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.