Whoops! What a Bug.....er!

It doesn't pay to get too comfortable sometimes. This week was supposed to be like any other week. Come to Oncology Clinic at Westmead, have my blood tests, see the doctor, make sure everything is ok, go home. Uh uh!

Late last week, Dr Shaw had phoned up with the news that my "immuno globulin" level was too low, and when I came down next, I would have a transfusion of these to top me up. Simple!!! I've been on fortnightly visits because the only reason I need to come to clinic weekly was to have my central line flushed, which Mum can do anyway. Fortnightly blood tests and therefore visits, were sufficient.

This week, we came down the night before, same as usual, and on Wednesday morning, Dad took me up to fishbowl to have my bloods done, and one of my lumens hep locked. (The central line has two lumens, one white and one red, and after blood is taken, these are flushed with saline, and filled with heprin so that blood doesn't clot inside them. This is called hep locked for short). The other lumen was left alone, because the nurses in clinic would use that one to do the tranfusion of immuno globulin. After the visit to fishbowl, we went back to Ronald McDonald House and had brekkie, then Dad went off to his wool sale. Same as usual.

After brekkie, Mum took Georgia up to the hospital school, and then she took me to clinic for my usual meeting with Dr Shaw. All my blood results were good, and apart from a nagging chesty cough, most likely due to me now having white cells to mop up any residual infection, all was well. So, let's do the infusion, then we'll head home to Forbes.

After about thirty minutes, I was starting to feel really sick. Debbie, the nurse decided we should take me to a private room so they could monitor me. I think she suspected something was wrong. After about an hour, I was in real trouble. My blood pressure had plummeted, my temperature was about 39.6 and I had the rigors (shakes) really bad. I was being sick, couldn't drink enough to satisfy my thirst, and on a down hill spiral. Debbie decided it was time to take some action. Back came Dr Ruchira who agreed, get the fluids going and let's start the antibiotics. About half way through the third bag of fluid, Dr Shaw came in and said if my blood pressure didn't stabilise after the third bag, I would be going to ICU. Intensive Care Unit. Never been there before, but I was too sick to care. I'm pretty sure Mum and Dad (who had arrived back just as I was starting to feel off) were really, really worried. Anyway, after the third bag of fluid, and the first of the antibiotics, my blood pressure did stabilize, and I started to feel a little better. I even felt well enough to eat an icy pole. It was a big relief, especially to Mum and Dad, when the doctors said I was going up to Camperdown, and not to ICU.

On Thursday morning, the nurses took my bloods again, and I was on three of the antibiotics I'd been on after transplant. Gentimyocin, Timentin and Teicoplanin. At lunch time, I was told that the lab had managed to culture a "bug" in my line, and that I would have to stay in hospital for at least a week. Oh well, best place to be I suppose.

I was really starting to go well too. My appetite is slowly coming back. I've got more energy, and can run around in the yard. Just to make sure we don't get too relaxed, I get a bug in my line. They are now thinking of taking my central line out to reduce that risk.

These "bugs" in a central line are not uncommon for kids like me, but if you get one, things get pretty scary. Oh well, I think I'm on the mend, again.

City to Surf

On the 9th of August is the City to Surf. This year, Dad, Mum, Kristen and Aimee are going in it to help raise funds for Cure Our Kids. http://www.cureourkids.com.au/
Cure our Kids is an organisation which helps kids like me and families like mine when we are faced with things like leukaemia. Dad and Aimee are going to run the race, Mum is going to start running, and Kristen is just going to walk it. In reality, probably only Aimee will run the whole way, but we'll wait and see. You can help us help the Cure Our Kids Team by sponsoring the Woods Family at this link.
http://city2surf.everydayhero.com.au/the_woods_family

At Long Last

After my last visit to clinic, the doctors have allowed me to now visit fortnightly. This is only because Mum can flush my central line, and has become pretty good at putting down my NG tube if I throw it up. My blood counts were down a little, but are still at an acceptable level.

Today, Dr Shaw phoned us at home with probably the best news I've had for ages. It's been a long, long time coming, but at long last we finally got the news I've been hoping to hear. He told me I can now eat Maccas chips. That is providing they are cooked fresh. Now I can't wait to get there.

Here's me and Georgia with our new wool beanies, and my impression of a french film producer.

My Century

Today is day 100 post BMT. Apparently most people start to notice a bit of a difference about this time after a bone marrow tranplant. They all describe how their appetite is starting to improve, and they don't feel as sick. That is probably true, but the progress is so slow, it's really hard to notice. At clinic last week some of my counts had retreated a little (not enough to be a problem) which could have had something to do with the little sniffle I'd picked up. One thing I cannot afford to do is relax about being near people with colds. My official counts were Hb 103, which was up a little, my WCC was 3.8 which was slightly down, my neutrophils were down a little to 2.8, but my plateletes were up to 130. I don't seem to be able to keep these silly NG tubes down though. Another one came up yesterday, so I'll probably have to get a new one today. Not the way I'd planned on celebrating my first tonne.

Being home is sometimes a little boring because I can't go to school, or shopping or anywhere like Maccas, but sometimes I have to make my own fun, and anyone who knows me, knows I love clowning around. Below is my impersonation of the seven dwarfs. Happy, Doc, Sneezy, Bashful, Sleepy, Dopey and Grumpy.

So Far So Good

I've been home now for nearly two weeks. My first visit to clinic at Westmead since I came home was last Wednesday. Dad was already in Sydney, so Mum and I drove down on Tuesday afternoon and we all stayed in one of the RMHW units. On the Wednesday morning, we all went over to pathology (we call it Fish Bowl, because the walls are all painted in a Finding Nemo theme) and had my bloods taken, and my finger pricked. Dad went off to his wool sale, and Mum and I stayed to see the doctor. This time we had Dr Ruchera who is one of the "fellows". She was the one I had most of the time when I was in the isolation room in Camperdown Ward. Anyway, she had some premliminary results for the biopsy I had done before I left (two weeks ago, tomorrow) which were very encouraging. There was no leukaemia detected in the test, and my blood counts are really on the move. My WCC is now 4.1, neutrophils are 3.1, platelets are 122 and haemoglobin (hb) is 99. The hb is the slowest to move, but the doctors are happy with it. I will have to have a bone marrow biopsy every three months for two years. So far, so good. I still have about another three months to go of this semi isolation I'm in. No crowds, no takeaway, no school, no sniffly visitors, and avoid chicken pox like they were swine flu. Lots of my friends have been immunised against chicken pox, so I need to stay clear of them for two weeks from when they had their needle. I'm still having trouble with eating very much, and twice since I've been home I've chucked up my NG tube. The first time I did it, we went up to the hospital here at Forbes and Doctor Draper put a new one in for me. The second time, which was only yesterday, Mum did it. Mum and Dad have seen it done that many times, they always said they could do it. So, Mum did. Good on ya Mum.
This week I have to go to Sydney on Tuesday morning to have a barium swallow. This is where I drink some flavoured (hopefully) barium and have an xray at the same time. This is to see if they can find a reason that I'm still feeling sick.