MAY 08
Tuesday, 6 May
Today, we headed off on Olivia’s Make-A-Wish holiday to the Gold Coast. We stayed at a lovely resort, the Mantra Sun City, and had a two bedroom, fully self-contained apartment, with great views over Surfers. The weather was absolutely perfect and luckily for us, it remained that way for the duration of our stay in Queensland. Our itinerary for the week was jam packed.
Wednesday, 7 May
HAPPY BIRTHDAY, DAD! Sorry we couldn’t be there to celebrate with you.
Also, HAPPY BIRTHDAY TO JULIANA!
On Wednesday, we went to Sea World. We were all so excited, especially the girls. The experience began as quite a bittersweet one for us as it was sad, knowing what we know about Olivia’s prognosis, but on the same token, we were so happy watching her having so much fun.
I don’t think we missed any of the rides, although, Olivia was thoroughly disappointed when she realized that she didn’t quite meet the height requirements of the Corkscrew (rollercoaster). However, we were able to compensate by letting her go on the Pirate Ship, although she had to be with either James or myself. She managed to go on it about four times in a row. Olivia was fine but James was starting looking a little green around the gills! She is a true ‘adrenalin junkie’ as she puts it. The highlight of the day was Olivia having a backstage pat of one of the dolphins. She was able to get into the water and have a cuddle and a pat of Nyla (sp?) the dolphin and she was also able to feed her fish, although she did find this experience a little bit slimy. The dolphin trainer also taught Olivia a few signals for getting Nyla to wave and jump up into the air. She also gave her a tool that they to use to call the dolphins. It was a wonderful experience and Olivia definitely ranked it as one of the best!
We had such a busy day that we didn’t have the opportunity to go on the waterslides there, besides the water was cold and it wasn’t quite hot enough for it.
Thursday, 8 May
We spent our rest days either going to the beach, the hotel pool or shopping. We also spent an evening with Auntie Shell and Uncle Bob, which was lovely as we don’t get to see them very often.
On Thursday night, Olivia had quite severe tummy pain. She was crying and doubled over in pain. We thought that perhaps she just needed to go to the toilet. After a while, we started to become worried as the pain seemed to be getting worse. We didn’t really think that it was the cancer, especially since the cancer was only in her knee at this stage and besides, surely the cancer wouldn’t have grown that quickly to cause pain. I was more upset to see Olivia in so much pain and was upset by the prospect of having to face this sort of scenario down the track if and when she does get sick from the cancer. It was heartbreaking. James spoke with Olivia’s oncologist and she wasn’t concerned at all. In fact, she made a very good point – she’d be limping before she had trouble with her tummy. In the end, James went to chemist to pick up some Panadol while I lay with Olivia in her bed and kept her calm until she went to sleep. There was no longer any need for the panadol, by the time James returned.
Friday, 9 May
On Friday, we went to Whitewater World. Luckily, it was just warm enough for it (and I mean just!). Olivia got her wish of going on waterslides. She went on some pretty fast slides on the big rubber rings. She went with James the majority of the time (far too cold for me), though I did go with her once and I couldn’t believe that she wasn’t scared – I was! I spent a lot of time with Sarah in Wiggle Bay where she enjoyed the little slides. It’s a fabulous water park though it would have been better if it was a few degrees warmer. Again, the girls had a ball!
Saturday, 10 May
On Saturday, we met up with James’ sister, Romy, and her family at Movie World. We had a great day and I think the girls really enjoyed catching up with their cousins. The staff at Movie World really looked after us, providing us with a buffet lunch and an opportunity for Olivia to meet and have a photo taken with her favourite character. She chose Tweety bird but I think Sarah was more enamored by him. Sarah was really taken by him and couldn’t stop cuddling him – it was very cute.
Again, Olivia headed straight to the thrill rides. She spent a lot of time on the kids’ rollercoaster and was bitterly disappointed when she didn’t meet the height requirements of some of the adult rides – there were a lot of tears! Nevertheless, both girls had another fun-filled day.
Monday, 12 May
Olivia woke up on Monday morning complaining of bad tummy pains again. She had trouble walking, her tummy was so sore and couldn’t eat breakfast. She was constantly crying out in pain. We couldn’t get her in to see a doctor for a few hours. It was looking like we may not make it to Dreamworld and Olivia agreed that she was in too much pain to go. We were so disappointed that she was so unwell on the last day of her special holiday. We gave her panadol and I lay down with her in her bed, hoping the pain would subside. It was very upsetting to see her like this. She only ever complains when she is genuinely unwell. After an hour or two, she started to pick up and was keen to go to Dreamworld, so we cancelled the doctor’s appointment. We were relieved that she recovered.
Although we were a little late, we made it to Dreamworld. Olivia showed no signs of any problems with her tummy. She was all too keen to go on the scariest rides there. One ride she went on, the Reef Diver, spun around and around and then lifted off the ground until we were upside down and spinning around at an alarming rate. I was okay until it stopped and then I thought my lunch was about to come back up. We then went on another couple of times! Olivia was fine but I just couldn’t cope anymore. I felt so nauseas and continued to feel like that for the rest of the day. I instructed James to go on that ride with her the next time. He did but he felt terrible after just one go. Olivia just wanted more! Sarah enjoyed all of the kiddy rides. We all had a great day. However, upon leaving, I felt devastated that the holiday was over. I was so upset, very teary. I wanted to see our beautiful girl enjoy every day as she had over the past week. It was very hard.
Olivia woke up around 10.30pm screaming out in pain. She was in agony! She was doubled over and we couldn’t even lift her without her screaming out in pain. We gave her panadol but it didn’t seem to help. We then decided that she needed to take a trip to the hospital. I tried to lift her but she was in terrible pain and I had to lie her back down on the bed and watch her squirm around in pain. We then decided that the only thing to do was to call an ambulance. The paramedics arrived just before midnight. By the time they’d arrived, Olivia had settled down but was still in pain. James went to the hospital with her, while I stayed with Sarah, only to pay $300 to find that she was constipated. We suspected this was a possibility but she had been going to the toilet so it wasn’t the most obvious reason for the pain. The doctor gave her a slow acting laxative to help with movement. Slow acting it was, as she was still in a fair bit of pain the following day.
Tuesday, 13 May
We packed up and headed off to the airport on Tuesday. On our way to the airport, I made contact with Olivia’s oncologist who told me that we no longer needed to be in Sydney on Thursday for Olivia to have her portacath inserted. She said that there was no guarantee that the surgery would go ahead on that day simply because the surgeons were so busy, and she was only on the emergency list. Her doctor had booked her in for the following Tuesday. Following our conversation, James and I spontaneously decided to ditch our flights back to Canberra and stay for another few days. We changed our flights and organized some accommodation at Burleigh Heads and stayed on until Saturday. The wonderful social worker at Canberra Hospital organized free entry for us at Sea World, Movie World and Dream World so we could do it all over again! And we did, only in reverse order. We had a lot of fun but we were exhausted by the end of it all. We headed back to Canberra on Saturday and went from a beautiful, sunny 25 degrees to just 7 degrees, freezing cold and rain. That was a shock to the system!
We can’t speak highly enough of the Make-A-Wish Foundation. They organized the most wonderful, special, memorable holiday for us at a minute’s notice and we were well looked after. We are eternally grateful. Nothing was a problem for them. It was definitely the best holiday we have ever had and they really made a gorgeous little girl’s dream come true. A huge thanks to everyone involved – what a wonderful organization!
Saturday, May 17
It was terribly hard settling back into reality. We’d come from being on such a wonderful high to having to think about heading back to Sydney for Olivia to have a portacath inserted, followed by the start of chemotherapy. Although we hoped and prayed for it, we couldn’t help but wonder if we were ever going to see our beautiful girl this well again. It was an agonising feeling.
Monday, May 19
We headed up to Sydney this afternoon for Olivia’s surgery and chemotherapy. Sarah came with us this time. I had moments in the car where I felt sick to my stomach thinking about what lay ahead of us.
On arriving at Ronald McDonald House (RMH), we were lucky enough to get one of the transplant units for the week. They are fully self-contained, with a bathroom. The bedroom has a queen bed and a single. I ended up sleeping with Olivia, while Sarah slept in the single bed and poor James had to sleep in the crappy fold out sofa bed where he could feel the springs and wires in the mattress. However, it was good that we all had a bit more room to move and to have our own bathroom and kitchen was a real privilege!
Tuesday, May 20
We headed up to hospital around 9am but ended up having to entertain the girls for most of the day because Olivia didn’t go into surgery until after 3.30! I don’t know how they can expect little kids to fast for so long. It was all day in Olivia’s case but she handled it amazingly well and we rarely heard a complaint.
While we were waiting for her surgery, we managed to duck out of the ward to briefly meet Fairy Sparkle (yes, that is her real name!) outside the fairy garden. Fairy is an amazing person who is a full time (24hrs/day) fairy. She has built fairy gardens at about 7 different children’s hospitals in Australia and spends her time as a volunteer bringing smiles to sick kids faces. When meeting with Fairy Sparkle, Olivia told her “the doctors are trying to find the right medicine for me. They can’t find the right medicine to make my cancer go away.” This comment both upset and astounded me. I didn’t realize that she had such a good understanding of the situation.
I went in with Olivia as she was put to sleep for her surgery and I shed a few tears. She was so brave and completely unphased by what was going on and she handled everything like a champion. I was even more heartbroken once she awoke from surgery. She woke up fairly well, without the usual crying and screaming, but she was in pain and I think the portacath (which looks like a big lump and scar on her right ribs) was uncomfortable. I knew it would take a bit of adjusting to based on my own experience because it can feel quite strange for a few days but after a while, you hardly even notice it’s there.
We were soon moved up to the C2South wards, where Olivia spent the next few hours recovering. She required a dose of panadol as she was in a bit of pain. Overall, I felt that she coped really well. I’m an extremely proud mum! We were allowed to head back to RMH at around 9.15pm.
Wednesday, May 21
Olivia began her first day of chemotherapy. This chemotherapy protocol lasts for five days. On each day she will have the same combination of drugs – Topotecan and Cyclophosfamide. She will have about two hours of pre-hydration fluids, followed by about an hour of chemo and then three hours of post-hydration fluids. The latter is needed to flush the toxicity from her body, especially because cyclophosfamide is particularly toxic to the bladder, causing some serious side effects. Both of the drugs cause side effects including hair loss, mucositis, mouth ulcers, diarrhoea and can cause moderate to severe myelosuppression (drop in blood counts) to name a few. There are also long term side effect associated with most of these drugs.
Olivia managed to make it through her first round of chemo without any problems at all. Her portacath gave her a few problems in the first few days. She was in quite a bit of pain so we gave her Panadol. I think it was also a case of getting use to having it there. It didn’t seem to bother her so much by the weekend. She was also extraordinarily brave when the nurses accessed her port. She was scared and teary and cried a little when the long needle went in but it was also her first experience of it so hopefully each time will be a little bit better.
Mum and Dad came up to Sydney on the weekend to give James and I a break. They looked after the girls and James and I were able to go out for dinner together, which was lovely. They are always helping us out whenever they can.
James and I questioned Olivia’s doctor about the effects of the chemo. Because Olivia had been coping remarkably well, we were worried that the chemo wasn’t doing what it should be doing. Although we don’t want her to be sick, we also don’t want to be putting her through all of this if the chemo isn’t working on the cancer. Her doctor assured us that Olivia has had the correct dose and that we should just wait and see.
We headed back to Canberra on Monday afternoon. Prior to leaving, Olivia had to have a dose of G-CSF. This medicine helps to bring Olivia’s white cell count back up after it drops. It involves a needle in the leg. She coped with the needle in the leg part with the help of an Emla patch (numbs the area) but the medicine is so thick and cold that it goes in very slowly and causes Olivia a lot of pain. She screamed and screamed as the medicine went in and I held her hand. I found this very upsetting but unfortunately, there wasn’t anything I could do about it. I really wish she didn’t have to go through any of this and it was me instead!
Tuesday, May 27
It was great to be back home. Olivia continued to remain well for a few days.
Thursday, May 29
Olivia had a blood test this morning. It’s a routine requirement after chemo to see how her blood count is going and whether or not she requires hospitalization or blood transfusions.
I began taking Olivia to see an excellent Canberra chiropractor. I had previously seen her for my back and shoulders, etc. My mum got me onto her as she had heard so much about her from friends and that she did amazing things. During the week, we went to our first appointment. Fiona (the chiropractor) does something called Neurolink. It’s very complex and difficult to explain but in a nutshell, she uses techniques to reconnect the brain with the rest of the body and it’s suppose to help your body and organs work more efficiently. The way it’s been explained to me all makes sense but it’s just too difficult to articulate in this blog. Fiona was able to pick up on a few things going on inside Olivia’s body, including the cancer and a couple of areas with fungal infection to name a few. She picked up that her immune system wasn’t working as well as it should be and that she was dehydrated. Most of this, no doubt, is a result of just having had chemo. My goal is for Fiona to hopefully improve the efficiency of Olivia’s immune system to possibly help her better cope with the chemo and its side effects. Although Fiona has seen some amazing things happen to people with cancer, I don’t have any unrealistic expectations. I just want to do what I can for Olivia that may help, even if it’s only in a small way.
I should also point out that we have now opted to adopt a more organic approach to eating. This has been difficult to achieve as it’s not always easy to do when we’re traveling so much. Quite often we just have to eat whatever’s available at the time depending on where we are. Also, the chemotherapy has changed Olivia’s taste buds which makes it extremely difficult for her to make healthy eating choices as she seems to prefer saltier, fattier foods. At this point, we feel it’s more important to get her eating than to worry about what she’s eating. Although when she’s feeling well, we do try to enforce healthier eating and include lots of fruit and veggies. When we’re in Canberra, I try to make most meals from organic produce. We have also switched to organic shampoos and soaps. Again, I don’t know how beneficial all of this will be to Olivia but surely, it’s better to eat foods that haven’t been sprayed by nasty pesticides.
I’ve also started taking Olivia to a clinical biologist who is looking at what she eats and can tell me what will benefit her most and what foods to avoid. This seems to be very limiting but we’ll see what they have to say during our next consultation. They took a sample of Olivia’s urine so that they can put together some sort of herbal concoction to boost her immune system.
When we got home, her lovely little friend, Jessica, from preschool came over to play. They both had a great time. Olivia just loves to play with her little friends and loves going to preschool (when she can).
Olivia’s GP called in the evening to let me know that Olivia’s counts were very low. Her platelets were very low (can’t recall how low) and the doctor advised me to take her to the hospital for a transfusion. Her haemoglobin count was dropping, as were her white cells and she had no neutrophils (the white cells that help to fight infection). I started to shake on the phone. I don’t really know why but I think it was that the realisation of what we’re going through suddenly hit me. All the memories of her previous treatment came flooding back and we were now going through it all, all over again.
I phoned one of the oncologists in Sydney and he said that he was happy to just wait and see how Olivia goes over the next couple of day and that we just needed to watch out for any unusual bleeding, bruising (low platelets) and high temperatures (lack of neutrophils). If any of this occurs, then we had to take her straight to hospital.
Friday, May 30
James and I had booked tickets to see Phantom of the Opera in Sydney many months ago, prior to Olivia’s relapse. Last night, we considered not going to Sydney, given Olivia’s low blood counts (anything could happen now). In the end, we decided to go as we were only going to be away for one night and Olivia was looking good. The girls stayed with Mum and Dad and I left very detailed instructions for them in case Olivia did require a trip to hospital.
We made it to Sydney, had a lovely dinner with our friends Rosie and Garry. On taking our seats for the show and about a minute before it began, I rang Mum to check up on the girls, believing that they were fine. Mum announced that she was just about to take Olivia to the hospital as she had a temperature. I couldn’t believe. I just wanted to go home. Mum assured me that everything was fine and that she would be with Olivia overnight so I needn’t worry. Of course, it was difficult to enjoy the show but James and I decided we’d head back to Canberra first thing in the morning. The show was excellent, by the way (even though I did have other things on my mind).
Saturday, 31 May
Upon returning to Canberra, James spent the night with Olivia. She seemed to get over the fever fairly quickly and appeared to be quite well, although she did need blood and platelet transfusions.
JUNE 08
Wednesday, 4 June
James and I took turns in the hospital for five days! We certainly didn’t expect to be stuck in there for that long. We were so hoping that Olivia might escape a fever with this chemotherapy protocol as we were told that it was pretty well tolerated. Given how well she was during the administration of the chemo, we thought that she might tolerate it well. It was not to be. Olivia actually looked clinically well throughout most of her stay in hospital but the frustration was with her blood count remaining so low. The doctors wouldn’t let her leave until she got some neutrophils. She had none for about 5 days and they had to be at least 0.7 to leave hospital. They came back up very slowly! In the end, they let us leave even though Olivia’s neutrophils hadn’t quite reached the desired level. A bit of begging on our part might have helped. We had major cabin fever!
I should also point out that we had booked airline tickets and accommodation in Melbourne for four nights commencing today. Of course, that plan crumbled. We also felt that, regardless of the hospital stay, Olivia should be taking it easy at home rather than being dragged from pillar to post. At this point, we realized that we should not make plans to do anything because our situation is completely unpredictable. Hopefully, we will be able to plan some special holidays with our beautiful girls once things settle down a little (whenever that will be!).
Earlier this week I also had a call from a producer at 60 Minutes. I had approached them when Olivia first relapsed as I decided that it was time to raise awareness of neuroblastoma. We also wanted to show the world what a wonderful girl Olivia is and what families go through when they have a child diagnosed with cancer. The producer was hoping that they could do a story about Olivia and neuroblastoma. They had already filmed an Aussie boy with neuroblastoma who is being treated in the US, however, they also wanted to film a family in Australia. I was thrilled that we were being given this once in a lifetime opportunity as I could now achieve my goal of raising awareness and hopefully raising funds for neuroblastoma research!
Thursday, 5 June
Today was the day we decided we had to shave Olivia’s head. Her hair was falling out at an alarming rate (much more quickly than last time). It had become very patchy and was getting into her mouth and eyes. James had to do it as I found it quite upsetting, however, I did film it. Olivia was amazing in the way she handled it. It didn’t bother her at all and she spent most of the time making jokes about it. I was devastated to see those beautiful curls go. To me, her hair was so symbolic. It represented how far she had come since she completed her initial treatment. Her ‘new’ beautiful curly hair reflected her beautiful personality.
I literally spent the whole day on the phone with a couple of producers from 60 Minutes. They were very keen to get on with making the story and they wanted to begin this weekend. We spent considerable time making arrangements. They booked accommodation for us at Star City and even organized flights and accommodation for my parents to stay with us! We were very excited.
Friday, 6 June
Today was a bit of a rough day. Olivia had been complaining of tummy pain on and off for the past few days. It seemed to escalate by the evening to the point where she was in excruciating pain, particularly when she went to the toilet. She was also starting to experience mouth ulcers.
Being the Queens Birthday Long Weekend, Olivia had been pretty excited about watching some fireworks. Auntie Nean had once again offered to bring around some fireworks for the girls. Unfortunately, she got sick this afternoon, so was unable to come over. This afternoon, after chiro, Olivia and I bought some fireworks for the weekend.
I went out to get some mouth wash to help Olivia’s sore mouth whilst James let off the fireworks. Olivia seemed to be in too much pain to really enjoy them. At one point she decided to swing between the chairs when James was outside, and fell on her chin on the tiles, causing a lot of pain and bleeding in her mouth, mainly from an ulcer on her tongue. Needless to say she was very upset and it took a long time to settle her down in bed this evening.
Saturday, 7 June
We were up for a lot of the night as Olivia had terrible pains in her tummy due to the mucocitis and had diarrhoea. She spent some time in our bed and all we could do was to give her panadol and lots of cuddles.
We had to travel up to Sydney today to meet up with the 60 Minutes team for filming. We were concerned about how Olivia would travel as she was still in a lot of pain and although we continued to give her panadol, we were beginning to feel that she may need something stronger as the pain wasn’t really subsiding.
By lunch time, the pain had settled down and we drove up to Sydney. We stayed at Star City and met Mum there as she had arrived earlier from Port Douglas (after visiting my brother and his family). Dad was arriving tomorrow. It was an all expenses paid trip thanks to Channel Nine.
Sunday, 8 June
Unfortunately, it was a rainy day. 60 Minutes had planned to do some filming at Luna Park but we ended up going with plan B and met the team at an ice-skating rink. Initially I was concerned as, firstly, Olivia has no idea how to ice skate, and secondly, she has low platelets, so if she fell, there could be major problems with bleeding and bruising! We were assured that she would be perfectly safe as a professional skater would be carrying her around the ice.
On arriving at the ice rink, we met up with Glenda (the producer), the sound and camera crew and Peter Overton who is reporting the story. They gave the girls a present each which was lovely.
They filmed Olivia being whisked around the ice with a champion ice-skater from Seoul while Peter chatted to us rink side. The skater, who was tiny, must have carried Olivia around for over an hour which must have been exhausting because Olivia is certainly no lightweight! The chat with Peter was a little daunting. I suddenly got stage fright and was unable to respond to his questions in an articulate manner! It just didn’t feel natural to me. I loosened up towards the end and things seemed to flow a little better.
Olivia and Sarah both got to be pushed around the ice on chairs – they had a blast.
After several hours of filming, we headed back to Star City. Again, Olivia began to experience tummy pain which was difficult to keep on top of. All we could do was give her panadol. Back at Star City, 60 Minutes filmed an interview with Olivia in our room. James and I were out of sight for the interview so Olivia wouldn’t get distracted and Mum and Dad took Sarah out for a while. We listened to the interview and it was just beautiful. She had us laughing hysterically one minute, and in tears, the next. What she had to say was just beautiful, innocent four year old banter. We were also overwhelmed by how much she understood about her condition, as well as my own. However, she also managed to talk about ‘poo’ and ‘puking’ in great depth – we all got an education! Somehow I don’t think that part of the interview will feature in the final cut! I wish they could just air her whole interview. She also told Peter about her wonderful ‘Make-A-Wish’ holiday and said that she was able to go to on all the rides at the theme parks because “my dad has lots of money!“ Uh-huh!!! We wish!
After the interview and a little down time, we took the girls to Lollypops Playland at Fox Studios. The crew did some more filming. The girls had a fabulous time.
Monday, 9 June
We had a lovely day without film crews chasing us around. We took the girls to the Sydney Aquarium in the morning, courtesy of Ronald McDonald House. Mum and Dad flew back to Canberra with Sarah in the afternoon, as Olivia was going to start chemo this week. We took Olivia for a ride on the Monorail around Darling Harbour and then to Wildlife World in the afternoon.
Tuesday, 10 June
We left Star City this morning to head over to RMH as Olivia was going to begin her second round of chemo some time this week. We saw Olivia’s oncologist and unfortunately, Olivia’s blood counts were not high enough to commence chemo. In fact, they were low enough to warrant platelet and red blood transfusions!
Wednesday, 11 June
The 60 Minutes crew met us at the hospital to do some filming and to speak with Olivia’s oncologist. Olivia arrived at hospital dressed in her beautiful fairy dress (she loves her fairy dresses and has lots of them!). Peter chatted to us and Olivia from her bedside. Although I was still a daunted by the cameras, it wasn’t too bad as Olivia was mostly the focus of their attention today. Fairy Sparkle was invited to be part of the filming so she joined Olivia and they had a wonderful time together. Fairy even took Olivia (and her IV pole) downstairs for a wander around the fairy garden. She let Olivia wear her beautiful, starry shawl. Olivia was thrilled and felt so special.
Thursday, 12 June
Once Olivia had finished her transfusions, we were able to go home for a few days, while we waited for her to recover enough to commence chemo again.
It was great to be back home, and just have a few quiet days together.
Monday, 16 June
Olivia was feeling relatively well by now, so we decided to let her go to preschool. She simply loves preschool and was so excited. When we pick her up from preschool, she always has a huge smile on her face and excitedly tells us about her day. It’s times like these that we truly wish we didn’t have to go through all this treatment and that she could just be a normal kid.
The 60 Minutes crew came to Canberra to take some more footage. They wanted to take some shots of Olivia at preschool. We took her to preschool later today so that crew could follow us there. It all seemed to go quite well and the kids didn’t seem at all concerned about the film crew. Apparently the kids had to sing twinkle twinkle little star about five times, just to get the right take.
This afternoon, the 60 Minutes crew returned and took some footage of us going for a bike ride around our local lake and playing at the park.
After the ride, Olivia took Peter (and the film crew) down to her room for a bit of a chat and play. We were at the other end of the house so have no idea what Olivia said. In fact, given the amount of footage that has been recorded, we really have no idea what the final story will be like.
It is James’ birthday on Wednesday, the 18th and given that we were going to be at RMH, we decided to have a cake at home before we left. We had an additional guest at the birthday celebrations – Peter Overton joined us. The girls helped their daddy blow out his candles and Olivia held James’ hand while he made a very special birthday wish and cut the cake. If only this nightmare would end by simply making a wish! You never know.
We spoke to Olivia’s doctor in the evening who informed us that Olivia’s platelets were still very low but she seemed to think they might increase enough to begin chemo on Wednesday. We were disappointed that Olivia’s counts were still low as we didn’t want Olivia’s treatment to be delayed any further.
Later that evening, we received very sad news. Dylan, one of the handful of neuroblastoma kids that we have met at Sydney Children’s Hospital, had passed away from this dreadful disease. Our deepest sympathies go out to Dylan’s family – no parent should ever have to watch their child die. We were deeply saddened by this news and hope and pray that Dylan’s family somehow find the strength that they need. We can’t imagine how difficult this must be for them. They are never far from our thoughts.
Tuesday, 17 June
Olivia was very excited about going on a school excursion to the National Gallery of Australia today.
Whilst Olivia was at preschool, 60 Minutes interviewed James and I for about an hour. After several days of filming we found that we were certainly a lot more at ease talking to Peter, however, we still both found it very confronting when he asked the difficult questions. We were also still upset about the news of Dylan’s passing.
James was pretty teary throughout most of the interview. I had my moments but surprisingly, I was able to pull myself together fairly quickly. I did, however, break down at the conclusion of the interview. It was a very draining experience. I think James had a difficult time because he doesn’t let go of his emotions as much as I do and it all seemed to come out during the interview. I tend to talk more about the situation and seem to cry on a regular basis.
After the interview, we picked Olivia up from preschool. She had a fantastic time on the excursion and told us that she saw “Poles”. We initially weren’t sure what these “poles” were. She continued to talk very excitedly about them. We soon worked out that she was talking about the famous Blue Poles painting, though we were a little surprised that she was so excited about seeing it. She is obviously a lot more cultured than we thought (and much more so than her dad!).
We finish packing and headed up to Sydney, hoping to start chemo tomorrow. Sarah came with us this time.
Wednesday, 18 June – Happy Birthday, James!
Although it is not an ideal way to spend your birthday and that you so desperately wish that Oli was well again, just know how much we love you and appreciate everything you do for us. You are a wonderful daddy to both our girls, as well as a loving husband. We hope that we will be celebrating so much more this time next year and that we have our beautiful girl home with us, happy and well again. Surely, that’s not too much to wish for! We love you heaps.
Oli had a blood test this morning, which releaved that her blood counts had not recovered as expected. Unfortunately, this meant that we had to pack up and go back home again and aim to start chemo next Monday. We also said goodbye to Peter Overton and the team as this was the last day of filming. Although the filming was an intrusive experience, we think it was definitely worthwhile. If Olivia’s story can raise awareness of this insidious disease and hopefully raise funds for neuroblastoma research then we will be thrilled. We hope that we can also reach out to other families who are in a similar situation so that they know that they are not alone. Our message to them is to never, ever give up hoping and to stay as strong and as positive as you can be. This can be impossible at times but somehow we seem to gain so much of our strength from Olivia. Every day she gives us a million reasons to hang in there.
Thursday, 19 June
We went to Mini Q (Questacon). As usual, Olivia was begging for us to take her on the simulated roller coaster. She is such an adrenalin junkie. Unfortunately, Sarah was pretty tired and started to lose the plot after a while.
Friday, 20 June
Olivia had another blood test this morning to determine if she is finally ready to start chemo.
Olivia went over to Jessica’s house for a play. She loves to play with Jessica and talks about it incessantly for days before and after. Whilst we were there, I received word from one of the doctors that Olivia’s blood count was at a reasonable level to begin chemo on Monday. Hooray – finally!
Sunday, 22 June
We headed up to Sydney again today – it is all starting to feel a bit like groundhog day, having clocked up nearly 7000km over the last 3 months!
Monday, 23 June
After what seemed like an eternity since her last round, Olivia was finally commenced her second round. Whilst we obviously wanted her to fully recover before starting, we were anxious that the delay would reduce the effectiveness of her treatment.
Tuesday, 24 June
Olivia began her treatment today with a vomit. I think because she had been handling the treatment fairly well, we forgot to give her some anti-nausea medication that morning. The nurses quickly gave her something and she was fine after that.
I spoke to Olivia’s doctor regarding the bad mucositis she had after her first round of chemo. I certainly didn’t want to see Olivia suffer through that again. She prescribed some antibiotics as a preventative measure. She said that it seems to work in some patients and doesn’t in others. It’s definitely worth a try.
The week seemed to go fairly smoothly and as usual, James and I had to come up with 101 ways to try and amuse the girls in a hospital bed. Luckily, we had a bit of help from the play and music therapists, as well as the hospital school teacher who dropped off some activities for Olivia.
Today, I also launched ‘The Olivia Lambert Appeal’ to raise money for neuroblastoma research at the CCC&BD (Centre for Children’s Cancer and Blood Disorders) where Olivia has been undergoing treatment. It is being done through the Sydney Children’s Hospital Foundation so any donations are fully tax deductable. We have established a fundraising web page at http://www.everydayhero.com.au/Olivia_Lambert. If you wish, you can make a donation or find out details about our new website which is coming soon. We would really appreciate everyone’s support. The 60 Minutes story is the catalyst for our fundraising efforts. Obviously, it is a cause that is very close to our hearts and the only way to find a cure is through research. This is the most aggressive cancer a child can have and we want to be able to help improve survival rates. Please help us if you can. We thank you for your support.
JULY 08
Wednesday, July 2
Mum and Dad came up to Sydney on Wednesday to spend the day with us. James and I managed to get in a couple of hours of breathing space. We decided to send Sarah back to Canberra with Mum and Dad as she wasn’t sleeping well at RMH. In fact, the night before we put her to bed at 8 and she still wasn’t asleep when I went to bed at 11! This whole experience is tough for Sarah as well but overall, she was a very well behaved little girl.
Friday, July 4
We headed home on Friday afternoon, immediately following Olivia’s last dose of chemo. Luckily, we were able to arrange for Olivia to have her GCSF injection in Canberra the following day.
Saturday, July 5
Mum and I headed off to the farmer’s market to scour around for organic food. I’ve been buying mostly organic lately, particularly fruit and vegetables, as well as meat.
James and I took Olivia to Canberra Hospital to have her injection. She was very scared. She has it in her leg and it is very painful. The nurses were fantastic and although Olivia cried, it was over and done with in no time. We then took her to see Kung Fu Panda, which she really loved (Sarah stayed at Mum’s as she’s a bit too young for the movies).
Monday, July 7
Olivia managed to get to preschool for Monday and Tuesday and again, she had a great time. She has a lovely bunch of little friends, in fact, the whole preschool group is great. I have had a lot of support from the preschool mums and Oli’s teachers. They are such a wonderful group of people.
I would also like to take this opportunity to pass on our heartfelt thanks to everyone who has supported our fundraising efforts by either making a donation or spreading the word to others, as this has generated further donations and raised awareness of neuroblastoma. We are so grateful and have been incredibly moved by your support and well wishes. Thank you!
Wednesday, July 9
On Wednesday, Olivia had a blood test. I took Olivia to see the chiropractor in the morning. She recommended a good probiotic/colostrum supplement to possibly help with the mucositis and potentially boost her immune system. Olivia now takes that twice a day, some herbal drops three times a day, Bactrim, several times a week and Ceclor everyday (the latter two being antibiotics).
I took Olivia to see a GP (not her usual doctor) to get a script for some antibiotics that might help with her mucositis. I also mentioned that Olivia was feeling rather hot and as it turns out she had a temperature so it was off to hospital. We raced home to pack. Olivia’s blood counts were also low so she would require some blood transfusions, as well as antibiotics for febrile neutropenia.
We ended up staying in hospital for a total of four nights this time round. The hospital stays were really starting to get to me. I felt exhausted. I can only imagine how Olivia must have felt, though she didn’t show it. Again, she just seemed to take it all in her stride and seemed quite content throughout the duration of our stay. We did manage to sneak her down to the play room when the other kids weren’t around – she loved that! Anndrea, the play therapist, brought in a massive plasma TV for Oli to watch all of her Harry Potter DVD’s on. She was also able to choose from a wide range of other DVD’s Anndrea gave her.
Olivia’s neutrophils seemed to recover a little more quickly this time which was unexpected. Given our long stay in hospital last time, we thought we’d be in there for much longer this time. We were relieved.
During Olivia’s hospital stay, I visited a reasonably well known clinical biologist for dietary advice for Olivia (I think I may have mentioned this earlier in the blog). He has spent years studying the effect of our diet on our immune system. He adopts an immunological perspective to eating, rather than a nutritional one. He was able to tell me about the best foods to eat to boost our immune systems and what to avoid or foods that weaken our immune systems. He had a wealth of information, in fact, it was all very overwhelming. What he said made a lot of sense to me but it completely contradicted everything I knew and understood about food and what was available in the shops. He advocated that any type of grain impaired immune function and that includes things such as wheat, corn, rice, etc. etc. He believes that any person who has an autoimmune disease, including cancer, should have a grain-free diet. That leaves me with the dilemma of what to feed Olivia (and myself, given my history with cancer). He suggested that I feed Olivia fat. He is not so convinced that saturated fats are that bad. According to him and other leading nutritionists, the food pyramid that we have all come to know is completely wrong and it is the reason why there is obesity epidemic. Apparently, we should be eating the least amount of breads, cereals and grains and much more meat, eggs and vegetables. Fruit is also not as good as I’ve always believed it to be. It is full of fructose (the natural sugar found in fruits) and that weakens the immune system. I was also told that they have defense chemicals in them that we shouldn’t be consuming. The theory is that all plants have defense chemicals to ward off pests so that they are not eaten. If plant foods are not eaten when ripe (meaning they are picked prior to ripening), the defense chemicals (also called lectins) remain and if we ingest them, they cause problems with our immune system. This is all very confusing and it is impossible to explain all of it.
I have been trying very hard to change our diets and adopt this grain-free plan but it is proving to be largely impossible. Not only has it been creating a great deal of stress for me (and stress is also likely to be another cause of cancer as this also severely weakens the immune system) but it is no fun putting Olivia through all of these changes. She is not very open to changing her diet, particularly since she is an extremely fussy eater at the best of times. I have found it to be a huge, virtually impossible challenge trying to prepare healthy, organic, grain-free meals and snacks that also have a degree of flavour and that the whole family enjoys.
I have to say that Olivia is fairly responsible when it comes to eating in a healthy way. She knows that she has to cut down on the junk food. In fact, I don’t consider her to eat much in the way of unhealthy food. She knows that too much sugar isn’t good for her and most of the time, she tries hard to make healthy choices. Although we were told to eliminate bread from our diets because of its high grain content, we decided to experiment with some different types. I tell you what we must have gone through a hundred different varieties of bread, whilst trying to find one with minimal grain content and actually tasted reasonably good. That was exhausting!
We’ve now made the decision to moderate what we eat. For example, we’ve cut out the junk food and only use it as an occasional treat. We are continuing to eat organic produce when possible and also eating more meat with vegetables for dinner. We are trying to cut out grain foods where we can. Breakfast is still a bit of an issue as Olivia doesn’t really enjoy anything but cereal, namely Weetbix with fruit. I’ve tried out buckwheat pancakes, French toast, eggs, etc but failed every time. I’ve decided not to push the issue and just let her enjoy her food. We recently invested in a $450 ‘living enzyme’ juicer as we believed there were wonderful benefits in drinking a range of freshly squeezed juices. You can only imagine our frustration when we were told that we should be eating less fruit! Arrgh! The frustration. It was all becoming a bit too stressful for everyone and it’s just not worth it. Because of all the stress, the food then becomes the lesser of two evils. Besides we all enjoy our food so much so the best compromise for us is to eat in certain foods in moderation.
Thursday, 10 July
Olivia had a blood test this morning and her results showed that her platelets were borderline low and her GP felt that it wasn’t necessary for her to be transfused.
Friday, 11 July
I was concerned that Olivia may need a platelet transfusion given she was going to a birthday party at Kid City tomorrow. Any falls, bumps or bruises could prove to be dangerous for Olivia. I rang the outreach nurse who was then going to consult with the doctor.
Olivia’s little friend Jessica came round to play in the afternoon. About 10 minutes after her arrival, the nurse called back to say that Olivia required platelets. We let them have a play for another half an hour, then, unfortunately, Olivia had to say good bye to Jessica and we had to head over the hospital for the platelet transfusion. Luckily we made it back home before bed time.
Saturday, 12 July
I took Olivia to a joint birthday party at Kid City this afternoon. Happy 5th birthday to her little friends, Bri-b and Ella. Olivia had been looking forward to the party all week and would not stop talking about it. She was so excited. It is always a risk for us to send her to these things, preschool, parties, etc because she is highly susceptible to infection. However, because of our situation, we have to consider her quality of life. We know how much happiness all of these things bring to her and to us, it is paramount that she enjoys every second of her life.
She had an absolutely fabulous time at the party and loved spending time with all of her friends. It is such a bittersweet experience for me seeing her having such a great time whilst knowing how very sick she is.
Sunday, 13 July
We decided to drive up to Sydney early Monday morning so we could have an extra night at home with Sarah, sleeping in our own beds. Given that we are always very anxious during scan weeks (particularly this one), and Sarah seems to pick up on our emotions, we decided to leave her behind with my parents.
Monday, 14 July
We left early Monday morning for Sydney. We called Nuclear Medicine on the way up to confirm that there was a referral for Oli’s bone scan. As usual, there wasn’t one. Luckily, they chased it up for us. Oli had her injection for the scan as soon as we arrived at the hospital. After that we were able to take some time off to go to an organic shop in Bondi Junction. As expected, Olivia didn’t like any of the healthy food on offer for lunch, except the chocolate cake! This whole healthy eating thing is proving to be almost impossible, with Oli being such a fussy eater. We returned to the hospital, where Olivia had her bone scan. As usual, she was so very still and patient.
We weren’t due to see her doctor until that afternoon, so we took advantage of the time off beforehand to take Oli to the park down at Coogee Beach. She loved climbing the huge conical shaped rope structure and with an anxious dad following her up, she managed to climb all the way to the top with the big kids. Luckily we called her doctor before leaving the park, as she was running very late. In fact, when we arrived for our appointment over an hour after our scheduled appointment, Oli’s doctor asked if she could see us the next day.
Tuesday, 15 July
Olivia was scheduled to have her CT scan this morning. I called CT prior to her booking as I was concerned that she wouldn’t be able to drink the contrast before the scan as she was meant to be fasting for her bone marrow aspirate. To my disappointment, they informed me that there was no booking for Olivia nor was there a referral. Needless to say, James and I were not happy. According to Olivia’s doctor, she personally phoned and faxed them, but something obviously went wrong somewhere. The CT scan area is definitely one of our least favourite areas in the hospital – nothing ever seems to go smoothly! Fortunately, they were able to juggle another booking and fit us in after Olivia’s MIBG scan on Wednesday. However, we were hoping to head home at this stage. We were now also on a tight timetable and had to rely on Olivia lying perfectly still for the MIBG scan in order to make it to CT on time (if you move during the MIBG scan, the pictures have to be taken again and this isn’t good if you’re 15 minutes into a scan and they have to start again!!).
Since we no longer had a scan to go to and our next appointment wasn’t until 11.30, we took Olivia to a shop called Fairyland in Mosman. I’d shown Olivia the Fairyland website before we left. She kept telling me that she really wanted a fairy dress to add to her collection of a hundred others! So we had a quick look at the fairy dresses they sold online. Olivia agreed with me that they were all so beautiful but one particular dress caught her eye. And, of course, it happened to be the most expensive dress in the shop. It had ‘rainbow colours and rainbow flowers’ on it. She fell in love with it and as much as I tried to steer her away from it, she kept going back. How could James and I say no! After all, she deserved it. She deserves to be the most beautiful rainbow fairy the world has ever seen! She was so excited, however, when we arrived at the shop, they didn’t have any in stock and we had to specially order it for her. She can’t wait to get it, hopefully, next week. She only wanted the fairy dress and nothing else. Of course, we couldn’t leave without getting something special for Sarah. We got her a gorgeous fairy teddy bear. For those of you who don’t know, Sarah is teddy bear mad. She goes everywhere with them and loves them all to bits. In fact, she conducts soft toy audits in the middle of the night and calls out for James or myself if one of them is missing. We usually find that she’s lying on top of it.
We headed back to hospital for Olivia’s MIBG injection at 11.30. We then made our way up to C2North for Olivia’s bone marrow aspirate and a clinic appointment with her doctor. Her doctor seemed to be happy with how she was looking and pleased that she tolerated the last round of chemo reasonably well.
Olivia didn’t go in for her aspirate until quite late in the afternoon. She was an excellent girl, given she hadn’t eaten a thing all day. She didn’t complain and waited patiently until it was her turn. However, she was very tired and sleepy.
Olivia slept briefly after she awoke from the anaesthetic. When she woke, she still seemed very tired but not at all cranky (which is what we’ve come to expect). When we took her back to Ronald McDonald House, she just wanted to have a quick dinner and go straight to bed. We noticed that she did feel quite hot, though we had forgotten our thermometer and she told us that she felt okay. Just before 10pm, she woke up and we noticed that she still felt pretty hot. We managed to borrow a thermometer, which confirmed that she did have a fever. This meant a late night dash to the emergency department and a likely stay in hospital for a further 2 days, delaying our planned return home. We weren’t actually admitted to the ward until around 1am. This was C2W, the ward where Olivia spent most of her previous treatment, and the ward we were desperately hoping to avoid it this time round. It always brings back bad memories. I stayed in hospital with her overnight and didn’t get much sleep at all. It is fairly typical in hospital to fall asleep and soon be woken again by beeping machines or nurses. It can be torture.
Wednesday 16 July
Olivia’s fever quickly subsided and the doctors allowed us to go to our MIBG and CT scan appointments. Poor Olivia was so exhausted by the lack of sleep and by the fact that she had to lie so completely still for the scan. She had a couple of moments where she cried whilst in the MIBG machine but luckily, they only had to redo a couple of the shorter scans. Overall, she remained very still and made it through more than two hours of scanning. We then rushed off to the CT scan, where we ended up waiting around for a while. By now it was apparent that Olivia was coming down with a cold.
60 minutes called today to tell us that our story will be going to air this Sunday. That was a relief, as we had been told earlier in the week that they may run a story on the Pope instead. We saw the first ad for the show that evening and found it to be very confronting. Watching the full story is going to be very emotional for us, given that we don’t really know what will be aired. That may sound strange but a lot of footage was taken of Olivia with Peter Overton, which we haven’t actually seen. Also the narrative, editing and music will undoubtably produce a story that we will find very moving. Hopefully, a lot of other people will also be extremely touched by Olivia’s story.
We pleaded with the doctor to let us go home this afternoon but he strongly advised us to stay at least another night to see if her blood cultures shows any evidence of infection. Due to Oli’s cold, we had to be moved away from the oncology ward and were relocated to an isolation room in the pediatric surgical ward. James stayed overnight and was soon reminded that babies, particularly sick ones, can cry a lot at night.
I found today very difficult and I was very teary. It wasn’t anything specific that upset me but rather this whole experience was beginning to take its toll on me. Certainly, being incredibly tired and in a zombie-like state, didn’t help. I am completely drained on so many levels and wondered how much longer I could keep up with this. I don’t know how much longer I can watch Olivia suffer through all of this treatment. It’s so unfair. Not only am I exhausted but my body sometimes feels like it’s falling apart (usually, only when I have time to stop and think about it).
Every time I looked at Olivia, I couldn’t contain my emotions. She would immediately cuddle me and comfort me with words like “It’s okay, Mummy” or “It doesn’t matter, don’t worry”. This beautiful girl has to go through so much yet she is the one who is comforting me! She’s amazing. Again, she shows such incredible maturity and strength. It breaks my heart.
The other thing I find terribly difficult is not being able to see an end in sight. We live day to day and don’t know what’s going to happen from one day to the next. At least with the previous treatment, we knew what was in store for Olivia and when all of her treatment was likely to end. We could estimate when we might be able to go home and get on with life. In this situation, there are so many unknown factors – it is completely unpredictable. I have never craved ‘normal’ life as much as I am now. I want it so, so badly and I am wondering now if we will ever have it again. I just want my beautiful family back at home, enjoying all of the wonderful things we should be enjoying. I WANT OUR LIVES BACK!!!!!!!!!!!!!!!!!!!!! I HATE THIS!
Thursday, 17 July
We were very anxious to going home today. Thankfully the doctor came around quite early in the morning and gave us permission to leave.
As soon as we arrived home, Olivia told us that she loved being in our own home so she could sleep in her own bed. Sarah greeted us with a big smile and lots of hugs when we picked her up from mum and dad’s house. Thanks Mum and Dad for taking such great care of Sare!
Friday, 18 July
Today is the day that we had been dreading for quite some time – it is the day we find out whether or not Olivia’s treatment has been working over the last few months. The crew from Mix106.3 came over this morning to take some recordings to play back next week when they start promoting our story. They are using the 60 Minutes story as a way of introducing our family to Canberra and will be seeking calls for assistance to build Olivia’s fairy garden, in conjunction with GHD, a local Engineering consultancy. Olivia loved chatting to them about fairies, especially Fairy Sparkle, the Sydney Children’s Hospital Fairy Garden and her fairy dresses.
We have been absolutely overwhelmed by the generosity of people. We have previously been very private and we do not seek to profit from this ordeal. However, we are trying to achieve something wonderful for Olivia to enjoy and a fairy garden in our backyard is just perfect. It will be a beautiful, tranquil place for Olivia to play and spend time in and to go to when she is unwell at home. We also hope to put in a veggie patch as the girls love spending time gardening and would love to grow their own organic vegetables. Unfortunately, we do not have the means to make this dream a reality and it is only through the support of Mix106, GHD and some other wonderful people that it looks like this dream will come to fruition. Whilst it was never our intention to exploit Olivia, we want to show everyone what a gorgeous, courageous little girl she is and raise awareness of neuroblastoma. Mix106.3 are also kindly assisting us with our fundraising efforts at http://www.everydayhero.com.au/Olivia_Lambert
We have told Olivia that we, along with many other wonderful people, are planning a special surprise for her. We have discussed the fairy garden with other people whilst she was around but she still seems to be completely oblivious to it all. She seems to think that the big surprise is a rollercoaster in our backyard!
By 2:30pm we were getting pretty anxious to hear Olivia’s results, so we called Olivia’s other oncologist (Oli’s doctor only works Mon to Wed). He reported that the cancer basically appears to be unchanged. The spot in her knee appears to be roughly the same size and there are no new obvious tumors. He indicated that there are some spots on her liver that are inconclusive. They are evident on the MIBG scan as neuroblastoma but apparently, MIBG is difficult to interpret in the liver. Olivia’s liver appeared to be clear on the CT scan. It will be an anxious wait to see what the next scans show.
Obviously, the best case scenario is that the tumour in Olivia’s knee would have disappeared, however, we knew that this was very unlikely. A reduction in size would have indicated that the chemo is definitely working. The doctor seemed to think that the fact that tumour had not increased in size, was most likely attributable to the chemo, given that it had probably grown quite rapidly before it was detected. However, he also pointed out that it was only a matter of time before more tumours most likely appeared. We can only hope and pray that this is not the case and that the tumour in her knee either remains stable or eventually disappears. Unfortunately, we know the reality is that this probably won’t happen, but we are never giving up and we still believe in miracles. Olivia was our little miracle when she was born so early and she will be again. We are determined to prove those doctors wrong and if we don’t, we’re going to give this cancer one hell of a fight. On the same token, it is very easy to become disheartened by this news. I once read another parent’s blog and they wrote that they felt like they were ‘going into a gun battle armed with a knife’. We just hope we will eventually find the appropriate weapon to ‘kick this cancer in the butt’.
The doctor also told us that Olivia’s blood tests results indicated that she should be okay to start her third round of chemo on Monday.
It is certainly a relief to know that the chemo appears to be doing something and that Olivia can continue treatment, in hopes that it keeps the cancer at bay. Obviously, we feared that we might hear the worst - that the chemo was not working at all and that we had no other option than to take her home. Whilst it is difficult having to watch Oli go through this treatment, it would be much worse having her at home knowing there is nothing more we can do to control the cancer and wondering how fast the cancer is spreading.
We don’t want to have to face the day when Olivia begins to complain of pain caused by the cancer. That is exactly why we can’t think too much into the future. For now, we just have to make the most of the times that we are not in hospital and do whatever we can for her.
