We travelled up to Sydney on Monday, 28 June for Olivia’s routine 3 monthly scans. As always, we were hoping we would get good results as we had been for over the past 18 months. I have to admit I had been having a difficult time in the couple of months leading up to the scans. I was having bad dreams which I thought was strange as I had rarely dreamt about our Olivia’s condition. I started to feel overwhelmed by fear and was concerned that I was having these dreams for a reason – was this my ‘motherly instincts’? I questioned this for weeks until I took her to our chiropractor when I came away feeling reassured that Olivia was okay. I put it all down to stress and the usual anxiety I have regarding Olivia’s condition. However, in the weeks leading up to scans, my anxiety level was quite high. I felt as though I was having panic attacks, but I wasn’t panicking about Olivia, my heart would start racing over silly, little things. I would say to James – I’m really anxious and I don’t know why.
Anyway, it was finally time for Olivia’s scans which were booked two weeks later than usual. Everything was going according to plan until we heard that the MIBG radioactive dye had not arrived for Olivia’s scan (apparently they import it from Canada). Luckily, this only delayed us for a couple of days as it was expected to arrive later in the week. Our consultation with Olivia’s doctor went well. She was happy with the way she looked and her blood counts were good. Although Olivia’s doctor didn’t have the MRI results at that stage, we were feeling quietly confident about the results. We decided to head back to Canberra on that Tuesday so that Olivia could enjoy some time at home and we could see Sarah who stayed with my parents so she could go to preschool.
We returned to Sydney on Thursday (with Sarah) so that Olivia could have her MIBG injection. Again, the girls were spoiled by the gang in Nuclear Medicine (we love you guys!) who always give the girls lovely presents. Needless to say, they lap it up every time.
On Friday morning (July 2), James went ahead of Sarah and I and took Olivia to the hospital for her scan. Sarah and I arrived about half an hour into the scan. On arriving, I noticed Olivia was not in the usual scanning room. We were in room 5…the last time we were in room 5 was when Olivia last relapse was discovered. I commented to everyone in the room that we were in the ‘unlucky’ room but tried not to think too much about it. As usual, Olivia was lying very patiently and still while James was entertaining her with a DVD. We hung around for a little while but Sarah was feeling a little restless so we headed down to the cafe for a ‘warm’ hot chocolate and I had my desperately needed tea. I took Sarah down for a wander around the hospital’s fairy garden. A few minutes after arriving, I felt an overwhelming urge to get back to the scanning room. In fact, I was panicking as though I sensed something was wrong.
When Sarah and I returned to the scanning room, I expressed my anxiety to James and even began to cry. He tried to be reassuring and didn’t seem to be concerned at all especially since there didn’t seem to be anything to indicate that the scans were bad. Finally, the scan was over but I sensed there was something wrong and it was written all over the faces of the technicians in the room. I completely fell apart. I couldn’t breathe and felt as though my heart had been ripped from my chest all over again. I don’t think there is a word to describe that sick feeling of complete devastation and helplessness. Olivia started asking us what was wrong. I didn’t know how to tell her that her cancer returned once again. Being so much older, I wasn’t sure how she’d react. She demanded to know what was wrong, so I told her that her cancer had come back and that it was very serious. I was inconsolable and all the while, she was hugging me and telling me that she was going to be okay. How is it that a little 6 year old girl has that kind of capacity to comfort her mother like that? She is absolutely amazing.
I then began to wonder where the disease was…was it local? Has it spread all over her body? Is it in her brain? All of these scenarios flashed inside my head. I insisted that the technicians tell me where the cancer was. They were reluctant but I desperately needed to know. It was in the left femur, the same bone as Olivia’s last relapse, only higher up.
Absolutely shocked and devastated, we headed up to ward C2North to see Olivia’s other part-time oncologist, who always seems to be the bearer of bad news. Of course, he confirmed the worst for us. We just sat there in tears while, yet again, tried to reassure us by telling us she’d be okay and not to worry. This was just so unfair!!! The news was just so unbelievable. I know we’ve heard it all before and we are aware that in Olivia’s condition, a relapse is highly likely but you never quite believe it and you don’t want to believe it. Toby spoke with us about our limited options, though, they were all palliative. James and I were too distraught to take in much of what he was saying. We needed to head home and somehow absorb this news as best we could.
Needless to say, our weekend was terrible. I don’t think the news was sinking in with me. I was a wreck but I still couldn’t figure out how any of this could be so. We had to try and pull ourselves together for the sake of the girls who were carrying on as though nothing had happened (which is a very good thing). On Saturday, we took the girls out for a bike ride. Olivia began riding her bike without training wheels for the very first time…it was a bittersweet moment. She loved it…she just took off. There was no stopping her. It was such a huge milestone because all of her previous treatment had held her back so much. We were all so excited. Olivia also got to spend some time with her best friend, Ella, who she just adores.
With the news of Olivia’s relapse, Mum and Dad, who had only just arrived in Port Douglas, to visit my brother and his family, had decided to return to Canberra after only a couple of days.
I spent countless hours on the internet researching possible options for Olivia. The only treatment I thought might warrant further investigation was some sort of antibody therapy as I’d read that it was showing promise as a frontline treatment.
We headed back to Sydney on Tuesday to discuss our options with Olivia’s regular oncologist. We decided that giving Olivia radiation to her femur would be one of our best options since she gained benefit from it last time. We weren’t keen on the chemotherapy option as Olivia had already had so much and why put her through all of that again when she doesn’t stand to gain much benefit from it at all (in the long term). We were still hoping and aiming for the miracle cure. Olivia’s doctor did look over a chemotherapy protocol which is typically used in our circumstances. However, we all agreed that a different approach should be taken and that is when I brought up the antibody therapy, aka immunotherapy. The treatment we were after was ch14.18 antibodies. Olivia’s doctor seemed to suggest that they might be able get that treatment at the hospital. We decided to meet again the following week to give her time to chase up this treatment.
Later that day, Olivia had her radiation planning meeting so they could prepare for her five radiation treatments the following week. This all seemed to go smoothly and we were hopeful that once again, this treatment would place her into remission once again.
In the meantime, on my mission to find a treatment that could potentially save my daughter’s life, I stumbled across a pilot program being run by a professor at Greifswald University Hospital in Germany. I was lucky enough to make contact with a lovely lady in the UK who has established an organisation called FAN or Families Against Neuroblastoma. Her charity helps other UK families establish appeals to raise funds to send their children overseas for treatment. They also organise outings for NB kids and their families. She is working tirelessly to raise awareness of this disease in the UK and globally. This lady had made contact with a German professor who is running a pilot program and currently uses the antibody ch14.18 to treat relapsed and refractory NB patients. Ch14.18 antibody therapy helps the immune system attack and kill neuroblastoma cells. It has been researched and trialled in the US and has shown to improve survival rates by around 20 percent. I decided to investigate this pilot program further and begun the process of exchanging emails with the professor.
We headed up to Sydney on the Sunday again so that Olivia could begin her week of radiotherapy. We also met with Olivia’soncologist again. We were devastated to learn that ch14.18 is not available in Australia and nor was it available in the US due to short supply. Unfortunately, the antibody is not commercially produced so it is unavailable to relapsed patients at this time. We left Olivia’s doctor’s office feeling absolutely shattered and completely hopeless. We felt as though we had no options left!
Olivia’s doctor booked her in for a bilateral bone marrow aspirate the following day. The results would take about a week. An anxious wait but we were hopeful.
That evening we received an email from Olivia’s doctor who had passed on some information from a European doctor that implied a trial using the antibody therapy may open in Australia in several months. Again, we had renewed hope.
Radiotherapy went smoothly and Olivia was presented with a bravery award as well the gift of a doctor’s kit from the radiotherapy team.
We returned home to Canberra, looking forward to having a week at home so Olivia could enjoy her first week back at school after the holidays. Olivia loved being back at school, amongst her friends. I guess life felt somewhat normal for her. She also went to ballet. Her ballet teacher told her that she could participate in the ballet exam if she wished as she felt that she was dancing well enough. She had previously felt that Olivia had difficulty with the timing of the music and I believe that this was largely due to her hearing loss and ear infections she had repeatedly suffered. Thankfully, the issues with her ears seemed to resolve (after several visits to the doctors and specialists, ear cleanings and antibiotics) and her dancing/timing seemed to improve.
Last Tuesday night, we received a phone call from Olivia’s doctor…one that we never wish we’d had. She informed us that Olivia’s disease was more widespread than we first thought as both bone marrow biopsies had come back positive. We spoke with her doctor for up to an hour and a half. I couldn’t focus as I was still trying to take in this latest blow.
I realised now that there was the possibility that antibody therapy was no longer an option for Olivia now. The antibody apparently works best on minimal residual disease and Olivia now had measurable disease. James and I were shattered. The pain I felt in my heart was indescribable. I phoned my parents to tell them. They raced over to try and console us. They, too, were heartbroken. Amongst all of this, I was frantically searching the internet and strengthened my campaign to find treatment for Olivia. I let the emails fly. I even called the doctor in Europe who had mentioned the possibility of a trial opening in Australia. Unfortunately, she was unable to comment much on our situation as she had no information about Olivia’s medical history. However, she did give us the impression that the trial coming to Australia could take many months meaning it wouldn’t be here in time to benefit Olivia. And time is not on our side.
I did not sleep that night. I was panicking, my heart was racing. I felt completely helpless. I was really starting to believe that we were going to lose Olivia. I then started to think about what that would feel like and needless to say, it was unbearable.
The next day was even worse. I didn’t know how I was going to face Olivia after hearing the latest news. It was just impossible to believe that this gorgeous, bright, bubbly, affectionate girl had such an aggressive cancer that would eventually succumb to. How do you face that? I couldn’t even look at her without falling apart. Olivia went to school that day and Sarah to preschool. James and I could barely function. Without a doubt, this was the worst day of my life. We came to the realisation that our daughter was going to die and there wasn’t a damn thing we could do about it.
Thank goodness for the help of some wonderful friends who took each of the girls for the afternoon so we could try to deal with our grief. Olivia had a wonderful afternoon playing with her friend, Ella, while Sarah spent some time with her friend, Matisse.
That evening I had scheduled an appointment to speak with the German professor about his pilot program. I also spoke with a parent from the UK whose son is undergoing this treatment in Germany. She couldn’t speak highly enough about it. She was impressed with the care her son was receiving and said that good results were being achieved through the treatment. Soon after, we spoke with the professor who, after reviewing a summary of Olivia’s medical history, felt that Olivia would be a good candidate for antibody therapy. We discussed the treatment and the results he has seen and he seemed to think that it was quite possible that remission could be achieved or even eradication of the disease. The professor seemed like a lovely man and was happy to offer the treatment to Olivia. At the conclusion of our discussion, James and I instantly knew that this is what we had to do.
We also spoke with a specialist at Memorial Sloan Kettering Cancer Clinic in New York. He takes a slightly different approach with relapsed patients. He offers high dose chemotherapy followed by 3F8 antibody therapy (mouse antibodies). However, this treatment is likely to take at least two years and many children develop allergic reactions to 3F8 called HAMA or Human Anti Mouse Antibody which means patients must immediately stop treatment and cannot resume this treatment until HAMA goes away. This potentially renders this treatment ineffective if a child is unfortunate enough to develop this reaction. Also, the cost of treatment in the US is exorbitant. We would require $350,000 just to get through the door! Mind you, we would find a way to get treatment there if we needed to. You can’t put a price on your child’s life.
Treatment in Germany does come at a cost too. We would be looking upwards from the $200,000 mark for antibody therapy and much more if chemo is required. We also need to consider travel costs and living expenses.
We have informed Olivia’s doctor of our decision. After much discussion and debate over how we were going to make this all possible, James and I have decided to head to Germany with Olivia and Sarah in about 6 weeks (the week of September 13 to be more accurate). We have decided that Olivia will start treatment in Sydney using the irinotecan/temozolomide chemotherapy protocol to, hopefully, stabilise her condition until we can get to Germany.
We have had to begin a major fundraising drive to fund Olivia’s treatment in Germany and already we have been inundated with offers of assistance from family and friends to help us make it all possible. We are incredibly lucky to have such wonderful family and friends behind us and we are so very humbled and grateful for their support.
Our wonderful friends, Tash and Gess, along with many other helpers are organising a fantastic charity dinner to raise funds for Olivia’s treatment. It will be held on Saturday, 11 September at the Hellenic Club. There will be fabulous food, entertainment, an auction and Peter Overton will be the guest speaker. I will post more details as they come to hand.
Also, this Saturday’s Canberra Times will feature a story about Olivia and our plight to take her to Germany for treatment. There will also be a Seven News story airing on either Saturday or Sunday evening. Stay tuned.
The latest news is that Olivia FINALLY had her portacath inserted yesterday. She tolerated the surgery well and amazed us at how incredibly well she bounced back. She began chemotherapy today and seems to be tolerating it well so far. As Olivia’s parents, we couldn’t be more proud of that amazing girl. We love her more than anything (and our Sare-bear too, of course) and together we are going to keep fighting. We’ll never ever give up! Olivia is our little hero – a true inspiration!