurse took some details from Mum and they took me inside where they did another blood test. It wasn't supposed to hurt, because they put some anaesthic cream on the inside of my elbows so I wouldn't feel the needle. The only problem was, that when they went to do the blood test, they couldn't find a suitable vein where they had put the cream, and they had to insert the needle in my forearm. That hurt! Ouch!!! I was feeling pretty lousy, and when the blood test came back, the doctor, Geoffrey McCowage, and a nurse took Mum and Dad to a little room and told them that the blood tests confirmed I had leukemia, but that didn't know which type. They thought it might be ALL (Acute Lymphoid Leukemia) but they wouldn't know until they did a bone marrow biopsy. This they do under a general anaesthetic. They insert a fine needle into your hip bone from the back, and take out a small amount of the bone marrow. Then they test it to see what type of leukemia you have so they can administer the correct type of treatment. At the same time they did a lumbar puncture. This is where they insert a little needle to take a small amount of spinal fluid, to see if there are any leukemia cells in your spine. For me there were none, so that was my first good news for the week. Unfortunately though, they could not decide on the type of leukemia, as the pathologists had said they didn't have enough of my bone marrow to be able to come to a conclusion. They did say that their were signs of AML (Acute Myloid Leukemia). The treatment for leukemia is to have chemo therapy, and the best way to administer this is by a "Central Line". This is a tube inserted into a big vein in your neck that goes down inside nearly to your heart. From where it comes out of your neck, they take it along under your skin and bring it out on your chest so that it is out of the way and behind your clothes. It doesn't sound good, but it allows the nurses to take blood for testing, and to give the chemo therapy without sticking needles in you. They can even do all that while I'm asleep and not even wake me up.
Anyway, because they didn't have enough bone marrow to test properly, and they had to put in a central line, I had to go back into surgery again on the Wednesday, 5th November to have all that done. I didn't know what was happening because I was asleep, but I think it was a bit tough on Mum and Dad. The doctor said he would not have results until Friday afternoon.
On Friday afternoon, Dr Geoffrey McCowage told Mum and Dad I had AML, and that we would start Chemo Therapy immediately.
So, at 6.42 pm on Friday 7th November, I started the chemo therapy which will get rid of my leukemia and make me better again. Dad told me to think of it like a team. On my team is my family, my friends, the doctors, the nurses, the chemo therapy, the other drugs, and I'm the Captain. We're the goody's. On the other side is the leukemia. The baddy's. So, they kicked off, but we've got the ball. The game might go for six months or even more, but we'll win because we've got the best players!!!
The first chemo goes for ten days. One of the drugs is given everyday, morning and night, another one is given once on day one, three and five, and the other every second day. After those ten days, there are two weeks for the drugs to take full effect, then hopefully a week to feel better, before they start round two of chemo. All together, there are four rounds of chemo. Having chemo therapy make me feel really sick, so they give me medicine to stop me feeling sick. They pretty much give me medicine for everything. If you have a pain in the tummy, they can give you something. If you feel like spewing, they give you something. The worst thing for me was I got a really bad rash. A bit like the rash you get from rolling on the grass just after Dad mows the lawn. Later on in my blog, I'll try and tell you a bit more about the chemo. They have big names.

What is Leukaemia?

Leukaemia is the general name given to a group of cancers that develop in the bone marrow. Leukaemia originates in developing blood cells, which have undergone a malignant change. This means that they multiply in an uncontrolled way and do not mature as they are supposed to. Because they have not matured properly these cells are unable to function properly. Most cases of leukaemia originate in developing white cells. In a small number of cases leukaemia develops in other blood forming cells, for example, in developing red cells or developing platelets.
There are several different types and subtypes of leukaemia. Leukaemia can be either acute or chronic. The terms "acute" and "chronic" refer to how quickly the disease develops and progresses.
What is Acute Myeloid Leukaemia (AML)?
AML is a type of cancer that affects immature blood cells on the myeloid cell line. AML causes an over production of abnormal blast cells (immature white cells) which crowd the bone marrow and prevent it from making normal blood cells. Because the bone marrow cannot function properly it cannot produce adequate numbers of red cells, normal white cells and platelets. This makes people with AML more susceptible to anaemia, recurrent infections and to bruising and bleeding easliy. The abnormal blast cells (leukaemic blasts) eventually spill out into the blood stream and can accumulate in various organs like the spleen and liver.
Each year in Australia around 2,290 adults and children are diagnosed with leukaemia. Of these, around 600 adults and around 50 children are diagnosed with the type of Leukaemia called AML.