Our Lives Have Just Fallen Apart Again, 17 Jan 08 to 5 May 08

17 Jan, 2008

Well, we haven’t posted anything on our blog for quite some time. I’m sure I did some updates in Word but have been unable to locate them. The following is a brief run down of the past few months.

At the end of January, we headed up to Sydney for Olivia’s usual scans. I was fairly anxious in the lead up to them which isn’t unusual for me, as we know that a relapse is very serious. I shed a few tears and had few sleepless nights but as it turned out her results were all clear and we were elated. Now we could enjoy the next three months until her next round of scans came round.

I completed my very last day of chemotherapy on January 31. To say that I was excited about the prospect of finishing is an understatement. We have been through so much crap (for lack of a more appropriate word) over the past few years that we were all looking forward to living a normal life for a change. ‘Normal’ meaning that I could do normal ‘mum’ things like look after my girls all of the time instead of having to rely on Mum to take them while I had chemo or doctors appointments, socialize a little more without having to worry about a chemo schedule, have a healthy daughter who could start pre-school and enjoy some time with Sarah, who has also missed out on so much. The list is endless. I should just point out at this time how grateful James and I are for my Mum’s endless support – she has been there for us in so many ways and taking the girls while I had chemo was never a problem for her. We can’t thank you enough, Mum!

I had a CT scan in February which showed no evidence of disease. I was confident that would be the case but I have to be monitored very carefully as everyone now knows the cancer can return at any time.

Olivia began pre-school in February at Nicholls Pre-school. She is in a small group called the Dolphins and attends for three half days from Monday to Wednesday. She absolutely loves it. She has made some little friends and I can see big developments in her drawing and writing skills. She loves to write and often attempts to write the names of other kids, she also does this at home. She has such a passion for learning and it’s amazing what she is gaining by being at pre-school. Olivia also has an incredible photographic memory – she is often recalling events or people she has met only once (a very long time ago) – things that neither James or I can remember.

Olivia also continued with dancing throughout the term and both Olivia and Sarah continued with swimming lessons. Both girls have made huge advancements in swimming. Sarah is just beginning to put her head under the water which is a far cry from the little girl who used to just scream when entering the pool. Olivia is now swimming fairly independently. Some skills need work but she has come a long way and can swim very well underwater and attempts to use various strokes to get her from here to there. It’s fantastic! Olivia can’t get enough of the pool.

Shortly, after Olivia began pre-school, I became quite ill. It began with a cough which I suspect I picked up from the girls as they had previously had one. My cough didn't seem to go away. I ended up having it for about 10 weeks and I intermittently got colds, fevers, etc. It was becoming extremely frustrating as I just couldn't seem to shake it off. I'd had several courses of antibiotics and nothing seemed to be working. I must have been run down after finishing chemo and I guess my immune system just wasn't in good working order. As it turns out, it was nothing to worry about.

On Sunday, March 2nd, we finally had Sarah's christening at St John's Church (we had to postpone it on several occasions because of all the dramas in our lives!). It was a wonderful day spent with close family and friends. Both Sarah and Olivia had a great time!

On April 20, we headed up to Sydney for Olivia’s routine scans. For the first time ever, I was feeling quietly confident and not quite as anxious as I’d felt in the past. Nevertheless, it is quite a busy and nerve-wrecking week. On the first day, Olivia had her bone scan and the technicians (although they couldn’t say anything to us, that’s up to the doctors) hinted that the results were looking good. We felt quite relieved. The next day she had a CT scan, followed by a bone marrow aspirate. We also had a clinic appointment but did not see Olivia’s usual oncologist as she only works part-time. The doctor checked out Olivia and was pleased with how she looked. She has been looking very well and has been very happy and active.

On Wednesday, Olivia had an MIBG scan. This is the scan that specifically detects neuroblastoma cells in the body. The cells release a chemical that attracts the radioactive isotope. Olivia was so incredibly patient and lay very still for the scan. After about an hour and a half, I asked the technician if they were nearly finished (it usually takes about that long). He said to me that the radiologist wanted to take further scans of her knees. Well, this raised alarm bells for me! I left the room to ring James (who was packing up our room at RMH as we were planning to leave Sydney after the scan). I was a mess as I had a very strong feeling that something was wrong (so much for my intuition earlier on!). The technician wasn’t giving anything away but he had noticeably changed his tune since speaking with him during the bone scan earlier in the week. I couldn’t stop crying from this point. The scan took an extra hour and poor Olivia had been lying still now for 2 ½ hours!

James and I decided to head up to clinic to speak with the oncologist to see if we could get any of the results. We thought they might be good and that would give us some sort of reassurance. It appears the bone scan was good. I indicated to the doctor how worried I was about the MIBG. He decided to look into it immediately but kept us waiting in his office for about an hour while he tracked down the results. That hour was one of the longest hours I have ever experienced. I said to James if the doctor returns to the room with a social worker then I’ll know the results are bad. What do you know? He came into the room with the social worker! We completely fell apart. He showed us Olivia’s MIBG scan – there was a hotspot on her left knee. I think I was in absolute disbelief – it was all like a horrible nightmare and I wanted to wake up and none of this would be happening to us. The part of the conversation that really blew me away was when the doctor told us that we should consider taking Olivia home and making her as comfortable as possible as it was highly unlikely that she will survive this. I just couldn’t believe that no child survives a relapse of neuroblastoma. Apparently, that is the case. I questioned whether or not he thought that spot on her knee could be localized and treated. He said that is most unlikely and that other areas of disease will appear later on. I just sat in the doctors office feeling completely stunned. I had moments when I just couldn’t breathe. I just couldn’t believe that this beautiful, healthy, active looking girl had cancer and that it was almost certainly going to kill her.

The doctor suggested that Olivia have an x-ray of her knee and that we stay another day so that we could see her regular oncologist. At this point, I had to leave his office, I was inconsolable and couldn’t breathe. The utter shock and disbelief were unbelievably overwhelming. I don’t think there are words to describe how I was feeling. It’s a feeling I hoped and prayed that James and I would never have to experience. I cannot imagine a pain worse than this. The prospect of losing our beautiful, perfect Oli is absolutely gut-wrenching. My heart is in pieces and it’s something I don’t think I’ll ever recover from. I should also point out that James was equally as devastated. I found it difficult seeing him so upset as he had always been so incredibly positive about Olivia’s health which I always found comforting and reassuring. Whenever I was feeling worried or anxious about Olivia, he would always pick me up but this time there was nothing he could say to reassure me. We were both completely helpless and there is absolutely nothing we can do to make Olivia better.

Olivia asked us on a couple of occasions why we were crying. We had to explain to her that the neuroblastoma had returned in her knee and it was bad. She was interested to know which knee but didn’t seemed at all concerned about the seriousness of it all. She cuddled and kissed us and told us not to worry. She is amazing – she is the one who has the cancer and she is comforting us. I realize that she doesn’t have the same understanding that we have, nonetheless, that breaks my heart.

Olivia had an x-ray on her knee that afternoon. We were later told that the x-ray didn’t show anything, however, this is sometimes the case.

We saw Olivia’s oncologist on Thursday. She was great and a lot more sympathetic than the doctor we had seen the previous day. However, she did point out that the situation looked grim and that if Olivia has relapsed, she would have an extraordinarily slim chance of surviving. Olivia was initially given the most intensive treatment there is available which means the neuroblastoma cells that did not respond to that treatment become resistant to any further treatment. The disease usually returns in an extremely aggressive manner.
We spent about an hour with her doctor going over our options while Olivia sat at the nurses’ station cutting and drawing with the social worker. We have been given three possible options to think about. The first option is quality of life - take her home and make her comfortable. Second option is a gentle chemotherapy which won't cure her but just keep the cancer cells under control and prolong her life. The third option is to try for an aggressive chemotherapy protocol (second line drugs) to see if it does anything to the cancer. Unfortunately, there has been very little success with this third option because even if a child reaches remission, it is unlikely that it will be sustained and the cancer will return. On the other hand, we are leaning towards this option at the moment - we feel we need to try what we can to save our little girl. We indicated to Olivia’s doctor that we want to seek opinions from other specialists in other hospitals, however, we suspected they might all say the same thing as there are no curative options for relapsed neuroblastoma patients.

Olivia’s doctor was going to organize an MRI scan for the following week. This would most likely identify any abnormality in Olivia’s knee. We headed back to Canberra that afternoon still in shock but also slightly in denial. We were to return to Sydney the following week once we had word from Olivia’s doctor regarding the date for the MRI. We also had to wait for the results of some other tests she had done this week, in order to confirm the diagnosis. At this point, her doctor believes that it is most likely Olivia has relapsed and suspects the disease has returned to her bone marrow.

The following few days were filled with complete sadness. I found it incredibly difficult not to cry in front of the girls. The pain and sadness we were feeling is indescribable. Olivia is the most beautiful, courageous little girl - I can't put into words the way we feel about her. She is just so special to us. She is breaking our hearts with the beautiful things she is saying to us. We just can't imagine our lives without her. We are so incredibly determined to fight this but at the same time, we do not want to see her suffer any further.

As I have mentioned, Olivia is aware that her cancer has returned. Whenever we tell her that she will most likely need more chemo and radiation, she is completely unphased. She doesn't seem to worry that her hair will again fall out or that the chemo will make her sick. However, one comment Olivia did make to me was "I don't like chemo, I don't like radiation...hang on, I love radiation!" She continues to astound us with her responses and resilience. She is a very strong little girl.

Right now we need all the strength we can muster. The girls are keeping us going at the moment. We have to stay strong for both of them. Olivia and Sarah are best of friends and absolutely adore each other so we need to keep an eye on Sarah too as the impact on her is going to be just as devastating. It is so incredibly difficult trying not to cry in front of them - I do try hard but sometimes it's impossible. James is the same way. Right now I just want to spend every second of every day with our girls. When I hold Olivia, I just can't let go. Every night before I go to bed, while she is sleeping, I kiss her and tell her that I promise she will be okay (this is something I’ve always done). I am committed to keeping that promise. We are not going to lose hope. There is always hope...what else is there!

Saturday, April 26

Last night, James and I decided to take the girls to Jamberoo water park. Fortunately for us, the season was ending on Sunday so we got in just in time. Olivia’s Make-A-Wish was to go on the waterslides so we decided to make her wish come true since we hadn’t yet heard back from the Make-A-Wish Foundation.

The girls had a fantastic time and we were really lucky with the weather. However, the water was very cold, which Sarah didn’t particularly enjoy – she kept telling us that she was “Colg”.

Monday, April 28

We took Olivia to pre-school and broke the news to her teacher. We were all very upset. Olivia enjoys pre-school so much. It broke our hearts. Her teacher said that we should still consider her to be enrolled and that she is welcome to return at any time when she is feeling well enough.

We returned to Sydney today as Olivia has an MRI scan booked for tomorrow. Sarah came with us this time. The weekend was tough. Apart from Jamberoo, we spent a lot of time doing family things – swimming, riding bikes, going to parks, etc. James and I spent a lot of time crying and trying to come to terms with what’s been happening. I continue to wake up everyday feeling as though I’ve just had some sort of nightmare. Reality sets in pretty quickly and if it wasn’t for my beautiful girls, I really don’t know how I would get out of bed sometimes.

Just before leaving for Sydney, I spoke to Olivia’s doctor who said that one of her more experienced colleagues had said to her that she has never heard of any child who has survived after relapsing with neuroblastoma, after having the same intensive treatment as Olivia. I just didn’t want to hear that. Surely, there are children out there who have survived a relapse – that seemed incomprehensible to me!

Tuesday, April 29

The day began early with Olivia heading up to Ambicare at 7am. We waited around a while before she finally had her scan at about 10.30/11am. She required a general anaesthetic for the MRI.

It was then an anxious wait for the results. The nurses could see that I was upset and paged Olivia’s doctor once Olivia returned to the ward. Her doctor finally showed up later in the day. Whilst James and I had been praying that all of this had been some sort of mistake or simply for a miracle, in our hearts, we knew that we would not be getting good news. As soon as Olivia’s doctor sat down with us, we knew that things were bad just by the look on her face. The MRI scan showed that there is a one centimeter lesion in Olivia’s left knee, which appears to be in the bony part of her bone marrow. James and I managed to keep it together throughout hearing this news. Her doctor discussed the possibility of doing a biopsy on the lesion for further confirmation of the diagnosis. This, apparently, would not be easy, given the location of the lesion and it would also significantly weaken her bone. We were not keen on this idea.

Olivia’s doctor had also spoken to an oncologist at Westmead who was happy to see us and another doctor in Melbourne, who said that he would probably follow the same protocol Olivia’s doctor has suggested to us. We decided that we would go to Westmead.

We discussed our options for Olivia. There are many options available to relapsed neuroblastoma patients but none of them are curative. Olivia can no longer be cured. Her best bet was the intensive treatment she’s already had. Those nasty cancer cells just work out a way to resist the chemo and sometimes radiation and then continue to grow out of control. The only treatments available are palliative. They relieve the symptoms and can slow the growth of cancer cells but the neuroblastoma will eventually take Olivia’s life. We were told the median time Olivia is likely to have left is six to nine months. I honestly believed that we would never have to hear those words. Those dreadful words are burnt into mind. Time is no longer on our side and we have to make the most of every precious minute with our beautiful, beautiful daughter.

We discussed the option of pursuing aggressive chemotherapy. Her doctor is happy to see if Olivia responds to this treatment but expects that the cancer will eventually progress. An appointment had also been booked to see the radiation oncologist on Thursday. We were hoping that some local radiation to Olivia’s knee would help keep the cancer at bay in the short term.

After a long discussion with the doctor, I completely fell apart. Again, both James and I were inconsolable. The girls were happily running around the ward, playing in the toy room, totally oblivious to what had just happened and why we were so upset. My God, how do we get through this? Finding the strength for this one is going to be tough.

Wednesday, 30 April

We headed up to the hospital in the morning to quickly see Olivia’s doctor. As it turned out, I spoke with her briefly as we decided we wanted to have a hospital-free day. I am finding it particularly difficult being back in the hospital. It’s hard enough going there for scans but now the prospect of spending more time in the oncology ward while Olivia has chemo is sickening.

We took the girls to the fairy garden in the hospital. They absolutely love it there. It’s a big garden with two levels and a lot of effort has been put into making it a magical place for kids. There are plenty of hidden fairies and other mythical characters that the girls love looking for. It’s a beautiful, tranquil place and we spent a lot of time there with Olivia during our previous week in hospital.

Mum and Dad drove up to Sydney today. They offered to come up and I felt that we needed the support at this time. Thanks, Mum and Dad!

In the afternoon, I heard from Olivia’s doctor who had some trial reports on various 2nd line chemotherapy protocols for us to read and she’d also made an appointment with a doctor at Westmead for Thursday. I met up with her in the hospital and spent about an hour going over everything. I am really happy that Olivia is in her care as she is very caring and thorough and is doing her best to help us with our decision.

We decided to spend the afternoon at the Sydney Aquarium and Wildlife World, which were both fantastic. Unfortunately, we arrived back at RMH a little bit late for the dinner they put on. We managed to score some leftover food but I was then told by Penny, the manager, that we missed out on meeting Orlando Bloom and Miranda Kerr!!! Apparently, they spent about an hour with the kids over dinner and we missed them! No-one was told they were coming because it would have been called off if the paparazzi got word of their visit.

Thursday, 1st May

We met up with the radiation oncologist this morning to discuss radiation to Olivia’s knee. His plan was to do the radiation in increments in conjunction with her chemo.
He also suggested giving Olivia a couple of doses of radiation prior to going on holidays in order to keep the cancer under control. We agreed with that plan and were booked in for radiation planning next Tuesday, followed by radiation therapy next Wednesday or Thursday.

Mum and Dad took the girls for most of the morning so James and I could get a few things done. We had to chase up Olivia’s urine catecholamines results which were all normal. The urine catecholamines measure hormone levels which can become elevated in the presence of neuroblastoma. However, this is obviously not always the case since Olivia’s are normal.

Shortly afterwards, Olivia’s doctor phoned me to say that she was looking into getting a biopsy done for Olivia.

We packed up at RMH and we all (Mum and Dad included) headed over to Westmead to meet with the doctor there.

I think James and I both knew what we were going to hear but I guess we were kind of hoping to hear that the situation wasn’t completely hopeless. Unfortunately, according to the doctor, that’s exactly what it is. I just sat in his office not wanting to hear any of it. I did not want to hear that my beautiful girl was going to die. I wanted him to tell us that there are survivors and when I suggested that perhaps Olivia had a one percent chance of survival, he pointed out that it was less than that. I suppose he didn’t say it was zero so we are going to cling onto that miniscule bit of hope. He told us that our goal should be to give her good quality of life whilst possibly prolonging her life. The doctor said that some kids deteriorate very quickly when diagnosed and that we should just enjoy our time with Olivia now as this is as well as we’re ever going to see her. We asked about the neuroblastoma only being detected in her knee and he said that it was just the tip of the iceberg and that other areas of disease will appear sooner or later.

James and I walked out of the doctor’s office feeling completely shattered. We then headed back to Canberra. It would have had to be the longest trip I have ever taken. I didn’t stop crying. I felt as though my heart had been ripped from my chest. Once again, there are no words. At this point, I’m still wondering how we’re going to get through this.

Olivia made a wish with the Make-A-Wish Foundation a couple of months ago. She wanted to go on the waterslides in Queensland. James decided to follow it up, hoping the foundation would fast-track Olivia’s wish. He explained our situation and they happily organized the trip for a week from Saturday, after Olivia had completed some radiation.

Once again, our weekend was busy weekend doing many family things – swimming, bike riding, paddle boats on the lake, spending time with family. I have felt a strong need to be surrounded by James and the girls. I have to apologise to all of my wonderful friends who have been ringing me to offer their support. I have found it very difficult talking about all of this and just need some time to adjust to this whole situation. James and I really do appreciate everyone’s messages of love and support and offers to help. I’ll come round eventually.

Olivia has been asking me a lot of questions about cancer - what is it? why does she have it? what does it do? It's very difficult trying to explain it all at a level she will understand. However, it's amazing how much she does understand it. She knows that it can spread and grow out of control and she knows the difference between the "bad cells and happy cells" as she puts it. We've also discussed making changes to her diet as we want to help make her immune system as strong as possible throughout her treatment. She seems keen to make some changes as she understands how some foods help the "happy cells" work better. We are in the process of seeking nutrition advice and will most likely try some neurolink chiropractic to help her digestive system work more efficiently. We will also be buying organic whenever possible.

Another thing we have noticed with Olivia is she seems to talk a lot in terms of future events. She often comments on her future birthdays, for example, when I turn 6, can I ...? or when I'm 15, can I do...? The other day she said to me "I'm going to let Sarah help me blow out my 5 year old birthday candles". It just breaks our hearts to hear this. Every time she made a comment, James and I were reduced to tears. Our typical response to her questions is "of course you can, darling" or "we really hope so". At the moment, we are just trying to live day to day but these comments serves as a reminder of what we are probably going to face down the track. I want to be able to think that she will be with us for her 5th birthday. I want to know what she will be doing or look like when she's 15. Like every parent, in my mind, I have her whole life mapped out. I imagine what she will look like, I think about what she will be like at every age, I wonder what she will do at school or for a career, I think about her wedding. The list goes on. I don't want to miss any of this. James and I know just how much she has going for her... everything!

Monday, 5th May

We took Olivia to pre-school this morning because we know how much she loves going and she might as well while she is up to it and in Canberra.

I rang Olivia’s oncologist this morning to tell her that we did not want to Olivia to have the biopsy on her knee. We weren’t comfortable with the idea, particularly since MIBG scans are very accurate and Olivia’s MRI confirmed that there is a lesion in her knee. What further proof is needed? We also felt that we didn’t want to put Olivia through the trauma of having the biopsy and weakening her knee. She has to go through enough as it is. Her doctor agreed.

After discussing Olivia’s treatment plan with her doctor, we decided to cancel the radiation therapy. Her doctor said that if she has radiation in conjunction with chemo, it would be difficult for her to determine which treatment is working for Olivia. We don’t want to put Olivia through any unnecessary treatment. The plan now is to start with the aggressive chemotherapy protocol. Her doctor will re-scan her after two cycles to see if it has helped. If Olivia is having a good response to the chemo she will continue for another four cycles and begin radiation. Once again, she will have to endure many hospital visits for neutropenic fevers, sickness and transfusions and she will lose her gorgeous curly hair. If the cancer progresses and Olivia is not responding to chemo, it will cease immediately and we’ll have to work out where to go from there. We truly hope that we are making the right decision for her – the most difficult decision we have ever and will ever have to make! Quality of life is important to us, but we simply just can’t sit back and do nothing and watch her deteriorate.

Olivia’s doctor is going to find out more information about the planned treatment and get back to us. She is also going to book Olivia’s surgery to have a portacath inserted.

James rang the Make-A-Wish Foundation to see how soon they could organize our trip to Queensland given we were no longer going to Sydney for radiation. To our amazement, they were extremely accommodating and organized the trip for the next day (Tuesday). Wow – we had to finish unpacking from Sydney and start packing for Queensland!

By the way, we went to the lake this afternoon to have some photos taken by our friend, Kelly Tunney. She is an amazing photographer and seems to capture the most beautiful moments. We would like to say a big thank you to Kelly for photographing us yet again – we think you’re wonderful! If you would like to see some gorgeous shots of our girls, check out Kelly’s blog at www.kellytunneyportraits.blogspot.com.