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.