A Day Out

Just a quiet day today which started off with a nice sleep in. I don't ever feel guilty sleeping in, I always get woken up early to take some of my tablets and to get my feeds stopped, or started again. Yesterday Dad went for a ride on his bike with his brother (my uncle) Nigel. They went to Wisemans Ferry and back. Today we went to Parramatta Park for a picnic with my cousins Daniel and Patrick. We had lunch and then played some games, but we had to come home by about 3.00 pm because it was just too cold. Back to clinic again tomorrow. Let's see if I can get my counts up a little bit.

Here I am with Georgia and Aimee "sleeping in" on Sunday morning, and with Auntie Gwyneth, Patrick, Daniel, Mum Aimee and Georgia in Parramatta Park (I'm the one in the middle with the shorter hair style). At bottom is Uncle Nigel and Dad at St Albans near Wisemans Ferry on their ride.

Day 50. Anzac Day

Anzac Day 2009 is 50 days since tranplant for me. The last few days have been reasonably uneventful. I had my first clinic visit since discharge on Friday. There was virtually no change to my blood counts, and I haven't really started gaining weight again yet, but I have been feeling a little less sick. In fact, I went for two days without being sick, but I couldn't get three. All that does seem to be improving though. My cousins from Bathurst, Daniel and Patrick, and Auntie Gwyneth came to see me today. All I can do though, is hang around the unit, and visit the hospital. Hopefully tomorrow is a nice day, and if it is, we're possibly going to Parramatta Park for a picnic. Mmm, a possible picnic at Parramatta Park sounds perfect, particularly if we pack some pumpkin pie, pepsi, pineapple pieces, pistachios and potato chips. Tomorrow night is Grand Final night for So You Think You Can Dance, which I will be watching.

Go Charlie!!! Go Tahlia!!!

Good being Out.

It's nice to be out of hospital. I can sleep in without someone coming in to wake me up at 6am, or someone pricking my finger to make it bleed so they can test me for some level. It's nice to be able to do things we all take for granted, like going to the toilet without someone wanting to measure or test the result. But best of all, it's just nice to be able to sit at a table with my family and have a meal (even if I don't eat much yet), and share a room with my little sister again. Tomorrow I go back to the Oncology clinic to have my first blood tests since discharge.

47 Days Since Transplant. D Day. I'm OUT!!!!

I'm out. I've been D'ed. Discharged! Woooo Hoooo!!!!!!!!

Counts are: WCC 3.0. Neutrophils 1.2. Platelets 35. Haemoglobin 108. I can just hear you thinking, "Uh huh, ok, is that good?" Yesterday my platelets were only 25, and I haven't had a transfusion. I must be making my own! So, yep, it's good!!

Here I am with two of the Captain Starlights on D Day Morning.

The day started like every other day. Feeling a bit sick, bit of a chuck, swallow half a dozen pills, a little rest, some bloods taken, a visit from the doctor, and then, "Well Eliza, you can leave today." So after 171 days (10 days short of six months), 3 lots of chemotherapy & one bone marrow transplant, I have been discharged from the Camperdown Oncology Ward at the Childrens Hospital at Westmead. It feels good. Now I can stay at the RMHW Units with Mum & Dad, and visit the Oncology Clinic three days per week.

For me, being discharged does not mean I'm out of hospital without conditions. I need to remain in "isolation" to a degree. This means I am unable to stay at Ronald McDonald House itself because I cannot mix with a group of people, especially other children. You see, I just don't have any immunity to anything. All the immunisations I was given as a child, like measles, mumps, rubella, etc, etc, have all been lost. Over the next two years, I can be reimmunised for all these things. I cannot be immunised for chicken pox for two years, so that is why I have to limit my exposure to others. Even when I come home to Forbes, the doctors have advised that I limit my visitors to small groups, who are free of coughs and colds, and who are generally well, who are sure they don't have anything, and who wash their hands. I don't know how any of my own family will go if they catch a cold, I suppose they'll just have to move out until they're better. Hey there's an idea. I just figured out a way to get my own room!

So, even though I don't get to come home for a while yet, to get out of hospital is a big and very significant step for me.

Ready to roll (above), and Mum shows me the door (below)

Three of my guardian angels on D Day, Mel, Nicole & Debbie.








With Captain Powers in the now infamous"Girafeeta"pose


















Out of the ward........& out the door.

Day 46. This could be my last.

"My last what" I hear you ask! Well guess what! The D word has been used again. This time it has been used with a capital "D". At the Monday meeting yesterday, the doctors told Mum and Dad, that as far as they are concerned, they are happy for me to be discharged. So, fingers crossed, tomorrow (Wednesday 22nd April, 2009) I will be out of hospital. (It's Nannas birthday tomorrow, so that would be a nice present for her).

However, all that means is that I will be with Mum & Dad at the unit, and coming into hospital every second day to have my blood tests done. I hope that will speed my recovery, because I always feel better when I'm at the unit. Sometimes I get a bit sick, but it mostly passes before long, and I'm ok again.


Today, my counts were again largely unchanged, but my WCC was 3.2, which is my highest overall WCC since transplant, and I had some visitors as well. Our friends the Williams' dropped in to say hi.