15 to 26 Oct 06
Sunday, 15 October
We returned to Canberra last Sunday after Olivia had her injection of G-CSF. We made sure that she got the one dose, slow release version this time. She also needs to take Bactrim on Mondays, Wednesdays and Fridays to prevent any lung and chest infections that can result from chemo. It was great to come back home, especially to see Sarah. We had really missed her after being away from her for almost a week. Unfortunately, it’s one of the sacrifices we have to make in order to for us to devote ourselves to Olivia while she is having her treatment. It’s also much better for Sarah to be in her own environment – she has been far more settled. Luckily, she is very comfortable with my family and seems happy enough for us to leave her with them.
I decided that it might be a good time to really focus on toilet training Olivia, particularly since the weather was a little warmer. So out came the underpants. She was most excited about this and loved choosing which ones to wear – the Wiggles seemed to be her number one choice. Funny that! This seemed to be quite a success. Olivia told me every time she needed to go to the toilet and on occasion, was quite happy to go by herself. In fact, she actually preferred to have some privacy at times, telling James or myself to ‘Go away’ and closing the door on us. She had the odd accident but overall, she did very well and spent most of her time in undies or pull ups.
The week seemed to follow a bit of a familiar pattern. On Tuesday, I took Olivia to the pathology centre for a finger prick to check her blood count.
By Wednesday evening, Olivia was complaining and crying out in pain everytime she tried to wee. When we asked her, she said that she had a “sore nappy”. We were concerned that she was developing a urinary tract infection. Surprisingly, her temperatures were also very low, however, she seemed quite well within herself. James and I weren’t quite sure what to do. After a couple of phone calls to Canberra Hospital and Sydney Hospital’s outreach nurse, we were advised to take her to hospital. The nurse was concerned at Olivia’s low temperatures and that she may be developing an infection, given that she was neutropenic (low neutrophils/white cells count – these fight infection). James took her to hospital at about 8.30. Olivia certainly hasn’t developed a fear of the hospital, in fact, she ran around the house excitedly and was keen to pack her backpack full of books and was the first to get into the car.
The pediatric registrar ran several tests that evening, including blood and urine tests. They were concerned that she may be hyperthermic due to her low temperatures. As it turns out, her temperatures soon returned to normal and she only had a slight infection. The doctors felt that she was well enough to return home the next day. We then had a couple of quiet days at home.
On Friday, the 13th, it was our five year wedding anniversary. We decided that it might be nice to go out for a quiet dinner. Since Olivia seemed quite well, we thought it would be a good opportunity to spend some time together, alone. We went to nice restaurant in the city with good food. Although it was great to spend that time together, it was difficult not to reflect on what was happening, which of course, meant a few tears at dinner.
On Saturday morning, Olivia was complaining that she was very tired and she did seem to lack energy. She had a rising temperature and also appeared to be quite pale. My first thought was that she probably needed a blood transfusion and James agreed. I spoke with her doctor in Sydney and she said that if we were at all concerned we should take her to hospital and that’s what I did.
On arriving at Canberra Hospital, they took Olivia’s blood to check her counts. At that stage, she became febrile and required antibiotics. She had developed an infection somewhere in her body and the doctors wanted to do further tests to find the source. One doctor wanted to take a blood culture and claimed that he could only do it by taking blood from her arm. He then proceeded to jab her several times in the arm because he could not locate the vein! Olivia was beside herself and I was distraught to see her so upset. I finally told this doctor to stop after the fourth jab. I couldn’t believe his incompetence and insensitivity to Olivia. Luckily, this doctor did not return and after several hours, her temperature returned to normal and the doctors felt it was no longer necessary to do more tests. We were in hospital with Olivia for three nights. During the last two nights, Olivia developed a cough which seemed to be getting worse. We were awake for several hours on Monday night as she could not stop coughing. The doctor didn’t seem particularly concerned but prescribed five days worth of antibiotics just to be sure.
Whilst we were in hospital, the nurses pointed out that Olivia needs to keep up her intake of fluids. We told her that she would not be able to leave hospital until she was drinking better. It was only once we started measuring her fluid intake, that it became apparent that Olivia was faking drinking. She would appear to drink for a few minutes, but the fluid level would hardly drop. Luckily, her enthusiasm suddenly increases every time we tell her that she will have to get a tube up her nose to feed her if she doesn’t eat and drink.
Before Olivia was discharged on Tuesday, she went to the outpatients clinic in the hospital to have her dressing changed, her central lines heplocked (to prevent clotting in her lines) and for her usual Day 14 injection of Vincristine (one of the chemo drugs). Olivia was pretty anxious to get home by this stage. She was becoming very tired and irritable. Mum and Sarah picked us up from hospital and we had Olivia and Sarah both screaming in the back seat. That was fun!
We have noticed that chemo is causing her to become increasingly tired. She does need a lot of rest and seems to have tantrums much more frequently. She becomes easily frustrated and often lashes out at us. Sometimes it’s difficult to determine if this is just typical two year old behaviour or the effects of the chemo. We guess that it’s a combination of both. We have become much more patient with her but, at the same time, we know that it’s important to set the boundaries and discipline her when necessary.
Thank goodness the following few days went by without any visits to hospital. We were pleasantly surprised to see that no more of Olivia’s hair had fallen out this cycle. It seems that Olivia’s blood counts were also on the rise. Life seemed to become somewhat normal. James managed to get quite a few days at work both last week and this week and the girls and I were able spend some time together doing our usual things around the house. Some friends came round to visit us on Thursday morning. It was great to talk with them about other things. Olivia really enjoyed having her little friend, Hanah, around to play.
Later that afternoon, James went to have a chest x-ray. Apparently, he was told to have one as a follow up to the bout of bronchitis he had when Olivia was first diagnosed. I thought that this was unusual, especially since he was so much better. After his x-ray, James called to tell me that he didn’t have lung cancer. Yes, lung cancer! Would you believe it? Apparently, the results of his initial x-ray showed some anomalies in one of his lungs, though he thought it would be best not to tell me about this at the time. The doctor asked him if he was a smoker or if he’d ever had tuberculosis because it looked as though there was a slight chance he had early stage lung cancer. Consequently, he advised James to have another x-ray several weeks down the track just to make sure everything was okay. Thankfully, it was! We certainly don’t need another cancer patient in our family. Besides, who would believe it?
Sunday, 22 October
We are currently on our way back to Ronald McDonald House in Sydney. Once again, we left Sarah with Mum and my family. I found it really hard to leave her this time. I don’t think these living arrangements are something you can ever really get used to but unfortunately, we have to for the time being. It will be particularly difficult this time round as we will be away for about 8 days due to all of the testing Olivia has to have this week.
Olivia seems to have a fairly good understanding of what’s going on. When I explained to her that we need to go back to Sydney, she says ‘I have to go to Sydney to have my chemo.’ If I mention that she is sick or the ‘c’ word, she excitedly says ‘Kick it the butt!’ She is so strong and has such an amazing spirit. Nothing seems to phase her. In many ways, she helps us get through this. She’s fantastic!
I am feeling fairly anxious about this week because Olivia is being re-tested to see how well the chemotherapy is working on the cancer. We are feeling quietly confident but only because the bruising around her eyes has subsided and her right eye socket doesn’t appear quite as compressed. Olivia will need to have the same tests she had when first diagnosed, including a bone scan, MIBG scan, CT scans and a bone marrow aspirate. All of which require some form of sedation and the latter, a general anaesthetic. We are not looking forward to putting Olivia through all of this again as it really takes a toll on her and we find it incredibly difficult to see her so upset.
Olivia also needs to have an audiogram to check her level of hearing prior to commencing chemo on Wednesday. One of the chemo drugs used during this cycle is likely to cause some high frequency hearing loss so this will need to be monitored carefully.
Tonight we are going to our friends Garry and Rosie’s house for dinner. This should help us to take our minds off the coming week. Olivia also enjoys going there and spending time with their baby.
Monday, 23 October
Today Olivia was due to have a bone scan. We arrived at Nuclear Medicine at 9.30am so that Olivia could have an injection of radiation for the scan which she would have two hours later. Unfortunately, Olivia needs to be sedated for the scan as it requires absolute stillness in order to obtain accurate pictures. Sedation requires fasting and Olivia was due to fast from 4.30am. Well, James and I completely forgot about this and we were actually encouraging her to eat as much as she could. By 9.30, she had already eaten a whole bowl of Weet-Bix with peaches, a juice, a babycino and a packet of biscuits. We thought it was fantastic that she was eating so much and felt so proud of her. I felt quite embarrassed when we had to tell the nurses at Nuclear Medicine that she had only been fasting for about 5 minutes! They managed to reschedule her bone scan for tomorrow which was lucky for us because they’re always heavily booked.
This freed up our day for a trip to Coogee Beach and Taronga Zoo. We managed to get down to the beach at about 11am and stayed for about an hour. Olivia loved it and spent most of the time just playing with her bucket and spade and attempting to build sand castles. James took her down to the water for a little dip (just her legs of course as she is not suppose to get her lines wet). Afterwards, we sat down to enjoy the beautiful weather and had some fish and chips.
On arriving at the zoo, we pushed Olivia around in a pram as she seemed to be fairly tired and she is also supposed to avoid too much exposure to the sun. She didn’t seem to be particularly interested in the animals at first. She spent most of her time telling us that she needed to go to the toilet and she did. Again and again and again! She spent most of her visit to the zoo doing poos. She finally started to show some interest in the animals, just as we were about to leave and told us that she wanted to come back tomorrow.
Tuesday, 24 October
Today was quite a busy day. At 8.30am Olivia was booked to have an audiometry examination to assess her current level of hearing. The results showed that there were no problems with her hearing. Future audiograms will be compared this test result to determine whether or not she has suffered any hearing loss as a result of one of the chemo drugs (Cisplatin). If so, the doctors will adjust the dosage.
Olivia then had her clinic appointment with Dr B. She was checked out and everything appeared to be fine. We found out that we will need to be in Sydney after Olivia’s next round of chemo as the doctors will need to collect her stem cells in preparation for her bone marrow transplant after Christmas. I will explain all of this in future journal entries.
At 11am, we took Olivia to Nuclear Medicine to have an injection of radiation in preparation for her bone scan. This scan required sedation. By 1pm, the nurses began oral sedation. I then spent some time playing with Olivia and noticed that she was becoming quite drowsy. She walked from a chair on the other side of the room to her bed and began to look and sound like she was drunk. She then climbed onto the bed where she began to thrash about. We had to put the side rails up on her bed and James and I had to stand on either side of the bed to prevent her from injuring herself. The nurses then gave Olivia further sedation through an injection in her leg. It took James, myself and two nurses to hold her down. She then became wild. One of the nurses was surprised that it took so long for the sedative to take effect and that Olivia was so strong and agitated. We definitely have a little fighter on our hands!
Immediately after the scan, Olivia briefly woke up and requested lemonade but then fell straight back to sleep. She continued sleeping for most of the afternoon. She seemed to awake, feeling quite refreshed. We soon afterwards returned to RMH.
I am finally beginning to feel quite strong about this whole situation. I still have my moments of weakness and can feel quite down. However, strangely enough, I think part of my strength comes from my unwillingness to accept that anything could happen to Olivia. I still don’t think I completely believe this is actually happening to us and I think that also helps me get through each day. It is a very difficult feeling to explain. I certainly feel as though I am in a much better position than what I was in only a couple of weeks ago. I have more hope and feel confident that we will see some good results soon. Most of all, I draw most of my strength from Olivia. She is amazingly strong and she is looking so well. I really believe that she can beat this. I always have.
Wednesday, 25 October
We set off to the hospital just after 9am. We spent a bit of time in the ward just waiting around. However, we were entertained most of the time. It was party day! The hospital had a theme – Around the World – and C2West’s theme was England. The ward was decorated in flags, signs, streamers and balloons and the nurses also dressed up. There were people in costumes everywhere. Olivia was visited by some policemen, the clown doctors, a magician, some Latin dancers, some frogs, a kangaroo and Fairy Sparkle (apparently that’s her real name – she had it changed through Deed Poll). Olivia entered the hospital’s art competition. She had to paint a picture on a small canvas of something in our world. She won! She won a book and a toy bunny. According to her, it was a painting of flowers. It was a very nice painting!
Olivia began pre-hydration fluids for chemotherapy at around lunchtime and then began the first of the chemo drugs at around 3.30. The first drug, Etoposide, runs for about 2 hours each day for three days. It is similar to the other drugs in that it can cause nausea and vomiting, loss of appetite, hair loss, mouth ulcers and a drop in blood cell count which increases the chance of infection. The second drug Olivia is having is called Cisplatin. It runs for about 6 hours each day for four days. This is the worst drug of all as far as nausea and vomiting goes. This can occur whist the drug is being infused and last for about 24 hours. Nausea may continue or re occur for several days. Other side effects of Cisplatin may include diarrhoea, loss of appetite, flushing and tightness of the face, kidney damage, high tone hearing loss or ringing in the ears (tinnitus), a drop in magnesium and sometimes calcium levels in the blood due to loss from the kidneys, a drop in blood cell count and tingling or numbness in the fingers and toes. Olivia’s kidney function and her hearing will be monitored carefully throughout the treatment. Pre and post hydration fluids are crucial during the treatment to ensure that the drugs are being flushed from Olivia’s system as quickly as possible and to minimise any harmful damage to organs. These drugs require a couple of hours of pre-hydration and about 21 hours of post-hydration.
Thursday, 26 October
I stayed in hospital with Olivia last night. And, oh what a night! I think I got about three and a half hours of interrupted sleep! It took a while for Olivia to get to sleep. It always takes a while for her to settle in hospital. Unfortunately, we had to share a room with two other children so it can get pretty noisy. She had been asleep for a couple of hours before I heard her coughing and spluttering. I then realised that she was vomiting. Our poor little girl was so sick from the Cisplatin. She was so upset and continued to vomit for the next twenty minutes. I eventually became upset at seeing her so sick from the drugs. When the nurse finally came, we cleaned her up and changed her sheets and pyjamas. I then hopped into bed with her to calm her down. At that point, I didn’t feel so strong anymore and started thinking about what we are putting Olivia through. It’s heartbreaking. I guess I just have to think of the end result and remember that these are the drugs that are killing the cancer.
Olivia ended up having a reasonably good sleep. She was a little unsettled at times but managed to sleep through all of the beeping the machines were making and the other kids’ crying. Surprisingly, she seemed a lot better by the morning, although, she was very pale.
Olivia was had to fast for the morning so that she could have a general anaesthetic for a CT scan. I alerted the anaesthetist to the fact that Olivia was pretty wild when she awoke from a previous anaesthetic. She told me that she would hopefully respond better to the drugs she was going to give her. Well…I don’t think so. She was absolutely crazy when she woke up. She was hitting and screaming at me, telling me to go away and that she wanted Daddy (who had gone to the shops). This went on for quite some time. We then began to wheel her back up to the ward on the bed but she didn’t want that. I ended up carrying her up with the nurse but she didn’t want that either. She was pushing me away. She then weed all over me. We got some towels to place between Olivia and myself but she didn’t want that either. She fought me the whole way back to the ward to get rid of the towels. We attempted to change her nappy but that was also unsuccessful and she ended up without one for quite a while. The nurse who was with me was quite surprised by her strong reaction to the anaesthetic and I was exhausted!
posted by Kirsty and James Lambert @ 11:17 PM
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