Our Third Battle Against Cancer Begins!, 11 June 2007 to 16 Jan 08
June 11
After spending most of the weekend getting over the shock of our latest bit of bad news, we traveled up to Sydney for Olivia’s clinic appointment with her oncologist and to check in with the ear, nose and throat specialist.
June 12
First thing this morning we headed up to the hospital for Olivia to have a blood test. Our next stop was a visit to the social worker to inform her of our ordeal. As usual, she was very supportive and willing to help us in any way she could. We then bumped into Olivia’s doctor in the café where we told her of our news. She was shocked but also supportive. We then headed upstairs for Olivia’s appointment. Just prior to seeing Olivia’s doctor, I had a phone call from my surgeon’s rooms to see if I could make it to a 4.30 appointment today. I took it as I was anxious to meet with him. This meant that we had no time to waste in Sydney.
Olivia’s blood results were all good, although her platelets were still below the normal range at 132 (>150 being normal). This is to be expected given what her body has been through. She looked a picture of health and her doctor was happy. We asked for two months supply of cis-retinoic acid because we knew that we wouldn’t make it up to Sydney in July for Olivia’s check up.
We then headed off to the ear, nose and throat specialist. He cleaned out a little bit of wax from her ears and then had her hearing tested (for the first time since she had her ears cleaned out under anaesthetic). The test showed that her normal range hearing had improved, though she still had severe high frequency hearing loss. The doctor recommended hearing aids, as we were expecting.
We now had to hurry back to Canberra for my appointment. However, as usual, I ended up waiting for ages at the hospital pharmacy for Olivia’s medication.
We rushed home from Sydney to meet up with Mum who came round to pick up Olivia so that James and I could see the surgeon. We made it to the doctor’s without a minute to spare. We then waited for over an hour as he was running extremely late! The doctor checked out the scans but needed further information and told me to have some further scans including one of my chest to make sure my lungs are clear. He then told me what the surgery would involve. It was looking like he would have to remove a quarter of my liver (in fact, up to 75% of your liver can be removed), my gallbladder (because it’s attached to that particular part of my liver) and possibly lymph nodes. The operation is called a right hemihepatectomy. This type of surgery will take 2 surgeons up to 4 or 5 hours as it can be quite fiddly. They also use special ultrasound equipment once they have opened me up to check for any other possible signs of cancer and to determine exactly which parts have to be removed. I will have another huge scar running horizontally across my stomach and another that runs vertically to my chest.
This is all very scary but it’s got to be done and I was hoping to have it done as soon as possible. This type of surgery involves a lot of preparation and it could be a couple of weeks or so before I could have it. James and I were considering the possibility of going on a holiday since we knew that we now wouldn’t be able to later in the year, as planned. On suggesting this to the doctor, he thought that it was a great idea and that there was plenty of time before he could organize the surgery.
June 13
After my CT scan today, I was informed by the doctor’s secretary that my surgery is booked for June 29.
June 14
James was booked to fly up to Townsville for work today and tomorrow. The plan was that the girls and I would meet him in Brisbane on Saturday. As it turns out, his trip was called off an hour before he was due to leave. He decided to drive up to Brisbane on Friday and meet us at the airport on Saturday. We booked a one week holiday in Queensland, spending 3 nights on the Gold Coast and 4 on the Sunshine Coast (Alexandra Headlands). After speaking to the wonderful social worker at Canberra Hospital, she kindly organized free entry to Sea World and Dreamworld. We were all very excited about this trip and we all really needed it.
June 16
The girls and I headed off to sunny Queensland. What a flight! I had two not so very happy campers. Olivia was quite tired and cranky and was incredibly loud and demanding. Sarah was very restless (I guess any kid would be if they had to remain strapped to their mother’s lap). She could see that Olivia had her own seat and so she too wanted to have her own. Unfortunately, it was a full flight and the seat next to me was occupied – I’m sure he enjoyed the trip! As you would imagine, there wasn’t much room to move and by the end of the flight I found a few little surprises stuck to my bottom, mostly chocolate and bits of biscuit. The girls had a great time tossing their mini m&m’s around. Sarah pretty much screamed for the second half of the trip until she eventually wore herself out and fell asleep. I needed a sleep after that. James arrived in Brisbane just in time to pick us up from the airport.
We headed off to Burleigh Heads to our lovely apartment with great views. We were officially on holidays and it felt fantastic! We took the girls down to the beach for a paddle in their swimmers. It was getting pretty cool but they loved it. It was so great to see Olivia enjoying the water without those central lines. We later took them into the heated pool at the apartments. It was the first time Sarah had ever been in a pool and it had been a long time for Olivia. It was beautiful to see them enjoying it so much.
June 17
We headed off to Sea World. We had a wonderful time. The girls loved all of the rides. Olivia particularly loved the Flume Ride and we must have gone on it a million times. She quickly learned to say that she’s an “adwenaline junkie”. At the end of the day, I took Olivia on the monorail so that she could see a little more of the park.
June 18
Happy Birthday, James (Daddy)!
Today we headed off to Dreamworld. Our first stop was Wiggles’ World. Dorothy’s Rosy Teacup ride quickly became the favourite. We then waited in a long queue to ride in the Big Red Car which was rather boring. We took a walk over to the petting zoo. Sarah absolutely loves animals so she had a ball. Once again, Olivia was incredibly keen to go on another flume ride. We found the log ride and it appeared that everyone getting off the ride was soaked. We warned Olivia that she would get very wet but she insisted that this was the ride for her. Throughout our wait in the queue, I continued to warn her that we would get very wet. She was unperturbed. We sat at the back hoping that we might stay a little drier but it was not to be. We got drenched. Olivia was so shocked by how wet we got that she burst into tears. Of course, we hadn’t long been at Dreamworld, we were soaked and had no spare clothes – great! I had to face the fact that I would be walking around in soggy jeans and squishy shoes for the rest of the day. Olivia, however, found this more difficult to deal with – poor thing, she was so upset. James kindly sacrificed his t-shirt for her to wear. She spent the rest of the day wearing a t-shirt dress and sneakers but she was happy. James put on a jumper.
James decided to try out a couple of rides. He went on the Giant Drop – a huge, vertical drop. Very scary – not for me! James described it as the most exhilarating thing he’s ever done. He then went of the Tower of Terror while I took the girls on a train ride around the park.
We spent some more time in Wiggles’ World before James convinced me to go on the Tower of Terror. What a rush! Glad I tried it.
The girls were absolutely exhausted at the end of the day. We had a nice dinner and celebrated James birthday with a chocolate mud cake – Olivia loved it!
June 19
We had been having such a great time and were disappointed to leave. The girls loved spending time in the pool and going to the park down the road.
We made our way up to Alexandra Headland on the Sunshine Coast. James made an excellent choice with the accommodation – it was a beautiful three bedroom apartment. It had a huge spa bath which the girls loved, and Olivia got to sleep in a queen sized bed. The units had a heated pool, though it was outdoors. James took Olivia for a quick swim in there – the weather was way too cold for Sarah and I.
In the days that followed, the weather certainly turned on us. After having a few days of temperatures in the low 20’s, it seemed to change into Canberra weather! It was freezing. Unfortunately, we didn’t pack for that kind of weather as we thought we were escaping to the tropics! The weather ruled out going to the beach or using the pool.
We ended up spending quite a bit of time inside. We went to Underwater World. The girls really enjoyed it, especially Sarah. She is such an animal lover. She especially loved the seals and became very excited watching them swim right up the underwater window we were watching them from.
We also traveled up to the Big Pineapple, which was a bit of a non-event. There was hardly anyone there and there wasn’t anything to do. Although, the girls enjoyed an ice-cream and a couple of $2 rides.
We regularly took the girls to the local park, which was fantastic.
We were only booked to stay there for four nights but I managed to convince James to stay another two nights. I was not looking forward to going home at all and facing reality. We were having such a lovely time. It was so relaxing and great to spend quality time as a family. Fortunately, the weather improved slightly a couple of days before we left. It was still cool and it rained on and off but there were a few sunny breaks.
We managed to take the girls down to the heated pool on one of the warmer mornings. The girls loved it! We also had a visit from James’ brother and his family. The girls enjoyed playing with their little cousin Sam.
We also got to take the girls down to the beach in the afternoon. Although it was sunny, it was quite cool and windy on the beach. I was cold but it didn’t seem to phase the girls. They were so busy playing in the sand, dipping their toes in the water and collecting shells. They didn’t want to leave. Sarah was having such a ball that she face planted in the sand and somehow managed to cut her forehead but she didn’t even notice.
June 25
We woke up to another cold and rainy day – I guess it was a good thing that we were leaving today. I spent the drive back into Brisbane attempting to convince James that we should move up to Queensland (in fact, I spent most of the trip trying). I’ve always wanted to move up there. The weather is fabulous and there’s so much to do. It’s definitely a consideration but we really do need to get all of our health issues sorted out first. It’ll happen one day.
The flight back to Canberra was not without drama. Again, Sarah found it difficult to come to grips with being restrained to my lap. Any kind of restraint is not popular with Sarah. She only kicked, wriggled and screamed for the first half of the trip before she settled down a little. I managed to give her some time in the seat next to me (Thank God it was vacant), which she seemed to enjoy briefly. Olivia was fairly settled but I tell you what, it isn’t easy traveling alone with two kids.
James made his way back to Canberra with the car in the pouring rain and arrived home late the following day.
We all had a fantastic holiday. It was disappointing it had to end.
Wednesday, June 27
I had to be at Canberra Hospital by 9 this morning for a pre-admission clinic in preparation for surgery. I saw a couple of doctors and nurses who basically assessed my general health and took down my medical history. They also told me what I could expect in relation to anaesthetics, the surgery and my recovery. It was now beginning to hit me that this was really happening – I was getting scared.
I then headed straight to the Calvary Clinic to meet with my surgeon. I met James there. He had previously been at a meeting with our social worker and some other wonderful ladies from the Gungahlin Child and Family Centre. They basically wanted to offer us some services to support us through the next few months and wanted to establish what our needs are. They offered us some family day care for the girls, three days a week, a cleaner for 12 weeks and a carer to look after the girls for a few hours a week. I was overwhelmed by the help they were offering us. They are so supportive. In fact, I’ve had many conversations with some of those ladies and they are so caring and compassionate – they’re goal is to make our lives as stress-free as possible.
My surgeon didn’t really tell us anything new, except that the CT scan revealed that my lungs were clear. He reiterated everything he had told us from our last meeting. He was very honest, but remained positive and was very caring. I left his office with a feeling of complete confidence.
Thursday, June 28
I spent my morning preparing for my hospital stay. I also had to pack up the girls’ things as James and the girls were going to stay at Mum and Dad’s while I was in hospital. I had to be at hospital by 2pm. Mum collected the girls just before we had to leave.
On arriving at hospital I was put in a room with another lady who constantly sounded like she was about to cough up a lung. I felt sorry for her but I didn’t want to be listening to that! I was also not happy about having to share a room with someone – so much for private health insurance. I wasn’t too concerned at that point but I certainly didn’t want to be sharing with anyone post-surgery.
I can’t believe what a waste of time it was coming in a day earlier! All I did was sit around reading. Although it was quite relaxing, I could think of better things to do to take my mind off having surgery the next day. I was lucky I had lots of phone calls from friends wishing me luck and making me laugh which really helped. I also saw the anaesthetist who breezed in quickly and gave me a quick run down of the anaesthetics – no surprises there. One of my friends had told me that he is apparently the best anaesthetic doctor in Canberra. That was very reassuring to hear. I should point out that he also told me my surgery would not go ahead if there was no bed available in the High Dependency Unit (the HDU is the next level down from intensive care, where I must go there after surgery). He said that it had been very busy and that surgeries like mine had been cancelled all day. That would not make me happy. The prospect of waiting another couple of weeks for surgery was not something I wanted. I would have to wait and see.
Surprisingly, I wasn’t feeling all that anxious about the surgery, I was quite relaxed.
Friday, June 29
Surgery day. I was woken up at six so the nurse could take some observations and then I had a shower to get ready for my big day. James was told to be at the hospital by 6.30 if he wanted to see me prior to surgery. Miraculously, he made it on time. I was wheeled down to theatre at around 7am. It was still a case of waiting to see if my surgery would go ahead. James left me at around 7.30am, assuming, by this stage, that everything would proceed. Well, I had to wait around in the holding bay with the theatre nurses for ages, waiting for the word on the bed situation. Things were looking pretty ominous for a while when I was told that it didn’t look like there were any beds available for me post-surgery. So, boy did I have a dummy spit! I can’t believe they do this to patients. The hospital system stinks.
I got regular updates from the anaesthetist about the bed situation but we wouldn’t know the final word until around 9am. In the meantime, I rang James to tell him what was going on and chatted to the theatre nurses.
Word came round at 9am that there was a bed available at the private hospital (NatCap) in their critical care unit. My surgery went ahead immediately. I was elated (I bet they’ve never seen anyone so excited over liver surgery). I would have been so upset if there were any delays – I wanted that tumour out today!
I remember waking up from surgery feeling pretty lousy, which is what I generally expected. I had a great deal of pain, especially shoulder tip pain. They fiddled with my pain meds and epidural for a while until it all settled down. My teeth wouldn’t stop chattering, which was likely to be shock.
The next few days continued on like this. I had good moments and moments where I just felt like crawling under a rock.
I had to some physio for the sake of my lungs. Although I managed the physio quite well, the getting out of bed part and walking across the room was a struggle. I managed to do it fairly well on the first day but had difficulty on the second.
I’m not going to go into too many details as it’s all really quite boring. I was moved back over the Canberra Hospital after about three nights. The staff at Nat Cap were fantastic and took very good care of me. I had a couple of big cries and the nurses were all to willing to sit with me and just listen.
On moving over to the other hospital, I had a bit of a scare. My epidural wasn’t really taking care of the pain, all it was doing was numbing my left leg and hip and only slightly numbing my right leg. The doctors thought that I had potentially developed a clot in my spine which was causing the uneven distribution of the epidural. They warned me that it was potentially serious and were already discussing involving a surgeon to remove the clot. I was getting pretty scared at this point. They immediately stopped the epidural to see if I regained feeling in my left leg. This would take up to four hours. If the feeling came back then I was fine. Thankfully, it did. Of course, I was trying to fast track it by rubbing, lifting, kicking my leg (in fact, I did just about everything to try and get it moving). I certainly didn’t need a setback like that.
I was in a single room for that night. However, the following day, the nursing staff attempted to move me into a shared room. They put me in a small room with two other ladies and a man. I was not happy. I had just had major surgery and I was pretty emotional. I had already spoken to the nurses about our circumstances, hoping that they would grant our wish for some privacy in a single room. Sharing my private life with a roomful of strangers was not appealing to me at all. One of the ladies sharing the room with me had to leave because she couldn’t stand the smell of my lilies. The nurses asked if my flowers could be taken home and I made it very clear that they were staying with me. By this stage, I was pretty teary and I think that the nurses were feeling sympathetic and so they moved me back to a single room. I was relieved that I could cry and deal with my problems in private. I also didn’t feel that it was appropriate that any woman should have to share a room with a man and vice versa (mind you, I guess that depends on how hot he is! Ha!).
My stay in hospital was fairly uneventful. I felt fairly nauseous most days and vomited one night but I think that was because of all of the drugs I’d been taking. A few days into my stay, I was able to shower and was getting around with greater ease.
James, Mum and the girls came to visit me every day. The first time Olivia saw me hooked up to a drip and with lines poking out of me from everywhere, she was very inquisitive. It was all too familiar to her, asking me things like, what’s that line for? What’s the nurse putting in there? She just wanted to look at everything and know what it was all for. She just seems to know so much, more than any little girl should know about the medical world.
Sunday, July 1
I have to say congratulations to Andrew and Juliana on the birth of their little daughter, Leah. She looks just beautiful from the pictures I’ve seen. The news really brightened up my time in hospital. Another little cousin for our girls and that makes three granddaughters for Mum and Dad.
Thursday, July 5
I was discharged from hospital today, not really because I was well, just sick of being in hospital, and knew I was about to be moved into a shared room. I was told that I could go home that morning but it took forever for anybody in that hospital to get organized. I was largely ignored by the nurses (that started a few days ago when they could see that I was on the mend – service in that hospital was extremely slow to sometimes non-existent). I was still feeling quite nauseous today. We were sent down to the discharge lounge where we had to wait for hours. Olivia was with me and was getting quite bored and I was feeling lousy. We had to wait for the intern to do a few things, which could have been done a lot sooner. Unfortunately, his English wasn’t great so it took a lot longer for him to do anything. Finally, we got away from the hospital just after 4.30pm! We went to Mum’s where James and the girls were already staying. The plan was to stay there until I was well enough to look after the girls myself.
We ended up staying for just over two weeks. It was a couple of weeks of ups and downs, physically and emotionally. I was lucky to have some very strong pain killers which helped me to sleep more restfully at night. I had good days when I didn’t feel so bad and other days when the pain was awful. James managed to get to work most days and Mum was amazing, looking after us and the girls. Mum insisted on doing everything, which was great but at the same time, it was difficult for me as I felt quite inadequate and helpless on some days. James and I are just so grateful to Mum and Dad for helping us out so much. I really don’t know what we would have done with out them. They have also been a great emotional support to us. Nothing was a problem to them. Words cannot express our gratitude. Thanks, Mum and Dad!
During those couple of weeks, there were lots of visits from friends, offering their support, as well as appointments to keep up with.
It was also an emotional time because there was talk from Mum and Dad that Jessie (our family Labrador, who is 16 years and 4 months old) would need to be put down. She has been suffering from really bad arthritis in her back legs for quite some time and had very little control over her bowels. It was getting hard to see her in so much pain. She is still a very alert dog but her body just wasn’t coping well. We were shedding a few tears over this. Olivia was asking a lot of questions about the whole situation. We had to explain it to her as best as we could to a three year old. We told her that Jessie was an old dog and she has very sore legs so that she would need to have a very long sleep and go to doggy heaven. Olivia eventually figured it all out and burst into tears – we felt terrible. She just understands so much more than we sometimes wish she did. Sarah also really loves Jessie so much – she is always cuddling her. I know that she will really notice her absence. Because there were so many tears over this, Dad decided to postpone it.
Friday, July 27
Today is the day that Mum and Dad decided to have Jessie put down. It was a tough day. I didn’t go to the vet’s as I knew it would be just too hard. It was a very sad day for the family. Jessie was such a beautiful dog, so gentle and affectionate. She will be very sadly missed by everyone. Mum and Dad decided to have her cremated with Pets At Peace, who are apparently very good, which is reassuring.
Sunday, August 5
We headed up to Sydney today for the week for Olivia’s three monthly scans. We went to our lovely friends, Rosie, Garry and Marcus’ house for dinner. They always have us over for dinner whenever we go up to Sydney and it’s always great to catch up with them, distracting us from the actual purpose of our trip.
Monday, August 6
Olivia had a bone scan today. Firstly, we headed up to Nuclear Medicine so that she could have an injection of a radioactive isotope. Of course, we had to wait a while because Olivia’s doctor or her team had not passed on the referral for the test so that had to be chased up. This happens every single time she goes to Nuc Med.
Once that was done, we headed over to C2South where Olivia was sedated for the procedure. It was also where we would go for her recovery. Olivia was given some oral medication to start with which the nurses said was a new, improved flavour – Olivia didn’t seem to think so. She hated it and started to cry. Once she became drowsy, they injected another sedative into her leg. This was awful. She gets so upset, as did I. Even though, we have been through so much with Olivia, it’s still very difficult to watch her go through so much. I still can’t understand why any child should have to go through anything like this, even if it is only sedative injection. She eventually went to sleep and we all headed off for the scan. The scan usually takes about an hour and a half.
During the scan, I paid a visit to the cancer centre’s psychologist. I’ve been to see her a couple of times in the past. It’s good to just talk to someone who has experience with parents in similar situations. It was also good to offload and to have a bloody good cry. James also went to see her afterwards.
On arriving back on the ward, Olivia slept for quite some time. She always does.
We headed back to RMH in the afternoon.
James decided to take a business trip to Melbourne overnight, which I wasn’t too happy about, given the week we were having in Sydney. Anyway, he returned the following evening.
Tuesday, August 7
I woke up at 3am having realized I had completely forgotten to take Olivia to a 5.15 ENT appointment the previous day. The previous day had been busy and emotionally charged that I had forgotten all about it. I felt terrible as they had gone to so much trouble to squeeze us in at that time. I rang the doctor’s rooms and they were very understanding and happy to squeeze us in on Thursday.
We headed over to the hospital for Olivia’s CT scan at 9am. Once again, they hadn’t received a referral for Olivia. The receptionist tried to track down the doctors for it but without success. I suggested that we come back later with the referral after we’d seen Olivia’s oncologist.
Olivia and I headed over the café for a hot chocolate and babycino in between appointments.
We then saw Olivia’s oncologist. Olivia’s blood counts seemed to be good and her doctor was pleased with how she looked. Her doctor felt that since she was tolerating the cis-retinoic acid so well (relatively speaking), she might as well remain on it for twelve months. Apart from getting excessively dry skin, it doesn’t seem to affect her in any other way. It does sometimes raise her triglyceride (cholesterol) levels, however, this time it was normal.
Wednesday, August 8
Today is a busy day for Olivia. She has to have sedation for an MIBG scan and a general anaesthetic for a bone marrow aspirate. I was concerned that all of the anaesthetics would be too tough for Olivia, given that she would virtually have to fast all day and that she would wake up from one scan and have to be drugged again for another. We know that she doesn’t always wake up from anaesthetics feeling particularly user friendly.
We had to be at the hospital at around 7am. We headed up to the C2South but yet again we were delayed as the doctors didn’t come round to see Olivia and then they had authorized the incorrect dosage of the sedation. By the time she finally got to go for scan it was around 9am. It can be incredibly frustrating waiting around in the hospital, especially when the doctors consistently get it wrong!
Once Olivia finally made it down to Nuc Med, it probably took about an hour and a half for the scan.
On arriving back on the ward, Olivia spent most of the time sleeping off the sedation. I was making trips back and forth to the other ward, C2North, to speak to the nurses to find out where Olivia was on the bone marrow list. I explained to them that she had been fasting all day and night and had just had a scan under sedation and that I really wanted to minimize the time that she would be waiting for the aspirate.
Olivia finally woke up and was fairly happy except she was understandably hungry. We had to explain to her that she had to wait to eat until after her next test. She took it really well. We headed up to C2North to find out that she was about fourth on the list so we had to wait a while. I continued to reiterate to the nurses that Olivia had been fasting all day and the urgency for her to have the BMA as soon as possible.
It was finally Olivia’s turn. She went under without a problem. The procedure only took about 20 minutes or so but she wasn’t too happy when she woke up (a typical reaction to anaesthetic from Olivia). One of the nurses wouldn’t allow us into the recovery area, obviously not realising that the main reason Olivia was crying was that she had just woken up in a strange room with a complete stranger. She eventually managed to calm down after a lot of crying and some screaming! She was soon comforted by the yummy blueberry tart we had bought her, followed by chocolate and other little treats. It was a rough day for our girl and I can’t blame her for being a little agitated. After an hour, we took her back to RMH.
RMH had a dinner on that night for everyone staying in the house. It was a fantastic dinner put on by a magazine company. It was a barbeque with delicious pasta salads, etc. The kids were treated with little prizes if they answered a question correctly. Olivia had a ball and sat on the floor with all the other kids and was very keen to answer all of the questions. She waited patiently and put her hand up to answer every question. I got tears in my eyes just watching her. She was so happy to be around other kids and it gave me a glimpse of how much she would enjoy pre-school. She has missed out on a lot and it was great to see her having so much fun. She eventually won a fluffy, purple tiara but then she politely went up to the ladies giving away the prizes and asked if she could have a prize for her little sister, Sarah. She was given some glow in the dark stars and a moon.
Thursday, August 9
I went to a ‘Coming Off Treatment’ seminar, while James took Olivia to her re-scheduled ENT appointment. The seminar didn’t really offer me any new information. It was really on offer to parents to help them to deal with the daunting prospect of their children coming off treatment and going back into the real world, without the ‘safe’ environment of the hospital. Coming off treatment is pretty scary because all of a sudden you’re back at home with no treatment and unsure of what the future holds. Don’t get me wrong, I couldn’t be more excited to have Olivia off treatment but it the fact that there is no longer any medication to prevent this horrible disease from coming back. We do have some peace of mind with Olivia taking the cis-retinoic acid as this is apparently very effective. This too, however, has it’s side effects with Olivia’s skin becoming extremely dry and red, very itchy and irritated, and scabby after she scratches in her sleep.
I felt that I didn’t gain much from the seminar as Olivia had already been off treatment for six months and I felt that I was coming to terms with the whole situation. A lot of the information was not new to me but it was interesting to hear from a couple of parents whose children had been off treatment for a couple of years. It was good to hear that their children were doing so well and that there is life after cancer. It was very inspiring and gave me hope – which I have always had anyway!
The ENT doctor gave Olivia’s ears another clean out. She has very narrow ear canals so the wax builds up very quickly. I also asked James to enquire about her constant runny nose (it has been that way since the start of chemo but every doctor I have asked never seems to show any concern). The doctor just said to blow her nose regularly and use saline spray to keep it clear. I believe there is more to it. If there is no improvement, I will certainly enquire about it again next time we’re in Sydney.
We packed up and headed back to Canberra that afternoon. We were all very excited to see our Sare-Bear.
After spending most of the weekend getting over the shock of our latest bit of bad news, we traveled up to Sydney for Olivia’s clinic appointment with her oncologist and to check in with the ear, nose and throat specialist.
June 12
First thing this morning we headed up to the hospital for Olivia to have a blood test. Our next stop was a visit to the social worker to inform her of our ordeal. As usual, she was very supportive and willing to help us in any way she could. We then bumped into Olivia’s doctor in the café where we told her of our news. She was shocked but also supportive. We then headed upstairs for Olivia’s appointment. Just prior to seeing Olivia’s doctor, I had a phone call from my surgeon’s rooms to see if I could make it to a 4.30 appointment today. I took it as I was anxious to meet with him. This meant that we had no time to waste in Sydney.
Olivia’s blood results were all good, although her platelets were still below the normal range at 132 (>150 being normal). This is to be expected given what her body has been through. She looked a picture of health and her doctor was happy. We asked for two months supply of cis-retinoic acid because we knew that we wouldn’t make it up to Sydney in July for Olivia’s check up.
We then headed off to the ear, nose and throat specialist. He cleaned out a little bit of wax from her ears and then had her hearing tested (for the first time since she had her ears cleaned out under anaesthetic). The test showed that her normal range hearing had improved, though she still had severe high frequency hearing loss. The doctor recommended hearing aids, as we were expecting.
We now had to hurry back to Canberra for my appointment. However, as usual, I ended up waiting for ages at the hospital pharmacy for Olivia’s medication.
We rushed home from Sydney to meet up with Mum who came round to pick up Olivia so that James and I could see the surgeon. We made it to the doctor’s without a minute to spare. We then waited for over an hour as he was running extremely late! The doctor checked out the scans but needed further information and told me to have some further scans including one of my chest to make sure my lungs are clear. He then told me what the surgery would involve. It was looking like he would have to remove a quarter of my liver (in fact, up to 75% of your liver can be removed), my gallbladder (because it’s attached to that particular part of my liver) and possibly lymph nodes. The operation is called a right hemihepatectomy. This type of surgery will take 2 surgeons up to 4 or 5 hours as it can be quite fiddly. They also use special ultrasound equipment once they have opened me up to check for any other possible signs of cancer and to determine exactly which parts have to be removed. I will have another huge scar running horizontally across my stomach and another that runs vertically to my chest.
This is all very scary but it’s got to be done and I was hoping to have it done as soon as possible. This type of surgery involves a lot of preparation and it could be a couple of weeks or so before I could have it. James and I were considering the possibility of going on a holiday since we knew that we now wouldn’t be able to later in the year, as planned. On suggesting this to the doctor, he thought that it was a great idea and that there was plenty of time before he could organize the surgery.
June 13
After my CT scan today, I was informed by the doctor’s secretary that my surgery is booked for June 29.
June 14
James was booked to fly up to Townsville for work today and tomorrow. The plan was that the girls and I would meet him in Brisbane on Saturday. As it turns out, his trip was called off an hour before he was due to leave. He decided to drive up to Brisbane on Friday and meet us at the airport on Saturday. We booked a one week holiday in Queensland, spending 3 nights on the Gold Coast and 4 on the Sunshine Coast (Alexandra Headlands). After speaking to the wonderful social worker at Canberra Hospital, she kindly organized free entry to Sea World and Dreamworld. We were all very excited about this trip and we all really needed it.
June 16
The girls and I headed off to sunny Queensland. What a flight! I had two not so very happy campers. Olivia was quite tired and cranky and was incredibly loud and demanding. Sarah was very restless (I guess any kid would be if they had to remain strapped to their mother’s lap). She could see that Olivia had her own seat and so she too wanted to have her own. Unfortunately, it was a full flight and the seat next to me was occupied – I’m sure he enjoyed the trip! As you would imagine, there wasn’t much room to move and by the end of the flight I found a few little surprises stuck to my bottom, mostly chocolate and bits of biscuit. The girls had a great time tossing their mini m&m’s around. Sarah pretty much screamed for the second half of the trip until she eventually wore herself out and fell asleep. I needed a sleep after that. James arrived in Brisbane just in time to pick us up from the airport.
We headed off to Burleigh Heads to our lovely apartment with great views. We were officially on holidays and it felt fantastic! We took the girls down to the beach for a paddle in their swimmers. It was getting pretty cool but they loved it. It was so great to see Olivia enjoying the water without those central lines. We later took them into the heated pool at the apartments. It was the first time Sarah had ever been in a pool and it had been a long time for Olivia. It was beautiful to see them enjoying it so much.
June 17
We headed off to Sea World. We had a wonderful time. The girls loved all of the rides. Olivia particularly loved the Flume Ride and we must have gone on it a million times. She quickly learned to say that she’s an “adwenaline junkie”. At the end of the day, I took Olivia on the monorail so that she could see a little more of the park.
June 18
Happy Birthday, James (Daddy)!
Today we headed off to Dreamworld. Our first stop was Wiggles’ World. Dorothy’s Rosy Teacup ride quickly became the favourite. We then waited in a long queue to ride in the Big Red Car which was rather boring. We took a walk over to the petting zoo. Sarah absolutely loves animals so she had a ball. Once again, Olivia was incredibly keen to go on another flume ride. We found the log ride and it appeared that everyone getting off the ride was soaked. We warned Olivia that she would get very wet but she insisted that this was the ride for her. Throughout our wait in the queue, I continued to warn her that we would get very wet. She was unperturbed. We sat at the back hoping that we might stay a little drier but it was not to be. We got drenched. Olivia was so shocked by how wet we got that she burst into tears. Of course, we hadn’t long been at Dreamworld, we were soaked and had no spare clothes – great! I had to face the fact that I would be walking around in soggy jeans and squishy shoes for the rest of the day. Olivia, however, found this more difficult to deal with – poor thing, she was so upset. James kindly sacrificed his t-shirt for her to wear. She spent the rest of the day wearing a t-shirt dress and sneakers but she was happy. James put on a jumper.
James decided to try out a couple of rides. He went on the Giant Drop – a huge, vertical drop. Very scary – not for me! James described it as the most exhilarating thing he’s ever done. He then went of the Tower of Terror while I took the girls on a train ride around the park.
We spent some more time in Wiggles’ World before James convinced me to go on the Tower of Terror. What a rush! Glad I tried it.
The girls were absolutely exhausted at the end of the day. We had a nice dinner and celebrated James birthday with a chocolate mud cake – Olivia loved it!
June 19
We had been having such a great time and were disappointed to leave. The girls loved spending time in the pool and going to the park down the road.
We made our way up to Alexandra Headland on the Sunshine Coast. James made an excellent choice with the accommodation – it was a beautiful three bedroom apartment. It had a huge spa bath which the girls loved, and Olivia got to sleep in a queen sized bed. The units had a heated pool, though it was outdoors. James took Olivia for a quick swim in there – the weather was way too cold for Sarah and I.
In the days that followed, the weather certainly turned on us. After having a few days of temperatures in the low 20’s, it seemed to change into Canberra weather! It was freezing. Unfortunately, we didn’t pack for that kind of weather as we thought we were escaping to the tropics! The weather ruled out going to the beach or using the pool.
We ended up spending quite a bit of time inside. We went to Underwater World. The girls really enjoyed it, especially Sarah. She is such an animal lover. She especially loved the seals and became very excited watching them swim right up the underwater window we were watching them from.
We also traveled up to the Big Pineapple, which was a bit of a non-event. There was hardly anyone there and there wasn’t anything to do. Although, the girls enjoyed an ice-cream and a couple of $2 rides.
We regularly took the girls to the local park, which was fantastic.
We were only booked to stay there for four nights but I managed to convince James to stay another two nights. I was not looking forward to going home at all and facing reality. We were having such a lovely time. It was so relaxing and great to spend quality time as a family. Fortunately, the weather improved slightly a couple of days before we left. It was still cool and it rained on and off but there were a few sunny breaks.
We managed to take the girls down to the heated pool on one of the warmer mornings. The girls loved it! We also had a visit from James’ brother and his family. The girls enjoyed playing with their little cousin Sam.
We also got to take the girls down to the beach in the afternoon. Although it was sunny, it was quite cool and windy on the beach. I was cold but it didn’t seem to phase the girls. They were so busy playing in the sand, dipping their toes in the water and collecting shells. They didn’t want to leave. Sarah was having such a ball that she face planted in the sand and somehow managed to cut her forehead but she didn’t even notice.
June 25
We woke up to another cold and rainy day – I guess it was a good thing that we were leaving today. I spent the drive back into Brisbane attempting to convince James that we should move up to Queensland (in fact, I spent most of the trip trying). I’ve always wanted to move up there. The weather is fabulous and there’s so much to do. It’s definitely a consideration but we really do need to get all of our health issues sorted out first. It’ll happen one day.
The flight back to Canberra was not without drama. Again, Sarah found it difficult to come to grips with being restrained to my lap. Any kind of restraint is not popular with Sarah. She only kicked, wriggled and screamed for the first half of the trip before she settled down a little. I managed to give her some time in the seat next to me (Thank God it was vacant), which she seemed to enjoy briefly. Olivia was fairly settled but I tell you what, it isn’t easy traveling alone with two kids.
James made his way back to Canberra with the car in the pouring rain and arrived home late the following day.
We all had a fantastic holiday. It was disappointing it had to end.
Wednesday, June 27
I had to be at Canberra Hospital by 9 this morning for a pre-admission clinic in preparation for surgery. I saw a couple of doctors and nurses who basically assessed my general health and took down my medical history. They also told me what I could expect in relation to anaesthetics, the surgery and my recovery. It was now beginning to hit me that this was really happening – I was getting scared.
I then headed straight to the Calvary Clinic to meet with my surgeon. I met James there. He had previously been at a meeting with our social worker and some other wonderful ladies from the Gungahlin Child and Family Centre. They basically wanted to offer us some services to support us through the next few months and wanted to establish what our needs are. They offered us some family day care for the girls, three days a week, a cleaner for 12 weeks and a carer to look after the girls for a few hours a week. I was overwhelmed by the help they were offering us. They are so supportive. In fact, I’ve had many conversations with some of those ladies and they are so caring and compassionate – they’re goal is to make our lives as stress-free as possible.
My surgeon didn’t really tell us anything new, except that the CT scan revealed that my lungs were clear. He reiterated everything he had told us from our last meeting. He was very honest, but remained positive and was very caring. I left his office with a feeling of complete confidence.
Thursday, June 28
I spent my morning preparing for my hospital stay. I also had to pack up the girls’ things as James and the girls were going to stay at Mum and Dad’s while I was in hospital. I had to be at hospital by 2pm. Mum collected the girls just before we had to leave.
On arriving at hospital I was put in a room with another lady who constantly sounded like she was about to cough up a lung. I felt sorry for her but I didn’t want to be listening to that! I was also not happy about having to share a room with someone – so much for private health insurance. I wasn’t too concerned at that point but I certainly didn’t want to be sharing with anyone post-surgery.
I can’t believe what a waste of time it was coming in a day earlier! All I did was sit around reading. Although it was quite relaxing, I could think of better things to do to take my mind off having surgery the next day. I was lucky I had lots of phone calls from friends wishing me luck and making me laugh which really helped. I also saw the anaesthetist who breezed in quickly and gave me a quick run down of the anaesthetics – no surprises there. One of my friends had told me that he is apparently the best anaesthetic doctor in Canberra. That was very reassuring to hear. I should point out that he also told me my surgery would not go ahead if there was no bed available in the High Dependency Unit (the HDU is the next level down from intensive care, where I must go there after surgery). He said that it had been very busy and that surgeries like mine had been cancelled all day. That would not make me happy. The prospect of waiting another couple of weeks for surgery was not something I wanted. I would have to wait and see.
Surprisingly, I wasn’t feeling all that anxious about the surgery, I was quite relaxed.
Friday, June 29
Surgery day. I was woken up at six so the nurse could take some observations and then I had a shower to get ready for my big day. James was told to be at the hospital by 6.30 if he wanted to see me prior to surgery. Miraculously, he made it on time. I was wheeled down to theatre at around 7am. It was still a case of waiting to see if my surgery would go ahead. James left me at around 7.30am, assuming, by this stage, that everything would proceed. Well, I had to wait around in the holding bay with the theatre nurses for ages, waiting for the word on the bed situation. Things were looking pretty ominous for a while when I was told that it didn’t look like there were any beds available for me post-surgery. So, boy did I have a dummy spit! I can’t believe they do this to patients. The hospital system stinks.
I got regular updates from the anaesthetist about the bed situation but we wouldn’t know the final word until around 9am. In the meantime, I rang James to tell him what was going on and chatted to the theatre nurses.
Word came round at 9am that there was a bed available at the private hospital (NatCap) in their critical care unit. My surgery went ahead immediately. I was elated (I bet they’ve never seen anyone so excited over liver surgery). I would have been so upset if there were any delays – I wanted that tumour out today!
I remember waking up from surgery feeling pretty lousy, which is what I generally expected. I had a great deal of pain, especially shoulder tip pain. They fiddled with my pain meds and epidural for a while until it all settled down. My teeth wouldn’t stop chattering, which was likely to be shock.
The next few days continued on like this. I had good moments and moments where I just felt like crawling under a rock.
I had to some physio for the sake of my lungs. Although I managed the physio quite well, the getting out of bed part and walking across the room was a struggle. I managed to do it fairly well on the first day but had difficulty on the second.
I’m not going to go into too many details as it’s all really quite boring. I was moved back over the Canberra Hospital after about three nights. The staff at Nat Cap were fantastic and took very good care of me. I had a couple of big cries and the nurses were all to willing to sit with me and just listen.
On moving over to the other hospital, I had a bit of a scare. My epidural wasn’t really taking care of the pain, all it was doing was numbing my left leg and hip and only slightly numbing my right leg. The doctors thought that I had potentially developed a clot in my spine which was causing the uneven distribution of the epidural. They warned me that it was potentially serious and were already discussing involving a surgeon to remove the clot. I was getting pretty scared at this point. They immediately stopped the epidural to see if I regained feeling in my left leg. This would take up to four hours. If the feeling came back then I was fine. Thankfully, it did. Of course, I was trying to fast track it by rubbing, lifting, kicking my leg (in fact, I did just about everything to try and get it moving). I certainly didn’t need a setback like that.
I was in a single room for that night. However, the following day, the nursing staff attempted to move me into a shared room. They put me in a small room with two other ladies and a man. I was not happy. I had just had major surgery and I was pretty emotional. I had already spoken to the nurses about our circumstances, hoping that they would grant our wish for some privacy in a single room. Sharing my private life with a roomful of strangers was not appealing to me at all. One of the ladies sharing the room with me had to leave because she couldn’t stand the smell of my lilies. The nurses asked if my flowers could be taken home and I made it very clear that they were staying with me. By this stage, I was pretty teary and I think that the nurses were feeling sympathetic and so they moved me back to a single room. I was relieved that I could cry and deal with my problems in private. I also didn’t feel that it was appropriate that any woman should have to share a room with a man and vice versa (mind you, I guess that depends on how hot he is! Ha!).
My stay in hospital was fairly uneventful. I felt fairly nauseous most days and vomited one night but I think that was because of all of the drugs I’d been taking. A few days into my stay, I was able to shower and was getting around with greater ease.
James, Mum and the girls came to visit me every day. The first time Olivia saw me hooked up to a drip and with lines poking out of me from everywhere, she was very inquisitive. It was all too familiar to her, asking me things like, what’s that line for? What’s the nurse putting in there? She just wanted to look at everything and know what it was all for. She just seems to know so much, more than any little girl should know about the medical world.
Sunday, July 1
I have to say congratulations to Andrew and Juliana on the birth of their little daughter, Leah. She looks just beautiful from the pictures I’ve seen. The news really brightened up my time in hospital. Another little cousin for our girls and that makes three granddaughters for Mum and Dad.
Thursday, July 5
I was discharged from hospital today, not really because I was well, just sick of being in hospital, and knew I was about to be moved into a shared room. I was told that I could go home that morning but it took forever for anybody in that hospital to get organized. I was largely ignored by the nurses (that started a few days ago when they could see that I was on the mend – service in that hospital was extremely slow to sometimes non-existent). I was still feeling quite nauseous today. We were sent down to the discharge lounge where we had to wait for hours. Olivia was with me and was getting quite bored and I was feeling lousy. We had to wait for the intern to do a few things, which could have been done a lot sooner. Unfortunately, his English wasn’t great so it took a lot longer for him to do anything. Finally, we got away from the hospital just after 4.30pm! We went to Mum’s where James and the girls were already staying. The plan was to stay there until I was well enough to look after the girls myself.
We ended up staying for just over two weeks. It was a couple of weeks of ups and downs, physically and emotionally. I was lucky to have some very strong pain killers which helped me to sleep more restfully at night. I had good days when I didn’t feel so bad and other days when the pain was awful. James managed to get to work most days and Mum was amazing, looking after us and the girls. Mum insisted on doing everything, which was great but at the same time, it was difficult for me as I felt quite inadequate and helpless on some days. James and I are just so grateful to Mum and Dad for helping us out so much. I really don’t know what we would have done with out them. They have also been a great emotional support to us. Nothing was a problem to them. Words cannot express our gratitude. Thanks, Mum and Dad!
During those couple of weeks, there were lots of visits from friends, offering their support, as well as appointments to keep up with.
It was also an emotional time because there was talk from Mum and Dad that Jessie (our family Labrador, who is 16 years and 4 months old) would need to be put down. She has been suffering from really bad arthritis in her back legs for quite some time and had very little control over her bowels. It was getting hard to see her in so much pain. She is still a very alert dog but her body just wasn’t coping well. We were shedding a few tears over this. Olivia was asking a lot of questions about the whole situation. We had to explain it to her as best as we could to a three year old. We told her that Jessie was an old dog and she has very sore legs so that she would need to have a very long sleep and go to doggy heaven. Olivia eventually figured it all out and burst into tears – we felt terrible. She just understands so much more than we sometimes wish she did. Sarah also really loves Jessie so much – she is always cuddling her. I know that she will really notice her absence. Because there were so many tears over this, Dad decided to postpone it.
Friday, July 27
Today is the day that Mum and Dad decided to have Jessie put down. It was a tough day. I didn’t go to the vet’s as I knew it would be just too hard. It was a very sad day for the family. Jessie was such a beautiful dog, so gentle and affectionate. She will be very sadly missed by everyone. Mum and Dad decided to have her cremated with Pets At Peace, who are apparently very good, which is reassuring.
Sunday, August 5
We headed up to Sydney today for the week for Olivia’s three monthly scans. We went to our lovely friends, Rosie, Garry and Marcus’ house for dinner. They always have us over for dinner whenever we go up to Sydney and it’s always great to catch up with them, distracting us from the actual purpose of our trip.
Monday, August 6
Olivia had a bone scan today. Firstly, we headed up to Nuclear Medicine so that she could have an injection of a radioactive isotope. Of course, we had to wait a while because Olivia’s doctor or her team had not passed on the referral for the test so that had to be chased up. This happens every single time she goes to Nuc Med.
Once that was done, we headed over to C2South where Olivia was sedated for the procedure. It was also where we would go for her recovery. Olivia was given some oral medication to start with which the nurses said was a new, improved flavour – Olivia didn’t seem to think so. She hated it and started to cry. Once she became drowsy, they injected another sedative into her leg. This was awful. She gets so upset, as did I. Even though, we have been through so much with Olivia, it’s still very difficult to watch her go through so much. I still can’t understand why any child should have to go through anything like this, even if it is only sedative injection. She eventually went to sleep and we all headed off for the scan. The scan usually takes about an hour and a half.
During the scan, I paid a visit to the cancer centre’s psychologist. I’ve been to see her a couple of times in the past. It’s good to just talk to someone who has experience with parents in similar situations. It was also good to offload and to have a bloody good cry. James also went to see her afterwards.
On arriving back on the ward, Olivia slept for quite some time. She always does.
We headed back to RMH in the afternoon.
James decided to take a business trip to Melbourne overnight, which I wasn’t too happy about, given the week we were having in Sydney. Anyway, he returned the following evening.
Tuesday, August 7
I woke up at 3am having realized I had completely forgotten to take Olivia to a 5.15 ENT appointment the previous day. The previous day had been busy and emotionally charged that I had forgotten all about it. I felt terrible as they had gone to so much trouble to squeeze us in at that time. I rang the doctor’s rooms and they were very understanding and happy to squeeze us in on Thursday.
We headed over to the hospital for Olivia’s CT scan at 9am. Once again, they hadn’t received a referral for Olivia. The receptionist tried to track down the doctors for it but without success. I suggested that we come back later with the referral after we’d seen Olivia’s oncologist.
Olivia and I headed over the café for a hot chocolate and babycino in between appointments.
We then saw Olivia’s oncologist. Olivia’s blood counts seemed to be good and her doctor was pleased with how she looked. Her doctor felt that since she was tolerating the cis-retinoic acid so well (relatively speaking), she might as well remain on it for twelve months. Apart from getting excessively dry skin, it doesn’t seem to affect her in any other way. It does sometimes raise her triglyceride (cholesterol) levels, however, this time it was normal.
Wednesday, August 8
Today is a busy day for Olivia. She has to have sedation for an MIBG scan and a general anaesthetic for a bone marrow aspirate. I was concerned that all of the anaesthetics would be too tough for Olivia, given that she would virtually have to fast all day and that she would wake up from one scan and have to be drugged again for another. We know that she doesn’t always wake up from anaesthetics feeling particularly user friendly.
We had to be at the hospital at around 7am. We headed up to the C2South but yet again we were delayed as the doctors didn’t come round to see Olivia and then they had authorized the incorrect dosage of the sedation. By the time she finally got to go for scan it was around 9am. It can be incredibly frustrating waiting around in the hospital, especially when the doctors consistently get it wrong!
Once Olivia finally made it down to Nuc Med, it probably took about an hour and a half for the scan.
On arriving back on the ward, Olivia spent most of the time sleeping off the sedation. I was making trips back and forth to the other ward, C2North, to speak to the nurses to find out where Olivia was on the bone marrow list. I explained to them that she had been fasting all day and night and had just had a scan under sedation and that I really wanted to minimize the time that she would be waiting for the aspirate.
Olivia finally woke up and was fairly happy except she was understandably hungry. We had to explain to her that she had to wait to eat until after her next test. She took it really well. We headed up to C2North to find out that she was about fourth on the list so we had to wait a while. I continued to reiterate to the nurses that Olivia had been fasting all day and the urgency for her to have the BMA as soon as possible.
It was finally Olivia’s turn. She went under without a problem. The procedure only took about 20 minutes or so but she wasn’t too happy when she woke up (a typical reaction to anaesthetic from Olivia). One of the nurses wouldn’t allow us into the recovery area, obviously not realising that the main reason Olivia was crying was that she had just woken up in a strange room with a complete stranger. She eventually managed to calm down after a lot of crying and some screaming! She was soon comforted by the yummy blueberry tart we had bought her, followed by chocolate and other little treats. It was a rough day for our girl and I can’t blame her for being a little agitated. After an hour, we took her back to RMH.
RMH had a dinner on that night for everyone staying in the house. It was a fantastic dinner put on by a magazine company. It was a barbeque with delicious pasta salads, etc. The kids were treated with little prizes if they answered a question correctly. Olivia had a ball and sat on the floor with all the other kids and was very keen to answer all of the questions. She waited patiently and put her hand up to answer every question. I got tears in my eyes just watching her. She was so happy to be around other kids and it gave me a glimpse of how much she would enjoy pre-school. She has missed out on a lot and it was great to see her having so much fun. She eventually won a fluffy, purple tiara but then she politely went up to the ladies giving away the prizes and asked if she could have a prize for her little sister, Sarah. She was given some glow in the dark stars and a moon.
Thursday, August 9
I went to a ‘Coming Off Treatment’ seminar, while James took Olivia to her re-scheduled ENT appointment. The seminar didn’t really offer me any new information. It was really on offer to parents to help them to deal with the daunting prospect of their children coming off treatment and going back into the real world, without the ‘safe’ environment of the hospital. Coming off treatment is pretty scary because all of a sudden you’re back at home with no treatment and unsure of what the future holds. Don’t get me wrong, I couldn’t be more excited to have Olivia off treatment but it the fact that there is no longer any medication to prevent this horrible disease from coming back. We do have some peace of mind with Olivia taking the cis-retinoic acid as this is apparently very effective. This too, however, has it’s side effects with Olivia’s skin becoming extremely dry and red, very itchy and irritated, and scabby after she scratches in her sleep.
I felt that I didn’t gain much from the seminar as Olivia had already been off treatment for six months and I felt that I was coming to terms with the whole situation. A lot of the information was not new to me but it was interesting to hear from a couple of parents whose children had been off treatment for a couple of years. It was good to hear that their children were doing so well and that there is life after cancer. It was very inspiring and gave me hope – which I have always had anyway!
The ENT doctor gave Olivia’s ears another clean out. She has very narrow ear canals so the wax builds up very quickly. I also asked James to enquire about her constant runny nose (it has been that way since the start of chemo but every doctor I have asked never seems to show any concern). The doctor just said to blow her nose regularly and use saline spray to keep it clear. I believe there is more to it. If there is no improvement, I will certainly enquire about it again next time we’re in Sydney.
We packed up and headed back to Canberra that afternoon. We were all very excited to see our Sare-Bear.
Friday, August 10
Today was fraught with anxiety. Firstly, we were extremely anxious to hear Olivia’s test results. Secondly, I was going into hospital to have a portacath inserted into my chest. A portacath is a small device that sits under the skin and allows chemotherapy drugs to be pumped directly to the heart via one of the main arteries. It means that I would have a small lump under my skin and a one inch scar on my chest.
I awaited a phone call from Sydney all morning, knowing that it was highly unlikely the doctors would call us. It would be a case of us calling them as usual. You would think that the doctors with all of their experiences with parents of children with cancer, that they would have, at least, a vague understanding what it means to a parent to get these results and how much angst it causes. I was starting to get the shakes, simply because I was getting so worked up.
James drove me to the hospital at 11am. We decided that we would make the call once I’d checked into hospital. As we sat in the waiting room, I was far too nervous to make the phone call to Sydney. In my heart of hearts, I felt that the results would be good but that certainly didn’t keep me from feeling like a wreck. I had to get James to make the call. He put the phone of loud speaker so that we could both speak with the fellow and hear the results. It was GREAT NEWS! Olivia was still in remission, no signs of cancer. The doctor did report that the scans showed she had sinusitis. Perhaps this is connected with the constant runny nose. Anyway, we were thrilled and both shed tears of joy. It was the most overwhelming sense of relief. This news seemed to make having a portacath inserted much less significant and worrisome.
After waiting around for quite a while, I was finally wheeled into theatre for my little operation. By this stage, I was quite relaxed and not as worried as I had been about having a port.
Everything went well. However, I did get sick from the anaesthetic and had to stop on the way home for a bit of fresh air if you know what I mean. I was also vomiting when I got home. I felt fine the next day but it did take about a week to adjust to the portacath, as could constantly feel it under my skin.
The next few weeks were extremely busy rushing around to appointments and so forth.
Tuesday, August 21
Today is my first day of the dreaded chemo! The girls went off to family day care and Mum came along to chemo with me. I will be having my chemo at the day stay oncology ward at National Capital Private Hospital, where I had my previous treatment.
On arriving, it was good to see some familiar faces as far as the nursing staff go. They were always really good to me and it was comforting to know that they were still there. However, I looked around the oncology ward and all I saw were men and women much older than myself. I did feel a little alone but got over it pretty quickly. I sat next to a lovely elderly couple. As we chatted away, I soon realized that the gentleman was on the same treatment as I was. He seemed to be coping very well with it and they were both so positive that it made me feel even more inspired to hit this thing head on.
My treatment consists of 12 rounds of chemotherapy and it is administered fortnightly. Each round is administered over three days. On the first day, I have a drug called Oxaliplatin (the nasty drug) which runs for just over 2 hours. Prior to this I am given a cocktail of anti-nausea medications. I am then given a bolus of another drug called 5FU (which is the chemo drug I had last time round). I am then sent home with a pump full of 5FU which will constantly drip into me for the following 44 hours. I then return to hospital on the second day to have folinic acid, another bolus of 5FU and I get to take the pump home yet again. On the third day, I simply have to return to hospital to have my pump disconnected.
The side effects of the oxaliplatin include peripheral neuropathy (tingling and numbness in the hands and feet) which is particularly bad with exposure to anything cold, laryngeal spasms (a feeling of your throat closing over and neck muscle spasms when drinking or eating anything cold), jaw pain, some hair loss/thinning and nausea and vomiting.
5FU can generally cause some nausea and skin rashes, as well as some other minor side effects.
For the first round, I was given the full dose of chemotherapy. While I was having the chemo, I wasn’t really bothered by it. However, as soon as I stepped foot outside, I noticed one of the side effects of the oxaliplatin – neuropathy. It was cool outside and all of a sudden I could feel a coldness and tingling in my fingers. As the afternoon wore on, the neuropathy became much more noticeable. I was unable to get cold things from the fridge or chop up vegetables for dinner (because they were so cold). I was also unable to drink cold drinks as my throat closed over – a very uncomfortable feeling. These side effects continued for the next few days. I also got jaw pain when eating but this usually subsided as I continued to chew.
Much later in the day, I started to feel slightly nauseas. This became much worse over the following days, much to my disappointment!
Unfortunately, I was given a dodgy pump to take home as the hospital’s regular, more reliable, battery operated pumps were being serviced. During the last 24 hours, the pump stopped working and unfortunately, that meant that I didn’t get any of the 5FU. Instead, I was given a bolus of 5FU the next day. I was guaranteed a good, reliable pump for the next round.
I won’t go into too many details about my treatment. I’ll just say that the next few days were miserable. I felt so nauseas and came close to vomiting on several occasions. I stayed in bed for a good few days and slept a lot. I was surprised that the chemo had such an adverse effect on me and I was disappointed that I couldn’t handle it better than I did. I couldn’t help but think of what an incredibly strong and brave little girl Olivia was to tolerate the massive doses of nasty chemo drugs she had for her treatment. I am such a wimp in comparison!
Though not one hundred percent, I probably began to feel human again by the following Wednesday. I spoke to one of the chemo nurses on Monday to let them know how sick the chemo had made me. She said she would speak with my oncologist about possibly lowering the dosage for next time.
On Friday, I had to have a blood test to see if I could start chemo again on Monday. I have to do this every fortnight. If my blood counts are too low (especially my neutrophils), I won’t be able to start chemo on the following Monday and my chemo will be delayed by one week.
Monday, 3 September
My chemo went ahead for this week. Although my neutrophils were only 1.4 and they don’t usually allow you to have chemo if they are below 1.5. I guess they considered me to be on the borderline. My dosage was reduced to 75% of what it was. The nurses told me that I should feel better this time round.
I took home another pump this time which was much better. It is bigger and I guess it’s a bit of a nuisance carrying it around everywhere because I’m always conscious of it. I carry it in a belt around my waist and it just hangs there, looking like a rather large appendage!
Again, I noticed the same side effects as before and pretty much to the same degree. There wasn’t a huge difference in the way I felt in the following days and I still spent quite some time in bed, feeling quite ill.
I saw my oncologist on the Wednesday. I need to see him once a month whilst on treatment. He didn’t have a lot to say but I got the impression that he’s keen to increase my dosage over the next couple of rounds.
Friday, 14 September
I went to pathology to have my usual fortnightly blood test to see if my blood counts were okay to start chemo on Monday.
I spoke to the oncology nurses in the afternoon who informed me that my neutrophils were 0.4 and that my chemo would have to be delayed by a week.
Monday, 24 September
Chemo started today and my dosage was reduced to 50%. The oxaliplatin was reduced to 50% and the 5FU was kept at 75%. I was actually very excited by this as I hoped that it would make a big difference to the way I feel. And it did. I felt much better after this round. I still felt nauseas but not for as long. I find the metallic taste that I get rather repulsive – it makes me feel off and food doesn’t quite taste the same. I think I’d rather suck on a 20 cent piece! There is nothing I can do to get rid of the taste.
Friday, 5 October
My blood test today showed that my neutrophils were 1.9. Chemo would go ahead next Monday. It was decided to keep me on 50% of the dosage given my neutrophils still weren’t within the ‘normal’ range. Initially, I was a little concerned about keeping the dosage at 50% because I wondered if it would be effective. I don’t want to go through all of this only for the cancer to come back because the chemo didn’t work. The nurses seemed to the think that the chemo is likely to be working given the effect it is having on my bone marrow with my lower blood counts. It is always going to be difficult to ascertain whether or not the chemo has worked because after I had my surgery, there was no more evidence of disease. For all I know, the surgery may have cured me or I could still have microscopic cancer cells – it’s just a big uncertainty and that is why cancer is so scary. Ultimately, I am happy to remain on 50% and hope that it works but at the same time, if an increased dosage means that the chemo is likely to be more effective, then I am prepared to put up with a greater degree of sickness.
Monday, 8 October
Chemo started today. Nothing unusual to report. I started to feel a little ‘off’ by late afternoon. This persisted for the next few days.
Thursday, 11 October
James and I finally decided to let our girls live a little and took them to Olivia’s little friend, Hanah’s fourth birthday party at Kid City. We intentionally kept them away from places like that for fear that they might pick up a nasty bug from the other kids there. We felt that, at this point, the need for them to have some fun in their life outweighed the risk of them (particularly Olivia) catching something nasty. The girls had an absolute ball and it was wonderful to see them both having such a great time. Olivia did get very upset when it came time for Hanah to blow out the candles on her cake. Olivia really wanted to do it and didn’t quite understand why she couldn’t. She was most upset. James took her out of the party room to explain to her why she couldn’t blow out Hanah’s candles. She said to James ‘why can’t I have a party?’ We realized that she has missed out on so much, including lots of birthday parties. It’s frustrating for her and she doesn’t really understand the whole birthday party etiquette just yet. Hanah’s Mum, Bec, also realized this and put a little candle on the cake for Olivia to blow out. Thanks, Bec.
Sarah had a ball. She ran around like crazy and had a great time picking food out of all the bowls and off other kids’ plates.
I was feeling rather ‘off’ at this point but I didn’t want to miss out on seeing the girls having such a great time.
I’m not sure if have previously mentioned that Olivia had developed a small lump on the left side of her face for which I took her to the doctor. Naturally, I was a little concerned as I am with any lump, bump, pain, etc that Olivia ever has. I have read that neuroblastoma can occur in the skin but my first suspicion was a pimple or sebaceous cyst. The doctor confirmed that it was actually a sebaceous cyst and recommended using magna-plasm to draw out any pus. We used this for about a week before the cyst turned into a big staph infection! It looked nasty – the cyst became big, red and full of pus! She then required antibiotics which seemed to do the trick. The infection improved but the cyst, unfortunately, didn’t disappear.
Saturday, 13 October
Happy anniversary to my wonderful husband, James! Six years on and it’s hard to believe everything we have been through. It’s certainly been an extremely tough last few years. It would be nice to know if there was an end to it all soon (not our marriage but our health issues!) but unfortunately, there is so much uncertainty, no guarantees and that is extremely frustrating and very upsetting at times. We try to stay positive and I think we have been. I often become very fragile a couple of weeks prior to Olivia’s scans – the anxiety builds up.
The girls stayed at Mum and Dad’s for the night while James and I enjoyed a nice dinner out. I almost didn’t make it as I wasn’t feeling 100 percent but it good spending alone time together and it turned out to be a really nice evening.
Monday, 15 October
Happy birthday, Andrew!
Today, when Olivia woke up, I noticed her limping. She told me that her right foot was sore but I couldn’t recall her having any big falls that might have caused it. Of course, I became worried, though I was trying not to think the worst just yet (although it is hard not to given Olivia’s medical history). The limp continued throughout the day.
Tuesday, 16 October
I spoke with Olivia’s oncologist today in hopes that she’d organized Olivia’s scans for the end of the month, which she had. I had been chasing it up for days. Believe me, if you don’t chase things up with the doctors, things either don’t get done or you don’t hear about it. Nevertheless, Olivia’s doctor was great and was more than happy to spend some time talking to me about various issues, including the scans and future monitoring for Olivia, as well as Olivia’s limp (which she wasn’t too concerned about at this stage).
Olivia’s doctor wants her to remain on cis-retinoic acid for 12 months. I explained to her that it was taking quite a toll on her skin. It causes such excessive dryness that she find bathing or the application of any moisturizer or lotion very painful. As bad as her skin gets, we never ever hear Olivia complain about having to take the medication. She understands why she needs to take it and is very mature in her approach to taking it. In fact, she often has to remind us to give it to her. She just continues to amaze us. I pointed out to her doctor that we would like to stop the medication at 11 months, just prior to Olivia starting pre-school. She was happy with that, especially since trials conducted with cis-retinoic acid have only ever gone for six months.
Thursday, 18 October
I took Olivia to the doctor to find out what could be done in regards to Olivia’s cyst. He said that they can sometimes disappear but usually require excision. He gave us another script for antibiotics to see if it would reduce its size. I think that excision, at this stage, is a little drastic. We’ll see how it goes. Our girl has been through enough for now.
I also mentioned Olivia’s limp to the doctor who didn’t seem too worried. He said that I should be looking out for a consistent limp that was getting worse. Olivia’s limp had been fairly consistent for the last four days but I couldn’t say that it was getting worse.
Friday, 19 October
Today we met some friends and took the girls for a bike ride to a park next to Lake Burley Griffin. They had a great time. Sarah always has a ball riding her little trike and Olivia got in some much needed practice on her bike. The problem is Olivia is extremely independent and refuses to accept much needed help from James or myself when it comes to teaching her to ride the bike. Although she has a lot of fun on her bike, she often ends up in tears, frustrated that she can’t pedal up a big hill without assistance or brake going down a hill!
I managed to get both girls to have a sleep this afternoon. When Olivia woke up, she was limping quite badly and complaining that her foot was ‘really sore’. This finally set off alarm bells for me. I immediately tried to track down Olivia’s oncologist who wasn’t responding to her pager. The lovely lady at the switchboard in Sydney then put me in touch with one of the oncology fellows who told me that it wasn’t normal for any child to have an unexplained limp for five days and he recommended that I speak with our GP or take her to the hospital. I then became a mess and phoned our GP in tears. He told me to take her to the hospital so that she could have her foot x-rayed and that he would fax a letter to the emergency department. I waited a short time for Sarah to wake up and then left for the hospital, picking James up on the way (he rode his bike to work). This all happened at around 5pm. James was becoming as concerned as I was. It’s a sickening feeling, worrying about your child relapsing with cancer.
Once at the hospital, we had to wait a little while to be seen by a doctor. We gave the doctor Olivia’s medical history and he checked her out. Again, after waiting a while, she had an x-ray on her right foot. We waited very anxiously for the results. Both girls were very well behaved but did become extremely bored after a while and who can blame them! We waited and waited and waited. The doctor finally told us that the x-ray was clear but that Olivia would require a bone scan as an x-ray does not pick up on everything. The paediatric registrar also checked her out and said that he would arrange a bone scan for Monday. We now had to wait to be discharged from hospital which took forever and a day. It was after 10pm before we were discharged. Our poor girls were exhausted and so were we. Although we were somewhat relieved, we still needed an explanation for Olivia’s limp.
Saturday, October 20
After an extremely late night for the girls, we managed to take them to one of their little friend’s birthday party at Kid Zone that morning. They had a fantastic time and showed no signs of tiredness. We then took them home for a quick sleep before taking them off to their very first swimming lesson.
James took Sarah in the pool for her lesson. She screamed for about the first 10 minutes but seemed to get used to the water quite quickly and settled down. She actually looked like she really enjoyed it. Olivia is able to go to her lesson without a parent. There are only two other children in her lesson. She absolutely loved it! She developed so much confidence in such a short time. We couldn’t get her out of the pool afterwards so she stayed in (with James) for about another hour. The time finally came for us to go home and there were tears (from Olivia, that is) – she did not want to get out.
Sunday, October 21
We decided to head over to the pool around lunch time for family fun day. They have family fun days every Sunday for three hours as a free opportunity for the kids to practice their swimming skills. James and I both went in the pool with the girls. As it was a non-chemo week for me, I was feeling pretty good and decided it would be nice to join the girls in the pool. We all had a great time.
Monday, October 22
I had to have another blood test this morning to check my blood counts as my blood test on Friday showed that my neutrophils were too low to start today.
I spent the morning making phone calls to the nuclear medicine department in Canberra Hospital to see if Olivia was booked in for a bone scan today. Unfortunately, they were booked out and it wouldn’t be until tomorrow (Tuesday). They told me that she wouldn’t be sedated and that they just strap down the kids and put on a video! I wasn’t happy about that and told them that she would require sedation because the scan can take up to an hour and a half and that they couldn’t expect Olivia to keep still that whole time and I didn’t want her ‘strapped down’. They said they would organize it.
As it turns out, I spoke with Olivia’s oncologist in Sydney who felt that the bone scan could wait until next week (when we are in Sydney for scans) given that Olivia looked well, her blood counts were fine and she was afebrile. Again, she spent some time discussing the situation with me and wasn’t, yet, too concerned about her limp. However, she did point out that the scans could ‘go either way’. I always try to seek reassurance from Olivia’s doctor but she (understandably) is very non-commital. She indicated to me if the scans are normal and the limp is still a problem then we may want to follow up with an MRI scan to see if a problem can be identified. We would have to do this in Canberra as there is a waiting list of several months in Sydney. If Olivia’s limp improves or disappears, her doctor said (after a discussion with an orthopaedic surgeon) that follow up is not necessary.
I cancelled the bone scan (in Canberra) but unfortunately, it now means we have a very anxious wait until next week in Sydney.
I should also point out that I was initially diagnosed with cancer four years ago today. Happy anniversary to me!
Tuesday, October 23
Started chemo today. Nothing to really tell (mostly because I am writing this almost a month later and I can’t remember much). I do know that I felt pretty revolting in the days that followed. In fact, I think I’m starting feel a little worse with each subsequent treatment – must be the cumulative effect. I do get very nauseas and extremely tired but the neuropathy isn’t as bad on the lower dosage.
The chemo nurses are fabulous. They are very special people to be doing what they do. They are incredibly caring and really good to talk to. They really do make chemo bearable and we often have a good laugh. They work so hard and are incredibly professional. I can’t speak highly enough of the nurses – they are amazing. I also always end up chatting to other cancer patients who just amaze me with their stories and their wonderful attitudes – very inspiring.
Wednesday, October 24
Second day of chemo. I was very tired and slept through my treatment. Again, Mum has had to take the girls for me while I’ve been having chemo. Thanks, Mum!
Thursday, October 25
I headed back to hospital today to have my pump disconnected. Hooray! I always look forward to day three because I can’t stand the pump – it’s not exactly the most fashionable accessory (not that I’m complaining!).
Sunday, October 28
We headed off to Sydney mid-afternoon. Before leaving, Mum came round to pick up Sarah. I really don’t like leaving her behind but I know that she loves it at Mum and Dad’s and would not enjoy being stuck at the hospital or couped up in a little room at RMH.
We went to Rosie’s and Garry’s place for dinner (our three-monthly catch up). It was great to see them and we always appreciate a beautiful dinner when we arrive in Sydney. Thanks, guys – you really look after us.
Monday, October 29
We arrived at the hospital at around 8.30am for Olivia to have an injection of a radioactive isotope in preparation for her bone scan two hours later. Once again, on arriving in Nuclear Medicine, we had to wait for at least half an hour while Olivia’s referral was chased up. The doctors never pass on Olivia’s referrals and it’s so frustrating because it causes so many delays. It happens every time we go to Sydney. I had even spoken to her doctor about it on a couple of occasions and she didn’t seem to think that it would be a problem. While we were waiting, one of the ladies in charge, told us that the MIBG (radioactive isotope) was unavailable for Olivia’s scan on Wednesday! We were so disappointed as this is the scan that would tell us if there was any sign of neuroblastoma in Olivia’s body. She told us that it would possibly be available next week which would mean that James would have to travel back up to Sydney with Olivia as I need to have chemo next week. It also meant that we had to wait another week to get the result!
After the injection, we headed to the ward, C2South. It wasn’t long before Olivia had to start being sedated. They first gave her the oral sedation which apparently had a new and improved flavour – Olivia didn’t seem to think so! She cried. It wasn’t long before the medication took effect. It was like she was drunk! Half an hour later she was given an injection in her thigh which is really distressing for Olivia – she gets so upset which, of course, upsets me. After a cuddle with Daddy, she was fast asleep. She was then wheeled down for her bone scan.
James and I wandered down to shops in Randwick during Olivia’s scan as it takes about an hour and a half. I was a little anxious about the scan as I knew it would possibly tell us something about Olivia’s foot.
After the scan, I had to try and track down Olivia’s oncologist. She wanted to know the results of her bone scan to see if it was worth doing a CT scan of her foot. Once I finally caught up with her, she had the results of the bone scan which showed three small abnormalities in her right foot. The radiologists seemed to think that they were consistent with trauma to the foot. Unfortunately, they cannot be certain and we have to wait to have further tests before we would know for sure.
Olivia’s doctor came down to the ward with me to briefly examine Olivia’s foot. When we arrived, Olivia had just woken up. The first thing she said to her doctor was ‘Look at my hair!’ She is obviously very proud of hair growth and all of her curls.
Olivia’s doctor took a look at Olivia’s foot but she didn’t even flinch. I noticed that there had been an improvement with her limp and was hopeful that it was on the mend. Nevertheless, this did not stop me from worrying about her. Olivia’s doctor decided that it may be worthwhile having Olivia’s foot CT scanned. We had a CT scan booked for 2pm this afternoon and hoped that they could scan her foot then. Olivia’s doctor told us that after speaking to a couple of people in the CT department, it was decided that it was all just a bit too hard to manage scanning her foot this afternoon and that we would have to return tomorrow morning! I couldn’t understand why they wouldn’t do this since the rest of Olivia’s body was being scanned – how difficult can it be! Olivia’s doctor couldn’t understand it either and also got the impression that it was all too hard for them. We were also told that our appointment had been pushed back to 3pm. We weren’t too concerned as this would allow Olivia more time to recover from the sedation.
When we arrived for Olivia’s CT scan, it was obvious that the staff there were extremely flustered and they were also very rude to us. It was clear that they were very busy but I couldn’t believe the reaction that we got. Anyway, after a lot of mucking around, Olivia finally got to have her scan. We were lucky to make it on time to her ENT appointment.
Once again, the ENT surgeon cleaned the wax out of Olivia’s ears. It seems to build up extremely quickly as her ear canals are so tiny. He is such a lovely doctor and his staff are always so accommodating when we come up to Sydney – always happy to fit us in at a moment’s notice.
Tuesday, October 30
We headed up to the hospital at 8.30am so that Olivia could have a CT scan on her foot. She also had to fast for the morning in preparation for her bone marrow aspirate and trephine.
When we saw Olivia’s doctor while waiting for her bone marrow test, she told us that the CT scan on her foot came back clear. We were relieved but, again, this is not conclusive.
Although we had to wait a while for Olivia to go in for her BMA, it all seemed to go well. However, she still doesn’t wake up from general anaesthetics well at all. There was some screaming and quite a few tears. The ward has also changed the rules so that parents cannot be in recovery when their child wakes up – I found this difficult as I wanted to be with her when she woke up and I think that is why we heard her screaming on the other side of the ward once she did wake up.
After Olivia recovered from the anaesthetic and after munching on a blueberry pie (her favourite), as well as a little chocolate, we decided to make a dash home for Canberra. We were missing Sarah and there was no point in hanging around Sydney now that Olivia couldn’t have the MIBG scan. James and Olivia would have to return next week for the scan while I have chemotherapy.
Monday, 5 November
Another chemo week – YUK! I also had to chase up the Nuclear Medicine department to see if Olivia’s MIBG scan would go ahead. They said that they wouldn’t have the MIBG until Thursday so that means that James and Olivia would head up to Sydney on Thursday morning.
Thursday, 8 November
Olivia and James headed up to Sydney for her MIBG scan. She was due to have her injection at 2pm and the scan tomorrow morning.
Friday, 9 November
Olivia had her MIBG scan this morning. James and Olivia made their way back to Canberra late afternoon.
I had an appointment with my oncologist this afternoon. Nothing much to report – it was just a check up. Just prior to my appointment (late afternoon), I rang Olivia’s doctor for the MIBG result. I always get extremely anxious at this time, asthis is the result that will tell us if the cancer has returned. I usually make this phone call with James or I get him to do the talking as I become too anxious. Olivia’s doctor told me that she was busy but she would chase it up the result and call me back straight away. A couple of hours had passed and I still hadn’t heard from her. I then rang James, who was on the road, and asked him to call her. He tried calling but didn’t respond to her pager. It was getting late and I thought she might have forgotten about us. After trying to contact her another couple of times, we finally reached her at about 6.30 that evening! The MIBG scan was normal! I can’t describe the immense sense of relief we were feeling. Our beautiful girl has now been in remission for nine months.
Wednesday, 19 December
It’s been a while since updating. In fact, I haven’t really kept things up to date very accurately for the past six months – I haven’t really had the time or inclination to do it.
I just completed my ninth round of chemotherapy today. Afterwards, Mum and I took the girls to the Wiggles’ concert at AIS where we met up with our friends, Bec, Dave, Hanah and Tom. It was a great concert. Our seats weren’t so good but we took the girls down to the front of the stage to watch it. It was fantastic – they could see everything and dance around. I was feeling a little seedy but luckily for me I usually don’t feel too bad until late afternoon so I managed quite well. Mum then took the girls home with her while I had a rest.
My brother, Andrew and Juliana arrived today with their gorgeous little girl, Leah.
Tuesday, 25 December – Christmas Day
We had a wonderful Christmas. It was so nice not having to worry about when we might have to travel back up to Sydney to have Olivia’s stem cells collected for a transplant (like last year)! Everything actually felt normal.
The girls woke up early and spent a good couple of hours opening presents. They were unbelievably spoilt. I think we’ll have to have a word with Santa next year. Anyway, we did get a lot of joy out of seeing them enjoy themselves so much.
We headed over to Mum’s for Christmas lunch later that morning. Once again, the girls were spoilt. They had a great time opening their presents and spending time with their cousin, Leah. They absolutely adored her. Olivia was such a mother hen, saying things to her like, “Did you have a good sleep, my little darling?” in her sweetest, softest voice. Both girls were so gentle with her and loved to kiss her and hold her hand. Sarah absolutely loved my brother’s dog, Rasta. She loved to chase and cuddle him. This made us realize that we will have to start thinking about getting a dog soon. I think we’ll wait at least another year, once we sort out all of our health issues.
We had a fantastic lunch – thanks, Mum! Although it was great to have Andrew’s family there, we really missed Bec but got to talk to her on the webcam later that day.
The girls were pretty exhausted by the end of the day but had a fantastic time.
Friday, 28 December – My birthday
Today was the big 36. We headed over to Mum and Dad’s and had a lovely lunch in their gazebo while the girls played in the blow up pool. That evening we headed out for dinner at The Chairman and Yip with some of my friends. I had a ball. The food was sensational and I even managed a few sips of some beautiful champagne. It didn’t take much for me to start feeling pretty tipsy. We all had a really good laugh, which is just what I needed.
Wednesday, 2 January
Round 10 of chemotherapy begins. Only 2 to go after this.
Today was fraught with anxiety. Firstly, we were extremely anxious to hear Olivia’s test results. Secondly, I was going into hospital to have a portacath inserted into my chest. A portacath is a small device that sits under the skin and allows chemotherapy drugs to be pumped directly to the heart via one of the main arteries. It means that I would have a small lump under my skin and a one inch scar on my chest.
I awaited a phone call from Sydney all morning, knowing that it was highly unlikely the doctors would call us. It would be a case of us calling them as usual. You would think that the doctors with all of their experiences with parents of children with cancer, that they would have, at least, a vague understanding what it means to a parent to get these results and how much angst it causes. I was starting to get the shakes, simply because I was getting so worked up.
James drove me to the hospital at 11am. We decided that we would make the call once I’d checked into hospital. As we sat in the waiting room, I was far too nervous to make the phone call to Sydney. In my heart of hearts, I felt that the results would be good but that certainly didn’t keep me from feeling like a wreck. I had to get James to make the call. He put the phone of loud speaker so that we could both speak with the fellow and hear the results. It was GREAT NEWS! Olivia was still in remission, no signs of cancer. The doctor did report that the scans showed she had sinusitis. Perhaps this is connected with the constant runny nose. Anyway, we were thrilled and both shed tears of joy. It was the most overwhelming sense of relief. This news seemed to make having a portacath inserted much less significant and worrisome.
After waiting around for quite a while, I was finally wheeled into theatre for my little operation. By this stage, I was quite relaxed and not as worried as I had been about having a port.
Everything went well. However, I did get sick from the anaesthetic and had to stop on the way home for a bit of fresh air if you know what I mean. I was also vomiting when I got home. I felt fine the next day but it did take about a week to adjust to the portacath, as could constantly feel it under my skin.
The next few weeks were extremely busy rushing around to appointments and so forth.
Tuesday, August 21
Today is my first day of the dreaded chemo! The girls went off to family day care and Mum came along to chemo with me. I will be having my chemo at the day stay oncology ward at National Capital Private Hospital, where I had my previous treatment.
On arriving, it was good to see some familiar faces as far as the nursing staff go. They were always really good to me and it was comforting to know that they were still there. However, I looked around the oncology ward and all I saw were men and women much older than myself. I did feel a little alone but got over it pretty quickly. I sat next to a lovely elderly couple. As we chatted away, I soon realized that the gentleman was on the same treatment as I was. He seemed to be coping very well with it and they were both so positive that it made me feel even more inspired to hit this thing head on.
My treatment consists of 12 rounds of chemotherapy and it is administered fortnightly. Each round is administered over three days. On the first day, I have a drug called Oxaliplatin (the nasty drug) which runs for just over 2 hours. Prior to this I am given a cocktail of anti-nausea medications. I am then given a bolus of another drug called 5FU (which is the chemo drug I had last time round). I am then sent home with a pump full of 5FU which will constantly drip into me for the following 44 hours. I then return to hospital on the second day to have folinic acid, another bolus of 5FU and I get to take the pump home yet again. On the third day, I simply have to return to hospital to have my pump disconnected.
The side effects of the oxaliplatin include peripheral neuropathy (tingling and numbness in the hands and feet) which is particularly bad with exposure to anything cold, laryngeal spasms (a feeling of your throat closing over and neck muscle spasms when drinking or eating anything cold), jaw pain, some hair loss/thinning and nausea and vomiting.
5FU can generally cause some nausea and skin rashes, as well as some other minor side effects.
For the first round, I was given the full dose of chemotherapy. While I was having the chemo, I wasn’t really bothered by it. However, as soon as I stepped foot outside, I noticed one of the side effects of the oxaliplatin – neuropathy. It was cool outside and all of a sudden I could feel a coldness and tingling in my fingers. As the afternoon wore on, the neuropathy became much more noticeable. I was unable to get cold things from the fridge or chop up vegetables for dinner (because they were so cold). I was also unable to drink cold drinks as my throat closed over – a very uncomfortable feeling. These side effects continued for the next few days. I also got jaw pain when eating but this usually subsided as I continued to chew.
Much later in the day, I started to feel slightly nauseas. This became much worse over the following days, much to my disappointment!
Unfortunately, I was given a dodgy pump to take home as the hospital’s regular, more reliable, battery operated pumps were being serviced. During the last 24 hours, the pump stopped working and unfortunately, that meant that I didn’t get any of the 5FU. Instead, I was given a bolus of 5FU the next day. I was guaranteed a good, reliable pump for the next round.
I won’t go into too many details about my treatment. I’ll just say that the next few days were miserable. I felt so nauseas and came close to vomiting on several occasions. I stayed in bed for a good few days and slept a lot. I was surprised that the chemo had such an adverse effect on me and I was disappointed that I couldn’t handle it better than I did. I couldn’t help but think of what an incredibly strong and brave little girl Olivia was to tolerate the massive doses of nasty chemo drugs she had for her treatment. I am such a wimp in comparison!
Though not one hundred percent, I probably began to feel human again by the following Wednesday. I spoke to one of the chemo nurses on Monday to let them know how sick the chemo had made me. She said she would speak with my oncologist about possibly lowering the dosage for next time.
On Friday, I had to have a blood test to see if I could start chemo again on Monday. I have to do this every fortnight. If my blood counts are too low (especially my neutrophils), I won’t be able to start chemo on the following Monday and my chemo will be delayed by one week.
Monday, 3 September
My chemo went ahead for this week. Although my neutrophils were only 1.4 and they don’t usually allow you to have chemo if they are below 1.5. I guess they considered me to be on the borderline. My dosage was reduced to 75% of what it was. The nurses told me that I should feel better this time round.
I took home another pump this time which was much better. It is bigger and I guess it’s a bit of a nuisance carrying it around everywhere because I’m always conscious of it. I carry it in a belt around my waist and it just hangs there, looking like a rather large appendage!
Again, I noticed the same side effects as before and pretty much to the same degree. There wasn’t a huge difference in the way I felt in the following days and I still spent quite some time in bed, feeling quite ill.
I saw my oncologist on the Wednesday. I need to see him once a month whilst on treatment. He didn’t have a lot to say but I got the impression that he’s keen to increase my dosage over the next couple of rounds.
Friday, 14 September
I went to pathology to have my usual fortnightly blood test to see if my blood counts were okay to start chemo on Monday.
I spoke to the oncology nurses in the afternoon who informed me that my neutrophils were 0.4 and that my chemo would have to be delayed by a week.
Monday, 24 September
Chemo started today and my dosage was reduced to 50%. The oxaliplatin was reduced to 50% and the 5FU was kept at 75%. I was actually very excited by this as I hoped that it would make a big difference to the way I feel. And it did. I felt much better after this round. I still felt nauseas but not for as long. I find the metallic taste that I get rather repulsive – it makes me feel off and food doesn’t quite taste the same. I think I’d rather suck on a 20 cent piece! There is nothing I can do to get rid of the taste.
Friday, 5 October
My blood test today showed that my neutrophils were 1.9. Chemo would go ahead next Monday. It was decided to keep me on 50% of the dosage given my neutrophils still weren’t within the ‘normal’ range. Initially, I was a little concerned about keeping the dosage at 50% because I wondered if it would be effective. I don’t want to go through all of this only for the cancer to come back because the chemo didn’t work. The nurses seemed to the think that the chemo is likely to be working given the effect it is having on my bone marrow with my lower blood counts. It is always going to be difficult to ascertain whether or not the chemo has worked because after I had my surgery, there was no more evidence of disease. For all I know, the surgery may have cured me or I could still have microscopic cancer cells – it’s just a big uncertainty and that is why cancer is so scary. Ultimately, I am happy to remain on 50% and hope that it works but at the same time, if an increased dosage means that the chemo is likely to be more effective, then I am prepared to put up with a greater degree of sickness.
Monday, 8 October
Chemo started today. Nothing unusual to report. I started to feel a little ‘off’ by late afternoon. This persisted for the next few days.
Thursday, 11 October
James and I finally decided to let our girls live a little and took them to Olivia’s little friend, Hanah’s fourth birthday party at Kid City. We intentionally kept them away from places like that for fear that they might pick up a nasty bug from the other kids there. We felt that, at this point, the need for them to have some fun in their life outweighed the risk of them (particularly Olivia) catching something nasty. The girls had an absolute ball and it was wonderful to see them both having such a great time. Olivia did get very upset when it came time for Hanah to blow out the candles on her cake. Olivia really wanted to do it and didn’t quite understand why she couldn’t. She was most upset. James took her out of the party room to explain to her why she couldn’t blow out Hanah’s candles. She said to James ‘why can’t I have a party?’ We realized that she has missed out on so much, including lots of birthday parties. It’s frustrating for her and she doesn’t really understand the whole birthday party etiquette just yet. Hanah’s Mum, Bec, also realized this and put a little candle on the cake for Olivia to blow out. Thanks, Bec.
Sarah had a ball. She ran around like crazy and had a great time picking food out of all the bowls and off other kids’ plates.
I was feeling rather ‘off’ at this point but I didn’t want to miss out on seeing the girls having such a great time.
I’m not sure if have previously mentioned that Olivia had developed a small lump on the left side of her face for which I took her to the doctor. Naturally, I was a little concerned as I am with any lump, bump, pain, etc that Olivia ever has. I have read that neuroblastoma can occur in the skin but my first suspicion was a pimple or sebaceous cyst. The doctor confirmed that it was actually a sebaceous cyst and recommended using magna-plasm to draw out any pus. We used this for about a week before the cyst turned into a big staph infection! It looked nasty – the cyst became big, red and full of pus! She then required antibiotics which seemed to do the trick. The infection improved but the cyst, unfortunately, didn’t disappear.
Saturday, 13 October
Happy anniversary to my wonderful husband, James! Six years on and it’s hard to believe everything we have been through. It’s certainly been an extremely tough last few years. It would be nice to know if there was an end to it all soon (not our marriage but our health issues!) but unfortunately, there is so much uncertainty, no guarantees and that is extremely frustrating and very upsetting at times. We try to stay positive and I think we have been. I often become very fragile a couple of weeks prior to Olivia’s scans – the anxiety builds up.
The girls stayed at Mum and Dad’s for the night while James and I enjoyed a nice dinner out. I almost didn’t make it as I wasn’t feeling 100 percent but it good spending alone time together and it turned out to be a really nice evening.
Monday, 15 October
Happy birthday, Andrew!
Today, when Olivia woke up, I noticed her limping. She told me that her right foot was sore but I couldn’t recall her having any big falls that might have caused it. Of course, I became worried, though I was trying not to think the worst just yet (although it is hard not to given Olivia’s medical history). The limp continued throughout the day.
Tuesday, 16 October
I spoke with Olivia’s oncologist today in hopes that she’d organized Olivia’s scans for the end of the month, which she had. I had been chasing it up for days. Believe me, if you don’t chase things up with the doctors, things either don’t get done or you don’t hear about it. Nevertheless, Olivia’s doctor was great and was more than happy to spend some time talking to me about various issues, including the scans and future monitoring for Olivia, as well as Olivia’s limp (which she wasn’t too concerned about at this stage).
Olivia’s doctor wants her to remain on cis-retinoic acid for 12 months. I explained to her that it was taking quite a toll on her skin. It causes such excessive dryness that she find bathing or the application of any moisturizer or lotion very painful. As bad as her skin gets, we never ever hear Olivia complain about having to take the medication. She understands why she needs to take it and is very mature in her approach to taking it. In fact, she often has to remind us to give it to her. She just continues to amaze us. I pointed out to her doctor that we would like to stop the medication at 11 months, just prior to Olivia starting pre-school. She was happy with that, especially since trials conducted with cis-retinoic acid have only ever gone for six months.
Thursday, 18 October
I took Olivia to the doctor to find out what could be done in regards to Olivia’s cyst. He said that they can sometimes disappear but usually require excision. He gave us another script for antibiotics to see if it would reduce its size. I think that excision, at this stage, is a little drastic. We’ll see how it goes. Our girl has been through enough for now.
I also mentioned Olivia’s limp to the doctor who didn’t seem too worried. He said that I should be looking out for a consistent limp that was getting worse. Olivia’s limp had been fairly consistent for the last four days but I couldn’t say that it was getting worse.
Friday, 19 October
Today we met some friends and took the girls for a bike ride to a park next to Lake Burley Griffin. They had a great time. Sarah always has a ball riding her little trike and Olivia got in some much needed practice on her bike. The problem is Olivia is extremely independent and refuses to accept much needed help from James or myself when it comes to teaching her to ride the bike. Although she has a lot of fun on her bike, she often ends up in tears, frustrated that she can’t pedal up a big hill without assistance or brake going down a hill!
I managed to get both girls to have a sleep this afternoon. When Olivia woke up, she was limping quite badly and complaining that her foot was ‘really sore’. This finally set off alarm bells for me. I immediately tried to track down Olivia’s oncologist who wasn’t responding to her pager. The lovely lady at the switchboard in Sydney then put me in touch with one of the oncology fellows who told me that it wasn’t normal for any child to have an unexplained limp for five days and he recommended that I speak with our GP or take her to the hospital. I then became a mess and phoned our GP in tears. He told me to take her to the hospital so that she could have her foot x-rayed and that he would fax a letter to the emergency department. I waited a short time for Sarah to wake up and then left for the hospital, picking James up on the way (he rode his bike to work). This all happened at around 5pm. James was becoming as concerned as I was. It’s a sickening feeling, worrying about your child relapsing with cancer.
Once at the hospital, we had to wait a little while to be seen by a doctor. We gave the doctor Olivia’s medical history and he checked her out. Again, after waiting a while, she had an x-ray on her right foot. We waited very anxiously for the results. Both girls were very well behaved but did become extremely bored after a while and who can blame them! We waited and waited and waited. The doctor finally told us that the x-ray was clear but that Olivia would require a bone scan as an x-ray does not pick up on everything. The paediatric registrar also checked her out and said that he would arrange a bone scan for Monday. We now had to wait to be discharged from hospital which took forever and a day. It was after 10pm before we were discharged. Our poor girls were exhausted and so were we. Although we were somewhat relieved, we still needed an explanation for Olivia’s limp.
Saturday, October 20
After an extremely late night for the girls, we managed to take them to one of their little friend’s birthday party at Kid Zone that morning. They had a fantastic time and showed no signs of tiredness. We then took them home for a quick sleep before taking them off to their very first swimming lesson.
James took Sarah in the pool for her lesson. She screamed for about the first 10 minutes but seemed to get used to the water quite quickly and settled down. She actually looked like she really enjoyed it. Olivia is able to go to her lesson without a parent. There are only two other children in her lesson. She absolutely loved it! She developed so much confidence in such a short time. We couldn’t get her out of the pool afterwards so she stayed in (with James) for about another hour. The time finally came for us to go home and there were tears (from Olivia, that is) – she did not want to get out.
Sunday, October 21
We decided to head over to the pool around lunch time for family fun day. They have family fun days every Sunday for three hours as a free opportunity for the kids to practice their swimming skills. James and I both went in the pool with the girls. As it was a non-chemo week for me, I was feeling pretty good and decided it would be nice to join the girls in the pool. We all had a great time.
Monday, October 22
I had to have another blood test this morning to check my blood counts as my blood test on Friday showed that my neutrophils were too low to start today.
I spent the morning making phone calls to the nuclear medicine department in Canberra Hospital to see if Olivia was booked in for a bone scan today. Unfortunately, they were booked out and it wouldn’t be until tomorrow (Tuesday). They told me that she wouldn’t be sedated and that they just strap down the kids and put on a video! I wasn’t happy about that and told them that she would require sedation because the scan can take up to an hour and a half and that they couldn’t expect Olivia to keep still that whole time and I didn’t want her ‘strapped down’. They said they would organize it.
As it turns out, I spoke with Olivia’s oncologist in Sydney who felt that the bone scan could wait until next week (when we are in Sydney for scans) given that Olivia looked well, her blood counts were fine and she was afebrile. Again, she spent some time discussing the situation with me and wasn’t, yet, too concerned about her limp. However, she did point out that the scans could ‘go either way’. I always try to seek reassurance from Olivia’s doctor but she (understandably) is very non-commital. She indicated to me if the scans are normal and the limp is still a problem then we may want to follow up with an MRI scan to see if a problem can be identified. We would have to do this in Canberra as there is a waiting list of several months in Sydney. If Olivia’s limp improves or disappears, her doctor said (after a discussion with an orthopaedic surgeon) that follow up is not necessary.
I cancelled the bone scan (in Canberra) but unfortunately, it now means we have a very anxious wait until next week in Sydney.
I should also point out that I was initially diagnosed with cancer four years ago today. Happy anniversary to me!
Tuesday, October 23
Started chemo today. Nothing to really tell (mostly because I am writing this almost a month later and I can’t remember much). I do know that I felt pretty revolting in the days that followed. In fact, I think I’m starting feel a little worse with each subsequent treatment – must be the cumulative effect. I do get very nauseas and extremely tired but the neuropathy isn’t as bad on the lower dosage.
The chemo nurses are fabulous. They are very special people to be doing what they do. They are incredibly caring and really good to talk to. They really do make chemo bearable and we often have a good laugh. They work so hard and are incredibly professional. I can’t speak highly enough of the nurses – they are amazing. I also always end up chatting to other cancer patients who just amaze me with their stories and their wonderful attitudes – very inspiring.
Wednesday, October 24
Second day of chemo. I was very tired and slept through my treatment. Again, Mum has had to take the girls for me while I’ve been having chemo. Thanks, Mum!
Thursday, October 25
I headed back to hospital today to have my pump disconnected. Hooray! I always look forward to day three because I can’t stand the pump – it’s not exactly the most fashionable accessory (not that I’m complaining!).
Sunday, October 28
We headed off to Sydney mid-afternoon. Before leaving, Mum came round to pick up Sarah. I really don’t like leaving her behind but I know that she loves it at Mum and Dad’s and would not enjoy being stuck at the hospital or couped up in a little room at RMH.
We went to Rosie’s and Garry’s place for dinner (our three-monthly catch up). It was great to see them and we always appreciate a beautiful dinner when we arrive in Sydney. Thanks, guys – you really look after us.
Monday, October 29
We arrived at the hospital at around 8.30am for Olivia to have an injection of a radioactive isotope in preparation for her bone scan two hours later. Once again, on arriving in Nuclear Medicine, we had to wait for at least half an hour while Olivia’s referral was chased up. The doctors never pass on Olivia’s referrals and it’s so frustrating because it causes so many delays. It happens every time we go to Sydney. I had even spoken to her doctor about it on a couple of occasions and she didn’t seem to think that it would be a problem. While we were waiting, one of the ladies in charge, told us that the MIBG (radioactive isotope) was unavailable for Olivia’s scan on Wednesday! We were so disappointed as this is the scan that would tell us if there was any sign of neuroblastoma in Olivia’s body. She told us that it would possibly be available next week which would mean that James would have to travel back up to Sydney with Olivia as I need to have chemo next week. It also meant that we had to wait another week to get the result!
After the injection, we headed to the ward, C2South. It wasn’t long before Olivia had to start being sedated. They first gave her the oral sedation which apparently had a new and improved flavour – Olivia didn’t seem to think so! She cried. It wasn’t long before the medication took effect. It was like she was drunk! Half an hour later she was given an injection in her thigh which is really distressing for Olivia – she gets so upset which, of course, upsets me. After a cuddle with Daddy, she was fast asleep. She was then wheeled down for her bone scan.
James and I wandered down to shops in Randwick during Olivia’s scan as it takes about an hour and a half. I was a little anxious about the scan as I knew it would possibly tell us something about Olivia’s foot.
After the scan, I had to try and track down Olivia’s oncologist. She wanted to know the results of her bone scan to see if it was worth doing a CT scan of her foot. Once I finally caught up with her, she had the results of the bone scan which showed three small abnormalities in her right foot. The radiologists seemed to think that they were consistent with trauma to the foot. Unfortunately, they cannot be certain and we have to wait to have further tests before we would know for sure.
Olivia’s doctor came down to the ward with me to briefly examine Olivia’s foot. When we arrived, Olivia had just woken up. The first thing she said to her doctor was ‘Look at my hair!’ She is obviously very proud of hair growth and all of her curls.
Olivia’s doctor took a look at Olivia’s foot but she didn’t even flinch. I noticed that there had been an improvement with her limp and was hopeful that it was on the mend. Nevertheless, this did not stop me from worrying about her. Olivia’s doctor decided that it may be worthwhile having Olivia’s foot CT scanned. We had a CT scan booked for 2pm this afternoon and hoped that they could scan her foot then. Olivia’s doctor told us that after speaking to a couple of people in the CT department, it was decided that it was all just a bit too hard to manage scanning her foot this afternoon and that we would have to return tomorrow morning! I couldn’t understand why they wouldn’t do this since the rest of Olivia’s body was being scanned – how difficult can it be! Olivia’s doctor couldn’t understand it either and also got the impression that it was all too hard for them. We were also told that our appointment had been pushed back to 3pm. We weren’t too concerned as this would allow Olivia more time to recover from the sedation.
When we arrived for Olivia’s CT scan, it was obvious that the staff there were extremely flustered and they were also very rude to us. It was clear that they were very busy but I couldn’t believe the reaction that we got. Anyway, after a lot of mucking around, Olivia finally got to have her scan. We were lucky to make it on time to her ENT appointment.
Once again, the ENT surgeon cleaned the wax out of Olivia’s ears. It seems to build up extremely quickly as her ear canals are so tiny. He is such a lovely doctor and his staff are always so accommodating when we come up to Sydney – always happy to fit us in at a moment’s notice.
Tuesday, October 30
We headed up to the hospital at 8.30am so that Olivia could have a CT scan on her foot. She also had to fast for the morning in preparation for her bone marrow aspirate and trephine.
When we saw Olivia’s doctor while waiting for her bone marrow test, she told us that the CT scan on her foot came back clear. We were relieved but, again, this is not conclusive.
Although we had to wait a while for Olivia to go in for her BMA, it all seemed to go well. However, she still doesn’t wake up from general anaesthetics well at all. There was some screaming and quite a few tears. The ward has also changed the rules so that parents cannot be in recovery when their child wakes up – I found this difficult as I wanted to be with her when she woke up and I think that is why we heard her screaming on the other side of the ward once she did wake up.
After Olivia recovered from the anaesthetic and after munching on a blueberry pie (her favourite), as well as a little chocolate, we decided to make a dash home for Canberra. We were missing Sarah and there was no point in hanging around Sydney now that Olivia couldn’t have the MIBG scan. James and Olivia would have to return next week for the scan while I have chemotherapy.
Monday, 5 November
Another chemo week – YUK! I also had to chase up the Nuclear Medicine department to see if Olivia’s MIBG scan would go ahead. They said that they wouldn’t have the MIBG until Thursday so that means that James and Olivia would head up to Sydney on Thursday morning.
Thursday, 8 November
Olivia and James headed up to Sydney for her MIBG scan. She was due to have her injection at 2pm and the scan tomorrow morning.
Friday, 9 November
Olivia had her MIBG scan this morning. James and Olivia made their way back to Canberra late afternoon.
I had an appointment with my oncologist this afternoon. Nothing much to report – it was just a check up. Just prior to my appointment (late afternoon), I rang Olivia’s doctor for the MIBG result. I always get extremely anxious at this time, asthis is the result that will tell us if the cancer has returned. I usually make this phone call with James or I get him to do the talking as I become too anxious. Olivia’s doctor told me that she was busy but she would chase it up the result and call me back straight away. A couple of hours had passed and I still hadn’t heard from her. I then rang James, who was on the road, and asked him to call her. He tried calling but didn’t respond to her pager. It was getting late and I thought she might have forgotten about us. After trying to contact her another couple of times, we finally reached her at about 6.30 that evening! The MIBG scan was normal! I can’t describe the immense sense of relief we were feeling. Our beautiful girl has now been in remission for nine months.
Wednesday, 19 December
It’s been a while since updating. In fact, I haven’t really kept things up to date very accurately for the past six months – I haven’t really had the time or inclination to do it.
I just completed my ninth round of chemotherapy today. Afterwards, Mum and I took the girls to the Wiggles’ concert at AIS where we met up with our friends, Bec, Dave, Hanah and Tom. It was a great concert. Our seats weren’t so good but we took the girls down to the front of the stage to watch it. It was fantastic – they could see everything and dance around. I was feeling a little seedy but luckily for me I usually don’t feel too bad until late afternoon so I managed quite well. Mum then took the girls home with her while I had a rest.
My brother, Andrew and Juliana arrived today with their gorgeous little girl, Leah.
Tuesday, 25 December – Christmas Day
We had a wonderful Christmas. It was so nice not having to worry about when we might have to travel back up to Sydney to have Olivia’s stem cells collected for a transplant (like last year)! Everything actually felt normal.
The girls woke up early and spent a good couple of hours opening presents. They were unbelievably spoilt. I think we’ll have to have a word with Santa next year. Anyway, we did get a lot of joy out of seeing them enjoy themselves so much.
We headed over to Mum’s for Christmas lunch later that morning. Once again, the girls were spoilt. They had a great time opening their presents and spending time with their cousin, Leah. They absolutely adored her. Olivia was such a mother hen, saying things to her like, “Did you have a good sleep, my little darling?” in her sweetest, softest voice. Both girls were so gentle with her and loved to kiss her and hold her hand. Sarah absolutely loved my brother’s dog, Rasta. She loved to chase and cuddle him. This made us realize that we will have to start thinking about getting a dog soon. I think we’ll wait at least another year, once we sort out all of our health issues.
We had a fantastic lunch – thanks, Mum! Although it was great to have Andrew’s family there, we really missed Bec but got to talk to her on the webcam later that day.
The girls were pretty exhausted by the end of the day but had a fantastic time.
Friday, 28 December – My birthday
Today was the big 36. We headed over to Mum and Dad’s and had a lovely lunch in their gazebo while the girls played in the blow up pool. That evening we headed out for dinner at The Chairman and Yip with some of my friends. I had a ball. The food was sensational and I even managed a few sips of some beautiful champagne. It didn’t take much for me to start feeling pretty tipsy. We all had a really good laugh, which is just what I needed.
Wednesday, 2 January
Round 10 of chemotherapy begins. Only 2 to go after this.
Wednesday, 9 January
Mum and I took the girls to the Hi-5 concert at the Royal Theatre. Dad wrote to a lady who works for Channel 9 last year to try and organize a visit to the hospital from Hi-5. Apparently, Charli, one of the Hi-5 team had agreed to visit but it never materialized. Dad recently sent another email to the same lady, who organized a meet and greet with Hi-5 at the concert. Thanks, Dad.
We arrived an hour before the concert. We were then escorted (along with a big group of other people) up to a small room where Hi-5 were waiting. We got a signed poster, some stickers and an opportunity to take photos of the girls standing with Hi-5.
The concert was great and we had fantastic seats, although the girls and I spent the whole time sitting in front of the stage.
Sunday, 13 January
Today is the last day of Olivia having to take her medication, cis-retinoic acid. She has now had 11 rounds. After a discussion with Olivia’s doctor, we have decided to give the 12th round a miss as we didn’t want Olivia to have to tolerate the excessive skin dryness once she starts pre-school. Anyway, most patients only take the drug for 6 months. We were so happy, as was Olivia, that she would no longer have to put up with the awful side-effects of the drug.
Tuesday, 15 January – Our beautiful Oli’s birthday
Today our gorgeous girl turned 4. She has been so excited in the lead up to her big day. She woke up much earlier than usual and climbed into bed with us. It wasn’t long before Sarah then woke up. I had to race out early to have a blood test to see if I’d be starting chemo tomorrow – she had to wait a little longer to open her presents.
Once again, Olivia was very spoilt. After opening all of her presents, she said “I’m a very lucky girl.”
We then had to race off for her Kid City birthday party which was from 10 til 12. Olivia and Sarah both had a ball. It was a marathon three and a half hours of kiddy amusements. It was great for me as all I had to do was make the cake. We were going to take them to the pool afterwards but soon realized that that would be crazy after seeing how tired they were getting. Mind you, Olivia refused to sleep when we got home. In fact, I can’t remember the last time she had an afternoon sleep.
Since we decided against taking the girls to the pool, we decided to set up the Slip-n-Slide. It didn’t work quite as well as we’d hoped so James managed to improvise with a watering can and some detergent! The girls loved it.
We finished off the day with a lovely barbeque with my parents and yet another birthday cake which Olivia decorated herself (I made two number 4’s). What a great day – a huge contrast to last year’s birthday.
Wednesday, 16 January
Another chemo week – round 11. I’m counting down the days now. If everything goes according to plan, I should finish my chemo on January 31. My dosage was reduced to forty percent today as I seem to be experiencing mild neuropathy, which is most likely to be permanent. The reduced dosage will hopefully prevent it from getting any worse. After all, it would be nice to be able to go to the snow again or drink at an ice bar or even hold a cold drink!
posted by Kirsty and James Lambert @ 4:08 AM
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