Transplant and Tests, 15 Jan to 23 Feb 07

It has been some time since we have updated this journal - unfortunately James’ laptop crashed just after Olivia’s birthday.

Monday, 15th January – OLIVIA’S 3RD BIRTHDAY

HAPPY 3RD BIRTHDAY TO OUR BEAUTIFUL ANGEL, OLIVIA.

I arrived at the hospital this morning as soon as I could. Olivia was very happy and excited to see all of her presents. She loved opening them all and I think she was pretty happy with what she got. Later in the morning, the pink and purple balloons I had ordered arrived. She was thrilled. Her room looked fantastic. She also received cards, presents and more balloons from family and friends. One of the nurses even made her a lovely card. She was very spoilt but deservedly so!

I rushed out later in the morning to pick up Olivia’s birthday cake – a little chocolate mud cake (she loves mud cake). I also picked up a few other little presents – just a couple of little books and duckies for her bath (she’d been asking me for some duckies for days).
When I arrived back at the hospital, we invited her nurse into her room to sing Happy Birthday to Olivia and to have some cake. Olivia loved it and particularly enjoyed blowing out the candles on her cake. However, she only ate a morsel of cake as she has lost most of her appetite. We gave most of the cake away to the nurses.

So many people, including doctors, nurses and other patients and their parents, popped by during the day to wish Olivia a happy birthday or to sing to her. They had to use the intercom system, of course, as she is not allowed to have visitors. The play therapist came by with a present for Olivia and drew the Big Red Car on one of her windows for us to paint.

We spent the day with Olivia playing with some of her presents – Vtech games, My First LeapPad stories, Barbie styling head, reading books and doing craft, etc. We think she had a great day. Although we tried to make the day as fun as possible, we were still sad that Sarah and the rest of my family were unable to make it up to Sydney. Mum said that Sarah’s rash has disappeared but we felt it would be best to keep her away until we knew that she was well and truly clear of any virus.

Later in the day, Olivia’s oncologist came by just to wish her a happy birthday. We then spent some time talking to her radiation oncologist. I found this discussion very upsetting and spent most of it in tears. She basically told us how she would be treating Olivia with the radiation. They will be using 21 gray of radiation, which is apparently not a very high dose and there will be 14 doses. She will be treating all of Olivia’s skull because the disease was very widespread in that region. I was devastated and not really expecting to hear that. We were told that her pituitary gland will be affected and that she will require injections of growth hormone when she’s older (this may mean she might be quite a bit shorter than what she would have been). It may also affect the growth of her skull (hopefully only slightly) and might mean that her hair will also be thinner. The doctor will be irradiating her spine which is likely to affect about 3, maybe 4 vertebrae - this will also affect her growth and may knock a couple of centimeters off her height. She then told us that Olivia’s right clavicle and cheek will also have to be irradiated as the recent bone scans show that these areas are still hotspots for disease. The bone growth in these areas may also be affected but hopefully there will only be very subtle differences. Naturally, I was feeling very scared and distressed. One of my biggest concerns was that her appearance might be altered and that this might be a challenge for her when she is older. The doctor didn’t seem to think that this would be a big problem. In the scheme of things, the most important thing is that she is still here with us, alive and well – that’s all we can ask for. I guess we’ll face those other issues when we have to.

Sometimes I still wonder if this is all really happening to us. You’d think that four to five months later I might have moved on from those thoughts but it can still be very hard for me to get my head around it. I just can’t believe that this could happen to such a beautiful little spirit. She just doesn’t deserve any of this – it’s horrible. However, we continue to remain positive and take heart in her recent scan results and how remarkably well she has handled the treatment so far.

I stayed with Olivia overnight.

Tuesday 16 Jan 07 – Transplant Day

The day began with Olivia requiring a Nasal Gastric Tube (NGT). She was no longer able to tolerate any food or drink orally and the nurses had to insert an NGT in order to provide her with nutrition and to keep her gut moving throughout transplant.
We both found this emotionally very difficult and both shed tears. It was a terrible experience. Olivia fought it and was so upset – she was beside herself, as you would imagine. Afterwards, she fell asleep, sobbing. It was heartbreaking. We had told Olivia throughout this treatment that she had to eat to avoid having a tube put down her nose. To her credit she avoided it right up until transplant, apparently one of only a few kids to ever do so. It also brought back bad memories of when Olivia was born, fighting for her life.

Olivia’s bone marrow transplant took place at 1pm. She was actually asleep for the procedure but this was mainly due to the phenergan she was given prior to transplant to avoid any allergic reaction to the preservative used to store the stem cells. For a procedure so critical to her survival, the transplant itself was a fairly simple process. There were two scientists and the bone marrow transplant nurse consultant and specialist present. Olivia’s bags of frozen stem cells were defrosted in a tub of hot water and then slowly injected them into her central line by the nurse consultant. These stem cells somehow gradually find there way into the bone marrow and (hopefully) engraft, eventually producing new blood cells. The stem cells were mixed with a preservative prior to freezing. This preservative is excreted through her lungs almost immediately and continues for up to 24 hours. It has an odour much like the smell of creamed corn – a sweet, slightly sickly smell. I noticed the odour straight away, whereas James claims he couldn’t smell it. It was particularly noticeable on entering Olivia’s room when being gone for a while. As a result of the preservative, Olivia’s blood pressure began to rise (which is not uncommon for transplant). However, she was monitored very closely, with observations being taken frequently.

Later in the afternoon, Olivia vomited up her NG tube through her mouth. We were so disappointed as we knew that another attempt to put a tube in would have to be made the next day. The thought of Olivia going through all of that again really distressed us.

Today was certainly filled with mixed emotions. Although the transplant appeared to be a fairly straight-forward procedure, it was a very moving experience, knowing that by giving Olivia those stem cells, they were giving her life. Without them, she would not survive the high dose of chemotherapy she had been given.

I was also still very emotional over yesterday’s discussion with the radiation oncologist. I guess I will just have to deal with it like I’ve had to deal with everything else! We have no other choice. The whole NG tube experience has also drained us emotionally. Let’s hope the next one stays down.

Wednesday 17 Jan 07

The following journal entry was written by James and Kirsty – sorry about the confusion. It’s a little disjointed and some of the dates aren’t completely accurate but I think we’ve covered the most important things.

There will be many things that we don’t mention in the journal as there was so much going on throughout transplant that it would be too difficult to include and explain everything.

One thing we forgot to mention was that each morning and evening, Olivia had to be weighed. The doctors had to keep a very close eye on Olivia’s weight because the kids can retain a lot of fluid in transplant and it is critical that the nurses maintain good fluid balance. Weight gain and fluid retention can mean there are complications, particularly involving the liver. These are just a couple of symptoms of veni-occlusive disease. Olivia’s weight did fluctuate throughout transplant and she appeared to be quite puffy around the face and ankles. At times, she did retain a lot of fluid but the nurses usually managed to keep it under control. Olivia’s liver did swell, but fortunately, she didn’t develop any major problems.

Shortly after the stem cell transplant, Olivia’s health started to deteriorate - as we were told it would. We were warned that we may find transplant a real shock, as we had been lucky to date and Olivia had not really been very sick during her previous rounds of chemo. However, she started to get a very sore mouth and stomach as mucusitis set in. She was in a lot of pain and was vomiting large amounts of sticky mucus. What continued to amaze the nurses is that she still requested the odd sip of lemonade and even orange juice at one stage, regardless of how sick she was. She was so brave - initially she denied that she was in pain. However, it was soon evident that she was in a lot of pain from all the internal ulcers. She was soon put on high doses of morphine, however, she started to experience sudden spasms and began twitching quite frequently. The “pain team” (specialists) were called in and quickly put her on two alternative high strength pain killers called Fentanyl and Ketamine. Sadly, even on the highest dosage allowable, she still was still in a lot of pain. She was barely able to sleep for more than 10 minutes at a time, before she was woken up by the pain. Her cries of pain, would in turn wake us up. During what little time she did spend sleeping, she seemed to cry out and talk in her sleep. The ketamine can cause hallucinations and we believe that this was what was happening in her sleep.

We had a bit of a scare today. Last week, we had asked Olivia’s oncologist if we could see her previous CT scans to see what remained of the cancer. She told us that she could show them to us the following week (Monday or Tuesday – those were the only days she was working). Unfortunately, she was too busy to show them to us on those days, which meant we would have to wait another week. I wasn’t satisfied and I needed reassurance now. Therefore, James and I asked the oncologist on transplant rounds if he could supply us with a copy of the CT scan report. He obliged. He actually gave us all of her CT reports but didn’t explain it any of it to us. What was bad about this situation is that we read all of them and of course, we didn’t have a doctor with us to interpret the information. On the latest CT scan, it was reported that a spot about a centimeter in size had appeared on Olivia’s liver (her liver had previous been clear). The radiologist described it as being consistent with metastatic disease. James and I were devastated as this meant that the disease had spread while she was in transplant. We have heard of kids relapsing whilst in transplant. However, we were bewildered as it would be pretty unusual for the disease to have spread considering that Olivia has been responding so well to treatment so far. We decided not to get too worried until we asked the doctor about it in the morning. As it turns out, the doctor told us that it was most unlikely to be anything of concern. He said it was unlikely to be cancer and that it could be any number of other things, besides, transplant would probably get rid of it. Thank goodness! How relieved were we!!! And, as it turns out, we never quite got the answer we were looking for as far as wanting to know how much the tumour on Olivia’s spine had shrunk. Olivia’s oncologist showed me the actual scan the following week and it showed that there was very little disease left in her spine. I would have like to have seen no disease but I was reasonably pleased with what I saw.

Friday 19 January 07

Now that Sarah was over her rash, Kirsty’s family brought Sarah up to visit for the day. They gave us a rare break sitting with Olivia while we went and had lunch with Sarah. In mid afternoon, Kirsty’s mum got up from sitting beside Olivia, and got her foot caught on Olivia’s main line that had been dangling on the floor. Despite her best efforts to free herself, she fell down hard and snapped Olivia’s central line. This created some panic as we called the nurses to try and stop the flow of drugs from the pumps, and blood from Olivia’s central line. Once the initial panic was over with, we were okay, as we knew of another family who had done this and knew than it could be repaired. Kirsty’s mum however, was not so reassured - she was beside herself. Within a few hours of her line breaking, Olivia started to get a temperature. This was expected during the transplant, though could also indicate that her central line had developed an infection. Blood tests were taken every day and sent off to the lab to see if they could culture any bugs from her central line. If her line was infected, they would have to remove it. This was a big concern, as in her current state, she was not fit for surgery. Thankfully it turned out to be okay, and was just a coincidence that she spiked a temperature just after her line was broken.

Saturday 20 January 07

At one point, Olivia had about 9 different drugs being pumped into her at the same time. Unfortunately, each one of these machines beeped every time the dosage was finished and some of them were considerate enough to beep 15 minutes before they were due to finish – not unlike an alarm clock going off to tell you that it is going to wake you up in fifteen minutes! Some evenings, we would look at the time remaining and realize that it would be pointless going to sleep before about 2am. Due to the large quantity of liquids being pumped into her, to keep up her fluid intake and also dispel the residual chemo drugs, she also needed to have her nappy changed quite frequently. It seemed hat if we were lucky, we would be able to get around 3 hours of interrupted sleep a night.

The nursing staff were excellent and were kept very busy by us. Most of the staff genuinely loved kids and tried their hardest to make such an awful time a little easier for ourselves and Olivia.

Olivia was getting a build up of sticky mucus in her throat that was making it hard for her to breathe. We sometimes tried to use the suction to remove some of the mucus, however it hurt her a lot when the suction wand touched her mouth ulcers. She also required oxygen, as she was not getting enough on her own. Unfortunately, she hated the mask, so Teddy ended up wearing it and he lay next to her so that she was able to get some oxygen. Olivia was very close to requiring intubation, meaning that she would need a tube down her airway in order for her to breathe well enough. Luckily, she managed with the mask. Olivia was vomiting up a big sticky mass of mucus quite often. It was so thick that we quite often needed to pull it out of her mouth. She generally let out a cry before she threw up. The trouble is we found it difficult to distinguish between her cries of pain and cries of vomiting, so found ourselves constantly reaching over to her with a dish to try to catch the vomit. Olivia would try to talk but all of the thick mucous in her mouth made her really difficult to understand, hence, at times, communication broke down. This was heartbreaking as we would try to interpret what she was saying and whenever we got it wrong, you could see her struggling to repeat it and tears of frustration rolling down her cheeks. Olivia seemed to get a lot of comfort out of having us hold her hand. Kirsty, in particular, would often sit or lie next to her for hours, holding her hand.

Unfortunately, her vomiting meant having to get her out of bed to change the sheets and her pyjamas and sometimes give her a bath – often in the middle of the night. It obviously hurt her a lot to be lifted. Despite all this, she put on a brave face and never complained – she is such a strong girl. Most of the time when she vomited the mucus, her feeding tube came up with it. However, it got to a point early on in transplant, when Olivia was no longer tolerating the nasal gastric feeds and she had to be fed intravenously, using TPN (Total Parentatal Nutrition). Previously when she had vomited up her tube, it had to be reinserted but usually the next morning. Of course, she hated this. It was obviously quite painful for her when they inserted it, as it rubbed against the ulcers in her throat and stomach.

Whilst Olivia was very sick, we both spent the whole day by her side. We took it in turn returning to RMH late at night simply to sleep. All three of us were severely sleep deprived. Kirsty and I were both running on adrenalin by this stage. We found it very difficult to cope on a few hours of interrupted sleep and soon found that, in order to cope, the person who stayed with Olivia had to go back to RMH in the morning to sleep for an extra hour or two whenever possible.

Each morning, we would be visited by a team of up to 8 doctors and nurses. At first it seemed strange to be told that she is doing well, when she had been crying out in pain, vomiting and struggling to breathe most of the night. We soon realized that what they meant was that she was doing well for transplant. We always seemed to have a lot of questions for the Doctors, the most common one being “Is that normal for transplant”? The doctors usual answer was ‘It is not uncommon’.

As expected, Olivia’s blood counts were severely depleted by the high dose of chemo administered during the conditioning. Her haemaglobin (red cells) dropped and she occasionally required transfusions. Her platelets dropped dramatically and were usually below 10. This meant that she required a number of platelet infusions. Platelets have a very short lifespan and that is why they continued to drop so frequently. Olivia’s white cells remained at 0.01 during her sickest period and her neutraphils were non-existent (these are the white cells that fight infection). Basically, her stem cells were all dying. It was the injection of her own stem cells back into her own blood, that would save her life.

Olivia was lucky that her stem cells appeared to engraft quite early (about 9 days after transplant). She gradually started to recover as her blood count picked up. She was able to start taking tiny sips of lemonade and was able to sleep for a while without constantly waking up. She still seemed to be experience intermittent, sudden bursts of pain, both when asleep and awake. As the sores in her mouth (and internally) slowly started to heal, she was able to sleep a bit better at night. Thankfully, so too were we.

Olivia had not been eating or drinking for some time now and has also lost a lot of muscle mass from lying in bed. She has now dropped from 15.5kg down to around 14kg. Once she engrafted and began recovering, the doctors decided to reintroduce her nasal gastric feeds slowly. Once they increased these feeds, they could turn down the volume of her intravenous nutrition. However, it took some time for her to tolerate the NG feeds. She had one to two big vomits a day. The dietician changed the type of feed to a partially digested feed which she seemed to tolerate a little better. However, it took a number of days before she was tolerating an adequate volume.

Olivia spent a lot of time watching DVDs on her little DVD player. Despite having the entire Wiggles collection to choose from, she kept watching “Yule Be Wiggling”, up to five times a day! We also tried to read to her and help her draw and do craft.

Cleanliness was of utmost importance during the transplant, minimizing the possibility that we would spread any germs to Olivia. We all had to wash our hands whenever we entered the room, disinfect everything that we brought in, change her sheets and mop the floor every day. We weren’t even allowed to wear our watches. When Olivia was sleeping, we would have the curtain drawn, covering the clock. We seemed to lose track of the time as the hours dragged by.

Saturday 27 January 07

Kirsty’s mum and Sarah came up to stay with us for a while. It was such a relief to be reunited with Sarah. Whilst we accepted that it is best that she stay in Canberra whilst Olivia was so sick, we missed her so much. This whole experience has been very tough for her. She is constantly being moved from one house to another, from her parents to her grandparents. Whilst we were in our small room at Ronald McDonald House (RMH), it simply wasn’t practical to have her with us in Sydney. Luckily, a very caring person with a lot of spare cash bought a house just around the corner from the hospital and donated it for RMH to use. It is a large renovated double storey 4 bedroom house with two bathrooms and two TV rooms. They normally have around three families in there at any time, usually long term residents. Fortunately, two families recently moved out and the entire downstairs area was now vacant. There was a shortage of transplant rooms available at the main RMH complex and the manager knew how much we were dying for extra space to house Sarah and Kirsty’s Mum. The remaining family was expected to be ready to move out about 3 weeks after we moved in, which was anticipated to coincide with Olivia coming out of transplant. Trouble is Olivia had to be isolated upon discharge and we have learnt that it is very difficult to plan anything around one patient’s recovery, yet alone two.

Olivia loved having Sarah come into her transplant room and giving her cuddles. Unfortunately, the transplant room was not a good place for Sarah, and we could not leave her there for any length of time, for fear of her pulling on one of the machines or lines. Confirming our worst fears, in the blink of an eye Sarah suddenly grabbed Olivia’s NG tube and ripped it out. This was about the fifth time her tube had come up. Unfortunately, they had to reinsert the tube immediately as it was important to keep Olivia’s gut moving.

As Olivia slowly regained some strength, she kept asking to go outside. We had to clear all other people from the balcony area and put a surgical mask on her. At first we had to take her out in a wheelchair, as she struggled to even stand up. She loved going outside – understandably, considering how long she had been stuck in bed. I must admit we enjoyed the fresh air too. Although, we had to lug with us Olivia’s massive IV poles with about 8 or 9 pumps attached to them. This proved to be a bit of a challenge at times.

Gradually, Olivia was able to start walking again. She was pretty wobbly to start with, but she loved showing off to all the nurses how well she could walk. As she walked past the nurses’ station, she would stop to wave to everyone and often had a chat with whoever was there. She was so stiff on most of her walks, she looked like a robot – it was very cute.

Thursday 1 Feb 07

I had been waiting for an opportunity to return to Canberra to sort out a few things in the garden and also at work, including getting a new laptop. Thankfully the house was looking pretty good. Thanks to the Hedges for taking care of the house whilst we were away and also to Nana, Mum, Dad and Aunty Jenny for the money so we could install a dripper system and mulch, hopefully ensuring that the garden will survive.

As it happens, the first night I was away, was the night that Kirsty decided that she had had enough of this whole situation and just wanted to return to a normal life. Mind you, this was triggered largely by Sarah pulling out Olivia’s NG tube out, as mentioned previously.

Saturday 3 Feb 07

I returned mid morning on Saturday and stayed with Olivia that night. As it turns out Olivia had a bit of a rough night and I was awake most of the night. She seemed to have been experiencing some pain. The trouble is I forgot to tell the nurses. When the doctors came in the next morning, they said that they were very happy with her progress and that we should be able to take Olivia home on the Monday. This came as a bit of a surprise to us, as she was clearly still in a lot of pain, particularly at night. The other problem was that this was much earlier than originally planned and the other family we were living with was not scheduled to move out for another week or two. Thankfully, the doctors subsequently decided that Olivia should stay until her pain subsided, she was drinking fluids and vomiting less frequently. The other family in the house decided that they would be able to go home on Thursday, giving us (read: Kirsty’s mum) some time to clean the house from top to bottom before Olivia could come home on Friday.

Throughout the week, James, Mum and I took turns sleeping at the hospital. This enabled James and I to get more rest and spend some more time with Sarah. James and I also spent Olivia’s final week in hospital learning how to prime her feeds and connecting them up to her NG tube as we would need to do this at home. At this stage, Olivia’s feeds were also cut down from 24 hours to 16 hours a day. This was done to encourage her to eat during the day. She gradually managed to eat a very small amount of yoghurt on a couple of occasions and had a few sips of lemonade. It wasn’t much but it was a start.

During the week, we met up with Olivia’s oncologist and the radiation oncologist. We booked a date for Olivia’s radiation planning – this involves doing a CT scan of her body and making what they call a ‘beanbag’ for her to lie on during her radiation, as well as a mask. The doctor also told us that she would be using a new technique for irradiating Olivia’s skull. This technique manages to avoid the brain, which is good news but it will still affect Olivia’s pituitary gland, meaning she will require growth hormone injections when she is older.

We later had a chat with Olivia’s oncologist about a number of issues, including relapsing. She described cancer cells as being ‘clever little buggers’. She said that they eventually work out a way to filter out or ‘pump out’ the chemotherapy drugs. The cancer cells, therefore, become more resistant to treatment and that is why relapsing is such bad news. Of course, I spent a lot of time thinking about all of this and, in turn, worried incessantly about it.

On the days leading up to Olivia’s discharge, we had to be briefed on what we had to do once we took her home, what medications we needed to give her, and her nutrition plan. We had to hire a feeding pump and purchase all the necessary equipment for her nutrition. There was a lot to do and remember – it seemed quite overwhelming. The dietician wanted Olivia to have about 1300mLs of feed. This would mean that we would have to feed her for around 19 hours per day – not very practical! However, the dietician also said that she would be happy for us feed her overnight for up to 14 hours, particularly if Olivia supplements that with a small quantity of food and drink. Hopefully, this will give her the required amount of calories to regain her weight. The goal is for Olivia to get her weight above 15 kilograms. This is still less than what she weighed prior to transplant but it is hoped that once she reaches this goal, she may be able to have the NG tube removed. At the same time, the dietician is talking about leaving it in throughout radiotherapy since there is so much fasting involved.

Thursday 8 Feb

It was our little Sarah Beara’s first birthday today. Mum stayed with Olivia last night so that James and I could spend some time with Sarah in the morning while she opened her presents. She was in a very good mood and had a ball playing with all of her new toys. She gave us lots of beautiful, big, Sarah cuddles. For those of you who don’t know, Sarah is an incredibly cuddly baby. She absolutely loves a cuddle. She clings on very tightly, nestles into your shoulder or chest and just cooes for ages. Nothing makes her happier than a good cuddle. It’s very, very cute.

Sarah’s birthday wasn’t exactly all that I dreamed of for her first birthday but there’s not a lot we can do about it, unfortunately. However, she didn’t seem to mind and I’m sure that we’ll make up for it in years to come. We had a little celebration out on the ward’s balcony with a chocolate mud cake, which Sarah absolutely loves. She had chocolate mud cake all over her face by the end of it. I think she enjoyed herself.

Friday 9 Feb 07

Kirsty stayed with Olivia the night before she was being released. Unfortunately, Olivia’s white cell count and neutraphils had plateaud over the previous 4 days, rather that go up as expected. They were nowhere near the normal range and won’t be for a very long time. We expected them to rise steadily. However, it was our understanding that this could happen. The oncologist on transplant rounds that morning (not Olivia’s usual doctor) did not share our optimism. He stated that Olivia’s white cell count wasn’t what he had hoped they would be at this stage and that this was not normal for transplant. He indicated that this could mean, among other things, that Olivia was relapsing (this would be extremely serious at this stage). He then shook Kirsty’s hand, wished her all the best and walked off. She was simply floored. The thought of the neuroblastoma possibly returning prior to the completion of her treatment made her feel sick. Thankfully, one of the transplant nurses and the fellow (doctor) in the room at the time were quick to reassure her that the blood counts can plateau at this stage and it’s not all that uncommon. They agreed that what the oncologist had suggested could be true but highly unlikely, especially since Olivia had been responding so well to the chemo. They didn’t think that it was anything to worry about.

Olivia has been an amazing girl and made it through the transplant in only four weeks. She was released on Day +23 (from transplant day, not including the time spent having chemo). We were originally told to expect it to take at least five weeks. We suspect that the oncologist that gave us the scare had assumed that Olivia had been in for longer, so her blood counts should have been higher. We also remembered that her blood counts had stalled for over a week after the fifth round of chemo, which delayed our attempts to collect her stem cells.

Unfortunately, the oncologist cast a bit of a shadow over what was to be a very exciting day. We decided not to worry too much about it as it will be next week’s test results that will create the most accurate picture of what is going on. Everything hinges on those tests!

It took a while to get out of the hospital. Olivia required a platelet infusion, central line flush and dressing change. There were also other bits and pieces to organize. By the time we actually left, it was around 4.30pm. It was a great to be able to finally bring Olivia home and to be together again as a family. Olivia was clearly very happy to be with us at the house. We were all elated.

Olivia’s total isolation period is 42 days from transplant. This means that she must be isolated from the general public during this period. For the most part, we will be keeping Olivia at home. We are allowed to take her for walks but should avoid public areas. She must wear a surgical mask at all times in the hospital (except in isolation rooms). The masks must be changed for each trip as, apparently, they only provide protection for up to 20 minutes.

We began feeding Olivia through her NG tube overnight – Olivia calls the formula her “milkshakes”. Unfortunately, it requires us to get up in the middle of the night to top it up.

Saturday 10 Feb 07

Olivia vomited up her NG tube this morning. Being a weekend, we had to take her to the children’s emergency ward to have another tube reinserted. She normally hated having it inserted, but this time, she was in noticeably more discomfort for a much longer time. We immediately expressed our concern to the nurses – we believed that the tube was not in far enough. They arranged for a chest x-ray that eventually revealed that the tube was about 3 inches short of her stomach so would have been in the area where she had ulcers. She stopped crying within a minute of having the tube inserted deeper. It was very upsetting to see her suffer unnecessarily.

Monday 12 Feb 07

Today, Olivia had the first of 4 days of tests to determine whether the chemo and transplant had eliminated the neuroblastoma. She also has to undergo a bone marrow aspirate and trephine next Tuesday. She is required to fast during her tests, so we have to get up and disconnect her feed at around 3am and flush her lines.

The first of Olivia’s tests was a bone scan. She required sedation for this test. Because Olivia had to be in isolation, they put us back in her transplant room. We couldn’t believe it – that is the very last place we wanted to be, especially since we’d only just got out of there.

Tuesday 13 Feb 07

Olivia had CT radiation planning today. As I have previously mentioned, this is when they make a ‘beanbag’ and mask for her in preparation for her radiation which is due to begin in two weeks. As usual, Olivia awoke from the general anaesthetic in a highly agitated state (many might say ‘feral’). She was not happy at all and didn’t seem to know what she wanted. We have to watch her carefully when she is like this as she throws herself around a lot, and we always worry that she will bang her head on the bed rails or fall onto the floor. It took about an hour for her to calm down.

At around 2pm, a staff member from Nuclear Medicine, came up to C2North (the ward where Olivia was kept in isolation) to give her an MIBG injection. We were then able to go home.

Later in the afternoon, I received a phone call from Olivia’s oncologist who told me that Olivia’s bone scan came back as normal, whereas it previously hadn’t. We were thrilled with this news. It was very promising.

Wednesday 14 Feb

Today, Olivia had her MIBG scan. All of her scans are important and you can’t really have one without the other, but this one was likely to be the most telling for us. The MIBG scan (as I’ve mentioned before) is where a radioactive isotope (MIBG) attaches itself to neuroblastoma cells, thus indicating where there is disease in the body. Olivia had to miss her last MIBG scan because they were busy trying to collect her stem cells that week. We’re pretty anxious to hear the results of this one.

Thursday 15 Feb

I took Olivia up to the hospital for her CT scan in the early afternoon. Unfortunately, this involved a bit of a wait. This was disappointing as I rang them earlier to inform them of Olivia’s situation, post bone marrow transplant and to find out when we could come in to avoid any waiting times. They didn’t seem to understand the concept of ‘isolation’ as they left us waiting in a small alcove with a curtain pulled across. Rightly so, James and I were paranoid about her picking up infections. I was mortified when the nurse told me that I could change Olivia’s nappy in the public toilets. I told him that this was unsatisfactory so he had to go and wheel in a bed with clean sheets.

Once again, Olivia was amazing, keeping very still throughout her scan which took about 45 minutes. She was very proud of herself, as was I.

Olivia is no longer vomiting and seems to be able to tolerate her feeds and even eats a little dinner. It’s hard to keep her properly nourished, as the milkshakes run all night, and she is so full in the morning that she doesn’t feel like eating till later in the day. She is starting to eat a little bit of dinner and has even developed a liking for broccoli, which she went off before the start of her treatment.

Olivia still cries out in pain whenever she does a poo. The doctors believe that this is likely due to the remaining ulcers in her bowel. She is also very restless at night and seems to dream a lot, apparently about both good and bad things. She talks a lot in her sleep, sometimes telling us that she wants to play games or watch the Wiggles. Other times, she just cries out. The combination of her talking and crying in her sleep, her machine beeping and Sarah waking is ensuring that Kirsty and I are still very sleep deprived.

Friday 16 Feb 07

Today is the day that we have been anxiously waiting for – Olivia’s test results. Every Friday the doctors meet with the radiologist to discuss patients’ scans and test results. Shortly after the meeting, one of the fellows rang me with the news that we were so hoping to hear - Olivia’s tests had all come back clear and that she is now considered to be in complete remission! This was the best news we have ever heard. Our little girl is kicking it in the butt! The primary tumour in her spine is completely gone. The tumours in the head, cheek and clavicle are also gone. The damaged bones in her skull have healed and her urine catacholamines test (which detects the presence of neuroblastoma) came back clear. There was no evidence of there being any abnormalities on her liver. There was some evidence of calcium deposits in her lymph nodes, though this is considered to be a residue of where the cancer used to be. She still has to undergo the bone marrow aspirate on Tuesday, however, the previous aspirate was clear, so it would be very surprising if this picked up any signs of cancer.

Mum and Dad treated James and I to a celebratory lunch while Mum looked after the girls. It was good for us to spend some time alone and to discuss our feelings. We really needed it. This whole experience just brings home to us all that we have been through over the past few years. Out of our five and half years of marriage, we’ve done it pretty tough for the past three and a half. So far, we’ve made it and we did it together, as a family. We are overcoming life’s biggest challenges.

Whilst we are ecstatic that she has responded extremely well to date, we are aware that we could still have a difficult few years ahead of us. Neuroblastoma is a very aggresive cancer with a very high rate of relapse. It is a very difficult disease to treat the second time round and the prognosis is extremely poor. We are choosing to remain positive and believe that Olivia will triumph over this horrible disease. She is a special girl, she is strong and determined and we think that her spirit, above all else, will get her through this. She has had this same amazing spirit from the day she was born. She fought to survive at the beginning because she was determined to be here in this world. It is this same fighting spirit that will keep her here this time.

Kirsty’s mum has been fantastic, doing all of the cleaning and cooking, looking after Sarah when we need to take Olivia to the hospital and just giving us a break. She returned today to Canberra for a well earned break. We already miss her a lot!

Saturday 17 Feb

The weekend was fairly quiet. It’s difficult to think of places to take the girls where there aren’t too many people around. We generally take them for walks around the local area. Olivia had been nagging us to take her to the lake (I think she was thinking of the lake near our home in Canberra). On Saturday, we took them to Centennial Park to see if we could find a lakeside area where the girls could feed the ducks and swans. However, as our luck would have it, there was a big concert in the park that day with big crowds and some road closures. We were a little disappointed but after taking half an hour to drive a few kilometers, found a smallish lake with some ducks and that was good enough for us. Olivia really enjoyed feeding the ducks.

We spend most of our time at home so the girls can play together.

Tuesday, 20 February

I took Olivia up to the hospital at 10.30am. We caught up with her dietician who was very pleased with how much Olivia had been eating and with her weight gain – she was now 14.8kgs. She wants Olivia to continue with the night feeds, possible through the duration of radiation. This is because she will be fasting every day for the general anaesthetics and she is concerned that her weight may drop again. The dietician was impressed with Olivia’s current appetite, given that most children take a lot longer to regain their appetite after transplant.

Olivia then had a blood count done and a check up with her oncologist. Her doctor was thrilled with the news of her remission. She was also really pleased with the progress she has made since transplant. I pointed out to her that she was a very restless sleeper and she suggested that I speak with the hospital psychologist for any ideas as to how this can be resolved. James and I believe that Olivia is suffering from a bit of post traumatic stress, which only seems to surface in her sleep.

It wasn’t too long before Olivia went in for her bone marrow aspirate. Once again, she was given a general anaesthetic. Yep, here we go again. She didn’t wake up too well from this one either. James and I are dreading the 12 doses of radiation and going through this every day. We realize it’s an awful experience for Olivia but it is extremely difficult to calm her down after a GA. It usually takes no less than an hour to calm her down. On this occasion, she was so upset and was screaming. She began to nag me to have another scan. She kept repeating ‘I want another scan now’ as she sobbed away. Bizarre! If anything, I thought that she’d be pretty keen to avoid them. Olivia also repeatedly requested to go home but I had to tell her that we couldn’t go until she calmed down and was happy. So, she would spend the next couple of minutes trying to convince me that she was calm as she would sob away saying ‘I’m calm now, I’m happy now’ before she began to scream again.

Once Olivia finally did calm down, she was in great spirits and as happy as could be. We were unlikely to get the results of her aspirate and trephine for a while but we’re confident that they will be clear. Once again, let’s hope it stays that way.

Wednesday, 21 February

We took the girls down to Maroubra beach this morning. It was a beautiful day and not too many people at the beach. The girls loved digging around in the sand and Olivia loved the water, although she was only able to dip her legs in (got to watch out for her central line). Sarah wasn’t so keen. She preferred to curl up into a ball and cuddle into me, where she fell asleep.

Friday, 23 February

On the whole, this week has been quiet and fairly uneventful, which is great. We finally got a bit of a break from the hospital. Our next visit won’t be until Monday when Olivia sees her oncologist for her weekly check up. Radiation will begin on Tuesday.

I took Sarah to hospital for her 12 month immunization injections. She had three needles and was very brave.

I think Olivia is really looking forward to going back to Canberra. She keeps saying ‘I can’t wait to go back to Canberra. I can’t wait to sleep in my own bed’. I have to say that we can’t wait either! We just want to have some sort of a normal life back.

I should point out that Olivia’s treatment does not end after radiation. She will need to take cis-retinoic acid for six months. I think it’s a strong vitamin-like tablet that apparently changes neuroblastoma cells into a more mature, benign type of cell. We will be given further information about this on Monday.

Unfortunately, Olivia is most likely to be immuno-suppressed for a good part of this year. It can take a good six to twelve months for some of her infection fighting cells to recover after all the chemo and transplant. This means that we will still need to take precautions, particularly when socializing with other children and taking her to very crowded places. It would have been nice for her to go to pre pre-school, playgroup, swimming lessons and be involved in other social activities but we don’t think it’s worth the risk. We will certainly ensure that she makes up for it next year – there are so many things she would love to do. Unfortunately, this also means that we will have to limit what Sarah does as well as we wouldn’t want Sarah to pick up any bugs and pass them onto Olivia. What may be considered a not so serious infection in some children, could be a life-threatening illness to Olivia. We will still allow the girls to socialize provided that their little friends are well. They still have to have a life. It is likely that Olivia will need to recommence her immunizations when she is four years old.

Finally, we’re now up to date with this journal. Now that we have a laptop available to us, hopefully it won’t be too difficult to keep up with it.