Kirsty here.  I decided that it was time I made an effort to update the blog as James has done the past few entries.  I guess I kind of lost the motivation to do it.  Sometimes it’s like re-living the whole nightmare and becomes too much.  Olivia’s health has completely consumed me, so when I’m not busy being mum to Oli and Sarah, I am Olivia’s carer and I tend to throw myself (somewhat obsessively) into researching, contacting doctors, parents, anyone who can give me even the   smallest bit of information that might help Olivia or lead me in the right direction in terms of finding the best possible treatment we can for our Oli.  I am a woman on a mission and find myself running on adrenalin pretty much 24/7.

So much has happened since James’ blog entry.  It’s hard to believe that anymore could actually happen to us!  We were completely devastated by Olivia’s relapse in January but found the strength to move forward and devise a treatment plan for Olivia, with the help of her doctors.  We were to start MIBG therapy with a view to commence local, external beam radiation two to three weeks post MIBG.  The biggest frustration for us was the wait.  The high dose Olivia needed for MIBG therapy was not available until March 1^st because the nuclear reactor at Lucas Heights just couldn’t provide it any sooner.  I have since found out that the reactor only operates at 30% of its capacity due to lack of government funding which is just disgusting.  In the meantime, the people who need any radionuclide therapy for medical purposes need to wait, ie. Olivia!  James and I found ourselves constantly wondering what this disease was doing to our girl while we had to wait all of those weeks before she could commence treatment.  It was an incredibly anxious and frustrating time to say the least.  However, during that time, we did manage to collect stem cells from Olivia which was a little unexpected as she is so heavily pre-treated, we thought it would be extraordinarily difficult.  We collected enough for three potential stem cell rescues which may open up other treatment options for Olivia in the future. 

James has previously mentioned much of the above so I’ll skip to the latest news.  A couple of weeks ago, Oli began to complain about a sore molar.  We just assumed that one of her adult molars was pushing out one of her baby teeth and that it would take its natural course and fall out in due course.  I should also mention that in the week or so before that Olivia was constantly waking at night or going to bed feeling scared.  She was terrified of the dark and was seeing things, thinking that someone was in her room.  Even after constant reassurances, she found it difficult to settle and usually ended up in our bed.  Her tooth then became a bigger issue and she was unable to sleep comfortably because of the pain.  We ended up having to give her round the clock Panadol.  She struggled with the pain at school and required pain relief.  I managed to get an emergency appointment at the dentist.  They checked and cleaned her teeth and said that the tooth should fall out soon on its own accord and to just keep up with the pain relief.  I left the dentist feeling somewhat concerned that this pain was going to continue or escalate.  As it turns out, we had a sleepless night and struggled to keep the pain under control.  The next day, Olivia was too unwell to go to school.  I decided to ring the dentist and ask them to extract the tooth to make her more comfortable.  We returned to the dentist immediately.  They numbed the area and extracted her tooth.  Oli was her usual brave self and I was her very proud mum. 

Unfortunately, Oli continued to complain of pain that day which seemed to stem from the extraction area.  I had also noticed that from a couple of days before, she had an itchy, watery right eye and it appeared puffy.  We put it down possible conjunctivitis.  I decided to take her to the local GP who thought that she had hayfever (affecting only one eye?!?) and she prescribed her $30 eye drops.  All along, something was worrying me.  Deep down inside I just felt there was more to it than that and wasn’t at all convinced that hayfever was the problem.  I was worried there was something more sinister going on but I didn’t want to admit it.  The next day, the problem with her eye continued, as did the pain.  However, Oli pointed out that the pain was coming from around her right cheek and orbit.  Although I felt a little concerned by this, I began to think that this was possibly a sinus infection.  Anyone who’s had one can tell you that sinus pain can be quite bad.  The only thing that made me think that it may not be was that she didn’t have the green, mucousy discharge you get with sinusitis.  I also recalled the doctor in Melbourne had pointed out that there was slight uptake in the sinus cavity in her PET scan.  He asked us if she’d had a sinus infection or a cold as sometimes there can be increased uptake in sites of infection.  She hadn’t been unwell but then she started blowing her nose so we put the increased uptake down to infection.

In the evening, I decided to call the paediatric registrar at Canberra Hospital.  She said that Olivia needed to be checked out and that we should bring her in immediately.  James took Oli to hospital that night while I stayed with Sarah so I could get her off to school the next morning.

She had to have a cannula inserted at Canberra hospital.  She hadn’t had much to drink and the doctors really struggled to find a vein.  It took about 10 goes on one arm, 10 on the other, and then about 5 on the hand before they could find the vein!  Olivia is normally fine with needles, but she was clearly very traumatised by this.  She has also recently had a few bad experiences with her Port-a-cath needle insertion, so is starting to get more anxious whenever she has to have a needle.

The next morning, the consultant at TCH felt that what Olivia had wasn’t as simple as a sinus infection so an MRI was booked for later that day.  We didn’t have to wait too long for results.  James had left the hospital to get some take-away for us all when the registrar came in to break the news to us.  You always know that you’re about to receive bad news;  Firstly, their faces say it all and then they lead you down the corridor to some isolated room.  Luckily, I had my good friend, Caroline, with me.  We were told that the MRI showed a large mass in her right maxillary (cheek) that was extending into the sinus cavity, ethmoid air cells and orbit (the bone around the eye).  Although I partly expected this result, I really was hoping for the best.  It blows me away every single time.  We know that in our situation Olivia’s disease is likely to progress but for some reason, our brain never seems to really believe it.  It is just so UNBELIEVABLE!  The most difficult thing for me is seeing Olivia finally become symptomatic of her disease.  She hasn’t been symptomatic since she was two years old.  It’s heartbreaking watching her in so much pain all because of this monster we have no control over.

I was an emotional wreck.  I decided to ring Olivia’s oncologist (so glad I had her mobile number stored away in my phone for moments like these!).  She was fantastic.  She didn’t have much to go by as she hadn’t seen Olivia, nor did she have the scan pictures and results but I felt a little better after speaking with her.  She suggested we head up to Sydney the next morning so they (she and some other doctors) could review the scans and determine a plan of action.

James and I looked at the scan pictures with one of Olivia’s other doctors and it wasn’t good.  It appears that this tumour is taking up the whole cavity behind her maxillary.  It appeared to us that it had grown very quickly in the past few weeks.  The discussion then revolved around the next step.  After the doctors had consulted with a couple of radiologists, it was decided that a biopsy should be taken.  Olivia’s doctor seemed to be certain that the mass was neuroblastoma but couldn’t rule out fungal sinusitis, which can also be life threatening!  A biopsy of the site was organised very quickly with the ENT doctors jumping on board to help make this happen very quickly.  It was organised for the very next morning which also happened to be a Saturday.  In order to take a biopsy from the site, the doctor would need to go through the right nasal cavity to access her maxillary, hence the mass.  We were told it should be fairly straight forward surgery.  Despite fungal sinusitis being a very serious infection, we were hoping that that was all we’d be dealing with:  A clean out of the fungus, followed by a course of antibiotics.

We were told that it would take around an hour.  We waited and waited.  It was almost two hours when James and I looked at each other and started to think that maybe that was a good sign.  After all, it can take a while to clean the fungus out.  Unfortunately, this was not the case.  The doctor came into see us and after apologising for taking so long, he said “the conditions in there were horrific!” and that he “would’ve pulled out much earlier if it wasn’t for her doctor wanting the biopsy so badly.”  This had us worried.  He said that “it was full of blood”.  He said that that area is a vascular anyway but he was surprised at how much blood there was.  He said that reaching the site was a challenge and he finally had to drill a hole through the bone to access the mass.  Once he got in there, he said there was no fungus.  He said it looked very much like a tumour.  We were shattered once again.  We now had to wait for the official pathology results.  The doctors chose not to take any further action until the results came through.  Their immediate concern was continuing to manage Olivia’s pain so we now also had the Palliative and Pain team on board.  There was also talk of putting Olivia on steroids to help with any inflammation of the tumour site, thus reducing the pain.

We received the results on Monday.  Olivia’s oncologist confirmed that it was neuroblastoma.  However, she didn’t want to put her on steroids as she was worried that it might interfere with her planned MIBG therapy which was starting on Thursday.  The plan was to continue with MIBG therapy, followed by local, external beam radiation 2 to 3 weeks later.  Given that MIBG is not effective for approximately 8 weeks, we had initially considered using local radiation on her cheek to attempt to stop it from growing and causing her more pain, however, that would likely have delayed the MIBG therapy.

The recovery from the biopsy was not too much fun for Oli.  She had to have a pack in her nose for a few days.  It was incredibly uncomfortable for her and she experienced a lot of pain, not to mention the pain from her cheek.  She was on high doses of pain medication.  Despite the pain and discomfort and although she was unable to smile, she told me that she was smiling on the inside.  She’s so beautiful.

Until anyone has lived through what we have with Olivia, it would be difficult to fathom what she has been through.  I feel like most days I am just running on adrenalin and going through the motions to get Olivia through this ordeal.  It’s not until I have a quieter moment to sit back and reflect on the pain and suffering she has experienced in her short life that the tears really start to flow and my heart just breaks into pieces.  It’s so incredibly painful to watch her go through this journey, I sometimes find it difficult to fathom myself.  But I can’t continue on like that, so I have to smile through the tears for Olivia’s sake and pull myself together and get back to auto pilot.  I just wish I had an ounce of Olivia’s strength.  She amazes me each and every day.  She embraces all the joys in life and doesn’t let go.   She always manages to see the beauty in everything.  To her, cancer treatment is a nothing more than a big hiccup in her life’s journey that’s not going to stop her from living.  She looks to her future with such excitement and enthusiasm.  She has dreams and goals just like any other 8 year old girl.  James and I have spent the past few years searching for even the smallest glimmer of hope that Olivia might be okay but, at the same time, we’ve had to live with the all consuming fear that we will most likely lose her to this monster of a disease one day.  With every relapse we wonder, is this the one she won’t recover from.

When it came time for Olivia to have the pack removed, the ENT doctors came into her room to remove it.  In what was meant to be a relatively simple procedure turned out to be a bit of a nightmare.  Olivia panicked and became incredibly anxious that it would be very painful.  After a while, the doc managed to give it a very gentle tug but Olivia was in excruciating pain.  It was then suggested that they take it out the next day under general anaesthetic.  We thought that would be the much kinder option and Olivia was happy with that.  That afternoon, all of the kids on the ward were treated to a visit by Hi-5.  They came into Olivia’s room and although she’s not much of a Hi-5 fan anymore, they made her smile.  They played 5 second Pictionary on the white board which was a lot of fun.  I have to say Hi-5 has changed quite a lot from when my girls used to watch them – there was not one original member in the group, though four of them said they’ve been with the group for three years.

Olivia went into theatre first thing the following morning.  Apparently, it was all very straight forward with the pack coming out easily and no bleeding.  However, Olivia was a little worse for wear when she awoke from the GA.  She was in some pain with her nose (and the tumour was continuing to cause pain to the right side of her face) so she was on round the clock pain relief for the next few days, not to mention the nasal spray and ointment she has to use for the next 4 to 6 weeks!

Just when we thought things couldn’t get any worse, Olivia’s doctor came to give us more news.  Apparently Olivia’s tumour sample tested positive for ALK staining.  Whilst the tumour sample that was tested for this in Germany was negative, apparently, it is quite possible for NB to change and evolve into a more aggressive form.  It is also possible that the test used in Germany only covered the two most common mutations that make up approximately 85% of ALK mutations.   ALK is a gene mutation which stands for Anaplastic Lymphoma Kinase.  Less than 10% of all neuroblastoma patients have it and it means that those patients who do have it, have the most aggressive form of the disease!  We were very surprised that result came back as quickly as it did – we thought it would take a couple of weeks.  On the one hand, we were devastated but on the other hand, we realised that this possibly opened up another option for Olivia.  An inhibiting drug called Crizotinib has been developed to inhibit or slow the growth of ALK positive NB tumours.  We are in the process of learning more about it but we do know that a lot of work is being done at CHOP (Children’s Hospital of Philadelphia).  The drug is currently being trialled so there isn’t much data available regarding its effectiveness.  However, I have heard that, unfortunately, some forms of neuroblastoma can be resistant to this treatment.   I believe that they are also working on an ALK antibody but this is still in its preclinical stage.

Sarah came up to Sydney with us for the first half of our stay.  Although she really wanted to be with us, it really wasn’t much fun for her.  As much as we hate being without her, we know that it is best for her to stay in Canberra and go to school.  She is always spoilt for attention by my parents and I think that it helps a lot that she has Ellie to play with and cuddle. 

James here.

We travelled over to Westmead on Wednesday afternoon as Olivia was booked in to commence MIBG therapy on Thursday.

MIBG therapy uses a radio labelled isotope known as I-131 which is infused over a period of about 90 minutes.  The isotope travels to the sites of disease and attaches itself to neuroblastoma cells where it kills the cells with its radioactivity.  This is a slow process and can take up to 8 weeks or more before we can see its maximum effectiveness.  It is about 30% effective in relapsed neuroblastoma patients, which isn’t a great result but it’s about all we have right now.  We will never lose hope!   It can also assist in reducing bone pain associated with neuroblastoma, so is usually used in a palliative setting.  However, Olivia has previously shown good MIBG uptake, so in this case we used a higher dose in order to try to achieve tumour reduction.

Olivia had to have a foley catheter inserted prior to the infusion as half of the radioactivity is excreted in the urine in the first 24 hours.  When it came time to insert the catheter, Olivia fought it big time.  One of her favourite phrases in hospital is, “Hang on…I’m not ready” which is repeated like a broken record.  This time she worked herself up into such a state that she was very distressed and tense…she wasn’t able to relax enough for the nurses to insert the tube.  I really felt for Oli, knowing that it wouldn’t be a particularly comfortable procedure.  James and I tried very hard to keep her calm and it just doesn’t seem right or fair to her that we should be telling her everything will be okay if she just lets the nurses get on with it, when we all know that it will most likely hurt, but what else can we do…that’s our role.

In the end, the nurses suggested giving her midazolam which would relax her and make the procedure much easier.  The nurses said that she would go out like a light.  They gave Olivia one dose and we all waited for her to quickly fall asleep which never happened.  All it did was slur her speech and she continued to tell the nurses to hang on and that she’s not ready, only much more slowly.  They decided to give Oli another dose and, again, it only slowed down her speech and she continued to be aware of what was going on, though somewhat dazed and confused.

She knew it was going to hurt and fought it.  They eventually had to use gas, which still didn’t really stop her fighting – it just slurred her speech even more. 

Olivia was infused with 12 mCi/kg which is the whole amount assigned nationally for the month.  As previously mentioned, we had to wait for a month to get it and, in the meantime, Olivia’s disease was gaining momentum and spreading!

The MIBG therapy required Olivia to spend 5 days in an isolated lead-lined room because of the high level of radioactivity.  Unfortunately, we were required to very much minimise our time spent in the room with her. Olivia had to stay in a lead lined room and we were in an adjacent room.  There was a TV and camera in both of the rooms, though that meant that if we watched each other, we couldn’t watch TV.  It wasn’t until about the 3^rd day that Oli felt confident enough to actually watch the TV.  When on video, there was no sound, so if Oli wanted to talk she had to phone us.  We soon made up a series of hand signals to communicate.

As Oli was radioactive, we had to record our radiation exposure with portable radiation dose meters.  It was hard to be away from Olivia when she was all alone and not feeling 100%, so we tried to alternate going in to see her as much as we could.  We brought in a portable DVD player and iPod to keep her from going insane.  Thankfully, she was quite happy to watch the entire Harry Potter series and the first season of Dance Academy.

Overall, Olivia handled the MIBG therapy very well.  She never really complains, though we suspect that she was feeling quite nauseous for the first few days.  However, we knew she was feeling a lot better on the last day, when she was doing ballet in the mirror.

After the MIBG therapy, they conducted an MIBG scan to look for MIBG uptake by the tumours.  Whilst we were shocked to see that she now had new uptake (and hence new cancer) in her spine and leg, we were pleased to see that she appeared to have good MIBG uptake at her tumour sites, which hopefully will translate to treatment effectiveness.

Four weeks after her MIBG therapy, Olivia had local radiation on her cheek, head and hip.  This has left her with a bald spot at the front of her hair.  However, she just takes that in her stride and just wears thick headbands.   It’s strange, but for some reason, Olivia has always liked radiation treatment.  I guess it’s because the staff are always so friendly and the treatment doesn’t hurt her or make her feel sick.

Shortly after radiation, we went through a huge scare with Olivia experiencing constant back pain for over a week.  We were so worried that the pain was being caused by new tumours and decided that she needed to have a scan of her abdomen. 

We had planned to take a holiday to Brisbane and the Gold Coast in late April. As the MIBG scan in Sydney is only conducted on Wednesdays we were faced with having to cancel our holiday to have the scan or wait 3 weeks (because of Anzac day).   Thankfully, we were able to organise an MRI scan in Canberra at short notice.  The MRI didn’t show anything, which was reassuring, though an MRi is not definitive for detecting neuroblastoma so we had to wait for the MIBG scan some weeks later to be certain.   Any disease progression at this stage would be disastrous, as it would most likely result in the cessation of her treatment.   We decided to go ahead with our holiday and have the MIBG scan when we got back.

We were glad that we did go on holidays, as we had a fantastic time in QLD doing all the theme parks and swimming in the pool every day.  Thanks to Seaworld, we even got to go in the water and feed and play with a dolphin called Scooter.  Fittingly, Scooter was the mother of Nila, the dolphin that Olivia met on her Make-A –Wish trip several years ago.

Whilst we were away, we noticed that the tumour on Olivia’s cheek appeared to have reduced in size considerably and that she was looking really well.  We were hopeful that this was a sign that the MIBG treatment was working.

Leading up to her MIBG scans, we had been thinking about what our treatment options would be once the bulk of her disease has been reduced.

A sample of her tumour had been sent to the US a few weeks earlier for testing.  After many weeks, it was confirmed that she has an ALK mutation.  Whilst this does open up the likelihood of giving her the ALK inhibitors that are currently being trialled in the US, it also means that she has the most aggressive form of neuroblastoma.   We were curious as to why the ALK test in Germany came back negative.  It is possible that the Germans only test for the main 3 mutations that make up 85% of ALK mutations.  As it turns out, Olivia has one of the very rare types that falls into the remaining 15%.  So, just to put this into perspective, she had approximately a 1 in 100,000 chance of having neuroblastoma, of those kids, approximately 7% have the ALK mutation and then probably about around 1% of those have this particular mutation: that equates to approximately 1 in 140,000,000 kids in the world having her exact type of disease!  Needless to say, there isn’t a lot of data available on successfully treating this type of neuroblastoma.

We had our consultation with our Oncologist after Olivia’s scans.  At the start of our discussion the scan results weren’t available, so we discussed our treatment plan, which included an additional round of MIBG treatment, Indium and Lutician treatment in Melbourne, possibly followed later in the year by ALK therapy and a Vaccine or personalised medicine (chemo) in the US.  Unfortunately, our treatment plan was torn apart when our oncologist received a phone call with Olivia’s scan results.  Other than a reduction in the areas subjected to local radiation, the disease in her bone marrow has spread considerably.  It is now in her arms, legs, spine, shoulders and skull!   Clearly the MIBG therapy hasn’t worked.  We were just totally shattered by this news, as all our treatment options were based on the MIBG controlling her disease.  Our oncologist suddenly changed her tune and indicated that there is now no treatment that is likely to be effective and suggested that maybe now was the right time to take her off treatment.  Even though we knew that this day would most likely come it still tore our hearts out to come to the realisation that after almost 6 years of fighting this horrid disease, she is now likely to succumb to it within a matter of weeks or months.  This was without a doubt the worst day of our lives.  We tried to explain why we were so sad to Oli, without telling her about the gravity of the situation.  After hearing this, she just remarked that she’s fine, as she is still able to dance!

As we were in no state to drive back to Canberra that night, we stayed in Sydney until the next day.  We had to constantly hold back tears watching her happily play and dance around. 

After a couple days of thinking about the worst, then seeing her do three hours straight of dance classes, we decided that Olivia still has too much strength to give up on.  It is simply dumbfounding that she can look so healthy and yet her body is so riddled with cancer.

We sat down and considered our options: standard chemotherapy is not our first choice as it has not previously proven to be very effective and it causes too many side effects.  The Indium and Luticium treatments in Melbourne rely somewhat on the MIBG therapy working and require her tumours to express Somatostatin receptors.  We thought of having her retested for suitability for this treatment (which was previously low), however, didn’t end up having the time to do so.  

As part of our original treatment plan, we were already investigating the option of moving to the U.S. for treatment later in the year.  They have many different types of treatments being trialled, most notably immunotherapy, ALK inhibitors, neuroblastoma vaccine, oncolitic viruses and customised chemotherapy. 

Just prior to Olivia’s latest scans, our oncologist had started looking into whether it would be possible to obtain the ALK inhibitor (Cryzotinib) in Australia on compassionate grounds, outside of the U.S. trial.  The drug is already available in Australia for lung cancer patients and was previously supplied by Pfizer for another patient at Sydney Children’s Hospital with a different type of cancer.  After a lot more researching the internet and making several phone calls to US specialist, we decided that the ALK inhibitor was the best initial treatment option for Olivia.   We were hoping that the request would be successful and that we would have her on the drug within two weeks.  Every day that passed, we wondered what this cancer was doing to her body.  We were constantly asking her oncologist if she had heard anything.  She told us that Pfizer had requested some more of Olivia’s scan results and background information.  We saw this as a positive sign.  We waited everyday for the approval, only to be devastated by the news that company policy was they wouldn’t supply it to Neuroblastoma patients outside of the US trial.  We couldn’t believe how it took them over 2 weeks for them to “consider “ our application only to advise that it is against company policy.  Time is something that is not on our side!

We were absolutely gutted by this latest news and were starting to feel that our attempts to save her were going to be in vein.  Fortunately, we had previously organised a phone call to the States to discuss treatment options over there.  We had always tried to keep abreast of US treatments, though had previously avoided going there due to the incredibly high cost of treatment combined with the possibility of Olivia deteriorating and being stuck in intensive care over the other side of the world.  However, we simply can’t give up on her and watch her deteriorate, and for ever wonder “what if we had taken her to the US”? 

The decision to go was sealed when we informed that if we entered into the ALK inhibitor trial in Bethesda, Maryland (instead of the one in Philidelphia), the treatment would be free.   The other good news was that we could probably go over there initially for 6 weeks for scans, the first cycle of treatment and then re-scanning, before taking the next 2 month’s supply of tablets back home with us.   We would then only have to return to the US for 1 week scans and evaluation every 2 to 3 months.

Once we made the decision to go, our lives once again became focussed on getting us overseas ASAP.  In order to fit it with the earliest opportunity to start treatment, we had 10 days to organise everything and get on the plane.  

As Olivia’s disease spreads it adversely impacts on her blood counts, requiring more frequent platelet and red blood cell transfusions.   We were deeply concerned about Olivia’s eligibility for the ALK treatment trial when we received an email from the US Dr indicating that Olivia’s neutrophils have been hovering around the 700 mark for the last 2 months, when the cut-off for the trial is a minimum of 750.  It was made very clear that this was a firm entry criteria and that the method used in the US typically produced lower results.  The only suggestion we were give was to try taking her bloods in the afternoon instead of the morning, as some patient’s neutrophil count increase with activity.  After a very stressful 24 hours thinking that Olivia wouldn’t be eligible for this last treatment option, we couldn’t believe that her count had increased to 1100!  USA here we come – if we can get our medical visas in time.

The visa application process through US consulate turned out to be quite involved and very frustrating.  Whilst they theoretically have the processes in place to issue emergency medical Visa, we had 8 days to get our visas and actually only obtained them with 2 hours to spare!  This was not helped by the fact that the interview and processing is conducted in Sydney, and the information line connects to a call centre in India, who have minimal information available to them and almost no interest in chasing anything up.  In fact, were it not for a very helpful lady at Australia Post, we would have not received our Visas in time to make our flights.  The Visa information line seemed to think that the visas had been sent, but couldn’t provide tracking numbers.  Australia Post couldn’t check to see if they had arrived without a tracking number.  Am I the only one who sees a problem here?  We were told to wait another day for the tracking number.  We waited but still no tracking number available with less than 24 hours till our flight.  After pointing out this problem to the call centre, they indicated that they would call with the tracking numbers within 24 to 48 hours!  Aaaaaarh! 

Thankfully we stumbled across the direct phone number to the sorting room at the GPO and spoke to someone who was willing to go look everywhere to find them without a tracking number.  She indicated that they had just arrived.  However, when I went into the post office a few hours later, they initially couldn’t find them and suggested they weren’t there.  They looked in another location, and still no luck.  It was only after I insisted they were there, that the helpful lady we had originally spoken to noticed the other staff looking for something and showed them where they were.

This was one of many major obstacles in the way of us getting to the US for the trial.  The last hurdle came late the night before we were due to depart, when we received an email from the US doctor that seemed to be questioning whether Olivia would be well enough to travel and would meet the criteria for being accepted onto the trial.  Olivia’s blood test results showed that her tumour marker was rapidly increasing, indicating that her cancer was getting much worse – yet she still appeared to be well within herself.  We made an urgent call to the States to discuss these issues and convinced them that Olivia was very well.

It had been an extremely stressful built up to our departure, but it was almost a relief to finally hop on the plane.  It was sad to say goodbye to our families and Olivia’s best friend Ella but it was also comforting to know that we were finally on our way to getting Olivia treatment that she so desperately needs.

 We will deeply miss our family and friends and also our loveable Ellie.  As we are only hoping to be in the US for 6 weeks initially, we didn’t have to pack our house and put our belongings into storage like we did for Germany.  Luckily Kirsty’s sister and her fiancée have offered to move into our place and look after the house and Ellie while we are away.

We have to thank Olivia’s oncologist for being so supportive and helping facilitate getting us on the trial in the US.  Considering that she was the person who originally suggested that now would probably be a good time to stop treatment, and had previously advised us against going overseas, she did everything she could to help up get on the trial.  She is probably now enjoying not having us call her every day and filling her inbox with emails!

Dylan Hartung is another kid who has also been battling neuroblastoma for a long time.  He was featured in the same 60 Minutes story as Olivia in 2008.  His family moved to the US about six years ago for life saving surgery.  He has since been on many different trials over there and has thankfully remained stable disease.  Ironically, just as we are moving to the States, they have decided that they have run out of treatment options in the US and that it is time for them to come back home.  We wish Dylan and his family all the best.