10 to 17 Nov 06

Friday, 10th November
I had to take Olivia to hospital again this morning. She was continuing to pass some blood and had a slightly bleeding nose. We weren’t overly concerned but suspected her platelet count might be low again. Once in hospital, the doctors did another blood test. Her platelet count was 37, not really low enough to warrant a platelet infusion. They also did a coagulation test to make sure her blood was clotting properly. The doctors didn’t seem too concerned about the bleeding particularly since it seemed to be subsiding. We then went home and awaited the results. The results were normal.

Saturday, 11th November
Today was fairly quiet. Olivia was feeling pretty good today. She was very happy and excited and it was great to see the old Oli back with us.

Sunday, 12th November
James’ brother, Phil, and his family visited us this morning. Olivia really enjoyed catching up with her cousin, Sam. Mel (Olivia’s auntie) and I took Olivia to the local shops to get a few things. This is the first time I’ve taken Olivia out to the shops since she was diagnosed. We weren’t very long and luckily there weren’t many people around. I’m always reluctant to take her to public places as there is always a risk she will catch some sort of infection. However, her blood count seemed to be on the rise and we always have to make sure we wash her hands. We realise that we can’t wrap her up in cotton wool as she needs to have some sense of normality in her life.
James took Olivia to hospital to have another blood test. Her platelet count needed to be checked as she couldn’t begin chemo unless it was over 100 (she is due to start tomorrow). Later in the evening, we rang for the results which showed that her platelets were only 79. We rang Sydney to see if we could still go up tomorrow. No-one seemed to know. We packed our bags anyway and prepared ourselves to leave early the next morning.

Monday, 13th November
We spoke with Dr B, Olivia’s oncologist, early in the morning. She told us to make our way up to Sydney tomorrow morning. She also said that she was booked in for a bone marrow aspirate. We then had a quiet day at home. Olivia and I made blueberry muffins (a favourite pastime of hers!). Sarah was crawling all over the place today and has begun to get into every drawer in the house – she’s very inquisitive! All those crawling baby memories suddenly came flooding back to me – jamming fingers in the drawers, headbutting walls, sore knees from crawling on the tiles and the frustration from sliding around on them.

Tuesday, 14th November
We headed off to Sydney a little later than we had hoped for – just before 10am. Once again, we left Sarah with my mum. I got a little teary saying good-bye to her. It doesn’t get any easier but I know my mum is great with her.
We arrived at the hospital at about ten to one. Apparently, people were starting to panic, thinking we may not arrive on time. However, we have come to learn that nothing happens quickly in any hospital and we usually end up waiting for hours on end. And, that, we did. It took over an hour for us to see the doctor and it wasn’t even Olivia’s usual doctor and then we had to wait for almost another two hours before Olivia went in for her bone marrow biopsy. All we heard for hours on end was "I’m hungry".
My sister, Bec, came up to Sydney so that she and I could go to the Kylie concert. The biopsy required Olivia having another general anaesthetic. Before Olivia went in for her biopsy, Bec and I decided to go to the shops as I wanted to see how Olivia would go without me being there, given the bad reaction I got last time.
Apparently, when she woke up from the anaesthetic, James said she was pretty grumpy and was asking for me and for chocolate.
Bec and I returned to RMH and got ready to go to the Kylie concert. Firstly, we headed up to the hospital to see Olivia and take her some dinner (some meatballs which my mum had prepared and carrots) and of course, chocolate. She was very happy.
Bec and I then made our way to the concert. It was fantastic!

Wednesday, 15th November
I pretty much spent the day at the hospital. It was a fairly quiet day. We spent a bit of time with Olivia’s oncologist trying to work out a time line for Olivia’s stem cell collection, blood tests, re-evaluation and pre-transplant tests, her transplant and radiation therapy. Her doctor suggested the transplant should start on the 15th of January. I pointed out that it was her birthday on the 15th and that it wasn’t preferable to start on that day! So, it is likely to start on the 16th. This will give us a good gap between treatments for Olivia to enjoy some time at home over Christmas. We were initially told that the transplant would begin after Christmas but have now been told that it is not the best time to do that as it is much more difficult to obtain blood products over that holiday period. Her doctor also informed us that she will most likely begin radiation five to six weeks after the start of the transplant.
The next few months are going to be extremely busy for us – it’s quite overwhelming. There’s also a lot we have to remember, for example, dates, times, medications. We’re always having to chase up doctors and nurses to find out results or to remind them to do certain things.
A couple of hours after our discussion with Dr B, she returned with some great news (we love great news!!!). She had received half of the results of Olivia’s bone marrow biopsy. The bone marrow aspirate (which takes out the spongy substance from the marrow) came back all clear. We were absolutely thrilled to hear this news, as the results were negative (cancer cell involvement) after her first bone marrow test. I was so excited, I hugged the doctor. We are now awaiting the results of the other half of the test, which is called a trephine (it’s where they take out a small sample of the actual bone). We expect this result to take a few days.
Olivia continues to be in great spirits.

Thursday, 16th November
I stayed with Olivia overnight. She was pretty happy this morning. The weather here in Sydney was revolting – it was cold and rainy. I headed back to RMH later in the morning to have a shower. I then went up the rode to get Olivia some Macca’s ‘chippies and lemonade’. It’s great to see that she hasn’t lost her appetite this time round. She’s been eating very well. We’re just thrilled about that. We encourage her to eat whatever she can. This whole experience has taught us to be so grateful for the smallest things (well, actually, eating is actually quite a big thing to us). Put it this way, we certainly don’t take them for granted anymore.
Olivia spent some time with a couple of other kids and the music therapists this morning. They played instruments, did some singing and dancing and played some fun games to music. Olivia had an absolute ball – she certainly didn’t hide her excitement! It was great. After about an hour, while they were packing everything away, Olivia was already asking them to do it all again.
We spent some time doing some art activities with Olivia in the afternoon. It was late in the afternoon before she fell asleep. She must have been tired because she slept for about three hours.
We had some friends visit us in hospital in the evening.

Friday, 17th November
Olivia is due to finish chemo today. It was due to finish at 10pm but the nurses are trying to speed things up a little so that she finishes at around 8.30 tonight. We will then go back to Ronald McDonald House and head back to Canberra tomorrow. Olivia will need to have two injections of G-CSF every day for 10 days beginning tomorrow. This is so her white cell count is elevated to a satisfactory level for harvesting her stem cells. She will hate this. The injection goes into her leg and she puts up a huge fight and screams every time – it’s heartbreaking.
The music therapist returned this morning for some more dress-ups, dancing and games. Once again, Olivia loved it. At the end, the kids spent some time painting pictures on each other’s hand. Olivia painted a lovely pink and yellow painting on mine. A few minutes later, the Governor-General and his wife (and his huge entourage) paid us a quick visit. Luckily, I had washed all the paint off my hands before shaking his. They seemed like lovely people. Unfortunately, we missed out on a photo opportunity because they weren’t here for long.
We spent a good part of the afternoon coordinating all of Olivia’s care in Canberra with the hospital’s outreach nurse. There was a fair bit to organise and to remember.
Olivia was very excited about the prospect of leaving hospital tonight. It’s all she could talk about. In fact, she didn’t stop talking from the time she woke up in the afternoon until she went to bed. It was great to see her so happy. She was smiling and giggling all afternoon. She told every nurse or visitor she had today ‘I go back to Canberra tomorrow and see Sarah’. She often talked about Sarah – she just adores her. Olivia’s chemo finished just before 8.30pm. The nurse unhooked her from the drip and she was off. She was squealing and giggling with excitement and kept repeating ‘I’m unhooked from my machines’. James and I are just so proud of the way Olivia has been handling this ordeal. We think she is truly amazing and so courageous. We love her soooo much!

27 Oct to 9 Nov 06

Friday, 27 October
James stayed with Olivia last night and apparently it was pretty uneventful. Fortunately, the extra anti-nausea medication the doctors gave her helped and she didn’t get sick. She actually had a reasonable night’s sleep and so did James.
Olivia’s MIBG scan was cancelled as the machine needed servicing. She will now have that scan and a bone marrow aspirate when we return to Sydney for her next cycle of chemo.
One of the doctors, the head of pediatric oncology, came to see us this morning with the results of the bone and CT scans. We received the best news we could have hoped for– Olivia’s tumours have shrunk after just two rounds of chemo! The chemo is working! There’s apparently a significant difference. The doctor said that they are disappearing and the bones in her head appear to be repairing themselves. We still have a very long road ahead but this great news should help us to stay strong and positive. She’s kicking it in the butt! We knew she would. She’s our little fighter. James and I were so incredibly happy after hearing all of this. That doctor had just made our day, week, month! Once again, words cannot explain how relieved and elated we are.
The rest of the day was fairly quiet. Olivia had a little nap. She fell asleep in my lap. James headed off for the Motor Show. Olivia and I spent our afternoon going for short walks around the ward, beading, watching the Wiggles and at one point, we went up to the Starlight Room but not much was happening there. She was very tired by late afternoon and had another sleep. I slept over in hospital and James went to a friend’s house for dinner.

Saturday, 28 October
Today was another quiet day. I went to Bondi Junction to meet up with my friend for lunch and to shop. I didn’t buy much but it was good to get out of the hospital for the afternoon. I returned to hospital later that afternoon. James and I had dinner, one of the frozen meals Mum had prepared earlier. Olivia was pretty quiet, just lying fairly still in her bed and staring at the portable DVD player. At this point, I became the least popular parent. Everytime I spoke, she told me to stop talking and that she didn’t want me there. She was very grumpy and lethargic. This didn’t really bother me at first. I knew she was going through a lot and so I just stayed out of her way for the time being. James stayed with Olivia that night. Chemo finished late Saturday night and post hydration fluids ran for a following 16 hours.

Sunday, 29 October
When I arrived at the hospital this morning, I discovered that Oli was still a Daddy’s girl. She didn’t want anything to do with me. This continued for the day. I later went out for a little while, hoping that things might settle down by the time I came back. I even brought back Macca’s chippies and lemonade for Oli because I know how much she loves them. She showed no interest in them. Later that afternoon, we were given gate leave (meaning we could leave hospital for a short time, in our case, it was overnight) but had to return the next morning for an appointment with Olivia’s oncologist and for her GCSF injection.
Olivia continued to be grumpy and only wanted her father. By this stage, it was beginning to bother me but once again I just stayed out of her way for a while. It just meant that James had to do everything for her (which, I guess, wasn’t really that bad for me!). I went to a friend’s house for a cuppa. When I returned to Ronald McDonald House, there was no change – Olivia was still unhappy with me.

Monday, 30 October
We went to clinic (Ward C2North) for a 9am appointment with Olivia’s oncologist and to have a dressing change and GCSF injection, before we could depart for Canberra. Her oncologist was over an hour late. All up, it took just over five hours just to have a simple injection and dressing change. We didn’t leave the hospital until close to 2.30pm. During our long wait, I returned to pack up our room at RMH so that we could get away as soon as we were finished at the Hospital. James stayed with Olivia as she was still a Daddy’s girl.
We left for Canberra not long after 3pm. Olivia complained about everything I did on the way home. I got ‘Don’t sing’, ‘Don’t put your sunglasses on your head’, ‘Don’t talk to me’ etc, etc. This continued for most of the trip. I wasn’t even allowed to look sideways.
When we arrived home, it was great to see Sarah. I had missed her tremendously. We all had. She even looked different to me – she seemed to have grown so much. She looked fatter and had rosy cheeks. I gave her the biggest cuddle. Mum and Dad were there and Mum was making dinner for us. Mum bought us flowers and wrote on a balloon – ‘We’re kicking butt!’ Bec baked a chocolate cake for Oli which said ‘Welcome Home, Ollie’. It was great to be home.

Tuesday, 31 October
James headed off to work this morning, much to Olivia’s disappointment. She was very unhappy about Daddy going off to work. There were a few tantrums and she eventually came round to me (she had no choice!). She was still very tired and lethargic and just wanted to lie in bed watching Wiggle’s DVD’s. Olivia was very demanding and couldn’t work out what she wanted. One minute she would want a sandwich and I would make it for her but then she would decide that she didn’t want it. This continued throughout the whole day. It was pretty exhausting. I was also trying to meet Sarah’s needs. By the time James had come home, she didn’t want anything to do with him! I had to do everything for her and she wouldn’t let James go near her. We thought it was quite funny. She seems to only be able to handle one of us at any one time!
Wednesday, 1 November
I took Olivia to hospital this morning. She was still incredibly tired and lethargic and had a couple of low temperatures. She had a blood test and we waited around for the results. However, the doctor didn’t seem to be too concerned about her and the results were okay. She was still a Mummy’s girl today.

Thursday, 2 November
Olivia was quite good today. Kirsty’s Grandmother had been sick since around the time Olivia was diagnosed and had taken a bit of a turn a few days ago. Sadly, she passed away today. We tried to explain to Olivia why mummy was so sad, though she is probably still just a little too young to really understand.
Friday, 3 November
Olivia was pretty grumpy today. I didn’t go to work, so Kirsty was able to take a break and went out shopping.

Saturday, 4 November
Olivia was again being pretty mean to Kirsty this morning. Kirsty thought it would be a good idea to take her out for a picnic by the lake. Kirsty’s Dad and sister came along too. Olivia absolutely loved getting out. Unfortunately she started to pass blood and was complaining about having a sore tummy. James had to take her to hospital after dinner. She had a bleeding nose whilst we were there. As it turned out, her platelets were low and she required a transfusion.

Sunday, 5 November
We spent most of the day waiting around the hospital for the doctor to turn up to give Olivia the all clear to go home. As we have come to learn, nothing happens in a hurry in hospital. In contrast to her eagerness to go to hospital last night, the novelty had well and truly worn off and she was continually saying "I go home now". After a late sleep, Olivia spent pretty much the whole evening nagging us to make muffins. She threw the biggest tantrum when told that she would have to wait until tomorrow. She absolutely refused to take no for an answer, and must have said "I make muffins NOW" about a hundred times.
Overall, Olivia has not handled this round of chemo as well as the previous two. She is noticeably more tired and moody. We think that she is also really starting to miss going out and socialising. We are definitely not looking forward to 8 weeks (at least) in isolation for the bone marrow transplant!

Monday, 6 November
I was able to go to work for part of the day. Kirsty was due to fly to Queensland for her Grandmother’s funeral on Tuesday, leaving me to look after both girls. This should have been okay, so long as Olivia was well. As fate would have it, she started passing blood again and I had to take her to hospital after dinner. She was also still complaining of stomach aches just prior to going to the toilet. The plan was to take Olivia to hospital that evening and return home either later that evening or very early the next morning. However, previous experience with hospitals had taught us that this would be difficult to accomplish. As usual, Olivia was initially keen to go to hospital. I think that she just likes going out late at night, watching the Wiggles on the "Purple TV" (Starlight entertainment system) and eating late night cheese on toast and ice cream. She had another bleeding nose whilst in hospital. As it turned out, she needed another platelet transfusion.

Tuesday, 7 November
We were unable to leave hospital during the night as planned, as the doctors wanted to take some early morning blood samples. Luckily, my (James’) Dad was able to sit with Olivia whilst I rushed home to pick up Sarah, so Kirsty could go to Queensland for the day. As expected, "Daddy’s Girl" was initially a bit upset, though eventually came around and seemed to be having fun with "Papa" when I returned. Olivia was generally feeling pretty good, albeit a little tired. I continually stressed to the nurses and doctors that Olivia seemed fine and that I was not keen to stay in hospital with Sarah any longer than necessary. I was told that it was very important that the doctors review Olivia before she was discharged. Despite being continually assured that the doctors would be there soon, it was after 2pm before the doctors gave her a 2 minute inspection. This threw out both the girls daytime sleep routines. Consequently, I spent a lot of time back home cuddling Sarah, trying to get her to sleep.
Kirsty here. I went off to Queensland today for my Grandma’s funeral. Life was a bit of a juggling act this morning with James and Olivia in hospital and Sarah and I at home. Dad and Bec came round early to give me a hand before we left for the airport. Once in Brisbane we met up with my brother, Andrew, and headed off for my auntie’s place near Ipswich where Mum was staying. Grandma’s funeral was small but it was exactly how I think she would have wanted it. Along with my Mum, auntie and cousin, I said a few words about Grandma. It was very difficult and I sobbed the whole way through. As most funerals are, it was very emotional. My Grandma was so wonderful to all of us. She always had so much time for us and was so full of love. She was very fond of Olivia and Sarah. Fortunately, we were able to travel to Queensland in May, when Grandma was able to see Olivia again and meet Sarah for the first time. She also loved receiving photos of the girls. When Olivia was born, she was all Grandma could talk about. In fact, Olivia’s first smiles were for Grandma. I like to think that perhaps she is Olivia’s guardian angel – watching over and helping her to get through her battle with cancer.

Wednesday, 8 November
Sarah started crawling today, at exactly nine months old. She has been trying to for a couple of weeks and was managing to get around fairly well. However, today, she actually crawled from the bathroom to Olivia’s bedroom and then the length of the hallway. She has been such a happy girl recently, a marked change from when her routine was disturbed when she first came to Sydney with us. Although Sarah’s sleeping habits have significantly improved she is still waking up twice a night. She usually only needs a quick cuddle and then settles back down. However, she has been waking quite early for a bottle, from anytime between 4 and 5.30am. Luckily, she usually goes back to sleep. All of this, as well as our continually disrupted sleep when in hospital, James and I seem to be fairly exhausted most of the time.
Thankfully, Olivia is a lot happier and loves both Mummy and Daddy (at the moment).

Thursday 9 November
We were told by Olivia’s oncologist that she is concerned about Olivia’s continually low platelet count. She needs to have another blood test tomorrow. If her platelet count does not improve, she may not be able to start her chemo as scheduled on Monday. We desperately hope that this does not eventuate, as among other things, it means that she may not be sufficiently recovered from her next chemo cycle to go to the Wiggles concert.
Olivia’s behaviour has improved tremendously over the past few days. She is not only happier but much more active – a huge contrast to last week when all she wanted to do was lie around in bed. This has made us realise just how much the last round of chemo has affected her. She was pretty sick. Olivia is still complaining about tummy pains but we have been told that all we can really do is give her Panadol. We will be speaking to her doctor about this on Monday.
Today, Olivia was so bright and bubbly – just like her usual self! It was great to see. We went on another picnic to Regatta Point. Mum came along with us this time and James met us in his lunch break. We had chicken and chips and Olivia played on the equipment. She had a ball. On the way home, both girls fell asleep in the car. I think they were exhausted from all the fresh air.