Summary August 2008

Friday, 1st August

Happy Birthday, Mum! What a way to spend your birthday – in hospital! Mum stayed overnight on Thursday. I scrambled around at home to get some things done – there was a lot to do, everything from doing the washing, tidying up, looking after Sarah, packing (again) for hospital to cooking dinner. I was frantic. I was really hoping that the doctors would let Olivia go home today so I waited for a call from Mum to tell me that was the case. Unfortunately, it wasn’t to be. I just wanted to have Oli at home and was becoming increasingly frustrated. She hadn’t had a temperature for days but apparently her doctor wanted to see a documented neutrophil count before she would let her go home. I was also confused as, during a previous stay in hospital, another oncologist from Sydney let Olivia go home regardless of her neutrophil count. There seems to be some inconsistencies among the doctors from Sydney. I guess some doctors are overcautious whilst others are more relaxed. I should also point out that the Canberra doctors always consult the Sydney doctors before treating Olivia. So whatever the Sydney doctors say is generally how it goes!
I was feeling quite overwhelmed today with the news of Olivia having to remain in hospital and with everything that had to be done at home. I really felt as though I was falling to pieces and quite a few tears and emotions surfaced. I managed to finally get to hospital by mid-afternoon with a chocolate mud cake for Mum’s birthday. Olivia was thrilled as she had been so excited about celebrating her grandma’s birthday and having chocolate cake. Sarah was equally excited about the cake (she has a real sweet tooth).
After a brief celebration of Mum’s birthday, she went home and Olivia had a special visitor, her little friend Jessica and her mum, Sarah stopped by. Olivia was thrilled.
Today was the first day of construction of the fairy garden. It was expected that the whole garden would be completed by the end of the weekend. The anticipated completion time was three o’clock Sunday when all would be revealed to Olivia.
GHD were hoping to complete the earthworks today so that they could start putting down the pavers first thing Saturday when most of their people were arriving. Unfortunately, it rained quite heavily and created a bit of a mud pit.

Saturday, 2nd August

We were amazed at how many people turned up to help over the weekend and how organised they were. We knew that it would be a massive challenge to finish all the planned work over the weekend.
The Gungahlin Lions Club provided lunch on Saturday and the Hall Rotary Club on Sunday. James and my dad tried to lend a hand wherever possible, but probably spent just as much time talking to everyone. When Olivia and I finally came out of hospital, we went straight to Mum and Dad’s so that the fairy garden would remain a surprise for Olivia. I tried to stay away too, as I was just as excited about seeing the finished product. However, I did drop round a few times but felt completely useless as everyone was incredibly busy and all I did was stand around and chat to various people. And what a lovely bunch of people they were. Everyone there was so keen to help out our family and make a little girl’s dream come true. Nothing was too much trouble and they were more than happy to be there, giving up their own time with their families and friends. We were so incredibly touched.

Sunday, 3nd August

Come Sunday, it seemed that everyone really had their work cut out for themselves. I think that the sprinkler system caused them a few headaches, as it had for James over the years. It certainly was a mad rush in the end, but they did it. They didn’t quite finish the job at the expected time, but nonetheless, it was completed by the end of the day. I think that even the Mix106.3 people and other observers ended up lending a hand.
At around 6pm, we brought the girls home and did a big unveiling of our new fairy garden. It was simply beautiful. Olivia was so surprised when we opened the rear curtains to reveal this new garden and a yard full of cheering people. She was actually quite shy, which is a bit unusual for her, but not surprising, given the attention she was receiving. She was more at ease once she realised that some of her preschool friends were there.  A large area had been paved outside our back door which continued through to a figure ‘8’, creating a path that winds through the fairy garden outside Olivia’s window. They installed a beautiful bridge over a dry creek bed, a fairy fountain, a wishing well, lots of beautiful new plants and of course, lots of fairies.   They also transformed our underutilized gazebo into a fairy gazebo, complete with blackboards, decorated name panels, fun filled drawers, kids sofas, lots of hanging ornaments, and a guinea pig hutch with two guinea pigs (‘Prince Edward’ and ‘Boots the Monkey’).
We simply can’t thank everyone enough for contributing to this amazing transformation.  We simply love it. The girls now can’t wait to go outside and play. They love riding their bikes around the path. As expected of kids their age, they seem to be drawn to the fairy fountain and can’t help but play with the pebbles and water. They also really love the guinea pigs. Sarah is definitely the biggest animal lover out of the two girls. Olivia likes to feed and pat them but quickly moves onto something else. Having said that, feeding the guinea pigs is always one of the first things that Olivia wants to do when she gets out of hospital.  Sarah is always talking about feeding the guinea pigs and just giggles non-stop when she is playing with them.
A big thank you goes to GHD and Mix106.3 for their commitment and amazing efforts in creating such a beautiful sanctuary for Olivia and our family. It is so very special and we look forward to spending a lot of time in the fairy garden with our beautiful girls. We also have to pass on our heartfelt thanks to all of the local Canberra businesses who donated their time and/or supplies to the project. We will be forever grateful for everyone’s kindness and generosity.
I should also point out that there was another big surprise for Olivia today. A lovely gentleman by the name of Alan Burrough and his son-in-law travelled all the way from Newcastle to personally deliver an exquisite rocking horse that he had handcrafted himself. It takes him about seven months to make one – a real labour of love. It is just beautiful! It is a dapple grey colour with a blonde mane. It also came with a blanket, saddle, stirrups and bridle – all made by Alan. Both Olivia and Sarah love it. Alan also engraved a special brass plate with the girls’ names on it for us to attach to the horse. Olivia named her ‘Rainbow Girl’. Alan had seen our 60 Minutes story and was so moved by Olivia’s plight that he really wanted to give her the rocking horse. He was such a lovely man and I was moved to tears by his generous gesture.

Wednesday, 13th August

We decided to have a bit of a break and head down the south coast for four nights. It has been a long time since we have been down to the coast. The water was pretty cold, so the girls just played in the sand and collected shells. We went for a few walks, bike rides and played at the park. Unfortunately, I had been suffering from a bad cough for weeks now and was hardly getting any sleep at night. James somehow did his back in and any movement in the wrong direction had him in absolute agony. Sarah spiked a temperature and was complaining of a sore throat for most of the weekend. Strangely enough, it was Olivia who managed to remain well. I was relieved that she didn’t pick up any of our bugs. Never a dull moment in our lives!

Sunday, 17th August

As a result of both Sarah and myself being unwell, James and Olivia had to go to Sydney without us. It was too risky for us to be around RMH and the cancer wards. Even if I was well, I would’ve had to stay behind to care for Sarah. The poor little girl was feeling so miserable. I was so disappointed that I couldn’t go to Sydney as I just want to be with Olivia every step of the way through this treatment. I can’t stand to be away from her. Sarah and I stayed on at the coast for another day. Unfortunately, Sarah remained unwell with high temperatures so I took her to Moruya Hospital. As it turned out, she had tonsillitis and the doctor suggested that she might have glandular fever because of the rash she had on her neck. The doctor gave her a course of antibiotics.
On returning to Canberra, I took Sarah to our local GP as she was still unwell. He diagnosed the same illness but prescribed more effective antibiotics. Fortunately, she improved over the coming days. It was really wonderful to be able to spend some quality time with Sarah, however, I missed Olivia terribly. Whilst in Sydney, Olivia also had radiation on her leg and I really wanted to be around for that. Nevertheless, I knew James would take great care of her.
James Here.
It was a long drive up to Sydney from the coast, though Olivia handled it quite well – DVD’s are such a blessing on these trips. I stopped along the way to buy Olivia the “Spiderwick Chronicles” DVD, which I thought might be a bit scary for a 4 year old, but she loved it. Along the way, we also stopped near Wollongong to watch a beautiful moonrise over the water at Stanwell Heights.  After a trip of around 5 hours, not helped by roadworks, we both had a bit of a late night.

Monday, 18th August

We had a fairly early start every morning this week. After getting up a bit earlier than usual on Monday, Olivia was particularly tired. Initially she seemed okay, but then she started to really miss her mum and little sister very much. It was very heartbreaking to hear her say that she didn’t want to be in hospital any more – she just wanted to go home. She was being very whingy, with a lot of tears.  I was initially worried that she had caught something from Sarah.

This week was the commencement of Olivia’s radiation. Although the actual procedure was only about 10 minutes, we were generally there for around half an hour. Each morning, we had to rush over to the day stay ward, get Olivia hooked up with her hydrating fluids and then walk her and her pole over to radiation on the other side of the hospital. We actually got caught out the first day, when the lift refused to go up and we couldn’t take her pole up the stairs.
Oli lay perfectly still during radiation – she really is so mature and does exactly what the technicians tell her to do. When they set her up for radiation each morning, they need to be sure that they have her positioned in exactly the right spot. They have a mould, use a clear template (marked up overhead transparency) and then even use an x-ray to check that they are in the correct spot, to the nearest millimetre. This is very important, as her tumour is just above the growth plate. Whilst the high dose of radiation that she is receiving is likely to effect the growth of her femur bone, it would be a lot worse if it was on the growth plate (top or bottom part of the bone.)   Obviously, this is only one of numerous likely long term side effects of the treatment, though we will happily deal with any side effects when our miracle does eventuate and we are able to cure her of this dreadful disease!
Kirsty and I had originally thought that the tumour was actually on her knee, though we found out during the radiation planning that it is actually in the femur bone, just above her knee. Coincidently, she had a freckle, marking exactly where the tumor is located.
The staff in radiation are always so friendly, which makes the whole ordeal that much easier for all of us. They even made up a special sticker chart with butterflies on it, so she could track her 5 days of radiation.

Tuesday, 19th August

Today was a pretty rough day for both Olivia and I. Olivia just kept complaining of being in pain and cried a lot. In hindsight, she was probably just seeking attention, as she was missing her mum and sister.   I was initially thankful that we were in the isolation room, however later realized that the lack of interaction was contributing to Olivia’s unhappiness. She was really looking forward to a visit from a young lady also called “Kirsty” who is an amazing artist. She comes in every Tuesday to do drawings with the kids. Unfortunately, she didn’t show up as promised. I suspect that she either got held up painting windows in the transplant wards, or simply wasn’t allowed to see Olivia in the isolation room. Being stuck in this small room together all day certainly gets to a person after a while.   
Given that both Kirsty and Sarah were unwell, we were looking for any symptoms of Olivia getting sick. I think that she was aware of this and started to bitterly complain of great pain in her mouth and later in her ears. Initially I thought that she might be coming down with glandular fever, which Sarah may have. All the doctors could see was some slight rawness in her gums. Luckily, we were booked in to see her ENT specialist that afternoon. She wouldn’t stop crying in the waiting room, which drew a lot more attention than just her lack of hair usually does. However, the fantastic ENT specialist seemed to be able to calm her down, and she was fine from then on. He noted that other than the usual build up of wax in one ear, her ears, throat and glands appeared to be fine.

Wednesday, 20th August

Olivia had a much better day today, though had a little vomit at night after the nurses forgot to give her anti-nausea tablets. The tablets are obviously quite effective, as she otherwise normally feels okay. I should have known that something wasn’t right, as she kept complaining about the stinky cooking smells coming from the kitchen at RMH. Whilst not quite Gordan Ramsey’s finest, I didn’t think that the meals smelt that bad. Luckily, the tablets work fairly quickly and she was feeling fine by bed time.

Oli was getting more tired as the week went on, as we had early starts every morning and it is always hard to get her off to bed early at RMH, when there are other kids still running around. She also doesn’t seem to ever sleep in hospital during the day.

We were both relieved to arrive back home at dinner time on Friday. Sarah even waited for Olivia to arrive, so they could have a bath together.

Monday, 25th August

Kirsty Here.
It was great to have Oli and James home on Friday night. Although last week was a wonderful time for Sarah and I to enjoy together (mind you, she was sick for most of it), I missed Oli and James terribly. It just doesn’t feel right when part of our family is missing. We’ve come so accustomed to being together all of the time, it feels strange when one (or two) of us is absent. I really love being with Oli and it was very difficult being away from her last week, especially whilst she went through her treatment.
We just received news of the passing of another beautiful child, Kahlilla (who is from Phillip Island). She had been battling a relapse of neuroblastoma since April last year and finally succumbed to the disease yesterday. We were deeply saddened to hear this news as we had come to know Lilla through her blog ( and we had made contact with her father on a few occasions to discuss treatment options. Kahlilla was another unbelievably strong, courageous and beautiful little five year old girl. We wish Kahlilla’s family the strength they need to help them get through this incredibly difficult time.
Olivia briefly went to preschool this morning to participate in a school program Dance Kids. She was, as usual, very keen to go so I was keen to send her but only for the dancing as I could see that she was beginning to slow down after her treatment. She looked very pale and was a little tired. I knew that it wouldn’t be long before we’d be back at Canberra Hospital for our usual post chemo stay.
Strangely enough, on arriving at preschool, it was Sarah who didn’t seem to cope very well. She spent most of the time complaining, crying and screaming because, I think, she was tired. Although it’s often difficult to tell with Sarah what is wrong with her because she has a tendency to cry or scream rather than communicate what the problem is. She has a very short fuse and becomes very easily frustrated. I guess this is who she is but at the same time, I have no doubt that what we’re going through has largely contributed to her unsettled behaviour. Sarah was only six months old when Olivia was initially diagnosed so this is all she has known for most of her short life. She has had to cope with ongoing hospital visits and stays, travelling back and forth to Sydney, the extra attention we have had to give Olivia, and at times, leaving her with Mum and Dad. Unfortunately, she has also witnessed the impact this situation has had on James and I, not to mention Olivia. Sarah is a very sensitive little girl and very easily picks up on the stress and emotions we are feeling so it’s not surprising that she is reacting this way. She’s crying out for attention. Although we sympathise with her and try to reassure and comfort her, it can be incredibly frustrating and draining for James and I, particularly when we are going through difficult times with Olivia. However, I do worry about the impact all of this is having on Sarah. She is very close to her sister and I know that should anything happen to Olivia, I’m not sure how she would cope.
Having said all of the above, Sarah is absolutely adorable. She is a real little character and says and does the funniest things. She is also helping all of us get through this tragic situation and can bring smiles to our faces when we really need it.
As it turns out, Olivia didn’t even make it through the Dance Kids program at preschool. She somehow hurt her knee and that was it. She was inconsolable. Luckily, I was there watching the dancing so I immediately took the girls home.
By evening, Olivia had become very tired and was complaining of a sore throat. We gave her some medicine, hoping that this would help. Unfortunately, she awoke on and off, screaming out in pain. Her throat still seemed to be hurting though this didn’t seem to be an ordinary sore throat because she was in agony. I was beginning to wonder if she’d picked up tonsillitis from Sarah. We had a look in her throat and couldn’t see any redness. I checked her temperature which seemed to be coming up. Depending on which thermometer I used it varied from 37.9 to 38.3. When you’re on chemo, if your temperature rises above 38 degrees, it means an immediate trip to the hospital. I called the Canberra Hospital paediatric registrar who suggested I take it again an hour later.   Sure enough, it remained above 38. We packed Olivia’s things and James took her to the hospital at around 1am!
The doctors checked Olivia out. They couldn’t find anything wrong with her throat but she seemed to have a very slight ear infection. She was immediately started on intravenous antibiotics and was also given transfusions of packed cells (red blood) and platelets. By the time the doctors had finished all their test and got her antibiotics running, it was almost 3am before we got to sleep.
Olivia seemed much brighter the next day, though was obviously pretty tired.
All up we spent seven nights in Canberra Hospital! Our longest stint in TCH ever! Mum helped us out by also staying for a couple of nights – thanks, Mum. Several blood transfusions later and after regular infusions of antibiotics (for the whole time spent in hospital), it was wonderful to go home finally.
At one point (after about 4 nights), the doctors were considering sending Olivia home, when suddenly she spiked another temperature which persisted for more than a day. She was then required to stay for at least another 48 hours after the last high temperature. I was so disappointed as I just wanted Olivia to be at home. For most of the week, she was really well within herself but unfortunately, we have to follow hospital protocol and of course, ultimately, do what’s best for Olivia.

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