Good News and Bad News, 5 May 07 to 8 June 07

Saturday, May 5

We had a great time at Dad’s 60th birthday bash tonight.. Dad had a fantastic night and Mum did an equally fantastic job organizing it. The girls slept at Mum and Dad’s. Although Sarah went to bed (she was teething), Olivia had a ball. She stayed up very late but wouldn’t go to bed until Papa had his birthday cake (she wanted to help him blow out the candles – something I think he might have needed a little help with given there was 60!).

Sunday, May 6

I collected the girls from Mum and Dad’s. We then went home to pack for our trip to Sydney this afternoon. Our plan was for all of us to go to Sydney but we recently discovered that the room I had booked at RMH was unavailable and that we would all have to share one of the smaller rooms. We decided that it would be best to leave Sarah with Mum, especially since she was teething. We were concerned that the girls would constantly wake each other and us.

We left for Sydney late in the afternoon. As usual, I shed a little tear saying goodbye to Sarah as I thought that it might be hard for her to be separated from us again.

Monday, May 7

Happy 60th Birthday, Dad!
Happy Birthday, Juliana!

First on the agenda today is a bone scan. We went straight to Nuclear Medicine at 8.30am for Olivia to be injected with a radioactive isotope. The nurses also took her blood. We then headed to ward C2South for Olivia’s sedation. Once she was sedated, we headed back for the scan which took over an hour. We later saw Olivia’s oncologist for a clinic appointment. Olivia’s blood counts are still fairly low. Her haemaglobin was normal but her platelets, white cells and neutraphils were all low. A couple of weeks ago, her oncologist worried us, suggesting that the low counts may be the result of neuroblastoma returning in the bone marrow. However, she also indicated that it could also be the result of any other number of things, for example, some of the medication she’s on, the radiation she had (which involved a fair bit of bone marrow), etc. Initially, I was very worried but was, by this stage, feeling a lot more confident that Olivia was okay.

Tuesday, May 8

Olivia had to fast all morning today. At around lunch time, we had to go to Nuclear Medicine for Olivia to have another injection for her MIBG scan the following day. We then went onto C2North to wait for her bone marrow aspirate and trephine procedure. She required a general anaesthetic for this one as it’s pretty invasive. She woke up from this one a little cranky but nothing like what we’ve experienced in the past. She was pretty good.

Today, for the first time since Olivia had pneumonia, I got my first bad cold. Of course, my biggest concern was that there was a strong possibility that Olivia would get it, especially since I have been so close to her and we have been sharing a room. Mum and Bec also picked up bad colds and they were concerned that they would pass it onto Sarah.

Wednesday, May 9

Today Olivia had an MIBG scan, which took about an hour a half. Once again, she had to be sedated. Once we were back on the ward, I headed off to talk with the psychologist. I haven’t been having an easy time dealing with Olivia coming off treatment. I often feel worried and anxious, particularly when we approach testing time. It’s hard not to feel anxious, especially when you don’t know what the future holds. I have really positive days and often feel confident that things will be fine but I also have bad days and can feel quite depressed. I thought it might be helpful to speak with someone who deals with families in similar situations. I spent some time today speaking with the clinical psychologist at the hospital. I have spoken with this particular psychologist before and I found her to be quite helpful and understanding. It felt good to be able get my emotions out and to speak with someone who knew where I was coming from as she regularly deals with other parents in our position. It was good to have someone just listen to me and to tell me that my feelings were perfectly normal. I think I just needed to have good cry and get a few things of my chest.

By this point of the week, being in Sydney was really beginning to take its toll on James and I. I found it particularly difficult being back at RMH and the hospital. All week we have been hearing stories from families we know that weren’t very positive. For the first time, it really struck us that kids do die from these diseases. It really hit home for us this time. One mum who I had been friendly with in the hospital had told me that she has now been told that her daughter is dying. There was another family who wasn’t achieving good results with chemo. All of this really saddened us. At the same time, we felt lucky that, so far, things are going well for Olivia.

Again, Olivia slept for a while after the scan. James also caught up on a little shut eye. We later headed back to RMH and then to the shops where we bought Olivia a couple of pairs of shoes.

Thursday, 10th May

All we had on today was Olivia’s CT scan. James headed out with his friend, Tony. Olivia and I headed over to Rosie and Garry’s house briefly. Afterwards, we headed back to the hospital for the scan. Once again, Olivia was incredibly brave and kept very still for the scan. As I stood there holding her hand, I got a little tear in my eye and just prayed (as I had been doing all week) that these test results would be good.

After the scan, Olivia and I headed off to Bondi Junction for a shop. Actually, Olivia only wanted to go to the David Jones patisserie as she loves the little tarts they sell. We had a really lovely afternoon together. We sat in DJ’s and scoffed down some delicious tarts, had some lunch and shopped till we dropped. In fact, James made it back to RMH before we did.

Friday, 11th May

Today is the day we hear about Olivia’s results. I was extremely anxious awaiting the call from her doctor. My phone did not leave my hand all day. I knew that the radiologists meeting ended at about 10.30 so I was hoping to hear news by lunch time. We headed into the city in the morning as I had to pick up some shoes and we had some lunch in the DJ’s food court – Olivia had a little tart, of course.

I was now getting very anxious, having not heard from the doctors. Although Olivia’s doctor was not working today, she told us that she would definitely phone us with the results. We soon headed back to Randwick for Olivia’s appointment with the ear, nose and throat specialist. I decided that I would track down Olivia’s doctor if I hadn’t heard anything by the end of her ENT appointment.

The ENT specialist had a look in Olivia’s ears and told us that her ears are so blocked full of wax, etc. that she’s effectively wearing earplugs. Her ear canals are also tiny which makes it very difficult for the wax to go anywhere. She also has a fungal infection, for which we need to commence ear drops for 10 day. The doctor recommended that her ears be cleaned out but said that children do not tolerate this well and it would be best done whilst under general anaesthetic. He said that he would be happy to do it if we could tie it in with the removal of Olivia’s central lines, which we were hoping would come out in the next couple of weeks. The doctor seemed to think that by removing all of the gunk in Olivia’s ears, she would hear significantly better. We were thrilled and now couldn’t wait to have all of this done. I should point out that it was this doctor who also put my grommet in a few months ago.

By 3.30, we still hadn’t heard from Olivia’s doctor. We were disappointed as she knew what these results would mean to us. I decided to page her myself. Unfortunately, she didn’t respond to her pager so I rang the doctor who works with her. He had the results and they were everything we hoped they would be. They were all clear, except for the bone scan which showed there was some slight uptake in her left foot. The doctor recommended an x-ray to make sure there was nothing sinister there. He seemed to think that it was most likely some sort of trauma, rather than cancer. If it was something bad, the MIBG would have picked up on it.

We were so thrilled with the results and just pray that these results are repeated next time.

After we received the results, we headed back to Canberra. In the meantime, I was already on the phone organizing an x-ray for Olivia on Monday.

It was great to be back home. Although the week went quickly, it was great to see Sarah again. She had been such a good girl for Mum and Dad. She was so well-behaved and slept so well at their place. This is very reassuring for us as it makes us feel like it is the right decision to leave her with Mum and Dad. We know that she wouldn’t enjoy Sydney and it would be very difficult for us all to be sharing a room.

Olivia had been sleeping so well at home but every night in RMH, she had night terrors. She often screamed out in the night and we usually had to settle her. Our poor girl must associate RMH with some not so happy memories. Hopefully, in time, she will improve.

So far, I’ve made it through the week without passing my cold onto Olivia. Sarah also managed to remain germ-free.

Sunday, 13th May

In the morning, I took Olivia to the GP to get a referral for her foot x-ray.

At lunch time, we headed off to the George Harcourt Inn for a nice Mother’s Day lunch. We had a great time besides the fact that the pub ran out of roasts and we all had to order something else which took two hours to be served!

My mum has always been an amazing mother. She has been there for all of us in every way possible. It’s hard to find the words to thank her for everything she has done. Mum is so incredibly strong and never hesitates to help us in any way she can. We feel so incredibly fortunate to have her. Mum, we love you so much and appreciate everything you do.

Monday, 14th May

After dropping Sarah off at Mum’s, I took Olivia off for her foot x-ray. The results were normal, which was a huge relief to us. I then took Olivia to the hospital to have her lines flushed and dressing changed.

I spoke with Olivia’s oncologist to pass on the result of the x-ray. She was going to try and speak with the paediatric surgeon to try and organize a date for Olivia’s line removal and ear cleaning.

Tuesday, 15th May

Again, I spoke with Olivia’s oncologist who informed me that the surgeon and ENT specialist would let me know when they were available. She also told me that Olivia’s urine catecholemines were normal. Her bone marrow trephine was also normal. With this result, it was also noted that there was a marked post-chemotherapy effect on her bone marrow which explains her not-so-great blood counts of late. This was another big relief to us as Olivia’s doctor had pointed out that her poor blood count could mean that neuroblastoma had returned to her bone marrow.

Friday, 18th May

I decided to chase up the ENT specialist today to see if he had organized a theatre time for Olivia. He finally called me back to tell me that they could go ahead with Olivia’s line removal and ear cleaning next Thursday. I was thrilled! I was really looking forward to seeing the difference in Olivia’s hearing, but I was very excited to finally see Olivia’s central lines go. It would mark the end of another chapter in this whole nightmare but hopefully, it will be a wonderful new beginning.

Monday, 21st May

Olivia started her third cycle of cis-retinoic acid today. She tolerated the last cycle so much better than the first. Although she still experienced dryness, particularly around her lips, arms and legs, her skin didn’t seem to peel nearly as much and she didn’t experience as much pain as last time.

I had my ultrasound this morning to see if these lesions on my liver have changed in the past couple of months. The results showed that they appear to be unchanged and it was noted that they are consistent with small haemangiomas. I have an appointment with my oncologist on Friday.

I then took Olivia to the hospital for a dressing change and line flush. I then had a blood test, which is what I usually do prior to seeing my doctor. It checks the CEA level in my blood (I think I’ve mentioned previously that the CEA is a tumour marker and can indicate if there is cancer in my liver – it’s measured in bowel cancer patients only).

Tuesday, 22nd May

We all headed off to the airport this morning to see my sister, Bec, leave for overseas. She was going to Dubai for a few days to spend some time with a friend and then she is heading off to London, indefinitely. We were all very sad to see her go. Bec has been wonderful to us. She was in Canada when Olivia was diagnosed and she cut her trip short in order to come home to see Olivia. She has been an incredible support. We will miss her so much.

Wednesday, 23rd May

We headed up to Sydney before lunch today. We left Sarah with Mum. We had to get to the dentist at the hospital by 2pm. I had discovered that Olivia had a cavity in one of her front teeth. James and I are pretty vigilant when it comes to brushing her teeth and suspect that maybe the chemo had done some damage. The dentist told us that the cavity wasn’t caused by too much sugary food. It is something called hyperplasia – this is where the enamel didn’t form properly as her teeth were developing. Apparently, this can be caused by any number of things, for example, having a fever when teeth are developing can cause it or perhaps even chemo. The dentist said she is not to have any more fizzy drinks as the carbonation can cause further decay (surprisingly, not the sugar). Unfortunately, lemonade was about the only thing than Olivia would drink during her treatment. Olivia was initially somewhat disappointed by the prospect of having no more fizzy drinks, but after explaining why she could no longer have them, she seemed to understand and took a pretty mature approach to it. However, we did have to make sure that we substituted the fizzy drinks with something just as sweet, like juice. The dentist decided it wasn’t worth filling Olivia’s tooth and said that it shouldn’t get much worse, we just need to keep an eye on it. The dentist also recommended Tooth Mousse for Olivia to apply to her teeth after brushing. This has calcium and phosphate in it which should add further protection to her teeth.

After the dentist, we took Olivia to have another x-ray on her left foot. Her oncologist wanted to see the results for herself and to see if there had been any changes in a couple of weeks. We then went on to RMH to settle in. Shortly after arriving at RMH, we went to Bondi Junction for a brief shopping trip. I actually forgot my pyjamas – I think that’s a fairly valid excuse for going shopping! We bought a few things, including pyjamas, and Olivia got one of her favourite tarts from the DJ’s patisserie.

Thursday, 24th May

We had to be at the hospital by 7am. Of course, we spent a large part of the morning just waiting around. We were all very excited about Olivia’s lines coming out today. We were also looking forward to an improvement in her hearing. When it finally came time for her to go into theatre, James and I shed a little tear. The central lines were symbolic of everything that Olivia had been through and finally they were coming out. It was a momentous occasion. We were so happy. Olivia was pretty excited herself.

Once Olivia was in the recovery room, the ENT doctor came out to tell us that he had cleaned a lot of wax and debris from her ears and that her hearing should improve by about 40 decibels. We were surprised and thrilled that the ear cleaning would make such a significant improvement. This could possibly mean that Olivia may not require a hearing aid at all.

The paediatric surgeon also came along to tell us that the line removal went well. In a couple of days, Olivia will be able to have her first deep bath in many months. That’s something she’s been talking about for months.

Olivia seemed to sleep off her anaesthetic and surprisingly, wasn’t too grouchy when she woke up. It certainly helped to have food and drink handy. We also reminded her that her lines had come out, which put a smile on her face.

It wasn’t long before we left hospital, packed up at RMH and headed home.

Friday, 25th May

I saw my oncologist this afternoon. I took along my latest ultrasound results. There had been no change to the lesions on my liver, however, my CEA is elevated. It was 5, which is just outside the normal range (0 – 4 is normal). Unfortunately, this now complicates things a little! I don’t think my oncologist was overly concerned about it but felt strongly enough about it for it to warrant a PET scan. I’m not entirely sure what the PET stands for but I do know that this particular type of scan will determine whether or not the lesions on my liver are malignant. It’s a little bit like a CT scanner but much more sensitive. There are only two PET scanners in NSW (none in Canberra), which means I will have to travel to Liverpool Hospital to have the scan. Apparently, only certain patients qualify for the scan, for example, in my case, patients with suspected metastatic bowel cancer – gee, I feel so special!

My doctor still seems to believe that the lesions are haemangiomas but he did point out that he once had a patient who had spots on his liver that didn’t change for two years and then all of a sudden, they began to spread. I guess it’s better to have everything checked out so if there is a problem, it can be sorted out as soon as possible. If the results are positive, the most likely treatment will be surgery. I will need to have a section of my liver removed – not a particularly pleasant operation, but what’s one more scar! Unfortunately, it will put me back to square one. If the results of the scan are negative, my doctor told me that that would pretty much give me the all clear as about 80% of bowel cancer patients relapse in the first three years. That would be great news – God knows we need some!

I really don’t think that anything could shock me anymore (except when it comes to Olivia). I am much less concerned about my own health than I am about Olivia’s. I’ve actually been quite relaxed about all of this. I’m sure if I’m told that my cancer has returned I’ll be very upset but at the same time, I’m so over this whole cancer business that I just want to get on with whatever has to be done.

Friday, June 1

The past week was spent doing the usual busy things. Olivia had the opportunity to catch up with her little friend, Hanah. It’s so beautiful to see how happy it makes her to be playing with her friends. We can’t wait until next year, when she has some increased immunity, and she can start pre-school and do most of the normal things that other kids do.

Today I had some surgery on my right leg to have some varicose veins (which worsened during pregnancy) removed. The best part was having a little time to myself to sleep and relax. The surgery went really well and fortunately, I didn’t experience much pain afterwards. I stayed overnight and went home the following day. I have to keep my legs bandaged until I see the doctor again on Thursday.

Sunday, June 3

It didn’t take long for me to get busy again. I felt the urge to clean the house – so I did (with a bit of help from James). It really didn’t take long at all to recover from the surgery, which is great as I didn’t want it to set me back for too long.

It was a different story as soon as I took off my bandages – I was in pain. I was fine as soon as they were bandaged again.

Tuesday, June 5

I took Olivia to the GP today to have her ears checked out. Both ears looked good and seemed to be clear of the fungal infection she had.

Wednesday, June 6

James and I traveled up to Liverpool Hospital today for my PET scan. We left the girls with Mum. Surprisingly, I was quite relaxed about the whole thing. I had to fast all morning. When we arrived, we headed to the Nuclear Medicine department and I was given an injection of a radioactive sugar isotope. James had to leave the room I was in because I was radioactive. I was then told to lie still for an hour before the scan. They covered me in a huge sheet of foil and a blanket to keep me warm. I think it was one of the most boring hours of my life. They wouldn’t let me read a magazine or do anything at all! I couldn’t even sleep because every time I moved, the foil crunched.

The scan itself took about 20 minutes and then I was free to leave. It was now an anxious wait until Friday when my oncologist was next working and I could get the results.

Thursday, June 7

I managed to get out for a little while by myself today. Unfortunately, the lady, who had been caring for the girls for a few hours during the week, fractured her ankle. Mum took the girls for me again so that I could catch up with some friends. I also went to the surgeon who operated on my leg last week – everything is good.

Friday, June 8

I was feeling a little on edge this morning, awaiting the results of my scan. I decided to ring the doctors rooms myself and I was told to ring back in the afternoon as he didn’t start until lunch time. The girls and I managed to fill in the morning by going to the shops and James and I had dental appointments.

By the time we got home, I was becoming very anxious. Unexpectedly, Mum dropped round. I think she was wondering why she hadn’t heard from me with the results. We agreed that it might be best that I phone the doctor while she was with me.

I phoned my doctor and I started to get a bad feeling. Certainly, the tone of his voice confirmed the worst. He said to me, ‘You had a PET scan. You have one solitary spot and it’s hot.’ In other words, the cancer has returned. I have relapsed after being in remission for about three years.

This is all just so unbelievable. What are the odds of all of these things going wrong with one family! A billion to one?? I can’t even describe my emotions. Pissed off – definitely! Heartbroken. Sad. Confused. It’s like an incredibly cruel joke. My faith in everything has been completely shattered. I don’t know what to believe anymore. The magnitude of this is immense. Just when our beautiful Olivia goes into remission, I relapse. How are we suppose to deal with this?? How am I going to get through this? This is just a nightmare!!!

My doctor suggested that I come in and see him straight away. James came straight home from work and Mum stayed to mind the girls. Dad also came round to be with Mum.

I was well aware of the implications of my relapse and the doctor pretty much confirmed all of this for us. I will require major surgery – a hepatopectomy (which basically means they’re going to chop out the cancer from my liver). This surgery is apparently quite tricky and usually takes about four hours. I guess I will find out more once I see the surgeon. I was also told that I’ll be likely to require chemotherapy. This is something I was hoping to escape. I think from the doctor’s perspective, it is in my best interest to be hit with everything they’ve got because I’m so young. The current chemotherapy has superseded the chemo I had three years ago. They now use oxaliplatin, which is supposedly much more effective. It had better be because the last one certainly didn’t do a damn thing for me. While oxaliplatin is more effective, it’s toxicity is greater and there are more side effects. The doctor didn’t go into details with me as I wasn’t keen to discuss chemo until after surgery. It’s all a little overwhelming. One step at a time.

All of this is going to set me back for at least the rest of the year. I’m going to need all the help I can get. Unfortunately, Mum has even cancelled the surgery she was going to have on her shoulder in a week and a half. This would’ve set her back for three to four months. I was hoping she would still go ahead with it as I know that she has been in incredible pain for the last few months. She feels that she needs to be there for us and the girls. I think she’s hoping to look after the girls to enable James to go to work as often as he can. Mum does everything she can to make our lives easier and never complains. I feel terrible for having to rely so much on her again. I am so sick of feeling like a charity case. I just want to get on with life – I hope it bloody happens one day!

Our lives officially suck!!! And that’s an understatement. And to all those people who say, ‘there’s always someone worse off than you’, I say, I DON’T CARE!

I also remembered that today would have been my grandma’s 81st birthday. I also discovered that I was pregnant with Sarah this time two years ago.

This journal entry doesn’t even come close to describing how I really feel. There are no words to convey how I feel. It’s just unbelievably overwhelming. There is only so much a human being can take. I am reaching that limit. Despite my relapsing, Olivia’s health is paramount to me. I think about her all the time. She has to be alright. She just has to be.
I am so grateful to be surrounded by such a wonderful family. My parents have told us that they will be there for us in any way they can be while I fight this battle for a second time. They always have been. My beautiful girls keep me smiling. I just adore them. They don’t give me the chance to get down about this. I also have the most amazing husband who I love dearly. He has shown incredible strength and has been so supportive and positive throughout this whole ordeal. I am also lucky to have the love and support of some truly wonderful friends.