Wednesday, 1st October

 
I stayed with Olivia last night. I also did a brief radio interview with Mix 106.3 regarding the race day on Saturday. The guys at the station have been fantastic – always more than happy to help out our family whenever they can.
 
We headed back to Canberra this morning after a few delays with the doctors organising Olivia’s treatment in Canberra. Apparently, the antibiotics Olivia is currently having could change once they get the ‘sensitivities’ back from the lab (meaning once they determine which antibiotics the bug is sensitive to).
 
We made it back to Canberra mid-afternoon. It was great to be home. I can’t believe that our one night in Sydney turned into six, but then again, anything can happen in this situation.
 
We picked Sarah up from Mum’s after her little afternoon sleep. It was so good to see her. We really missed her.
 
We had to take Olivia to Canberra Hospital late in the afternoon so that she could have her next round of antibiotics. James stayed with her overnight.
 

Thursday, 2nd October

 
We were lucky that Oli was granted ‘gate’ leave from hospital during the day. Apart from her portacath infection, she was actually really well and her blood counts were pretty good. We didn’t think it would be fair to keep her cooped up in hospital unnecessarily and her antibiotics were given first thing in the morning and evening and one dose in the middle of the night. James brought her home later in the morning after the doctors had seen her but we spent a nice, quiet day at home. The girls just enjoyed playing outside in their fairy garden. It was such a beautiful day!
 
The week was very hectic. We had a lot to do prior to the race day and travelling back and forth to hospital was becoming extremely exhausting. By late afternoon, Olivia had crashed on her bed. I really wanted to have her at home at night, sleeping in her own bed, not in the hospital. She certainly wasn’t getting the rest she needed in the hospital and especially with the very busy routine we had. Unfortunately, I had to wake her to take her back to hospital which was not appreciated at all! Oli cried and cried. She was overwhelmed with tiredness. I felt terrible but there wasn’t much I could do about it. She managed to calm down by the time we reached the hospital but I hadn’t seen her that upset for quite some time.
 
Mum soon came to the hospital to relieve me. She stayed with Olivia overnight so that James and I could have some time at home to get things done. We seem to have an endless list of things to do with less and less time in which to do them. It’s incredibly frustrating. We are truly exhausted. I’m finding it very hard to keep on top of things at the moment and I just feel so incredibly tired all the time. Life just doesn’t seem to stop. In addition to all of this, Olivia is always on my mind. I try to remain positive and hopeful at all times but the worry is constant. I know that I have to stop thinking about the future and stay in the present but I do have moments when I think about what might be. It’s often the gorgeous little things that Olivia says or does that trigger thoughts of what she might be like when she’s older and this is when I find myself overcome with sadness. I just can’t lose that beautiful little girl.
 
Having said all of that, it seems that our brains have a remarkable way of protecting us from the reality of tragic situations like ours. Amazingly, there must be some sort of coping mechanism that kicks in at some point, which allows us to go on and get on with living and dealing with the situation. If our brains didn’t function in this way, who knows where I’d be right now.
 

Saturday, 4th October – The Olivia Lambert Appeal Race Day

 
James stayed with Olivia overnight to give me to the chance to get ready for race day in the morning. I had a few things to do in preparation for the day. Besides, the doctors always do their rounds later on the weekends which meant that Olivia wouldn’t be leaving hospital until late morning.
 
James arrived home with Olivia with barely any time to spare. We finally made it to Thoroughbred Park just before midday where we were greeted by a room full of guests, photographers, organizers and Catriona Rowntree. Catriona was very warm, friendly and down to earth, which is not what one might generally expect from a celebrity. She was overwhelmingly popular with the guests, exuded charm and energy and was the perfect fit for our event. She very quickly established a great rapport with Olivia which was wonderful to see.
 
Our guest speaker, Michael Milton, soon arrived. For just over the first half an hour, we were all whisked off for photo opportunities and media interviews. During that time, we had the opportunity to pat and feed a horse some carrot. The girls loved it! The grass had also been spray painted with our appeal’s butterfly button from our website, along with our website address. It was a stunning display.
 
We then headed inside where a lovely lunch awaited us. The room was decorated beautifully with white chair covers and purple sashes, along with purple balloons, Olivia’s favourite colour.
 
The day’s program was jam packed with six horse races throughout the course of the day, Michael Milton’s speech, my speech and an auction. Catriona kept the day moving very smoothly and did it all with a great sense of fun.
 
Michael’s speech gave us all an insight into his own battles with cancer, living with one leg and his amazing ability to overcome these adversities which was incredibly inspiring. I was moved to tears by Michael’s description of his struggle to deal with the constant worry resulting from his more recent cancer battle, as well as his desperate desire to have a normal life. I don’t think there would be a cancer sufferer out there whose own feelings don’t reflect those same issues. Although you try your hardest to maintain a positive outlook, that dark cloud of uncertainty constantly looms overhead and your life is never ‘normal’ again. We are very grateful to Michael for donating his time to speak at our event. Clearly it is a cause very close to his heart, having battled cancer as a child and then later as an adult. We wish him all the very best of health for the future.
 
I, too, had to give a brief speech. I was feeling fairly nervous but managed to relax a little after Olivia, so confidently, said a few words. She was amazing.
 
The auction went very well and most of the donated items sold at a good price. Peter Walker, from Peter Blackshaw Real Estate, also donated his time to auctioneer and did a fantastic job.
 
We met some wonderful people throughout the day and the feedback from guests regarding the day was overwhelmingly positive. Some of the guests also offered to assist us with future fundraising events for the appeal.
 
Overall, The Olivia Lambert Appeal Race Day was a wonderful success. Our family had a sensational time, particularly Olivia and Sarah, who spent the entire day, running around and having fun with some of their little friends who came along. We would like to pass on our very special thanks to Rebecca Sipeki, who put her heart and soul into organising every detail of the event, her husband, Chris, Ilona Fraser, Sarah Hyland, Deborah Layt and my mum and dad, Dick and Jackie Hedges. We were so lucky to have such an incredible team of family and friends who worked so diligently together to support our family and our cause. Thank you all from the bottom of our hearts. We would also like to thank Michele and Peter Kampen for their very generous contribution to the race day. Special thanks also goes to Thoroughbred Park, the six race sponsors, the suppliers of the luncheon and to the businesses who kindly donated items to auction or raffle, and of course, to Catriona Rowntree and Michael Milton.  I have included a list of individuals and businesses we would like to thank on our website.
 
Olivia has, of course, been our sole inspiration for all of this. Every day she inspires us with her incredible strength and courage and her love of life. She gives meaning to the word ‘hope’ and in her own words, we believe that she can “kick it in the butt”.
 
I should also point out that we are hopeful that race day will become an annual event for us at Thoroughbred Park. Although next year we hope to be raising funds for The Olivia Lambert Foundation, rather than an appeal. We are really looking forward to it.
 
We were absolutely exhausted by the evening and I had to take Olivia back to hospital for another overnight stay.
 

Monday, 6th October

 
Olivia was finally released from hospital today much to our absolute delight! We certainly hit a new all time record with that hospital stay. It’s amazing how your demeanour completely changes when coming home from hospital. We really do get so much joy from the little things in life. Having Olivia home from hospital where she is free to just enjoy life and be a little girl means more to us than anything.
 
We spent the rest of the week running around for various appointments, trying to get things done around the house and taking the girls to Floriade (the girls love it there).
 

Sunday, 12th October

 
We headed up to Sydney again today for Olivia’s last round of chemotherapy. James and I were completely unmotivated to pack and got away quite late in the afternoon. We had dinner at Macca’s on the way up. I usually try to avoid Macca’s but this time we had little choice as the girls were hungry and I lacked the care factor.
 

Monday, 13th October

 
Happy Anniversary, James! Seven years. I should point out that the last five years of our marriage have been crap, nothing personal James.
 
Olivia was feeling quite flat for the first few days of chemo. She rarely complains or is bothered by it but she kept telling us how much she hates chemo and that she wish she didn’t have to have it anymore. We continued to remind her that it was her last round of chemo which seemed to give her a temporary lift. She just seemed so flat even when she had visitors but especially when the doctors came round.
 
 
Thankfully Olivia picked up by mid-week. A couple of weeks ago, I bought the girls a face painting kit and boy, did we have some fun with that. Olivia painted my face, followed by Sarah’s and then I did Olivia’s face and legs. This fun continued for the rest of the week. Olivia was always looking for victims to paint. She did manage to paint the music therapist’s arm but somehow the nurses managed to evade it.
 
Olivia had a couple of visits from Captain Starlight and also a visit from the Clown Doctors. She just loves a good laugh – it’s just what these kids need while in hospital. If Olivia finishes her chemo early enough, we try taking her up to the Starlight Room for Fairy Sparkle’s karaoke, face painting, bingo and art and craft.
 
We saw Draga, Olivia’s oncologist, on Tuesday morning for the usual check up and to discuss what happens now. We discussed medications and what we should do now that Olivia was in remission again. Naturally, James and I are absolutely desperate to do what we can and yet we are aware that we are fast running out of options. Unfortunately, there isn’t much more we can do. Her doctor reaffirmed this. She basically said that it’s now case of ‘when’ she relapses rather than ‘if’. It’s always extraordinarily difficult to hear this. We do know this but the doctors seem compelled to constantly remind us. I know that they have to be cautious and not give patients and their families false hope but they have to offer some hope, no matter how remote. If not, what else have we got. I’ve been reading a book by Dr Chris O’Brien who was diagnosed with a deadly brain tumour two years ago. He was given six to twelve months. In his book, he writes about his transition from doctor to patient and how he has seen first hand the demise of patients who have been given no hope. It goes without saying that what a doctor tells you has an enormous impact on the patient’s attitude and their ability to fight their illness. Without hope, patients can deteriorate very quickly while those who have hope can continue to fight their disease for varying periods of time, while some even conquer it. Having said that, I know that Olivia’s doctors are hopeful but we do, at times, feel as though they have written off Olivia.
 
Once Olivia’s blood counts recover to a normal level, Draga would like Olivia to commence cis-retinoic acid again for six months (this is the medication she took for 11 months post-transplant). It makes her skin very dry, red, itchy and sensitive (as it is typically used for acne sufferers) but it suppose to mature neuroblastoma cells to a benign form. We are also contemplating using the B17 or Laetrile. We need to investigate this further. Draga also gave us the option of having Olivia’s next scans either the week before Christmas or at the end of January. Whilst initially I was keen to do them before Christmas because the anxiety of not knowing is often too much to bear, we have decided that we will probably wait until the end of January. If the cancer makes a return, there is little the doctors can do anyway so we might as well enjoy our Christmas and Olivia’s birthday in January. The girls deserve to enjoy a hospital free period and some time to just enjoy being kids. It will be a difficult period for James and I because we are very anxious (already) about her next scans. We know that we can still be told worse news and we just don’t want to hear it. Olivia looks so fabulous at the moment that I still find it extremely difficult to believe that she has such a deadly disease. If it wasn’t for her little bald head, no-one would know that there was anything wrong with. It really is so unbelievable and I’m not sure that I will ever come to terms with it. Sometimes I think I must be in denial. I’m not quite sure what to call it. Whilst we are obviously very happy for Olivia to be finishing her treatment in Sydney, we will continue to be on tenterhooks over the next few months. It’s a bittersweet experience. Nevertheless, we are feeling hopeful and will never ever give up this fight!!
 
On Friday afternoon we said goodbye to the nurses on C2 North and returned to Canberra.

Saturday 18th October

 
Mum and Dad looked after the girls this weekend as James and I headed back up to Sydney (just for the fun of it!). Actually, we were invited on a Parents Retreat with Camp Quality and the invitation was too good to pass up. Camp Quality put us up in 4 star accommodation in the city and organized a dinner and theatre package to see Billy Elliot. James and I were desperate to have a break and were keen to see Billy Elliot.  We left in the afternoon and the girls were very excited to be having a sleeping over at grandma’s and papa’s. Mind you, it felt very strange travelling to Sydney without the girls and a boot full of luggage.   I really missed them. These days, I feel completely lost without my family with me.
 
Mum had to take Olivia to Canberra Hospital in the afternoon for a GCSF injection, which according to Olivia went well and she ‘didn’t even cry’ and ‘was very brave’.
 
We arrived at the hotel in Darling Harbour at about 5pm, after James initially missed the turn-off, forcing us to take a bit of an unscheduled trip across the Harbour Bridge. This probably wasn’t helped by having a 1995 Street directory!
 
We quickly got ready and caught a taxi to the restaurant where we were booked for a 6pm dinner. We ordered very shortly after six. We were concerned when our meals had not arrived by 7:05pm, noting that Billy Elliot started at 7:30pm.   James went up again at 7:15pm to complain, only to be told by the waitress that the delay was because she wanted to bring all the meals out together and someone had ordered a well done steak! James pointed out that she didn’t have 18 hands so may need to bring the meals out over several trips and could bring the well done steak out last (which doesn’t require much more time to cook)! How ridiculous! We should point out that this was a package deal that included the hotel, meals and show so the restaurant was well aware that we needed to be finished eating by 7:15. Furthermore, we were the only people in the restaurant at that time. By 7:20, our meals had not arrived and we had to leave without eating. We made a quick dash to the theatre, arriving with barely 30 seconds to spare before they closed the doors. Luckily James had bought some M&Ms before leaving the hotel so we snacked on those, leaving me with a bit of a belly ache. Mind you, that didn’t stop me from hoeing into an ice-cream during the interval.
 
We had fantastic seats and really enjoyed the show. By the end of the show, I was absolutely ravenous despite having had chocolate and ice-cream. Mind you, I didn’t have lunch.   I can usually cope without food but I felt very lightheaded and shaky – I was desperate to eat. We all headed off to Chinatown for an 11pm dinner and thankfully, the food came out quickly.
 
According to the few people who stayed behind to wait for their meal and ultimately missed out on seeing the show, the chef was furious with our group because we had to leave to see the show. Mmm…interesting! We were very disappointed with Curve Café. Our heartfelt thanks goes to Camp Quality for a wonderful getaway. We sincerely hope they are reimbursed for this inconvenience.
 

Sunday, 19th October

 
Camp Quality also organized a trip for some of the kids to go and see Australian Idol. Oli was invited and so Mum was going to take her to the CQ office on Sunday morning to travel up to Sydney with the other CQ kids and volunteers. I was going to meet her in Sydney, go to Idol and then head back to Canberra on the bus together.
 
We arrived at Fox Studios at around 11.30, just before the bus arrived.  Oli greeted us with a huge smile and gave us both a big hug. She said that she had a great time on the bus. According to the bus driver, Oli talked non-stop for the whole four hour bus trip. Not really surprising! She had a wonderful time with the other kids and volunteers and particularly enjoyed the company of Caroline (a CQ volunteer who organized this event) and her 14 year old daughter, Olivia, who we call Big Oli. They get along so well and took such great care of Olivia on the bus ride. Our Oli just adores Big Oli.
 
We had a quick lunch before James headed back to Canberra. We were then whisked off to the studio to watch a ‘live’ taping of Australian Idol. The show was being pre-recorded today to accommodate the ARIA Awards yet still gave the impression to the viewing audience that it was ‘live’ during its 6.30pm time slot.
 
When we arrived, we sat down briefly to watch some of the Idols rehearse, though we were running quite late and only had the opportunity to see one of the singers. Ricki-Lee was sitting right in front of us, casually chatting to the person next to her, but didn’t even turn around to acknowledge our group which was really disappointing. These kids really look up to these people and I was disappointed that they didn’t even get a smile or ‘hello’ from her. Andrew G was fantastic and very welcoming. Guy Sebastian was nearby so I politely asked him if he would join Oli and Big Oli for a photo. He kindly obliged and was just lovely. The kids then had a very brief opportunity to meet and greet the Idols who returned to the stage. Unfortunately, neither Oli or I had followed the show this season and didn’t really know who was who. Thankfully, Big Oli filled us in on the who’s who and what’s been going on in the show.
 
We then had a bit of a wait outside the studio before we were shown to our seats. We were lucky enough to have front row seats. The ‘warm-up guy’ came out to amuse the audience throughout the show. He even had a couple of CQ kids sing and he gave them each a CD for their efforts. Oli was also keen to sing, as she always is, and nagged me for an opportunity to get up on the stage to sing. Unfortunately, her moment of singing glory never eventuated. She will just have to be satisfied with singing at home or in very public places (as she always does!).
 
Overall, it was a great day out. Oli had a really good time. I thought that she would be absolutely exhausted on our return to Canberra but once again, she didn’t stop talking! Thanks to Caroline for organising a wonderful day!
 
This latest trip to Sydney will be our last one until December or January when we will go up for Oli’s next round of scans. We are undecided about when we will go. On the one hand, we would like to get them over and done with and immediately deal with any potential recurrence. On the other hand, we want Olivia to have a good break from Sydney and for all of us to enjoy Christmas without worrying about what the scans might reveal. We’re not sure whether it will make a difference if we have them in December or January as I doubt there is much the doctors will do about it. Nevertheless, we have a very anxious wait ahead of us.
 
I recently read that cancer cannot be detected by modern scanning equipment until there are approximately 10 billion cells.   By this stage, the tumour has already exceeded half its life!  This is an extremely scary statistic.
 

Monday, 20th October

 
Olivia seemed really well this week but we were fairly confident that she would end up in hospital by mid-week with febrile neutropenia, requiring constant intravenous antibiotics and that she would certainly require a number of blood transfusions. We based this assumption on the fact that she has spent time in hospital after each of her last five rounds of chemo. We were not looking forward to it but knew that this would be the last time.
 
Olivia had a blood test on Wednesday to check her blood counts. I also took her to see Fiona, our chiropractor, on Wednesday. For the first time after a round of chemo, Fiona was pleased with Olivia’s condition. She said that her body appeared to be in good shape considering the recent round of chemo and that she couldn’t pick up on any infections in her body whereas she usually does. I left her office feeling very positive about this and although I still expected Olivia would end up in hospital, I was hopeful this wouldn’t be the case.
 
We took it easy at home for the next few days, knowing that Olivia’s blood counts were at their lowest point and that she could very easily pick up an infection and wind up in hospital.
 
On Thursday, Olivia went to hospital to have two blood transfusions (platelets and packed cells). Still no temp – fingers crossed!
 
Later in the week, a couple of friends of mine, Sarah and Deb (who also helped out with race day) dropped by with their children. They presented James and I with a cheque and a bottle of bubbly. They had sold boxes of chocolates at the preschool to raise money for our family. We were once again surprised and overwhelmed by the support of the preschool community. Our sincere thanks goes out to everyone who bought or sold chocolates, in particular, Sarah and Deb.
 
The girls’ cubby house arrived Friday night.  Now we just have to set aside some time to assemble it, which is likely to be some time after we get back from holidays.
 

Saturday, 25th October

 

 
Our friends, Rosie, Garry and Marcus dropped by for a quick visit today. They also dropped off some raffle books for us to distribute to family and friends. Garry organized a fantastic raffle to raise funds for The Olivia Lambert Appeal. Again, all proceeds will go towards neuroblastoma research. First prize is three nights accommodation and breakfast for two at The Sebel Vanuatu including return Air Vanuatu economy airfares for two (ex Sydney, Brisbane or Melbourne) to Port Vila. There are eight other prizes and they, too, are wonderful prizes. Our heartfelt thanks goes to Garry organising such a great raffle. If all tickets are sold, Garry stands to raise around $30,000 for the appeal. Go Garry!!! Thanks also to our family and friends and some Canberra businesses who have volunteered to sell raffle tickets on our behalf. We really appreciate your support!
I should also point out that the raffle will be drawn in Sydney on 20th December.
 

Monday, 27th October

 
The weekend passed by without incident and still no visit to hospital. We figured that if Olivia was going to develop a temperature, she would have done so by now. We were so happy about this – it’s amazing how something like this can lift your mood!
 
Having said the above, Olivia had to go for a blood test this morning and it revealed that her platelets were low, which we suspected as the timing was spot on and she had some petichiae (small red or purplish spots on any area of the body caused by a minor hemorrhage usually due to broken capillary blood vessels) on her shoulders which usually indicate low platelets. We headed to the hospital in the afternoon for a platelet transfusion. We were lucky in that they had some available Canberra Hospital as we usually have to wait for them to be flown from Sydney.
 
Besides Olivia’s platelets being low, I should point out that her white cells and neutrophils were on the rise so there is less risk of infection.
 

Tuesday, 28th October

 
Olivia went to pre-school this morning so she could participate in school photographs. She stayed the whole time, which she was absolutely thrilled about. I took Sarah to Kidstart.
 
We spent the rest of the day preparing for our trip to Queensland tomorrow.
 
We decided to proceed with the order for B-17, which had to be ordered over the internet from Mexico. We are still a little apprehensive about it but there is evidence to suggest B-17 may be of some benefit to cancer patients. It seems to be a reasonably harmless substance and we have done enough research to know that it will not harm Olivia, especially given that she will be on such a small dose. We feel that it’s certainly worth a try.
 

Wednesday, 29th October

 
We had a taxi booked for 8am to take us to the airport so we had to be pretty organized. Believe it or not, we were ready in good time with two massive suitcases, one smaller one, the girls’ backpacks, James’ two backpacks, a stroller and car seat in toe. Anyone would think we were leaving home for good. I really don’t know why we pack so much because after every holiday, we realize that we only ever wear or use half of the things we pack. It’s ridiculous but I guess you’ve got to be prepared for everything.
 
We arrived in Brisbane around lunch time. It was lovely and warm. We headed up to the Novotel Twin Waters Resort on the Sunshine Coast. Our room consisted of a queen bed and sofa bed for the girls, which would do for the one night we were staying there. On our arrival, we headed straight to the pool. The girls were incredibly excited and love any opportunity to splash around in a pool. We then watched the pelican feeding, followed by a canoe on the lake which was part of the resort. It was a lovely resort and seemed to have a lot to offer families. Unfortunately, we weren’t there long enough to experience much of it.
 

Thursday, 30th October

 
Before we returned to Brisbane, we went to Montville to poke around in some of the lovely shops. Once in Brisbane, we stayed a Rydges hotel on Southbank. Again, we shared a room with the girls but it was a lovely room with two comfortable queen size beds. The girls loved watching the Brisbane Wheel (a huge ferris wheel) and the Treasury casino building night time illumination change colours from our balcony.
 

Friday, 31st October

 
Today was the primary reason that we went to QLD: the ISIS Charity Golf Day. Dave Middleton, an old school friend of James’, works for a company called ISIS Projects in Brisbane and instigated the whole event. Every year the company holds a golf day with their contractors and donates the proceeds to charity. Dave put forward the idea that they dedicate the event to our family. The event was coordinated by Dave and another ISIS employee, Tajsha.
 
James had a 7am start at the golf course this morning as tee-off was around 8. I don’t think James can remember the last time he played golf and his skills left a lot to be desired. Nevertheless, I think he had a great time with the boys and managed to pick up a few useful tips from some of the more experienced players, like Trent, our brother-in-law. The girls and I headed off to the golf course for lunch after spending the morning at the hotel.  The golf club was lovely and the weather was perfect. Lunch was held outside and the girls had a great time running around. We met some wonderful people who were clearly moved by our family’s plight. Some of them even donated the gift vouchers they won on the day to our family. We were incredibly moved and overwhelmed by the kindness and generosity of everyone there. The girls were presented with baskets filled with presents which they were absolutely thrilled about.  We are sincerely grateful to Dave and Tajsha, the rest of the ISIS team and the subcontractors who made the day such a success. We all had a fabulous day!
 
We had to leave the golf day a little earlier than anticipated as Oli required a blood test. The outreach nurse from Sydney organized it for us. I had noticed some petichiae appearing on Olivia’s shoulders and she had very noticeable bruising on various parts of her body, particularly her legs. It is unusual for her to require transfusions at this time but I was fairly confident that she would need platelets.
 
We headed back to the hotel. Oli was so tired, she fell asleep in the car. I took Sarah back up to our room for a sleep while James headed off to the hospital for Oli’s blood test. They returned later on (around dinner time) only to tell me that Oli need both platelets and packed cells and that she would be spending the night in Royal Children’s Hospital to have the transfusions. We packed our bags and James dropped Oli and I off at the hospital. Although it was disappointing that Oli had to spend time in hospital, it was better that it was an overnight stay so that our days were free to have some fun. Once again, Olivia handled everything extraordinarily well.

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.

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 (http://www.kahlilla.com) 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.

Sunday, 20th July

 
We all travelled up to Sydney together to start her third round of chemo. Unfortunately, however, she had to have her treatment in the isolation room because she had contracted conjunctivitis and still had a niggling cough. She required antibiotic eye drops. Her eyes looked pretty bad and gunky for the first few days. Olivia was quite frightened when she awoke one morning to find her eyes were glued shut with gunk! Luckily, the infection cleared up by the end of the week.
 

Wednesday, 23rd July

 
We had a call to say that Olivia’s fairy dress was ready. As soon as Olivia had finished her treatment for the day, we headed off to Fairyland in Mosman to pick up the dress. Olivia was incredibly excited. The fairy dress was beautiful and very, very bright (it just wouldn’t be Olivia if it wasn’t!). Of course, we then had to fit out Sarah with some fairy attire. She got a gorgeous skirt and top with a cute little flower headdress. She was the most beautiful little flower. We were very lucky that the owner of the shop had authorized the manager to give a rather significant discount (I think it worked out that Olivia’s fairy dress was free!) because she had been moved by Olivia’s story on 60 Minutes. Very generous!
 
Of course, from that day on Olivia wanted to wear her fairy dress. She wore it down to dinner at RMH and didn’t want to take it off for bed. She also wore it to her last day of chemo where she wowed all of the doctors and nurses. The dress was huge and certainly stood out. It had layers and layers of tulle, as well as many roses attached. It certainly wasn’t the ideal dress for hospital especially when it came to using the bed pans! Anyway, Olivia loved it and the attention she got from wearing it. She certainly stood out.
 
For me, the week was quite turbulent. Because we were so disappointed that our everyday hero website had not been promoted on 60 Minutes (only on their website, but you had to look for it), I decided to approach The Canberra Times, hoping that they might promote our fundraiser. I heard from one lovely journalist, Jessica Wright (Today columnist) who was more than happy to cover our story and promote our fundraiser. However, another journalist took over and was given the mandate for our story. Unfortunately, the interview had to be done over the phone as we were in Sydney. To my disappointment, Olivia and I were interviewed by a journalist who came across to me as being quite young and inexperienced. I don’t think she had done much in terms of research to find out more about our family and some of her questioning was inappropriate. For example, she asked Olivia if she thought having cancer was scary. I was dumbfounded! I couldn’t believe that a journalist with even an ounce of integrity would pose such a question to a little 4 year old girl. I quickly snatched the phone away and ended the interview with Olivia. She also asked me if I ever cried. What kind of question is that?!
 
After the interview, I felt uncomfortable and was concerned about what this journalist was going to write. I simply wanted to raise further awareness and direct the public to our fundraising site. The article appeared on page 5 the following day. There was a beautiful, enlarged photo of Olivia I had taken of her on the Civic merry-go-round. The article was okay but I was absolutely livid when I noticed, at the end of the article, that the journalist had not correctly printed our everyday hero web address. That was the condition under which I did the story and I made that very clear to the journalist prior to the interview. I was so angry and upset as I had invested a lot of time and energy into establishing the fundraising, ranging from the 60 Minutes gig to organising the appeal. In the midst of all of this, I was still taking care of Olivia. I rang the editor (and got the editor’s assistant), explained the dilemma and requested that they rectify their mistake. After much discussion and a few tears (on my part), the editor’s assistant told me that he would do what he could but it would involve a lot of leg work on his part and that the most I could expect would be a tiny correction in some corner of the paper. There was no apology. I felt incredibly let down and vowed to stay away from the media.
 
Shortly afterwards, the journalist who did the story returned my phone call, only to say that she had put in the correct web address and that ‘someone else’ had changed it. Yeah, right! On a brighter note, the lovely Jessica Wright contacted me to express her disappointment over the omission and assured me that she would place a small article about Olivia with the correct web address in her daily column. I was incredibly grateful and really appreciated her warmth and compassion towards our family’s situation.
 
We returned to Canberra late on Friday night. Unfortunately, there was an accident just near Sydney airport during peak hour, so it ended up being a very long trip. 
 

Tuesday, 29th July

 
Overall, Olivia has felt quite well throughout her treatment, though has unfortunately had to spend a lot more time in hospital than we had hoped for. We once again ended up in Canberra Hospital on Tuesday night with the usual fever and tiredness, as well as low blood counts. She required several blood transfusions over the course of the next few days. Overall, we were in hospital until Saturday afternoon.  Thanks to my mum for helping us out by occasionally staying overnight with Olivia. Once again, the play therapist made the stay a lot more bearable by providing a huge plasma TV, DVDs and other things to amuse Olivia.  Whilst there, she also had a visit from Daphne the Labrador, whose owner works for GHD. They visit the hospital every Thursday as part of their community program. Olivia seems to enjoy patting dogs and has told us that she would like us to get a dog sometime. We may look into this once we know that we will be spending more time at home.