Radiation, 24 Feb 07 to 19 April 07

Saturday, 24 February

Once again, it’s been a while since we updated the website. I have been keeping reasonably up to date with the journal in a Word document but we have only just got around to downloading it.

Tuesday the 27th was Olivia’s first day under general anaesthetic for a radiation ‘test run’. She didn’t actually have the radiation on this day – we think it was for getting Olivia’s positioning right and making sure the radiation beams were going into the precise areas. Afterwards, Olivia was taken to paediatric recovery where she woke up feeling extremely agitated. This was no surprise to us. She screamed and screamed and yelled at everyone around her. It would have taken at least an hour for her to settle down.

The next day was her first of twelve doses of radiation. The nurses had made her a lovely sticker chart with pictures of things she loves on it such as fairies, butterflies and teddy bears. There were twelve teddy bears, one for each day of radiation. She looked forward to putting a sticker on one each day.

Every day, either James or myself (or both of us) went into the radiation room with Olivia. The radiation machine was called ‘Bronte’ (all of the radiation machines are named after Sydney beaches). We were able to stay with Olivia until she went to sleep. The staff were all wonderful and adored Olivia. Each morning, they would put a Wiggles CD on for her. Olivia would often do a dance for everyone before we put her onto the table for her radiation. She was always very co-operative and was keen to get up onto the table to be put to sleep. She never once felt scared and never felt the need to hold either James’ or my hand. Olivia seemed to really enjoy the feeling of being put to sleep, as well as, all of the attention of everyone in the room. She was amazing.

Unfortunately, throughout most of her radiotherapy treatments, Olivia rarely awoke feeling happy. She usually screamed for anywhere up to half an hour to an hour. She had several different anaesthetists during her treatments and they all tried different things to try and help her wake up in a calm manner. Most of them were unsuccessful. I would say Olivia only woke up feeling reasonably happy (I’m not even sure if that’s the word!) about three times. The funniest thing Olivia did every day when she woke up was cry out in a big drug-induced slur ‘I want wadiation’. She would repeat it over and over again! Other variations included ‘I want wadiation right now’ or ‘I want radiation all the time’. No matter how many times we stressed to her that she had already had it, she would become more agitated and continue repeating ‘I want wadiation’. We just couldn’t convince her that she’d had it and that she’d have to wait until the next day. Bizarre! It did become quite funny – the nurses found it very amusing.

After Olivia’s first few treatments, we saw the radiation oncologist who informed us that everything was going well with Olivia’s treatments. She also told us that we should expect Olivia’s remaining few hairs on her head to fall out a couple of weeks following the end of her treatment and that her skin may become pink or red and dry and itchy. We were also told that it is likely that Olivia will develop cataracts in her eyes some time down the track. In order for the doctor to treat her skull and orbits properly, her eyes will be affected by about 5 grey of radiation. Apparently, cataracts can be treated – the doctors remove the cataract and replace the lens. Still, it is another unwanted side effect.

Thursday, 1st March

Today was a special day. Our little Sarah took her very first steps – only a few days short of turning 13 months. It was fantastic. We were so excited and she was so very proud. James and I were thrilled to be witnesses to her first steps as we thought that we might miss them if she was in Canberra and we were up here. We are so lucky to have been given this house to stay in as it has enabled us to have Sarah up here the whole time. Sarah has also settled down so much. She’s not as insecure (probably because we’re not leaving her all the time!) and she’s much happier. We’ve really noticed a beautiful little personality developing in her. She does a lot of cheeky little things – like screwing her eyes up when she smiles at us and she’s still as cuddly as ever.


Well and truly into Olivia’s treatment, I did get a bit of a shock when one of the technicians told me that they weren’t actually irradiating Olivia’s cheek (James and I had been told by the radiation oncologist that this would be part of her treatment). Unfortunately, the doctor wasn’t working on this day so I was unable to clarify this. I asked the technicians to have the doctor call me because I was very concerned. I began thinking that Olivia may need extra doses of radiation in order to treat her cheek. Luckily, her doctor called me and she had decided not to go ahead and treat her cheek as it had cleared up during transplant. She also explained that the radiation would impact on part of that particular bone structure anyway. She said that if they did treat the front of Olivia’s cheek, it would affect her eye quite drastically and it wasn’t worth it. I was disappointed that she hadn’t told us but felt much better on hearing her explanation. The less radiation Olivia has, the better.

Saturday, 3rd March

Bec came up to visit for the weekend today. The girls were very happy to see their Auntie B. Mum, Bec and I took Sarah to the shops so I could get her a little pair of shoes (she has grown out of the ones we brought up with us). James and I went out to dinner with our friends Rosie and Garry. However, Garry was feeling a little under the weather and had to go home.

Sunday, 4th March

We all headed down to Maroubra Beach this morning. The girls love going to the beach. We actually take them to the beach most days, usually later in the day when it’s not so hot. We usually take them to Coogee and occasionally to Maroubra. They both absolutely love playing in the sand and paddling in the little waves. Whenever we pick up a towel to shake the sand off, Sarah grabs the other towel and tries to do the same – it’s very cute. Olivia spends most of her time in the water (of course, being very careful not to get her central lines wet). She is very keen to go out further and often talks about going in the deep water when her lines come out.

Wednesday, 7th March

I took myself off to the local GP today as I’d been feeling out of sorts over the past few weeks – extremely tired, a few aches and pains and a little nauseous (and no, I’m not pregnant). I thought while I was there, I would arrange to have my annual scans and blood tests (follow up to my cancer diagnosis). The doctor booked me in for a CT scan the following Tuesday at the hospital at 9am.

Friday, 9th March

Olivia didn’t have to have radiation today as the radiation machines are serviced once a month and today was the day. This means that she wouldn’t finish her treatments until next Friday. We decided to take the opportunity to take the girls to Taronga Zoo. Ronald McDonald House families get free entry. It was wonderful to be able to take the girls somewhere for a change, instead of being cooped up in the house all the time. Although we tried to keep Olivia isolated, particularly when in hospital, the zoo didn’t pose too much of a risk to her health, being an outdoor venue. Both girls seemed to enjoy the outing.

Dad came up from Canberra this morning to visit for the weekend. A friend of mine had sent some goodies up with him – thanks, Fiona! James and I took the opportunity to go out for dinner while Mum and Dad babysat the girls. It was so nice to spend some much needed time alone together.

The weekend was a fairly quiet one for us. We took the girls to the beach, which they loved and went for some walks around the local area. Mum and Dad did some shopping in the city and went to visit some friends overnight. They brought back the latest Hi-5 and Wiggles DVD’s. Olivia was thrilled. The Wiggles DVD is actually the concert we went to back in December – they were filming it. We’ve freeze framed a few times to see if we can spot ourselves in the crowd – no luck yet.

Monday, 12th March

This is the final week of Olivia’s radiotherapy and her treatment. We can’t wait for it all to end. Once again, we had the usual response when Olivia woke up from the general anaesthetic – she continued to cry out, demanding to have radiation. We always thought it was strange that she would make such a request, as did the doctors and nurses, but at the same time, we eventually found it quite amusing.

Tuesday, 13th March

Today is the day of my chest x-ray and abdominal and pelvic ultrasound. James had to take Olivia off for her radiation. On arriving for my scan, I had to drink some disgusting concoction for the purpose of the scan. I then wandered off to have my x-ray (I had to wait 20 minutes for the scan and luckily I was squeezed in for the x-ray). I was feeling quite confident about the results of the x-ray. I then returned to have my scan. They injected a contrasting dye as this can give the radiologists a clearer picture of what’s going on inside my body. I was feeling slightly anxious about the scan results but I wasn’t overly concerned. I guess as the years go by and after being in remission for three years, the risk of the cancer returning diminishes. Naturally, I am going to worry to some degree until I am told that I’ve been cured. After all, I have two beautiful little girls to care for and a gorgeous husband! However, as I lay on the table having my scan, I did get a little teary. I couldn’t help but think about all of the tests Olivia has had to endure, including CT scans, and once again, I found myself in awe of her bravery and strength. Those scanning machines are pretty big and imposing – a fairly scary thing for a child to have to go through.

After the scan, I headed back up to the ward to see Olivia, following her radiation. On leaving the hospital, we picked up my scans but no results. I had to wait to get those at my GP’s appointment later in the afternoon.

I headed off to my GP’s appointment at 3.30pm, feeling reasonably confident that everything would be fine. The doctor had to ring through to get the results faxed to him. He left the room to get them. He seemed to be taking his time which made me really anxious. He casually handed the results to me as he walked back in the room. He didn’t seem at all concerned. I read that everything was clear except for my pancreas, which has a very small cyst, and my liver, which, apparently, has a small lesion! The cyst is not of any concern. However, reading that there is a lesion on my liver sent me into a spin. The most common site of metastasis (or spread) for bowel cancer is the liver. So, of course, I thought that I now had a secondary cancer in my liver. James and Sarah finally arrived at the doctor’s. I was starting to panic. The GP was trying to reassure me, telling me that the lesion has probably always been there. I insisted that it hasn’t as my previous CT scans were clear. In the meantime, James organized with my Melbourne surgeon’s receptionist to fax the results of my previous scans and ultrasounds – they showed that my organs were all clear. Now I was panicking. This certainly was not the time for me to relapse or to even just have a scare like this. We just don’t need this now! How unlucky can one family get!

The doctor decided to send me off for another imaging group to repeat the scan. He suspected that the lesion could be what radiologists call an artifact, which I think is like a shadow that appears on the scan that isn’t really there. He said a patient of his was once diagnosed with a brain tumour and told he had a year to live when in actual fact, there wasn’t a tumour there at all. I decided not to worry too much until I knew what it was for sure. One thing that reassured me slightly was that fact that my CEA was only 4. This is a chemical found in the blood. It is released by the liver and if cancer is present, it is elevated significantly. However, I also know that it is only elevated in 70 percent of patients who present with secondary liver cancer, so it may not be a good indication.

Wednesday, 14th March

Once again, James had to take Olivia off to radiotherapy. I was booked in for an 8am scan. Mum and Sarah joined me. Once again, I had to drink about a litre of that disgusting concoction. I felt considerably more anxious during this scan than I did for the last. Afterwards, we headed across the road to the hospital to be with Olivia when she awoke from her general anaesthetic.

I picked up my results around midday. This time I was given the pictures and the results. These results showed that I not only had one lesion, but I had two! Great! I am now convinced I have cancer and have about three years to live! In the report, the radiologist had made suggestions as to what it could be, including something called haemangiomas, but couldn’t rule out other solid masses. I was now fraught with worry. What else could it be? Given my medical history, a secondary cancer is the most likely scenario.

I went back to the house and had a bloody good cry. I can’t believe this. I just can’t believe this! All I could think about was leaving my beautiful girls (and James, of course). I want to see what my girls will become, what they’re going to do with their lives and I just want to be there for them always. I then started to think about James and how he would cope with raising the girls on his own. I reminded myself of everything he has had to deal with, having had a very seriously ill child and a seriously ill wife. I was so angry with God for doing this to us. I just know that if I was relapsing, I would lose faith in everything. I just know that I couldn’t take anymore. I eventually pulled myself together, I had to. I didn’t want the girls to see me upset. Instead, they became my inspiration. If I was relapsing, I would fight this battle tooth and nail. I have so much to live for. If Olivia can put up such a courageous battle against this horrible monster and beat it, then so can I. When I told Olivia that she and Sarah were my inspiration, she repeated it, saying “I’m Mummy’s operation”.

I headed off to the doctor, this time with Mum and Sarah as James had to take Olivia to have an echocardiogram appointment at 3pm. This was to determine if the transplant, in fact, any of Olivia’s treatment, had had any detrimental effects on her heart. The results showed that there didn’t appear to be any damage.

I arrived at the doctor’s with my scanning pictures and the results. I handed them to the doctor. At this point, I became quite distressed. As the doctor read them, he too was beginning appear quite concerned. Having one lesion was bad enough, but having two was scary. The doctor tried his best to get me into an oncologist in Sydney as quickly as possible. As it turns out, most oncologists were at a two week conference in Switzerland! Just what I needed! I needed to know what was on my liver right now. He eventually got me an appointment with an oncologist for next Tuesday. He also took another blood sample to double check my CEA. I just know that the wait until Tuesday will be unbearable.

By this stage, James and Olivia had arrived at the doctors. Mum left with Sarah (she was now becoming a little frustrated with trying to open the filing cabinet drawers in the doctor’s office!). I think that the doctor might have presumed this was cancer and so he began to tell me how I might go about treating. He told me that his brother had liver cancer and that they can now deliver the chemo straight to the tumour site. This was all a little overwhelming for me, especially considering that we didn’t even know whether or not it was cancer. Despite all of this, he was a very nice doctor and tried to be as reassuring as he could be. He even gave me a hug as I was leaving. On our way out, another GP, who I’d previously seen, called us into her office. She’d heard of my predicament and was on the phone to her bowel specialist husband to see what advice she could give me. She basically told me the affected segments of my liver could simply be cut out and I’d have a chance of cure. My head was spinning – firstly, one doctor was talking about chemo and the other was talking about chopping up my liver! I was confused.

I needed reassurance now or at least some reassuring advice. I decided to ring my surgeon in Melbourne. I knew that he would know what to do. I have such deep respect for his opinion, after all, he is the one who, hopefully, cured me. He returned my call about half an hour later. He was very sympathetic, yet reassuring. He advised me to have an ultrasound, as this would provide further detail. He told me not to worry as the lesions were most likely to be haemangiomas. I still didn’t quite understand what an haemangioma was. All I knew was that it is a benign tumour and something to do with the blood vessels – completely harmless. As long as it’s not cancer, I don’t care what it is! I began to feel much better after speaking with him. On returning home, I rang the GP and requested that he organize an ultrasound for the following day.

Thursday, 15th March

I was able to be with Olivia for her radiotherapy this morning. My ultrasound was booked for midday and I had to fast for six hours prior to the appointment (man I was hungry). I was feeling a little nervous, but surprisingly okay. The scan took a while as the sonographer had difficultly locating one of the spots, it was so small. Everything hinges on these results.

I went home for a while and had some lunch before heading back to get the results.
When it came time to pick up the ultrasound results, I wasn’t sure whether or not to take Olivia. James explained to Olivia what we were about to do, and she immediately said “I come too and hold Mummy’s hand”. How mature is that!

James, Olivia and I walked up the road to pick up the results (we’re very close to everything). We decided to walk across the road to a little park and check out the results. I was incredibly anxious by this stage, however, James was very calm and Olivia was sitting next to me, holding my hand.

The results appeared to be fine. The radiologist reported that the two lesions are consistent with very small haemangiomas. Again, whatever they are! I was so unbelievably relieved. James and I shed a little tear, while Olivia danced around in her fairy dress. I was relieved but I then went straight back to worrying about Olivia! I still needed to have this checked out by a doctor but I decided I would wait until we got back to Canberra to see my oncologist. Hopefully, this is the beginning of our good luck. It’s about time and I think we deserve it!

Olivia continued to awake from the general anaesthetics in a not so user friendly mood. She did have a couple of good days but on the whole she got pretty worked up. And, of course, she really wanted to have more radiation. James managed to captured some of this on video for the purposes of her 21st birthday party.

Olivia is also continuing to have night terrors. She often cries or screams out in her sleep up to eight to ten times a night. James and I seem to have almost adapted to the lack of sleep and usually get by walking around like zombies most days. With the days being so busy, I think the adrenalin kicks in and you just keep going because you have to.

Since it was our last night in Sydney with Mum around, she gave us the opportunity to go out for dinner. It’s been great for James and I to spend some quality time together.

Friday, 16th March

Last day of radiation! And, officially, the last day of Olivia’s treatment in hospital. What a long, hard journey. We are now looking forward to going home and trying to have some sort of a normal life.

Olivia wore her hot pink fairy dress and wings to hospital today. She looked so gorgeous. The nurses and radiotherapy team loved her get up. She got a lot of attention today. The nurses blew bubbles for her while she was being prepared to go to radiation. Upon arrival for her radiation treatment, Olivia completed her sticker chart and the head nurse gave her a present from the team. It was a gorgeous doll with dress-ups and she was also given a hat. Olivia had drawn a picture for them to put on their wall. Before getting onto the table for her treatment, Olivia did a little dance.

Olivia awoke from the anaesthetic feeling the usual way. Imagine how devastated she was when told that that was the last of the radiation. Once we arrived back on the ward, we saw that the nurses had decorated her room with streamers and they also had a present and chocolate egg for her. Although still a little cranky, I think Olivia loved it. Most of the nurses are so lovely and genuine.

We then spent some time passing on our thanks to the nurses and to our social worker. She was absolutely fantastic. She is such a caring and compassionate person and an excellent listener. I spent a fair bit of time pouring out my soul to her.

Mum headed back to Canberra this afternoon. We really don’t know what we would have done without her. She helped us out in so many ways, from cleaning and cooking for us and looking after the girls to being an amazing emotional support to all of us. Thank you, Mum. You are absolutely amazing. You have given up so much for us yet nothing is ever too much trouble for you. Words cannot express our gratitude.

Saturday, 17th March

Lucky me, I got spend most of the day with my friend, Rosie, and her very patient son, Marcus. We went into the city for a last minute shopping spree. Firstly, she took me to St Mary’s Cathedral so that she could light a candle for Marcus, Olivia and I. I also lit a candle each for Olivia and Sarah. I’ve never done this and I found it to be a very moving experience. Someone has just got to be listening to us up there! We then got down to the serious business of shopping.

We then had dinner with Rosie’s family in our Sydney home. The kids really enjoyed playing together.

Monday, 19th March

We took Olivia to see her oncologist in clinic this morning. Olivia also had to have a finger prick prior to clinic. While we were in pathology, we submitted a urine sample of Sarah’s so that they could test for neuroblastoma. We’re not taking any chances. Two family members having had cancer is more than enough!

Olivia had spent some time drawing a beautiful picture for her doctor and she gave her a card and some flowers. It was a routine check up and an opportunity to ask questions before heading back to Canberra. Naturally, I asked a lot of questions. I always do. Olivia will need to continue taking Bactrim (antibiotic for chest and lung infections) and Fluconazole (for fungal infections) for three months post transplant. She will begin to take cis-retinoic acid on March 26. This medication helps to mature neuroblastoma cells to a more mature, benign cell. She will take this for at least six months and for longer if she tolerates it well.

We took the girls to the Sydney Aquarium in the afternoon. They loved it. I was surprised that Sarah showed quite an appreciation, particularly, in the shark tunnels. She got very excited. She kept saying ‘fishies’.

Tuesday, 20th March

Much of the day was spent packing and wondering how we were going to get everything back to Canberra! We also took the girls down to Coogee Beach for one last time before we leave.

Wednesday, 21st March

Today was madness. James had to drop us (the girls and I) at the airport by around 2.30. We, therefore, had to get everything that we hadn’t packed, packed and there was still plenty to pack – it seemed never-ending! James was busy packing up the car, the trailer and the roof boot, while I was busy cleaning the house for the next tenants (who were, apparently, moving in later in the afternoon). It was all a mad rush – we really underestimated the time it would take for us to get organized. The plan was for James to drop us at the airport and then continue driving back to Canberra from there. As it turns out, he had to go back to the house to do a few last minute things.

Before we left, my friend, Rosie dropped by to give us the proceeds raised by a raffle they held for Olivia. We were both overcome with emotion. We are so lucky to have such incredibly thoughtful and caring friends! We would like to thank Rosie, Garry, Wendy, David, Kate and Jeremy for everything they have done for us, including the enormous effort you put into organizing a fabulous raffle. You guys have been a support to us in more ways than one. Many thanks go to all of the businesses for their generous donations and to the community for all of their support.

We made it to the airport in time and just as well, because it’s certainly a handful with two kids. The trip went quite well but both girls were very tired by the end of it, and so was their mother! Mum, Bec and Auntie Shell greeted us at the airport.

It was great to be home after about two and a half months. The girls were thrilled to be home, with all of their toys and their own rooms with all of their special things in them. I had mixed emotions. I was also thrilled and so happy to see the girls so excited about being home. At the same time, I was feeling scared about the future, the uncertainty of it all. And I wondered how ‘normal’ will our lives be being back at home. I guess I will learn to come to grips these things over time. It’s not easy, that’s for sure.

James arrived home just before 9pm. As it turns out, he was held up a bit at RMH, catching up with other families. I think he was feeling quite exhausted by the time he got home but also relieved.

Thursday, 22nd March

I woke up smiling today, feeling so happy about being home. It was a great feeling. I am trying to put my fears aside so that we can get on and enjoy our lives at home. I enjoy seeing our girls so happy and revel in Olivia’s beautiful smiling face and the fact that she no longer has to face long stays in hospital.

I took Olivia with me for my oncology appointment today. She also needed to have a dressing change and her lines flushed at the hospital. I filled my oncologist in on my latest scan results. He was taken aback by what I had to tell him but after showing him the scans and the results, he seemed to agree that the lesions on my liver were most likely haemangiomas. He said that he couldn’t be sure of this unless I have another scan in a couple of months. If they haven’t grown, then they are most likely to be the latter. I’ll be booking my scan for the end of May. My doctor held onto my scans to show some other doctors.

Olivia and I then headed over to the hospital for her dressing change.

Monday, 26th March

Olivia began taking cis-retinoic acid today. She is required to take this for at least six months and if she tolerates it well, her doctor may decide to keep her on it for longer, possibly up to a year. One cycle of this medication means that Olivia will need to take it for two weeks and then she has a two week break before starting again. As I may have already mentioned, cis-retinoic acid works on neuroblastoma cells by maturing them to a benign type of cell. It is a vitamin A derivative and is actually used to treat severe cases of acne. Precautions need to be taken when administering the drug such as wearing gloves. It’s a fairly toxic drug and can cause severe birth defects in unborn babies. Unfortunately, the medication is in capsule form, which Olivia is unable to swallow. She requires three capsules, so we have to pierce each capsule with a needle and squeeze the contents out onto a spoon, usually with Olivia’s food. It’s all quite messy, fiddly and time consuming.

Initially, we were concerned that by squeezing out the contents, there was too much wastage (we were always very careful, but some wastage is hard to avoid). As a result, we were worried that Olivia may not be getting the correct dosage. I spoke with her doctor about this and she hadn’t previously come across this problem but after speaking with the other consultants, she discovered that the other parents were having to do the same as us. She didn’t seem overly concerned.

Some side effects of cis-retinoic acid include dry lips, nose, skin, mouth and eyes, increased sensitivity of the skin and eyes to sunlight, temporary thinning of the hair (not possible in Olivia’s case as she has none!), peeling palms and feet, itchiness, vomiting and nausea, blurred vision or eye problems, tenderness or stiffness in the bones, joints or muscles, wheezing, abnormalities of liver function and elevated blood cholesterol levels.

We noticed side effects the next day. Olivia’s skin became really dry, particularly around her mouth.

As the days passed by, we noticed that her skin was quite severely affected, from head to toe. All of her skin was extremely dry and sore. Olivia became incredibly itchy to the point where she would scratch so much that she bled (particularly her head). She ended up having numerous scabs on her head and face. We found ourselves having to constantly moisturize her skin. We have tried a number of moisturizers to determine which ones work best. We have also been bathing her in QV oil to help soothe the rest of her body. She often screams out in pain because her arms and legs sting so much from the dryness. It’s heartbreaking.

Tuesday, 3rd April

I took Olivia to see her paediatrician in Canberra. He didn’t seem to be very up to date with Olivia’s progress and treatment. He had never heard of cis-retinoic acid or how it works on neuroblastoma cells. He basically checked her overall health. Her blood results (she had a finger prick the day before) showed that she was slightly neutropenic and most of her other blood cells were not within the normal range. I wasn’t completely surprised by this as it can take quite some time for the bone marrow to recover after the transplant and radiation. Olivia’s doctor didn’t seem too concerned. I later spoke with her oncologist in Sydney who wasn’t concerned by the results as she did point out that her bone marrow has taken quite a hammering from all of her treatment.

I spoke with Olivia’s paediatrician about our shortage of cis-retinoic acid. When we picked up Olivia’s medication from the pharmacist at the hospital in Sydney, we were suppose to get enough medication to last through the first cycle. However, we found that we were five capsules short. There was a bit of running around to do in order to get hold of this drug in Canberra. Olivia’s doctor was unable to track it down. Eventually, it was ordered from Sydney and went to our local chemist. When the time came to pick it up, the pharmacists seemed skeptical about the dosage Olivia was receiving and proceeded to ask a lot of questions. They weren’t particularly familiar about this drug and had no idea of its role in treating neuroblastoma (this didn’t surprise me as this is to be expected in Canberra –there aren’t many kids out there with this cancer). They were surprised by the dosage and told me that it was an extremely high dose for such a little girl. I assured them that it was the correct dose but I think that they still found it hard to believe. They ended up ringing Sydney to confirm the dosage. We finally got the medication we needed – $95 for the 60 tablets, even though we only needed 5!

Olivia continued to suffer with extremely dry skin. This became concerning to us because she really seemed to be so uncomfortable and her skin looked terrible. We were beginning to get the feeling that maybe the dose was too high. We’ve also noticed that Olivia has developed a slight limp. This could also be another possible side effect. These are some of the things I will be discussing with her oncologist on the 16th.

Friday, 6th April

We headed down to Mum and Dad house at Tuross for the Easter weekend. We were planning on staying until Sunday so that we could get home and get a few things done. We were all having such a wonderful time (especially Olivia) and the weather was beautiful so we decided to stay on until Monday.

We took the girls down to the beach a couple of times. They absolutely loved it. Dad took James, Olivia and I out in his boat to do some fishing. This was Olivia’s first time in a boat and she was fitted with a life jacket. Mum and Dad even bought her a little fishing rod. Olivia loved it! She even caught a fish with her rod on the wharf, when we pulled in to get some chippies.

We also had a great Easter Sunday. The girls were very excited to see what the Easter bunny had brought them. We also had a mini Easter egg hunt around the house. Between all of us, we have enough chocolate to see the year through (for a normal person who eats chocolate in moderation – not us!).

We left Tuross on Monday morning so that we could get home in time to do a few things. As it turns out, we got a little sidetracked. We went to visit some friends of ours in Bungendore. Olivia hadn’t played with their little girl, Hanah, for a long time and I knew that she would love to see her. It was very emotional for me, seeing Olivia and Hanah together. I have really missed seeing Olivia with her little friends. She has missed out on so much, particularly social contact. She had such a lovely time and even got to go for a little ride on Hanah’s pony.

As usual, the rest of the week was very busy for us. It doesn’t seem to stop. Whilst we were living in Sydney, we collected so much extra stuff that we need to have a major spring clean to make some room. We just don’t seem to find the time to really get stuck into unpacking. There are so many people that we would like to catch up with too, but are just so busy.

I had another test, as part of my surveillance for cancer. Everything was fine. Olivia had a hospital visit for a dressing change and lines flush. Sarah has also kept me quite busy. She hasn’t been very settled since being back in Canberra. It’s hard to know exactly what the problem is. Hopefully in time and with a good routine at home she’ll start to settle down. She can be such a gorgeous girl but she has been extremely clingy with me and gets easily frustrated. Although I think it is partly in her nature to be like this, she has been deeply affected by what has happened to our family over the past seven and a half months.

Friday, 13th April

I have been feeling quite emotional over the past couple of days. I think I hit the wall today. We’ve noticed that Olivia’s hearing seems to have deteriorated since we’ve been back in Canberra. She often doesn’t hear unless you speak quite loudly and clearly, usually to her face or else you have to shout. This has become extremely frustrating, not only for me but I’m sure it is for Olivia. I know that in the scheme of things, I should be able to accept a certain level of hearing loss as long as Olivia is here with us in the end. Of course, that’s all that matters and we’ll take her however she is. However, it still breaks my heart and it’s still very difficult to accept. It’s hard for me to think about my little girl and how she was prior to her diagnosis – healthy, perfect hearing, doing all of the normal things that other little kids love doing. This treatment has taken so much away from her.

I booked Olivia in for an appointment with Australian Hearing in Canberra for next Thursday. James and I are fairly certain that she requires a hearing aid and we’re keen to get one as soon as possible so that it doesn’t affect her ability to learn.

Sunday, 15th April

My sister, Bec, Olivia and I headed up to Sydney this afternoon for Olivia’s clinic appointment the following day. James stayed at home with Sarah. It was a long, slow trip as we were held up in bad traffic and road works. We arrived at RMH later than I had hoped. We had dinner, although Olivia barely touched it. I ended up talking to some other mothers who had sick children (not necessarily kids with cancer). I think it actually helps to talk to other families in the house because they do have some understanding of what you’re going through. They’re all really lovely, kind people.

Olivia ended up going to bed quite late (for her) and I shared a bed with her. She’s a bed hog but nevertheless, I didn’t sleep to badly.

Monday, 16th April

In the morning, we headed up to the hospital for Olivia’s finger prick. We had to wait a while. This surprised me because we usually get in fairly quickly, given Olivia’s condition. I always get a little worried waiting around busy places in the hospital, especially if Olivia is neutropenic.

We then went shopping at Bondi Junction for a couple of hours. Olivia seemed to really enjoy it, particularly since she’s barely had any opportunities to get out and do things like that. We had a nice lunch and then returned to the hospital for Olivia’s two o’clock clinic appointment.

As it turns out, they had double booked our appointment and Olivia’s doctor didn’t turn up until 3.30pm! I was not impressed. Poor Olivia was becoming quite tired waiting around. We decided to get her dressing changed and lines flushed while we were waiting. It was just as well we decided against flying up to Sydney or else we most likely would have missed our plane.
Apart from Olivia having a general check up, what we really needed to get were some prescriptions for her medications. The check up seemed to go well. However, her blood count was well and truly below the normal range. Olivia’s doctor didn’t seem too concerned about them and indicated to me that it could be any number of things causing her counts to be low, including infections, possibly the delayed effects of radiation, etc. She also pointed out that it could be that the neuroblastoma has returned in her bone marrow. I always knew that was a possibility but I don’t think I was prepared to hear it. This really got me worried. Olivia’s doctor reiterated that she was not worried as her bone marrow is still quite fragile and it’s most likely that there were many other good reasons why her counts are so low. Although this was somewhat reassuring, I was still extremely anxious.

Olivia’s doctor also commented on Olivia’s runny nose and said it was runnier than she would like to see (actually, it has been like that since she began chemo and we have told her doctor on several occasions). She requested a special test or an up the nose snot test (as Olivia’s doctor referred to it) to check and see if the mucus was viral. Olivia did not enjoy this at all. It brought back memories of her having the feeding tube put it and she reacted the same way. It is so difficult to watch Olivia get so upset and distressed. She was still so brave.

We then headed down to the hospital pharmacy to pick up Olivia’s medications. Once again, we were waiting around for ages for the pharmacists to prepare the medications. We didn’t end up leaving Sydney until 5.30. We were all exhausted by this stage, especially poor Olivia. We got caught up in some slow traffic leaving Sydney and arrived home at 8.45.

Tuesday, 17th April

The rest of the week was reasonably quiet. I caught up with a few friends but apart from that we spent most of our time at home. As Olivia is neutropenic, I didn’t want to take her out too much to minimize her exposure to infection. A social worker at the Canberra Hospital and another from our local child and family health clinic organized some respite care for me. A carer will be coming around to our place for up to five hours a week for a month to care for the girls so that I am able to have a break. We have some really lovely people looking after us and appreciate all the support we can get.

Thursday, 19th April

The carer came around this morning to mind Sarah (while she slept) so that I could take Olivia to a hearing appointment. The audiologists assessed her hearing. Olivia has very small ear canals and unfortunately, both of them were filled with wax. This seems to be a bit of a problem every time she is assessed. It makes it difficult for the audiologists to accurately assess her hearing loss as the ear wax is most likely creating some hearing loss. It has been recommended that she has her ears syringed to remove the wax and then reassess. They tested her hearing anyway. Olivia was most cooperative during the testing and actually enjoyed it (they play games with the kids as part of the testing). Clearly, there is a moderate hearing loss with high frequency sounds. She had head phones on and even I could hear many of the loud high frequency sounds that she could not. This was heartbreaking. James and I have come to the realization that she will definitely require hearing aids. Once again, if she’s here with us in the end, none of that matters. We will be taking Olivia to an ear, nose and throat specialist when we are next in Sydney so that her ears can be cleaned out. She will be reassessed the following week in Canberra. This will enable us to establish the extent of her hearing loss and to work out a plan for her.