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.