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.