Category Archives: Olivia
2009 in Summary
James here. It has been a long time since our last update. I guess that we have been so busy trying to live a “normal” life. I think that when things aren’t going so well, people are more inclined to write about it, but when things are going well, people are more inclined to get on with life. Kirsty also discovered that Facebook is a convenient way to communicate with close friends.
As indicated above, 2009 was a very good year for us, particularly when we reflect on what the doctors told us after Olivia’s relapse in April 08. Last Christmas was very meaningful for us, as it was a major milestone in Olivia’s fight against the dreaded cancer. This Christmas was just as special, as we were able to enjoy it together, down the Coast, all in good health.
Although our previous entry covered the early part of 2009, I have reiterated it here for completeness.
As you can see in the photos, Olivia has grown a mop of beautiful brown curls. She is very excited about it finally being long enough to put her hair up.
Olivia’s 5th birthday in January was a fantastic fairy party in our fairy garden, with all her little friends.
Olivia was invited by the Lizzie Wagner Academy to attend a modelling course in January, which was very cute to watch. Whilst she enjoyed the course, it was evident to us that she was feeling very tired at the time and didn’t seem to be her usual bubbly self for several weeks.
One obvious side effect from Olivia’s treatment or medication is that she always tires easily. Sarah is only 3, yet it is usually Olivia who will fall asleep in the car. Thankfully it is usually easy to pick when she is tired as she gets a bit cranky or gets the tired sillies.
One day whilst waiting for Olivia to finish her modelling course, Sarah fell off a chair, bashing her head on a coffee table. She split her head open, right above her right eyebrow. She was rushed off to hospital to have her wound stitched up. In order to be sutured, she had to be sedated. She was given Ketamine which knocked her out but her eyes remained open. Her big blue eyes just stared blankly into space – it was bazaar. Sarah is definitely the adventurous type, has always been fearless and is yet to learn that if she does certain things, she is likely to get hurt. Olivia on the other hand has become much more cautious.
Although Olivia spent a lot of 2008 in hospital, we were so proud that she was able to finish the year at preschool. We had put Olivia’s name down in 2007 at Burgmann Anglican School which is close to our home, but weren’t expecting her to get in for many years, given that she was almost 200th on the waiting list. We were quite surprised to be offered a spot at the school’s new campus in Forde, only weeks before school was due to start in 1st term.
It was such a proud moment to see Olivia dressed up in her new school uniform, starting her first day at school. We were a little apprehensive about how she would adjust at a new school, given her hearing problems and probably having spent more time associating with adults than kids her own age. Thankfully, she coped very well and simply loved going to school. It was great to see her making friends and coming home every day with beaming eyes and a big smile on her face.
Sarah also commenced pre-preschool or “pee-pee-school” as she used to call it. A special thanks to Sally at Kidstart who generously donated the place for Sarah. Although Olivia is the one who endured all the treatment in hospital, Sarah also missed a lot of her early childhood. She never went to a mother’s group or associated with other kids her own age. She simply loved going to Kidstart and would always ask, “Am I going to Pre preschool tomorrow?” She was so proud on the occasions that she was awarded the Star of the Day trophy (or trollphy, as she called it).
Sarah is a very active little girl, who absolutely loves climbing, hanging from various things and doing somersaults. She’s also, physically, very strong. We decided to enrol her in a gymnastics program which she absolutely loves and will continue with this year.
Having done a little dancing before she relapsed, Olivia decided that she would like to try ballet lessons. She seems a natural performer, as she never stops dancing, skipping or singing! We can’t remember the last time we saw her walk without skipping. She is just such a happy girl – we cannot help but to think that this has played a very big part in her amazing recovery. Even as I write this, she is singing and dancing around the room. I’m just glad that she doesn’t have my singing voice (aren’t we all – note from Kirsty)!
Both girls continued with swimming lessons this year and made noticeable improvement in their swimming ability. Olivia is particularly comfortable swimming on her own and is always keen to show off her swimming ability. A special thanks to Debbie at Aquatots who kindly donated the lessons to Olivia.
Mid year, we made a spontaneous decision to welcome a new member into our family. Ellie is a gorgeous golden Labrador puppy who just loves having her tummy rubbed. She was actually the second puppy we bought! We had placed a deposit on a puppy in Gundagai, but some further investigation revealed that the seller had lied about being a breeder of champion dogs and did not have any paperwork for either parents. Unfortunately, with Labradors, hip dysplasia can be a major genetic defect, so good bloodlines are crucial. After the breeder admitted to being a liar, we were faced with the awkward situation of having to tell the girls that they did could not have the puppy that they had fallen in love with.
We soon discovered that it is not easy to find a female golden Labrador puppy when you really want one. After searching all day on the internet, we eventually located one near Mittagong. It just so happened that I was travelling to Sydney for work the next day, and immediately fell in love with this puppy that was just such a sook. The owner agreed that she was the pick of the litter, and was surprised that no-one had actually placed a deposit on her. Needless to say, that weekend, we picked up our new puppy.
Ellie is such a gorgeous girl, and the best thing that we could have done for Sarah. As a result of being away from her mum for extended periods during both of Olivia’s treatments, she had become very clingy to Kirsty when at home. Sarah has always been a huge animal lover and found herself a best friend in Ellie. She just loves giving her cuddles and often forces Ellie to lie next to her on the floor.
Ellie seemed to only take a matter of weeks to grow into this huge dog. Although she loved to play fight with me, she was always very gentle with the girls. In fact, she was very tolerant of some of the things that Sarah did to her! Having gotten into big trouble for cutting her own hair earlier in the year, Sarah decided that she would be much better off cutting Ellie’s hair instead!
We hired the DVD Marley and Me just before getting Ellie and thought to ourselves that our dog would not be anything like that. As it turns out, she is not far from being a Marley. It never ceases to amaze me the things that Ellie will chew or eat! Our once luscious back lawn has gone from being uniform green to patchy dead grass littered with bits of chewed toys and other objects. Luckily, we had our fairy garden anniversary gathering before Ellie did most of the damage to the lawn. I hastily fenced off the fairy garden, before Ellie could chew too many fairies. In one short year, the fairy garden has really grown into a beautiful established garden.
Our good friend and Olivia’s godmother, Bec Rudd, again put in a great effort this year to complete the Sydney City to Surf Run, raising funds for the Olivia Lambert Appeal to support neuroblastoma research at the Sydney Children’s Hospital. Thanks, Bec!
Ben Fuller and his team of fellow cycling enthusiasts also once again completed the gruelling Coast to Kosi bike ride, donating the money raised to the Olivia Lambert Appeal. Thanks, guys!
We must give special thanks to Emilia Rossi, owner of Carmen Steffens in the Canberra Centre, for generously organising a fashion fundraiser at the Audi Centre in September. It was a great night of fashion and entertainment that further raised awareness of neuroblastoma and raised funds for the Olivia Lambert Appeal.
We were deeply saddened to meet a young woman named Kristy on the night who had recently lost her husband to neuroblastoma only 6 months after being diagnosed. He was only aged in his early thirties. Neuroblastoma in adults is extremely uncommon.
When Olivia first relapsed, we asked her what her dreams were. She said that she really wanted to go to Disneyland. Unfortunately, the high cost of travel and her treatment schedule meant that we were not able to make her dream come true at that time. With Olivia’s ongoing good health this year, we were able to reconsider this holiday. It seemed meant to be, as the same day that I got an email advertising return air fares for less than half the usual price, Kirsty called me at work to tell me that she was going to a travel agent to book the Disney holiday. We booked the flights that night. This was the start of a lot of time I spent on the internet trying to plan the holiday to make it truly a dream holiday. We would like to pass on a special thanks to Kirsty’s old housemate Jackie and her colleagues at the law firm for putting on a movie premier to raise some spending money for us.
Our much-anticipated dream holiday almost came to a very abrupt end before we even left Sydney. After we drove up to Sydney and checked in our luggage, Olivia began to complain of a sore tummy. She had a welcome distraction when Fairy Sparkle made a special trip to the airport, just to say farewell. However, Olivia was not herself. She’d lost her appetite and needed to be pushed around in the stroller (thank goodness we decided to take it). Once we boarded the plane, we were told that there would be a delay as they were waiting for passengers from a connecting flight. During that 2 hour wait, Olivia developed a fever and was feeling very unwell. She was unwell enough to warrant the pilot coming down to see if Olivia could travel. He didn’t seem overly concerned and luckily, he left the final decision up to us. Despite our poor track record, we decided to continue, and a sleep. Overall, the girls handled the flight very well.
We arrived in LA around dinner time. We checked into our hotel and had a late dinner. Thankfully, we had a good sleep in the next day, followed by some time by the pool and a quick spot of shopping. We found a Disney shop at the local mall, where Sarah fell in love with two big soft Ariel and Sleeping Beauty princess dolls. She has taken them to bed with her every night since.
The girls were very excited to see that we had views from our hotel room overlooking Disney and could see the nightly fireworks from our room – not bad for US$88 a night!
We were really worried about Olivia getting sun burnt whilst queuing for rides at the theme parks, as she is supposed to avoid exposure to the sun when she is on her medication. Luckily, the weather was in the low to high 20’s, not 30’s as it had been the previous weeks. Before we left Australia, we were told that we would be entitled to a special access pass that would mean that we wouldn’t have to wait as long in lines for the rides. We were a bit surprised to be given a wheelchair pass, as whilst it sometimes helped us get onto the rides faster, most of the times it just helped us avoid stairs! Most of the rides had quite long waits – I could imagine that it would have been awful a few weeks prior during school holidays and in the severe heat!
Olivia continued to demonstrate how much of an adrenalin junkie she is and got very excited about going on all the rides. She really loved the Nemo submarine ride, Alice in Wonderland and the Mountain rail road (a rollercoaster). We queued for over an hour at the Princess Forest Walk, not actually knowing what it even was! When we got inside, we were realised that it was a meet and greet photo opportunity with 3 different princesses. Sarah desperately wanted to meet Ariel, but unfortunately, she wasn’t there at that time. The thought of having to queue for another hour was not very appealing. There is a restaurant called Ariel’s Grotto, where you can dine and meet Ariel, but it was a very expensive set price.
Sarah simply adores Ariel and had to have an Ariel dress up costume. Despite it being quite expensive, we could see how much it meant to her and simply couldn’t say no to her. She wanted to wear it every day after we bought it.
At both parks, there is a parade each evening where most of the Disney characters make their way through the park singing and dancing. There were also lots of photo opportunities with different characters throughout the day. Each night at 8pm there was a fireworks display with a Halloween theme based around the Disney Castle. This really was a spectacular experience.
Luckily, our first special needs guest pass was only valid for one day, as when Kirsty went back to renew it, she was told that we had been given the wrong pass and should have been given a front of the line pass. This reduced our wait time significantly.
When we first went to California Adventure Park, Olivia was dying to go on the California Screamin’ rollercoaster. She was thrilled to see that she just met the minimum height requirement, though we pointed out that due to her being so tall for her age, she is probably a lot younger that most people who meet the height requirement. She was still determined to go on the ride so we reluctantly agreed. The rollercoaster initially accelerates at a phenomenal rate, which is pretty scary. After the initial loop the loop, Olivia started to cry. By the end of the ride, she realised that she wasn’t old enough to go on the ride. Luckily, there was a kid’s rollercoaster and a ferris wheel that she really enjoyed.
We got to meet lots of Disney characters and have our photos taken. I think that we ended up taking just under a thousand photos – thank God for digital cameras!
On our last day at Disney, we were determined to meet Ariel. Despite asking several staff members when Ariel was likely to appear, we were just told to keep coming back. After several wasted trips (generally from the other side of the huge park), I was eventually told by a staff member that there is actually only one Ariel and that she spends meal times at her restaurant, which meant that she might only be there mid afternoon. Having just put the girls on the train that takes 15 minutes to go around the park, I ran over the Princess Forrest walk for about the fourth time and saw that Ariel was there. Thankfully our mobile phones worked for once and the girls arrived in time. Our front of line pass meant that we could get in straight away. Ariel really played the part very well and had the girls mesmerised. They loved seeing her and getting their photo taken. It wasn’t until we got home that we realised that Olivia was sitting with her legs apart showing her undies most of the time, and our camera was still on night mode from taking photos of the fireworks the previous night! Luckily we had a pass for the Official Disney photographs. They certainly weren’t cheap but it meant so much to us all to have the photos.
The combined Disneyland and California Adventure Park are huge. Thankfully, we bought a California City Pass that included entry into most of the big California attractions, including a 3 day Disney entry Pass. Even with a special needs guest pass we were still not able to try every ride in the 3 days that we were at Disney, although we did go on some of our favourite rides several times. I expect that without the special pass it could easily take 5 days to go on most of the rides at both parks.
After our stay at Anaheim, we drove down to San Diego for a few days. Unfortunately, the weather had turned to drizzle, so decided to defer our day at Legoland and instead opted for some shopping at Carlsbad, an upmarket discount outlet. We were amazed at how cheap most things were, particularly with the strong Aussie dollar.
Having skipped Legoland meant that we would have to cram San Diego Zoo and Sea World and into one day. Luckily, the zoo had a bus that transported people around most of the animal enclosures in about an hour. We then took the cable car across to the other side to see some the polar bears and some of the other main attractions. It was quite evident that Sarah is more of an animal lover than Olivia. Olivia just wanted to get to Sea World so that she could go on the rides.
As soon as we arrived at Seaworld (mid-afternoon), Olivia spotted the rollercoaster and was dying to try it. Fortunately, we were once provided with a front of line pass, which enabled us to try a lot more rides in the time that we had. As expected, Olivia absolutely loved the Journey to Atlantis roller coaster ride that included two drops into water. Sarah seemed quite happy to sit and watch the people on the roller coaster getting wet, with a Churros (a long, doughnut-tasting stick) in hand. She particularly enjoyed firing the water cannon at people on the ride (including mum) as they went by.
Unfortunately for me, Sarah equally enjoyed soaking Olivia and I when we later went on the rapids ride. There were a lot of other rides to keep the girls amused, so that we didn’t actually see a lot of the animals until late in the day. After trying most of the rides, we sat down to watch the Shamu killer whale show. It was pretty amazing what they can train a whale to do. I’m just glad that we didn’t sit in the lower seats, where everyone got soaked.
As we were leaving SeaWorld, we bought Sarah a soft dolphin toy, which she named ‘Wavegirl’ (in an American accent). She has also shared her bed with her every night since.
After two nights in San Diego, we headed back to LA, stopping at Carlsbad to go to Legoland and then back for some more shopping at the factory outlet. Legoland was a real surprise theme park, with an aquarium, lots of rides and some very cool Lego creations.
Our last two days were spent staying at Universal City, across the road from Universal Studios. This was definitely more suitable for kids older than our girls. As an example, at Disney and Legoland, there were cute Halloween pumpkins, whereas at Universal Studios there were body parts, corpses and blood on display. The Water World show was very over the top and didn’t really appeal to any of us. The girls did, however, like the Simpsons. Olivia loved the Simpsons simulated rollercoaster and Sarah liked having her photo taken with Bart and Lisa, even if Bart did try to take her new Dora doll!
Surprisingly, one of the girls’ favourite characters during our holiday was the Bubba Gump Shrimp, who paraded around outside the restaurants of the same name.
On our last day of our holiday, we had booked a tour of Hollywood and Beverly Hills, though (Kirsty) decided at the last minute (3am) to cancel as it would be very boring for the girls. We decided that we would be better off driving part of the tour ourselves before going to Knotts Berry Farm. Ultimately, we were relieved that we didn’t waste our money on the tour, as there is really nothing to see in Hollywood – it is actually a bit of a dump. As it turned out, we never made it to the theme park after getting caught up shopping at the Farmers Market and The Grove.
We were sad when our holiday ultimately came to an end. Overall, it was an amazing holiday, though we would have loved to stay for at least another few days. On the one hand, it was very tiring for the girls, and on the other, they were having such a great time that they just wanted to keep going.
Ever since we returned home, the girls keep asking, “when we can go to Disneyland again?”
Not long after we returned from our holiday, we had a horror couple of weeks, which included 3 cancer scares.
Kirsty found quite an obvious lump that had her extremely worried. Kirsty consulted her GP, who agreed that that there was genuine cause for concern, and recommended that she have some scans done immediately. Unfortunately, she had to wait a couple of agonising days for the scans. Thankfully, the scans revealed that the lump was not anything to worry about.
As tempting as it is to obtain a quick diagnosis, we have learnt not to rely on the internet as a source to diagnose problems, as it always seems to indicate the worst case diagnosis. In fact I’m pretty sure that someone with a headache could be convinced that they have a brain tumour, based on what can be found on the internet.
Olivia had been practicing for her ballet performance ‘Sleeping Beauty’ with the Canberra Festival Ballet School for some time and was getting very excited about the big day. After getting over a few hurdles such as her hair not actually being long enough to put in a bun, she was ready for the performance. We brought Sarah along to watch the big performance and were very impressed with the professional standard. Although it was a late night for the girls, it was well worth it when Olivia and her classmates stepped out for their part. Although the younger group that Olivia was part of spent most of the time in the background, thankfully, Olivia’a height meant that we were able to see her. She looked gorgeous dressed up, with her hair and makeup done, and she danced beautifully.
After Olivia’s performance ended she wanted to stay behind and watch the rest of the performance. I took Sarah home and put her to bed. Not long after that, I received a phone call from Kirsty who was absolutely beside herself. During the performance, she had been gently running her fingers along the back of Olivia’s neck when she noticed a lump. It was only a small lump, but nevertheless, a lump, in Olivia’s situation, could potentially be a very serious issue.
The next day we took Olivia to the GP who ordered an ultrasound. Much to our relief, the report indicated that it was likely a lymph node, albeit in an unusual location. We were told to keep an eye on it and that it should disappear in a couple of weeks which, thankfully, it did.
It was only a few days after Olivia’s ballet performance that she began complaining about a sore knee. One night she just woke up screaming in pain not long after she went to sleep. We noted that she also had a slight temperature and were advised to take her straight to casualty. They examined her knee and did an x-ray, though were unable to find any obvious cause. They noted that there were some rings on the bone at the growth plates. This is likely attributable to her growth stopping and recommencing, most likely due to her treatment. This was also noted when she had her ankle x-rayed some time ago. We are also aware that her pituitary gland (which controls growth) was subjected to radiation during her initial treatment. These bone abnormalities were not thought to be likely to cause pain, which still remained unexplained. There was also a slight anomaly in her blood tests. During the early hours of the morning, her knee pain seemed to subside and we were eventually allowed to go home.
We were a little surprised to be called back to hospital the following day for more tests, partly to do more investigations on her knee, including an MRI, but also to double check some anomalies in her blood test results. Luckily, we were able to get gate leave and sleep at home that night.
The MRI was all clear. The doctors still didn’t have an explanation as what was causing the pain, though didn’t think that it could be cancer related. I certainly got the impression that no one knew exactly what was actually wrong with Olivia’s knee when the Sydney doctor asked me what I thought was wrong with her! They still wanted to do some more scans, but given that Olivia was due to have scans a week later in Sydney, we were better off waiting until then.
It seemed somewhat strange spending many hours back in hospital. Even though it was nothing in comparison to what we have done in the past, we just hoped that we would never have to go through that again.
As Olivia was mostly treated in Sydney and there are very few neuroblastoma patients treated in Canberra Hospital, the Canberra doctors always refer to Sydney for guidance. We soon discovered that this could be a benefit and also a hindrance, as it could take hours for them to get direction from Sydney. On one day, we really didn’t achieve much more than a having a blood test. Once the Canberra doctors had finished with us, we were just waiting around for Sydney to let us go home. Olivia was quite bored and it was getting late at night. I realised that the best way to get the Canberra Doctors to chase up the Sydney doctors was to sit Olivia at their work station, continually complaining that she was bored and wanted to go home. It worked because we were on our way shortly after.
Strange as it may seem, but we were actually quite relieved when Olivia later complained of her other knee hurting, as this was more consistent with joint pain than cancer.
Olivia continues to have scans in Sydney every 3 months. Just as we were about to leave for Sydney (the week before Christmas), we received a phone call advising us that one of her scans would have to be rescheduled as the pilot had refused to fly the radioactive MIBG from Japan. Whilst they have the right to do this, we like to think that if Olivia can have the MIBG injected into her body, then the risk to anyone onboard a plane carrying it is extremely low, especially since it is transported in a tightly sealed lead cannister. Whilst this was an inconvenience for us, it was more so for another family. Sadly, their daughter had just relapsed and they were waiting for the MIBG scan results to determine the extent of the relapse. In fact it was a horrible week for neuroblastoma patients, with another little girl also relapsing. That was 2 out of 6 or so kids that we know with neuroblastoma. We wish them all the best in their battle against this dreaded disease, and hope that Olivia can provide some inspiration and prove that there is hope for relapsed patients.
Rather than make two trips to Sydney we decided to try to reschedule the CT scan for the following week as well. This required us to quickly rearrange all our social and medical appointments for both weeks, at the busiest time of year.
Olivia was very tired for her MIBG scan and found it very hard to lie still for so long. We tried to reassure her and ensure that she didn’t move or else they would have to start the scan again.
Although we continued to be amazed at how well Olivia has done, we have always found the scans to be very daunting. There is probably no other way to describe our feelings during the scans other than to say that we very anxiously wait to be told whether or not Olivia is likely to go on living.
Thankfully, her scans were once again all clear. There has been some MIBG uptake in her liver for some time, though this was always considered a false positive as it was not evident in the CT scan. The uptake in her liver changed a little this time but is still considered to be okay. This is the best Christmas present that we could ask for!
We saw Olivia’s oncologist and discussed her knee problems. The bottom line is that they don’t really know what is wrong with her knee. It is most likely a side effect of either her treatment or medication. We noticed that one of the potential side effects of her tablets is joint pain. They cannot be sure, as Olivia was on her medication for 11 months after her first treatment and then for over a year after her relapse. The recommended course is only 6 months, and this is the duration of all known studies relating to this medication. As there are so few kids who have survived a relapse for as long as Olivia has, there is virtually no data about the long term side effects of her medication.
We suspect that the medication is having a cumulative effect on Olivia. The medication is actually used to treat acne in adults, via means of chemically peeling the outer layers of skin. Somehow, they also concluded that this medication has a way of maturing neuroblastoma cells into a benign form. Olivia initially tolerated the medication relatively well, provided we moisturised her every day with heavy duty balm. Though, we found that she we had to stop her last two courses only one week into the two week cycle, as she was complaining that her skin was hurting her too much. As much as we don’t want her to suffer, it is also a tough decision to consider discontinuing the medication. It is always in the back of our minds that Olivia relapsed only a few months after we stopped her medication last time.
We agreed with her doctor that we would give Olivia a break from the medication until we get back from the coast and then we would place her on a half dose for 3 months, before stopping altogether just before her next scans.
Given how long Olivia has remained cancer free, we now feel that we need to be more concerned with her radiation exposure levels, and the implications on her long term health. Over the last 3 years, she has been subjected to huge doses of radiation. Starting with her next scan, we will look to replace the CT scan with a MRI. There is a huge wait for these scans, especially if a general anaesthetic is required, so they need to be booked a long time in advance. Although Olivia managed to lie still for her recent knee MRI, we suspect that lying still for an hour and a half, without breaks, would be a bit too much for her. Accordingly, she will have to be anaesthetised. Although she never really liked waking from anaesthetics, it is definitely the lesser of two evils.
We decided that we would go down the coast for a couple of weeks over Christmas. The girls always love going in the water, collecting shells and riding their bikes. With the change in dates for Olivia’s scans, we only arrived back home late on 23 Dec. We then quickly unpacked, washed, and repacked for the coast.
Olivia had been counting down the days until Christmas for some time, so was very excited by the 24th. We had already had an early Christmas with my parents, Auntie Nean and Grammy. Kirsty’s parents were down the coast with us on Christmas and put on a huge feed for everyone. The girls were spoilt again this year with all the presents they received. It’s hard not to spoil them given everything that they have been through, though we are aware of setting a precedence for the future. Provided everything goes well this year, we will definitely have to cut back next Christmas. We got a Wii console for Christmas, which the girls loved playing. They also spent a lot of time being creative with some of the art and craft they received from Santa and grandma.
Unfortunately, Boxing Day was not a good day for us. It started with a 7am phone call from Kirsty’s dad, who had taken Ellie down the beach for a walk. Ellie was running along the beach and came across a fisherman winding in his bait. She took one look at the fish bait and helped herself to a free breakfast! When I rushed down to the beach Ellie was being held down and there was blood all over Dick’s (Kirsty’s dad) hand and Ellie’s mouth. This obviously looked very serious. It later became apparent that the blood was actually from Dick’s hand as Ellie had bitten him while he tried to retrieve the hook. Unfortunately, his attempts were unsuccessful and the hook was making its way to who knows where in her body. Once we loaded Ellie into the car, she seemed to be quite calm. Suddenly, it dawned upon us that it would not be easy trying to get a vet. Thankfully the Moruya vet had an after hours number and was willing to meet us at the clinic. An initial x-ray revealed that the hook was stuck in her oesophagus, the worst possible place – I sometimes just can’t believe our luck. The vet (along with her vet husband) tried unsuccessfully for 2 hours to remove the hook using an endoscope. Unfortunately, she did not have a video endoscope to make the job easier. After a marathon effort, she eventually conceded and told us that we would have to take her to either Canberra or Sydney for further treatment and/or surgery. We must have called over a dozen vets, and only found about 3 that weren’t closed. I called the emergency vet in Fyshwick who said that they could operate but it would cost around $2,000. This was a bit of a shock, though Ellie was such a wonderful dog that we wanted to get her the best care possible.
Partly put off by the cost of doing the surgery in Canberra and having been told that they regularly remove fish hook at the clinic in Sydney, we decided that we would drive 4.5 hours to Sydney to have a go with a video endoscope and/or surgery that night.
The vet advised us that if the oesophagus had been even slightly ripped, then he would not be able to remove the hook using an endoscope (quoted $1600 to $1900) and would instead have to operate at an estimated cost of $4,000 to $6,000. It was immediately obvious that we were being robbed blind, but felt that we had no option but to agree to proceed. Thankfully, the vet had to take another x-ray prior to proceeding, which revealed that the hook had actually dislodged during our car trip and might actually pass through her. We really were not expecting to be on our way back to the coast half an hour after arriving in Sydney, albeit $640 poorer! As we could not stop anywhere overnight with Ellie, we drove all the way back, arriving back in Tuross at 1am!
Unfortunately, our apparent good luck with the hook dislodging was not to last. After searching through Ellie’s poos for the next 6 days, it soon became apparent that the hook was not coming out on its own. We took her back to the lovely vet’s at Moruya who opened up her stomach to remove the hook. It was somewhat funny, but also equally frustrating that the hook had become entangled in all the stuffing and material from her bed and other objects that she had eaten, producing this big ball that would not come out on its own accord. Although the last thing that we need this time of year, we were relieved that the Moruya vet was in this profession for the love of animals, and charged only slightly more for the actual operation than the vet in Sydney charged for telling us she didn’t need an operation (at that point in time). Needless to say we now have pet insurance!
Ellie seemed to recover well from the surgery and would get upset when we would go for bike rides without her, as she was required to rest for a few days to recover.
The girls spent almost every day going in the waves, using their boogie boards and collecting shells. Sarah initially liked going on her boogie board, until she fell off a couple of times. Then she told us that she wanted to do it by herself in the “shallow water”. This meant lying on her board on the sand, out of reach of the waves. Olivia on the other hand, just wanted to go out deeper in the waves. She loved jumping over the waves (with our help) in the deep water.
As you can see, 2009 was still an indifferent year for us, but in comparison to the horror of the last four years, it was a great year. We are just praying that 2010 is even better.
May 2009
Well, it’s been a while since I’ve updated this blog or even uploaded previous journal entries. Life has been incredibly busy over the past few months. Also, I guess I haven’t been as motivated to maintain the journal as it forces me to ponder our situation with Olivia and sometimes I’d just rather not think about it. We have managed to sustain somewhat of a ‘normal’ life in that we have established a good routine in terms of school, appointments and having a family life. I should also point out that Olivia’s scans from mid-March were clear again. We were unbelievably relieved and elated. To be honest, this time last year (she relapsed April 23 last year), we really didn’t think that she would be with us today. I am so incredibly grateful to have her. Something must be working or at least helping, whether it’s the treatment she had, the homeopathics, acupuncture, chiropractic, organics, the holidays she’s been on or perhaps even some fairy magic – we’ll never know. However, I do know that we have one highly spirited, positive, brave little girl and I believe that her inner strength is what’s kept her here with us today. She’s amazing.
I have to say that the last few months have not been without stresses. Although Olivia is well at the moment, the possibility of her relapsing is a thought that constantly looms over us. Whenever she shows the slightest sign of illness, we tend to become a little over concerned. In fact, she’s been feeling a little under the weather over the past few days, loss of appetite, aches and pains, etc. Most of these symptoms have passed but she is still very lethargic. I know that she had a very busy first week back at school, plus she has been on some medication which causes joint pain and tiredness so it’s unlikely to be anything too serious. However, that concern is always there and I do have a tendency to think the worst and become rather overprotective. Having said that, we do try to remain positive most of the time. I am still of the belief that she will be okay. It doesn’t matter how many years we have had to face this beast of a disease, it is still so unbelievable to me. I know I would have a hard time believing it if it happened to us again. I don’t know if this is called denial or optimism – I think it’s the latter.
On the whole, Olivia is loving school and loving life. She is a very keen learner at school and she displays the same enthusiasm at home. She is always asking me to listen to her read (yes, she is at the beginning stages of reading) and to teach her sight words which she is always looking for when we’re out and about, on TV, in newspapers, wherever! James and I couldn’t be happier with the school – it is a lovely school community and they are very supportive of our situation.
Olivia’s hearing impairment does seem to be a source of frustration for her at school. Although her hearing aids help her to hear her teacher and other students in the classroom, they also pick up background noise which can make it difficult to hear in group situations. She told me that she didn’t like all the noise. I think she finds it all quite overwhelming and doesn’t always hear what people are telling her. It’s something we have also noticed. At times, she seems oblivious to people who are speaking to her when she is in a group setting. When we tell her that someone was speaking to her, she says that she didn’t know – it’s heartbreaking. We were concerned that this may exclude her from friendship groups at school but she seems to be coping and has formed some lovely friendships
Although Olivia is at school, I’m finding that life is busier than ever. We still have appointments each week after school, though I have managed to cut back as it was becoming exhausting for all involved! I’ve volunteered some time at the school to help out each week with literacy groups which I really enjoy as I get to see what the kids are doing and spend some time with Olivia. Sarah goes to Kidstart twice a week and absolutely loves it. She also really needs it. She has such a gorgeous little personality but we are finding that she seems to have some attachment issues with me. Put it this way, she doesn’t like to share me and is very competitive with Olivia (I should add the rivalry is shared!). She becomes extraordinarily anxious and upset at any attention I direct towards Olivia, which often leads to big tantrums and a lot of screaming. This is obviously the product of what we’ve been through with Olivia. Unfortunately, no amount of positive reinforcement and attention I give to Sarah seems to make much difference. We try many different approaches but to no avail. I have to point out that she can be just about perfect one on one.
I almost forgot – I had my routine scans at the end of February and my gosh did we have a scare!!! I had a chest x-ray and abdominal ultrasound. During the ultrasound, I got the impression from the sonographer that all was okay. I left feeling pretty confident that my x-ray would also be fine. I picked up the results later that afternoon. The x-ray report showed that there was some ‘pleural thickening at the lung bases’ and some additional lung markings compared to my previous scan. I wasn’t too concerned but since I was going to the GP for another complaint, I thought I’d enquire about the report. The GP appeared VERY concerned about the pleural thickening and immediately ordered a chest CT scan for me. She also spoke with my regular GP who agreed that this was concerning. Naturally, this sent me into a panic, not to mention the rest of my family. These doctors were seriously thinking that the cancer had returned to my lungs (one of the most common places for bowel cancer to spread, besides the liver)!!! I also, very stupidly, googled ‘pleural thickening’ which also indicated the worst – either it was asbestos fibres in my lungs or cancer! I had tried contacting my oncologist in a desperate bid for some kind of reassurance but he was unavailable. I spent that whole afternoon and evening panicking and sobbing, thinking that we couldn’t go through anything else. There is only so much a person could take. All I could think about was the girls and how incredibly unfair this was to them. I also wondered how on earth we would manage my potential cancer relapse whilst trying to deal with Olivia’s health. What a nightmare! This scare really did my head in!
I managed to get a booking for an early CT scan. I cannot describe the anxiety I felt that day – I could hardly breathe. I also managed to book in with my oncologist in the afternoon. James and I picked up the results just prior to my oncology appointment. I refused to look at the results and decided it would be best to hear it from my doctor. James and I were bracing for the worst. On seeing my doctor, I was a nervous wreck. He couldn’t understand what all the fuss was about and handed me my CT results. I burst into tears – my lungs were fine! There is possibly some scar tissue there from previous surgeries but certainly nothing to worry about. AAAAAAAAAARRRRRRRRRRRGGGGGGGGGGGHHHHHHHH!!!!!!!!!!!!!!!!!!! WHAT A RELIEF!!!!!!!!!!!!!!!!!!!!!!! How unimpressed was I with those GP’s!! I think I felt relief, joy and frustration all rolled into one. The main thing is, I was okay. My blood results were also good which can also give an indicator that cancer is present. My doctor then informed me that he didn’t see the need for me to have another scan for a year. Yay! However, I still require three monthly blood tests. I may have very well lost another 10 years of my life from that scare (geez, I must really be running out of time now!).
To conclude this update, I would like to add that James and I attended a special presentation at the Sydney branch of Mallesons Stephen Jaques in late March. Ben Fuller, one of the organisers of the Coast to Kosci for Kids bike ride, presented a short film of the gruelling ride and presented a cheque for $12,000 to the Sydney Children’s Hospital Foundation and Professor Marshall, one of the oncologists from the hospital, as well as a neuroblastoma researcher. These funds will support neuroblastoma research at the hospital. Again, we would like to pass on a huge heartfelt thanks to Ben and the team of riders for a tremendous effort and for supporting The Olivia Lambert Appeal.
I promise to make a better effort in producing more regular updates!
Also, we are currently making changes to our website and learning how to do it so hopefully, this will enable us to maintain regular updates.
Wednesday 4th February
After beginning the week with preparations for school, Olivia began her first day of kindergarten at Burgmann Anglican School, at the new Forde campus. We had a last minute offer of a place for her at the very end of last year. We were happy with the school she was enrolled in so it was a difficult decision as we weren’t planning on sending her to Burgmann until she finished primary school. We decided to send her to Burgmann as I was inspired by their orientation day. The staff were so passionate and it had good community feel to it. I knew that we would be well supported by the school should we face anymore problems this year.
Olivia had to wear her sports uniform for her first day as it was officially a PE day. She was so proud to wear her uniform – it was very cute. She was so excited!
On arriving at school, James, Sarah and I spent some time with Olivia doing puzzles. James soon left to take Sarah to gymnastics while I stayed on for the parent morning tea.
There were very few facilities at the school apart from the classrooms and toilets. The playground hadn’t even been built. It looked as though there is still a lot of work ahead. I must admit it was a bit of a dustbowl. Nevertheless, the classrooms looked good and very spacious, and the teaching staff seemed lovely.
The first day of school was a short one and I picked her up at one o’clock. Olivia’s usual hours are from 8.40am until 3.15pm so she has some long days ahead of her.
Tuesday 3rd February 2009
I met Olivia’s teacher today for a meeting to inform her of Olivia’s medical history and to discuss her needs in the classroom, particularly regarding her hearing impairment and her medication.