18 Nov to 6 Dec 06

Saturday, 18 November

I’m backdating the journal a bit as I haven’t had much time over the past couple of weeks to make any entries. I’ll make it very general.

We returned to Canberra on Saturday. I was so happy to see Sarah. I was getting really anxious to see her. I think that she was pretty happy to have her family home too.

We had some friends around on Sunday which was great. Olivia was feeling fairly tired and run down.

Olivia was due to have her stem cells collected over the coming week in preparation for her bone marrow transplant. We were given very strict instructions regarding her treatment when we returned to Canberra. The timing of the stem cell collection is absolutely crucial so we had to keep a close eye on her blood counts over the week. We were told to return immediately to Sydney once her white cells had reached a certain level. By the end of the week, Olivia required daily finger pricks. She also required two doses/injections per day of G-CSF (this drug stimulates white cell production). This involved nurses visiting our home at around 8.30am and anytime between 6 and 8.30pm. Olivia did not enjoy this at all! Funnily enough, she was always excited to see the nurse at the front door and happily chatted away, sat up on the couch and rolled up her pant leg, showing the nurse where to put the “neetle” – but freaked out as soon as the needle got near her leg. However, it did help somewhat that she was able to participate in the cleaning of the needle site with the alcohol wipes. She was very thorough too!

By Thursday, Olivia had to go to outpatients at the Canberra Hospital to have a blood transfusion. Luckily, the play therapist was around as Olivia was able to paint. We also did some beading and watched Wiggles DVD’s. We were there for around 6 hours.

By Friday morning, Olivia was feeling very tired and decided to take herself back to bed after only being awake for about half an hour. We were concerned that she might be developing a fever. Once the nurse arrived to administer her G-CSF, she also checked her temperature which was about 38.6 which meant she had to go straight to hospital.

I took Olivia to outpatients to begin with. The doctor checked her out and then the nurses took more blood and started her on antibiotics. Olivia had very bad ulcers on one side of her tongue so she found it quite painful to eat. We were able to give her something to help numb the area. Shortly afterwards, Olivia had picked up a little. Andrea, the play therapist, came to see Olivia and gave her a few things to keep her amused. I had a bit of a chat with Andrea (she’s a lovely person to talk to) and also had a bit of a cry (well, a lot, actually, but I think I really needed to let it out). She was very kind and was more than happy to spend her time listening to me.

Olivia was then moved downstairs to the paediatric ward. She was very tired by this stage and it wasn’t long before she fell asleep. During this time, Olivia’s oncologist in Sydney wanted to speak with me. I had to contact her at her home (she’s only part-time). She had told me that another oncologist had contacted her regarding a meeting they’d had involving Olivia’s trephine result (the sample of bone they took from the marrow – it usually takes about 10 days to process). Apparently, the result had come back positive (meaning that there were still neuroblastoma cells present). The oncologists unanimously decided that it would be best not to collect Olivia’s stem cells this time round. I think they like all of the bone marrow to be clear before doing so. Naturally, I was fairly devastated to hear this news. I guess I had my hopes up since her aspirate result came back clear. This set back meant that we no longer needed to go to Sydney and that Olivia’s doctor may attempt to collect Olivia’s stem cells after the next round of chemo. This also means that Olivia will require another bone marrow biopsy prior to the next round of chemo to see if the previous round of chemo may have improved her trephine result.

The problem with collecting stem cells after the next round of chemo is that stem cells aren’t commonly collected after this particular combination of drugs (as they have a slightly different effect on her blood count). Her doctor is currently looking into this. If we find that this can’t be done, then it may mean that Olivia will need an additional round of chemo that includes the same drugs they normally use before collecting stem cells. I’ll be very disappointed if this happens but unfortunately there is absolutely nothing we can do about it.

Getting back to Olivia’s hospital stay…she required platelets on Friday night. They didn’t arrive from Sydney until quite late so this was a little disruptive to our sleep. Olivia and I spent most of Saturday morning painting. Andrea had given her a large canvas to paint on so that she could hang it in the Camp Quality room. James arrived just before lunch and I went home to freshen up and spend some time with Sarah. Bec and I took Sarah to hospital for a visit in the evening. James stayed with Olivia. Apparently, he didn’t have a good night’s sleep as Olivia needed a blood transfusion. The blood didn’t arrive until late that night and the nurses were in and out of the room all night.

Luckily, Olivia was discharged around lunch time on Sunday. She was so happy to be home.

The rest of the week was spent mostly at home, playing with my beautiful girls. Not a single day went by without Olivia wanting to go on the trampoline. This was an early Christmas present for the girls from Mum and Dad. They thought that it would be best to give it to them earlier since Olivia wouldn’t have much time to enjoy it before she has her transplant. Sarah enjoys being bounced on it but is usually more interested in eating the leaves and twigs that have fallen onto it.

On Tuesday, I had to take Olivia to the outpatients clinic to have a blood test, a shot of Vincristine (chemo) and to have her dressing changed. The play therapist has a fairly crucial role in that she is very good at amusing and distracting Olivia during this time. It can take quite a while and she often needs to sit still. However, the nurses are great in involving Olivia in cleaning the injection site on her leg and removing her dressing and other adhesives on her body with the ‘sticky munchers’ (wipes). Olivia is usually treated to lots of stickers and band aids which she then proceeds to plaster her body with.


James managed to go to work from Monday to Friday, without disruption! I managed to catch up with a few friends I haven’t seen in a while and in turn, Olivia and Sarah got to play with their little friends which they really enjoyed. I also managed to get a bit of Christmas shopping done. Mum looked after the girls and I tried to get most of it done in one hit. I knew that I wouldn’t have much more time before Christmas to do it.

My family and I took Olivia and Sarah for a picnic at the park which they really enjoyed. It’s nice to get out with the girls whenever I can. We try to avoid busy venues, like the shops and most other places where kids go. It’s too risky – the last thing we need is for Olivia to get an infection.

Monday, 4 December

This morning was very busy as we packed all of our things for Sydney, again! We left mid afternoon. Once again, I was very upset saying good-bye to Sarah. She is so gorgeous. She’s crawling everywhere and is always pulling herself up on the furniture now. She thinks she’s so clever and gives me a very cheeky grin. Anyway, I know she’s in great hands and she is very comfortable with my mum.

I’d like to take this opportunity to thank my family and friends for their all their love and support throughout this difficult time. James and I have been overwhelmed and so moved by everyone’s generosity. My Mum, Dad and Bec have been unwavering in their support. I can’t find the words to thank them enough for everything they have done for us. And they have done too many things for us to list, from looking after Sarah when we’re away to making meals and helping me around the house. They’re emotional support has been invaluable and they do everything they can to make our lives as easy as possible. They’re wonderful! Thanks to Auntie Nean for your great support and for all of the delicious meals you have brought over.

I consider myself to be so lucky to have such an amazing group of friends. I’d like to say thank you for all of your emotional support and offers of help. Thanks to all the friends who’ve brought us yummy meals, sent Olivia pressies in hospital or given me hugs when I’ve needed them. Rosie and Garry – you have been a fantastic support to us in Sydney, having us over for meals and just hanging out with me when I need to have a break or when things get tough. James and I would like to pass on a very special thanks to all of those friends who have taken the time to organize raffles for Olivia. We are so moved by your generosity and support, as well as that of the community. I know that there were many people involved in organizing these raffles and we are so appreciative. However, we would like to thank Tash for all your hard work – you’re amazing and have been a very good friend to me throughout all of this. Thanks also to my very special friends Kate, Garry, Rosie and Wendy. I apologise if I haven’t mentioned everyone – I don’t know many details of the raffles, some people have been a little secretive. Although, the purpose of this website has primarily been for family and friends, we would like to thank all of the businesses who have made wonderful donations to these raffles. We have decided that the money raised will assist us with any out of pocket medical expenses and the rest will go into a trust fund for Olivia so that, in the future, she will have the financial support to help her deal with any potential long term side effects of the chemotherapy or any future treatment.

Tuesday, 5 December

Olivia began her day by slipping on the tiles of our room in RMH and knocking her bottom teeth. I ended up covered in blood and she, unfortunately, ended up with a loose tooth. It was quite painful for her and I was upset for her as well since it was the last thing she needed, particularly since she was about to have a general anaesthetic in a few hours. We decided to take her off to the hospital dentist. The dentist seemed to think that, although the tooth was loose, it was just concussed and thought that it would most likely recover. He told us to watch it very carefully to ensure that it doesn’t form an absess or become discoloured. In some cases, the tooth can die.

We then headed off for Olivia’s hearing test (this needed to be tested prior to chemo starting to establish her level of hearing and to see if there has been any hearing loss as a result of the Cisplatin, one of the chemo drugs). Unfortunately, the audiologists couldn’t actually determine Olivia’s level of hearing with the test they used. They did establish that her eardrums and nerve endings were working well.

We took Olivia to have a finger prick test so that the doctor had a record of her blood count before starting chemo. It wasn’t long before we saw her oncologist. We went over the details of the stem cell collection which she is hoping to do after this next cycle of chemo. Of course, this all hinges on Olivia’s bone marrow trephine result. Fingers crossed! We also discussed the plan for all of Olivia’s retesting which will take place during the same week as her stem cell collection. Hopefully, if everything goes according to plan, she won’t require more chemo (apart from transplant) and we will have a nice break from Christmas until the day after Olivia’s birthday. Keep up those prayers!

James and I also had an opportunity to look at Olivia’s CT scans (before and after scans). I initially told her doctor that I did not want to see them as I thought I would find them too upsetting. She seemed to think that I would feel quite pleased and reassured with the results. So I did it. Too be honest, it was very difficult to see anything at all. Even Olivia’s doctor had a bit of trouble identifying some areas of disease. It really does require an eye for detail. However, I could see a considerable difference between scans. Apparently, the radiologists seemed to think that half to two-thirds of the tumour in her spine has shrunk (and that was only after two rounds of chemo). It does look very encouraging.

Olivia went in to have her bone marrow aspirate and trephine at around 2.30pm. It’s always hard watching her go under a general anaesthetic. She woke up briefly from the anaesthetic and then, luckily for us, she went back to sleep for a while. As you may be aware, her previous experiences with anaesthetic haven’t been all that good, to say the least. When she finally awoke, she was quite happy and enjoyed a snack of chocolate. Now we have an anxious wait ahead of us as it can take up to ten days to get the trephine result.

We were finally moved into C2West (the oncology ward). Olivia’s doctor decided it would be best to begin Olivia’s chemo very early the next morning so that the stem cell collection would hopefully work around us attending the Wiggles’ concert on the 18th. Timing can be everything when it comes to Olivia’s treatment. Olivia had to stay in overnight as her pre-hydration fluids were going to begin at about 4am. We managed to take her back to RMH for about an hour in the evening just so that she could get some fresh air and avoid being cooped up in the hospital. James stayed in hospital overnight while I spent the night at RMH, trying to kill cockroaches. I am absolutely petrified of cockroaches so I found it very hard to cope without James (the bug killer in the family).

Wednesday, 6 December

I awoke to find another killer cockroach scurrying around the tiles in our room. It was huge. I didn’t want to go near it. I placed a box over it and slammed it with James’ shoe several times. I asked James to remove it’s body when he went back to the room. As it turns out, it had wasn’t dead, I just disabled it so it was probably a little uncomfortable for a few hours. Those things are hard to kill, no wonder they’ve been around for millions of years.

Before going in to see Olivia, I had to go for a follow up appointment for the grommet I had put in my ear. I need to have a hearing test to check my hearing level in my right ear. Hopefully, I will be able to tie that in with our next visit to Sydney.

Olivia seemed to be in good spirits this morning. When I arrived, the music therapist was there with her guitar and the kids were playing instruments and singing Christmas carols. Olivia really enjoys this time and is always disappointed when it ends. We then spent some time painting and doing some crafty activities Olivia’s little friend, Jack, sent her.

It was a battle to get Olivia to sleep this afternoon. When she finally did, it was for hours! Luckily, she hasn’t been sick from the Cisplatin yet. However, the nurses have warned me to expect it.