Tuesday, 2nd September

 
Olivia was well enough to go to preschool today. She gets so excited when we tell her that she can go. Her lovely teacher, Jenny, had planned a little fundraiser with the children. They had cupcakes for the children to ice and decorate. The children were able to have a cupcake in exchange for a gold coin donation which would go towards neuroblastoma research. We are so lucky to be surrounded by such a supportive preschool community. Thanks, Jenny. I should also point out that a couple of wonderful preschool mums and friends, Sarah and Deb, have taken upon themselves to sell chocolates through the preschool to raise money for our family. We have been so touched by this gesture. In fact, Sarah and Deb have also gone out of their way to organise donations for another big fundraising event we are having shortly – The Olivia Lambert Appeal Race Day. Thanks, girls!
 
We are committed to raising public awareness of neuroblastoma and hope to raise as much money as we can so that these beautiful children, like Olivia, and their families no longer have to suffer. We established ‘The Olivia Lambert Appeal’ to generate funds for this great cause and it is our intention to establish a charitable foundation in the near future.  We have already raised over $30,000 for the Sydney Children’s Hospital through our everyday hero webpage.
 
Our next planned fundraiser, the Olivia Lambert Appeal Race Day is being held on October 4 at Thoroughbred Park in Canberra. It is being coordinated by one of James’ old school friends, Bec Sipeki. She was very keen to organise a big fundraising event to help raise money for our appeal. Some funds raised on the day will go towards supporting our family and Olivia’s ongoing medical expenses. Details of the event can be found on the link on our website.
 
Bec is doing a fantastic job in organising the event with the help of a small committee of family and friends, including her husband, Chris, my dad, Dick, Ilona Fraser, Sarah Hyland and Deborah Layt. We have also had a lot of support from the staff at Thoroughbred Park and from various Canberra businesses who have donated either their time and/or supplies to the event to assist us with maximizing the funds raised. There are six major sponsors of the races for that day who are also lending their support. They are Canberra Milk, Olims Hotel, Supabarn Supermarkets, CanberraBride.com.au, Dellavedova Accountants and Blackshaws Real Estate. A huge thank you goes to everyone involved for their support, dedication and kindness. We know the day will be a wonderful success. 
 
James and I have played a small role in the organization of the event as we have chosen to take a step back from all of the fundraising to just focus on Olivia. Sometimes I find I can’t help myself and seem to get a great deal of satisfaction from organising things, particularly when I know that any generated funds are going to a cause so close to my heart. I am extraordinarily passionate about this and I am feeling so driven to make a difference to neuroblastoma research and to raise awareness, with, of course, Olivia as my inspiration. I know that research isn’t going to help our girl now but if it means it will help other families in the future then that would be wonderful. Who knows – perhaps the money raised will help researchers find a cure sooner rather than later. This whole situation has made me realize that this is what I have to do – that word has to get out there and funding is desperately needed.
 
The race day was originally going to be in February 09. However, a cancellation at Thoroughbred Park allowed it to be brought forward to 4th October. Little did we realize how hard it would be to organise everything in time. One of the biggest challenges was to secure a guest speaker and/or MC. Obviously, we were hoping to keep the speaker’s fee to a minimum so that we can maximize the funds raised for the hospital. However, I am sure this ruled out many potential speakers as some of them charge astronomical fees. For example, Pat Rafter’s fee to speak is $50 grand! Magda Szubanski charges $33 grand for an appearance. That’s insane. The list goes on! Also, it soon became apparent that most celebrities already have a nominated charity. Vince Sorrenti’s charity is childhood cancer, though he was unavailable. Sonia Kruger’s agent indicated that she was very interested, though could not commit until after she returned from the Olympics and had finalized her Dancing with the Stars schedule.   Unfortunately, time seemed to drag on forever without any confirmation, despite numerous phone calls to her agent. In the meantime, we had expressions of interest from Michael Milton and Julian Huxley (from the Brumbies). Michael was also not able to commit until after he returned from the Para Olympics.   Regardless, we didn’t have confirmation from any potential speakers and invitations had to be sent out without mention of a guest speaker.   Time was no longer on our side and we had to get down to the business of selling tables for the event.
 
We finally had word that Sonia was unable to attend due to her conflicting schedule, which was extremely disappointing, as it meant that we had to urgently secure a guest speaker. Thankfully, it was only a matter of days before we had a call from the same agent to say that Catriona Rowntree would be available and was happy to donate her time to the event. We were all thrilled! The next challenge was to get word out and sell tables. We soon realized that 4th October falls right in the middle of school holidays and it is also a long weekend. Personally, I know several people leaving town that weekend so we might have a difficult task on our hands.
 

 Wednesday, 3rd September

 
A few weeks ago, Olivia told us that she wanted to go back to Queensland. She desperately wanted to go swimming, to the beach and the theme parks. We thought that this was a fabulous idea. Those little girls really deserved a wonderful holiday.
 
It was decided that we would take the girls on a holiday in between Olivia’s chemo cycles. We figured that there would be about a week and a half to two weeks in between when she would be feeling reasonably well. We also thought it would be great to give her a break from the monotony of ongoing hospital visits and give her a fun and thoroughly enjoyable holiday (besides, I think we all need some time away together to try and somewhat forget about what we’re going through).
 
We booked a holiday to the Gold Coast for six nights and four nights in Port Douglas, where my brother and his family live. Thanks again to our wonderful social worker at Canberra Hospital, Ann Cina, for organising complimentary family passes to Movie World, Sea World and Dreamworld.
 
When we arrived at the Gold Coast, the weather wasn’t what we had hoped for at all. It was extremely windy, so much so that James’ sunnies blew straight off his face and he had to chase them down the driveway. We stayed at some apartments at Broadbeach called Carmel by the Sea. We had a huge 16th floor beachfront apartment with great views up and down the coastline.  However, we couldn’t even open the balcony doors due to the extreme winds. Unfortunately, the wind storm soon turned into a thunder storm. Luckily, we booked an apartment with a heated indoor pool. The girls could barely contain their excitement at the prospect of going to the pool, as it had been a long time since they had been for a swim.
 

Thursday, 4th September

 
James here again.
 
We were scheduled to go to Movie World on Thursday, but decided to push it back to Friday in hope of better weather. We instead spent much of Thursday shopping – our luggage was certainly a lot heavier on the flight back home! We also went to the pool again before dinner.
 
Friday, 5th September
 
Movie World was pretty good. There was intermittent rain, though we still managed to do most of the rides. Oli still loves the Shrek 4D Movie, particularly the dragon sprayed snot on her leg! And Sarah is still really terrified of it, though still feels compelled to watch. Oli was as keen as ever to go on the kids roller coaster. Sarah was also able to enjoy most of the rides in the kiddy area.  James and I still managed to get a turn each on the Superman rollercoaster – definitely one of the best rides of all the theme parks.
 
We bought some ice creams and sat down to watch the afternoon character parade. Tweety came over to Oli and gave her an ice cream, which we gave away to another child. Mind you, I felt very tempted to eat a second ice-cream but I remembered how bad I felt when I did it last time when Tweety gave Sarah a second ice-cream!
 
James’ brother Phil and Mel, Sam and baby Millie came down from Brisbane on Friday Night. We all went out for dinner at a local Italian restaurant. Coincidently, Fairy Sparkle was also on the Gold Coast and kindly offered to drop in during dinner for a surprise visit. Olivia was quite excited, as always, to see her.
 

Saturday, 6th September

 
We went to SeaWorld with Phil and family. They have quite a good kids’ area, though Olivia and Sarah ultimately wanted to keep going on the flume ride.    Olivia had been talking for weeks about going on the Pirate Ship, which we both knew would even be testing for us after a few goes.   As it turned out, Oli didn’t last long at all in her first ride before she started to feel sick. We can only assume that the chemo has upset her stomach somewhat.
 
In the evening, Kirsty’s Uncle Bob and Auntie Shell came down from Brisbane to join us for dinner. Both girls were pretty worn out after a couple of big days, so we decided that it would be more relaxing and quicker to eat in our apartment. Bob and I headed out to get some Thai takeaway and some chicken breasts to cook up for the girl’s dinner. As it turned out, we didn’t know that the supermarkets close at 6pm on a Saturday in QLD! Having tried 4 different supermarkets, we returned 1 ½ hrs later with Red Rooster for the girls and some very overpriced takeaway fish and chips for the adults.

 

 

Sunday, 7th September
 
We had a great Father’s Day. Having gone home yesterday, Phil and family decided to come back down to the Gold Coast again for lunch. We were also joined by my sister Romy and her family. The kids had a bit of a play at the great park across the road from out apartment, before heading down to the local surf club for lunch.
We had a nice lunch out on the balcony of the surf club, and later walked down to the beach where the cousins played for a few hours in the beautiful sunshine.
 

Monday, 8th September

 
We went to Dreamworld today. Oli went on a kids’ roller coaster several times, though after her experience with the Pirate Ship, she wasn’t going anywhere near the Reef Diver (which spins around very fast and goes upside down), an old favourite of hers.  Sarah was very excited to see Dora, her favourite character. However, after getting her photo taken, she went up to Dora’s minder and said “Where’s Boots (the Monkey)?”. After a bit of pause the man replied that Boots is up in the trees. Sarah and Oli also had photos taken with some Wiggles characters. I couldn’t resist going on The Giant Drop, which is one of my favourite rides.
 

Tuesday, 9th September

 
Our stay at the Gold Coast seemed to come to an end pretty quickly, partly due to the time lost to bad weather. It was a shame that we only made it to the beach once.
We left our hotel about 2 hours before our scheduled flight to Port Douglas. Unfortunately, there was a big pile-up on the freeway, with no alternative routes. We called Virgin Blue, only to be advised that if we missed our flight, we would forfeit our tickets and would have to purchase full price tickets for another flight! As you can imagine, Kirsty and I were getting pretty stressed about missing our flights. Sarah added to the tension by being very whingy in the back seat. Catriona Rowntree called while we were on the road, to discuss the race day. It was a bit of an awkward call, with us stressing and Sarah screaming in the background.
 
We eventually made it to the airport, though only got to the counter 15 minutes before our flight was due to leave. Unfortunately, they would not let us on the plane so we had to make new arrangements. We queued for a while at the service desk.  Luckily, just as it was our turn, head office called the desk to tell them to waive any penalties for customers affected by the pile up. We managed to get on a flight 2 ½ hours later. Much to the amusement of all the passengers on our flight, Sarah had a massive tantrum just as we were about to board our flight. She was pretty good on the flight and was actually singing and smiling when we arrived at the other end. One of the passengers who was disembarking with us asked whether she was the same girl having a tantrum at Brisbane Airport?
 
Port Douglas is certainly a beautiful place though we had quite a bit of rain. As always seems to be the case for us, we were told that the previous week had seen beautiful weather. Not long after we arrived, we received a phone call from the hospital asking where we were as Oli was booked in to have a scan today!  They were a bit surprised when we told them where we were and that the scans were supposed to be scheduled for next week.  Olivia’s chemo was originally meant to be a three week cycle, however, when her blood counts didn’t recover in time, it became four weekly. This has continued throughout her treatment. We can only assume that Olivia’s doctor had either forgotten this or miscalculated the date. Both scans and chemo had been booked for this week.   At over $1000 a pop for the MIBG scan, it was a very expensive mistake.
 
It was good to see Kirsty’s brother Andrew, and his partner Julianna and their 16 month old daughter Leah. The last time we saw Leah, she was almost crawling and now she was running around.
 

Wednesday, 10th September

 
We went down the beach in the morning, followed by a swim in the resort’s pool. The girls had a ball! The girls then needed to have a sleep as they were both pretty tired. We all went out for dinner with Andrew and Juliana.
 

Thursday, 11th September

 
Kirsty here.
 
It bucketed down with rain today. We met Andrew and his family at a nearby animal enclosure for breakfast with the birds. We then headed back to Andrew’s while James and the girls had a quick dip in Andrew’s pool. There was no way I was going in – it was cold and still bucketing down with rain. There wasn’t much we could do today given the weather was so poor. We took the girls back to our apartment in the afternoon for a sleep. We again went out to dinner with Andrew and Juliana.
 

Friday, 12th September

 
I spoke to Olivia’s oncologist this morning regarding the MIBG scan. I was very disappointed that it couldn’t be organized prior to Olivia’s next chemo treatment as it would tell us about her progress and whether or not the chemo would be of any benefit to her. I was extremely frustrated that the scan was booked for the wrong date and felt that her doctor was quite flippant about the whole situation (or maybe I was a little oversensitive as I was fairly annoyed about the whole thing). On the one hand, I realize that doctors do make mistakes, after all they’re only human, but we are in a very dire situation and we are dealing with Olivia’s life and her health. Also, if Olivia was to have an MIBG scan next week, she needed to begin taking Lugol’s Iodine immediately (it protects the thyroid from the radiation) so we really needed to know.  Unfortunately, as it turns out,there are only limited supplies of the radioactive MIBG available in Australia, and they were not able to get any for next week when we will be in Sydney for chemo.   This means that we will have to make a special trip the following week for Oli’s MIBG scan. Our family suffers enough anxiety from all of the uncertainty and these delays certainly don’t help. I also get sick and tired of having to chase up the doctors all the time, particularly regarding important issues. Rarely do they call you when they say they will and in the meantime, James and I anxiously wait around wondering what’s going on. Arggh!!!!!
 
Andrew and Julianna kindly organised a catamaran trip to Low Isles for us. The weather was looking a little ominous in the morning and we were a little worried we could be in for a wet ride. Once on the boat, it was a little chilly and there was some rain but this was short-lived and before we knew it, the sun had come out – it turned into a perfect day. It was a beautiful trip. We first went out in the glass bottom boat and saw plenty of fish and a turtle, although, the morning rain had made the water a little murky. Afterwards, we were shuttled to the island in a little boat. Oli was very keen to try her hand at snorkeling so she immediately headed out to the deeper water with James. She was equipped with her snorkeling gear and floaties. She is becoming a reasonably competent swimmer, given that she hasn’t had many swimming lessons, but still needs the help of floaties. Olivia did really well, considering that even the smallest goggles almost covered her mouth and the snorkel was clearly too big. On returning to the shore, she was most excited to tell me about all of the fish and coral she had seen. She’s amazing, she’ll give anything a try. Sarah was quite happy to play with the sand and splash about at the water’s edge.
 
When we arrived on the island, we soon realised that we had left Sarah’s swimming nappy on the boat.  We asked her if she would be okay without a nappy and she convinced us she would. Of course, it wasn’t long before she soiled her swimmers in a big way. It took some very discreet action to clean that one up, particularly since the island didn’t have any facilities.   There was nowhere to hide.
 
We had an absolutely wonderful day and it was sad to leave. The trip back to Port Douglas was beautiful. We sat at the front of the catamaran, basking in the sun, while the girls fell asleep on our laps. It was bliss.
 
This was also the last day of our holiday as we had to return to Canberra the next day. The last day of holidays always leaves me feeling a bit flat, knowing that we had to get back to reality, that being another trip to Sydney and more chemo for Oli.
 
We had a brilliant holiday, regardless of the weather in Port Douglas. James gets a little frustrated with me as I’m always telling him about my grand plan for the next holiday before the current one ends. I can’t help myself. I need that escape. We all do.
 

Saturday, 13th September

 
We spent much of the day travelling back to Canberra. Although the girls were tired, they managed the trip home very well. I was excited about all of the unpacking and washing and repacking for Sydney I had ahead of me (ha, ha!). Arghh!!! Thanks Mum for picking us up.
 
Sunday, 14th September
 
I attended a Camp Quality Pamper Day at Soma Spa at the Diamante Hotel. It was just wonderful, not to mention relaxing. Thanks to Caroline for doing such an amazing job at organising such a terrific day for all us mums! Meanwhile, there was another race day meeting at our place with the committee. The organization of the day is going very well and everyone is putting their heart and soul into it. However, table sales have been very slow but we are hoping they will pick up in the next week or so.
 

Tuesday, 16th September

 
 No sooner had we unpacked and we were repacking and off to Sydney to commence Oli’s fifth round of chemo. We only had her CT scan today, so we had made an appointment in the afternoon with a doctor who specializes in alternative treatment. We had been given his name by someone who saw our 60 Minutes story and left a message on our answering machine. That person had highly recommended apricot kernels (also called B17 or laetrile), which we had also come across during our search on the internet. There are a lot of stories on the internet about people who claim they have been cured of cancer through using Laetrile. There are also several articles about conspiracy theories relating to the big pharmaceutical companies trying to suppress sales of laetrile so they can continue to make billions from chemo drugs. From our perspective, the main concern is the apparent  lack of clinical trials and possible cyanide poisoning. Whatever the truth, it is so difficult to know what to believe. Laetrile is banned from open sale in Australia and can only be prescribed by a GP in extreme circumstances where traditional medicine is unable to cure a life threatening illness. It is generally imported from Mexico and there are only a handful of doctors who will prescribe it.
 
Also, I would like to point out that we are looking into these options very carefully. More often than not, a lot of these so called cancer cures are promoted by quacks who want to take all of your money and run. We are very wary of this. Although we are desperate and vulnerable, we are not gullible (at least, we think we’re not!) and not going to get sucked into trying weird alternative ‘miracle cures’.
 
Though we are somewhat skeptical, we are fast running out of options with ‘modern’ medicine. Mind you, we are very open to trying traditional medicines, eg. Homeopathy, etc. It certainly can’t harm. The way I look at it is there has to be some wonderful benefits in traditional medicine as it’s been around for over 5000 years while modern medicine has only been around for 200 years.
 
In the afternoon, we headed off to see the ‘alternative medicine’ doctor who is, in fact, a GP. I’m generally pretty open minded about these sorts of things but I was feeling a little apprehensive about the whole appointment. We thought that we would at least see what the doctor had to say. The initial appointment cost us $240! On meeting the doctor, my feelings of skepticism surfaced in a big way!   I found it extremely difficult to take this doctor seriously, he was quite a strange character, in appearance and behaviour.   He reminded us both of Dr Nick Riviera, the dodgy doctor from the Simpsons. He was also wearing a longish toupee which he continued to fiddle with during the appointment. He was clearly self-conscious about his appearance. The girls thought he was wearing a Beatles wig like the Wiggles wear in one of their DVD’s. Anyway, the doctor offered us a staged approach to treatment with B17.  The first stage involved prescribing a lot of supplements to the tune of around $500. The next stage involves a Lis Ten test that is an unorthodox way of checking the body for any problems, using electronic finger probes. Finally, there is the prescription of Laetrile which comes from Mexico. The doctor indicated that he will complete the paperwork, order the laetrile and have us pick it up from Customs. The icing on the cake was when, at the conclusion of the appointment, the doctor told us that it is only a matter of time before the authorities shut him down so we’d better get in quickly. Boy, did the alarm bells go off in my head!! How dodgy is this doctor?! 
 
It is so hard to know what to do. We know that the reality of the situation is that we need a plan of action for when Olivia finishes chemo. We need to be prepared to do whatever we can to keep Olivia as healthy as can be. We are still considering the laetrile, though we need to do more research first. Is it possible that Olivia’s oncologist will put her back on the cis-retinoic acid tablets again, which is a vitamin A derivative that is suppose to mature neuroblastoma cells to a benign form. It is doubtful that this will be of much benefit as it appears Olivia’s disease has already resisted this drug, given she was on it for 11 months after her previous treatment. It’s worth a try I guess. Coincidentally, Olivia relapsed a couple of months after coming off these tablets.
 

Wednesday, 17th September

 
We were told today that Olivia’s CT scan results were normal. We were hopeful that this would be the case. We were relieved that her liver was clear as her last MIBG scan revealed some uptake in that area. Although CT results were good, we were more anxious about the upcoming MIBG scan as it is the more telling scan. We will be making a special trip to Sydney next week for that one.
 
Olivia commenced chemo today as her oncologist felt that the CT results were somewhat reassuring. My mum had stayed up very late the night before last cooking us organic meals to take away with us. Thanks again Mum. She’s always looking after us. However, as it turned out, there was a meal on at Ronald McDonald House almost every night this week. There will certainly be many more occasions when we will need Mum’s meals.
 
There was a magician at dinner tonight. Olivia and Sarah were in stitches. Olivia even got the opportunity to assist him. James had his face buried in a newspaper. The magician even jokingly made reference to James and we all had a laugh. James was completely oblivious – he must’ve been reading something good.
 

Friday, 19th September

 
James headed up to hospital with Olivia this morning, while I headed up later with Sarah, ready to meet my sister, Bec or Auntie B as the girls refer to her. She was arriving early this morning from London.
 
We met Bec up the road near the hospital. It was so good to see her. It’s been about 15 months! Sarah gave her a big kiss and cuddle. She was just over one year of age when Bec headed overseas again. We then headed up to the hospital to see Oli. Oli was thrilled to see her Auntie B. She has been asking us for months when Auntie B was going to come home. She has missed her so much.  Oli couldn’t stop cuddling Bec and she couldn’t take her eyes off her. It made her day to see her again.
 
Mum and Dad arrived later in the morning.
 
James took Sarah back to RMH for a sleep while Mum, Bec and I headed off to the shops briefly and Dad stayed with Oli.
 
We headed out for a nice meal and catch up that evening.
 

Saturday, 20th September

 
Mum, Dad and Bec headed home early this afternoon after spending some time in the hospital with the girls.
 
We went over to Rosie and Garry’s house for dinner tonight. The girls love to play with Marcus. Later that night, when Olivia was speaking to Fairy Sparkle, she said that we’d just been over at Sarah’s boyfriend’s house. How cute! Marcus is only 3 months younger than Sarah and we sometimes joke about him being Sarah’s boyfriend. Olivia’s obviously picked up on this.
 

Sunday, 21nd September

 
I stayed with Olivia this afternoon while James took Sarah back to RMH for a sleep and packed up the car. Over the past few days, Olivia had been complaining on and off that her portacath was hurting. When the nurses removed the needle from her portacath, she absolutely screamed. Clearly it was very painful for her – poor girl. We then noticed the site was quite red and there was a little pus. It looked like it was infected. One of the doctors prescribed an oral antibiotic.
 
We returned home today. The advantage of travelling on a Sunday is that there is no peak hour traffic, making the trip a little quicker.

 

 

Monday, 22nd September
 
Today went by so quickly. We seemed so busy doing lots of things around the house – mostly unpacking and washing while the girls spent a fair bit of time playing in their fairy garden.
 

Tuesday, 23rd September

 
We picked up the guinea pigs today. Thanks to Olivia’s preschool friend Jessica and her mum Sarah for looking after them while we were away. We had been away for a couple of weeks and they had grown so much. The girls enjoyed having them back home.
 

Wednesday, 24th September

 
Oli and I had appointments with our chiropractor this morning. Afterwards, we met James and Sarah at Floriade. Olivia had been asking us for months when we could go there. While we were there, we saw our friends, Caroline and her daughter Olivia. We call her Big Oli as she is 14 but our Oli thinks she’s great.  The girls were really excited about going on all the rides. They also spent a lot of time in the petting zoo and the art and craft pavillion.  We also managed to have a little picnic. The weather was beautiful. We bought the girls some lovely little additions for their fairy garden from the great little stalls they had there.

 

 

Thursday, September 25
 
Oli had to go for a blood test this morning. Thankfully, they were able to find a vein straight away, as it can sometimes take a while, but as usual, she was incredibly patient. We travelled up to Sydney afterwards for Olivia’s MIBG radiation injection and the scan tomorrow. Needless to say, we were feeling very anxious about this scan. We decided to leave Sarah with Mum, Dad and Bec as they were going down to the coast and we were only going to be away for one night. Sarah was keen to come with us to Sydney until I mentioned that Mum and Dad were going to the coast. She was so excited at the prospect of going to the beach. I asked her what I was going to do without her, she said ‘go to Sydney’ and ‘I’ll come back in a couple of days’. Mum, Dad and Bec were planning on staying in Tuross for two nights.
 
On our way to Sydney, we heard from the outreach nurse that Olivia required a blood transfusion.  When we arrived in Sydney, we headed straight to Nuclear Medicine for a blood test to crossmatch for the transfusion and for Olivia’s MIBG injection. The staff in Nuc Med are so wonderful to us and make such a fuss over Olivia. They always refer to her as their ‘favourite patient’.
 
Shortly after the injection, we had to head up to C2North for Olivia’s transfusion. When the nurse accessed her portacath, she screamed out in pain. It was terrible to watch. The site was still a little red from the low grade infection she had last weekend. Obviously, this was causing the pain. Unfortunately, the pain continued for a while and we had several nurses and a doctor look at it. Nothing was done so we assumed it was nothing to be too concerned about. The transfusion didn’t actually get underway until sometime after six. I don’t know why it took so long. In the meantime, Olivia was transferred to C2West (the inpatient cancer ward). We were lucky because we had a single room so it was nice and quiet. At this stage, it looked as though we would be staying overnight because the transfusion started so late and it usually takes four hours.
 
Olivia fell asleep and one of her oncologists came in for a chat. We didn’t really speak about anything specific, just about neuroblastoma in general, some research, possible treatments, including alternative medicine and we touched on Olivia’s prognosis. Unfortunately, I never come away from these ‘chats’ feeling good and was becoming quite teary by the end of the discussion. It’s extraordinarily difficult to find a positive side to this situation because no matter how you look at it, it is what it is and we can’t do anything to change it. The only thing that remains positive is Olivia’s amazing spirit and strength to fight this disease and that is what keeps us hanging in there. She quite simply keeps us going and we owe it to her to be positive and strong, that’s the very least we can do, given what she is going through. Mind you, if I could, I would swap positions with her in a heartbeat. The hurt I feel watching her go through all of this is beyond anything I can describe. I just want to make all of this go away. I think about Olivia every minute of every day. This whole situation has consumed me as I am constantly somehow trying to make some sense of it all.
 
By about 9.30pm, it was looking like the transfusion was almost finished. Olivia was so tired and ready to go back to sleep. When I told her that there was only about 10 minutes to go, she was keen to sleep back at RMH. So that’s what we did. The less time we spend on the ward, the better.
 

Friday, 26th September

 
James took Olivia up to C2North at 8am for a blood test. Her oncologist didn’t feel that she would require a blood test but I insisted as I felt she would probably require a platelet transfusion today. Her doctor disagreed but suggested we have a blood test if it made me feel more comfortable.
 
It was then time for the MIBG scan. Again, Olivia remained incredibly still for the entire duration of the scan (two hours!) – she’s amazing! We were very anxious during the scan and James and I shed a few tears. There was a doctor who came into the room just after I stepped out to make a phone call. He asked James where Olivia’s previous tumors had been. James took this to meaning that they had found some tumors and were trying to establish whether they were old or new tumors. Needless to say, he was beside himself. It came as a huge relief soon after when we were unofficially told that this was not the case and the cancer in Olivia’s knee was actually gone and that there didn’t appear to be cancer elsewhere! We can only guess that the doctor asked about previous tumor sites so that he could inspect them more closely to possibly determine whether or not the cancer was still present.
 
After the scan, we returned to C2North as Olivia required a platelet transfusion (goes to show the doctors aren’t always right!)  as her platelets were only 7. Her doctor also filled me in on the MIBG results. He showed me the pictures of the scans, which all looked clear to me – beautiful! He did confirm this but pointed out that because the radiologist knew that cancer had previously been in her knee, she said there could be some very low grade uptake there. When I asked him if cancer still remains there, he said he couldn’t say. I thought that he was implying that there were still visual traces of cancer there but later realized what he must have meant is that although it couldn’t be seen on the scan, there could be cancer there and only time will tell. At least, I hope that’s what he meant. Ultimately, he was happy with the result and didn’t try to put the usual negative spin on the whole situation which is what I was expecting. We know what the reality is but we don’t need to be constantly reminded. We’re just going to enjoy the results we have for now. After all, they are the best possible results we could get, given the situation we are in. I guess Olivia is effectively in remission again. However, I’m still very tentative and not ready to jump for joy at the moment because we know that our current circumstances could change anytime soon. The doctors don’t expect Olivia’s remission to last but we will continue to fight this disease with everything we have and try and hold onto this remission for as long as we can. Because she is nearing the end of her treatment, it’s crunch time. James and I have to make some serious decisions about what to do. We just want to keep on top of things – we just don’t want to hear those dreaded words from the doctors again. Although this is going to be an ongoing battle for all of us, we are continuing to believe in miracles because if anyone can win this battle, it’s going to be our beautiful girl.
 
Test results aside, we had to deal with the more immediate problems today and the biggest one being an infection in Olivia’s portacath. Olivia’s temperature had been teetering just below the 38 degree mark today and I was fairly certain, she would have a high temperature by the afternoon. I requested that the nurses leave her accessed (the needle in her portacath) until later in the day so that Olivia wouldn’t have to go through the agony of having her port accessed again. When the nurse asked the doctor, he gave her a stern ‘no’. So they de-accessed Olivia and 20 minutes later she spiked a temperature of 38.3. I couldn’t believe it! They now had to re-access her portacath. I was feeling quite ambivalent about this because it was so sore and it looked like the infection was getting worse. After much discussion with the doctor (who wanted to access her port), Olivia and I told him that we would prefer a canula in her arm to give her portacath time to heal so that is what the nurses did. I wasn’t happy because if they had left the line in earlier, Olivia wouldn’t have to go through all of this again and it would allow the antibiotics to work directly on the infection in her portacath.
 
Olivia cried every time they ran the antibiotics through her canula as they really sting the vein. Because of this, the nurses had to run them through at a slower rate, as well as dilute them so that Olivia was more comfortable. Regardless of this, she continued to cry out in pain, whenever the antibiotics ran through.
 
Olivia was transferred to C2West later in the day – so much for our one night stay in Sydney!
 

Saturday, 27th September

 
I stayed with Olivia last night.
 
Olivia was good overnight except she did wake up once complaining that her portacath was hurting her for which she was given a dose of Panadol. She also had a big bed wet, as they have to administer plenty of fluids.
 
The day was fairly uneventful. Olivia hadn’t had any more temperatures since yesterday and was feeling pretty well within herself. The doctor would’ve sent us back to Canberra today if it wasn’t for her infected portacath. The infection certainly didn’t look like it was getting any better and there is now a real threat that it will have to be removed, which would be a huge setback. Even the doctor was looking concerned but we still needed to give it a couple more days to see if the antibiotics have any effect.
 

Sunday, 28th September

 
James stayed overnight with Olivia. She had another big bed wet.
 
At 8.30am I watched the program State Focus on Channel Ten as we were the show’s first guests. We did the interview with Peta Burton (who was lovely) to raise further awareness of neuroblastoma and to promote The Olivia Lambert Appeal Race Day on October 4. We are hoping to encourage as many people as we can to come along. It will be a fabulous day organised by a wonderful committee of family and friends. We are really looking forward to meeting Catriona Rowntree and Michael Milton. Olivia, too, is very excited and keeps asking how long it is until race day.
 
Olivia’s portacath infection is looking marginally better today. It looks as though the antibiotics are working but it will take a few more days for it to clear up entirely. Fingers crossed. It also looks as though Olivia will need platelets tomorrow as they’re only 14 today.
 
The nurse de-accessed Olivia earlier so we could take her for a walk down to the hospital’s fairy garden. It was such a lovely warm, sunny day and it was great to get some fresh air. Olivia just loves the fairy garden. She is so happy when she goes there. We had the whole garden to ourselves and we were able to enjoy a nice lunch.
 

Monday, 29th September

 
Olivia’s oncologist came to see us this morning. She indicated that her blood cultures from last weekend grew a bug called pseudomonas which is a potentially serious infection if it isn’t treated properly. She ordered blood cultures to be taken from her portacath so they could see if the infection was in her line (not just on the surface of her skin). She informed us that if there was an infection in her portacath, there was a reasonable possibility that it would have to be removed. Naturally, this concerned us as it meant more surgery for Olivia and with another round of chemo to go, plus the treatment Oli would no doubt require after chemo, the portacath is fairly essential.
 
In order to take the blood cultures, the nurses had to access Olivia’s portacath. Again, this was quite a traumatic experience for Olivia. It was still very painful for her which told me that it is most likely still infected. The results would not be available to us for at least another 24 to 48 hours. However, they commenced antibiotics through Olivia’s portacath.
 

Tuesday, 30th September

 
We were intending to return to Canberra today. The news regarding the blood cultures taken from Olivia’s portacath wasn’t good. Her doctor informed us that they grew a bug and that she would require another 7 days of antibiotics which meant another 7 days in hospital as they had to be administered intravenously through Olivia’s portacath. We were so disappointed. We’d already spent 5 nights in hospital and now we had another 7 to go! The prospect of spending so much time in hospital between chemo rounds was just exhausting. Also, we were really looking forward to going home and spending some time doing some fun ‘normal’ things with the girls. The most frustrating thing was that Olivia was actually really well.
 
We made the decision to return home tomorrow.