All posts by James

Goodbye Our Beautiful Oli


Our beautiful Oli passed away last night after a courageous fight. 

Her spirit is now free to dance without the cancer that burdened her body.  She was an inspiration to us all and has left a huge hole in our hearts. 

Rest in Peace our Princess.  We love you forever! 


Please pray for our beautiful girl

Just a quick update to let people know that Olivia’s health has significantly deteriorated over the last week and that she is currently fighing for her life. 

She is so strong that it wasn’t until the disease had taken over most of her body that she finally started to complain.  She is currently in Clare Holland House, where they are trying to control her pain.  Please pray for our beautiful girl.

Back from the US

Sisterly Love

Hi, James here.

We are now back in Australia after six weeks in the US.  The scans conducted after one cycle (28 days) of Crisotonib showed little change in her disease, although the oncologists did caveat the results by saying that she has so much disease throughout her body that it is hard to detect any small changes.  Whilst we were initially very disappointed to not see any real reduction in her disease, we are well aware that the results could have been a lot worse. Olivia’s disease is very aggressive and if she had not gone on this trial, she would almost certainly have succumbed to her disease by now. 

During past relapses, Olivia’s disease typically presented as isolated tumours and a degree of bone marrow involvement. Whilst we were previously always fortunate enough to be able to find some form of treatment that would fight her disease and get her back into remission, the reality of our situation is that we have not heard of anyone who has survived so many relapses.  With each relapse came the realisation that this disease was not going to stay away and that it would likely come back one day in a very aggressive form.  This time around, her disease has indeed been very aggressive and failed to respond at all to the MIBG treatment she had in March.

Scans conducted upon arrival in the US indicated that she had a very high degree of disease (95%) throughout her bone marrow, tumours in one of her lungs, plus many bony lesions including the one near her right eye that has caused it to partially close. Her LDH level, which is a non-specific tumour marker, had increased in just a couple of weeks from 700 to around 1500!  This suggested that her disease was spreading very rapidly.  We left Australia knowing that the ALK inhibitor treatment represented our last chance – if it didn’t work, we may not have been able to bring her home alive. 

Although Olivia’s disease has not regressed, we are thankful that she has remained quite well and hardly experienced any pain.  However, she only has a very small percentage of her bone marrow functioning and remains heavily dependent on platelet and red blood cell transfusions to stay alive. Despite this, she has on the whole been feeling well and has been her usual bubbly self. 

We had initially considered staying on in the US, in case Olivia began to progress.  We knew that if we returned home and Olivia progresses, then there would be very little chance of her remaining well enough to get her back to the US in time to start on a different treatment.  Whilst, if we remained in the US, we might be able to commence another treatment sooner.  However, the treatment that we have in mind has a lead time of almost a month and it is unlikely that she would remain well for that long.  Furthermore, there would be a much higher risk that she may not remain well enough to make the return flight home. 

We have searched far and wide, but to the best of our knowledge there is no other treatment option currently available for Olivia anywhere that offers a good prognosis for a child with such aggressive disease and so many relapses.  After discussing the risks and benefits with our US oncologist, we decided in the end that it would be best for us to return home at our first opportunity and likely remain there should Olivia progress. 

Of course, given her weakened immune system, even the trip home represented a high risk of Olivia catching a bug. On top of that, we also returned from the peak of the US summer to the middle of the Canberra winter!  It was regularly over 32 degrees in Maryland and peaked at around 40 degrees and was also quite humid.

Whilst we enjoyed our time in the US, we had perhaps not been able to get out as much as we would have liked. The extreme heat somewhat limited our capacity to do sightseeing around Washington D.C. On those occasions that we did venture out, we found that the girls, in particular, quickly tired in the heat.  We had originally planned some day trips to surrounding areas, but given the uncertainty with Olivia’s need for transfusions, we often found driving to air conditioned shopping malls an easier alternative – much to the girl’s delight.  Thanks to the Build-A-Bear workshops, they now have the best dressed teddy bears around!

Aside from the extreme weather, Maryland is certainly a very nice place and the people are very friendly. We also enjoyed a very high level of personal care at the NIH, by very professional staff.   

We were fortunate that we were staying at the Children’s Inn on the NIH Hospital campus, not just because there was generally a lot of activities going on to keep the girl’s busy, but because as a medical facility they have their own backup power generator. At the start of July, Maryland and Virginia were struck by a very fierce storm that knocked down many of the very abundant trees around this area and damaged numerous power lines, initially cutting off power to over a million homes.  A week later, there were still several staff at the hospital who had no power at home – right in the middle of a heat wave.  Fortunately, other than the associated traffic light chaos, we were barely effected by the storm.  

Due to the extreme heat during the day and very late sunset, we sometimes took the girls out to play on the basketball court after dinner.  As Olivia doesn’t really have the required upper body strength to shoot the basketball through the adult height hoop, she preferred to play with the ice hockey stick and puck. Whilst she generally wasn’t able to hit the puck with any great force, she seemed to enjoy giving it a go.  Unfortunately for Kirsty, there was one particular occasion when she did take a big swing – only to miss the puck and connect with Kirsty’s nose on the follow through! The amount of blood and obvious pain that Kirsty was in suggested that this was not just a light injury. It was quite a chaotic scene, as Olivia was also very upset about the whole incident.

As the NIH is a trial medical facility, there is no public Emergency facility.  Thankfully, we had a car and was able to get her to the local hospital just down the road.  We had to wait a while, but they eventually advised that Kirsty had broken her nose in two places. Luckily, aside from the swelling and a couple of cuts, her nose looked still quite normal.  The girls were remarkably well behaved that night at the hospital, considering that we didn’t get back to the Inn until around 1am.    

We weren’t initially sure whether Kirsty would still be able to fly home on the planned date, so had to delay booking our return flights until she had been cleared to fly. Luckily, our oncologist was able to make some phone calls and get Kirsty in to see an ENT specialist the next afternoon. The specialist subsequently advised that Kirsty was cleared to fly.

Once the decision had been made to leave, we thought that we would try to take the girls to Hershey Park in Philadelphia.  Both our girls have always loved going to theme parks, though we were worried that Olivia’s love of fast rides would not be tolerated by her platelet deficient body and she would risk bruising and internal bleeding.  However, with the support of the NIH medical team, she was topped up with platelets and red blood cells and given a possible 2 day window. We were greatly concerned by Olivia having intermittent nose bleeds and a swollen abdomen on the day we arrived. We debated whether to take her to hospital, but decided that we would rather monitor her and avoid the faster rides. Thankfully, her bleeding nose slowly got better and we eventually succumbed to Olivia’s constant requests to go on the faster rides.  Needless to say the girls had a great time, despite the heat – though Kirsty didn’t really enjoy having to sit out all the rides because of her broken nose.

We arrived back in Maryland two days prior to our departure. The doctors looked at her swollen stomach, though couldn’t find anything obviously wrong – and there was nothing apparent in her scans just a week earlier. They once again transfused Olivia to prepare her for the flight back home.

Given that in some instances Olivia now cannot last more than two days without a platelet transfusion, we decided to minimise our stopover in LA and keep travelling back to Australia ASAP. Furthermore, we had to take back 6 bottles of Olivia’s medication (about $20,000 worth), that had to be kept refrigerated the whole time. 

The return flight was certainly more tedious that the departing flight (when we fortunate to receive Business Class upgrades).  This wasn’t helped by the fact that Sydney was fogged out, forcing us to divert to refuel in Brisbane.  We eventually landed some four hours late and then spent another hour waiting for the girl’s suitcase that didn’t turn up until the next day.  It was a very long and tiring trip, though Olivia held up quite well. We ended up staying overnight in Sydney as Kirsty was able to get in to have her broken nose fixed the next morning.

We are happy to be back in our own home and being around family and friends (and our dog Ellie). We are definitely enjoying the extra space and not all having to live and sleep in the same room!

Whilst it is great to be home, we are somewhat anxious as we feel as though the safety net of being at the NIH has been removed.  We have only just started to experience the logistic problems of being back home and having to take Olivia across town to Hospital for transfusions every second or third day.  It was comparatively so much easier to just walk 200m up the hill to the hospital in the US.  However, we are lucky that an arrangement has been made to have a nurse come to our home every few days to take Olivia’s blood samples.  Even so, her blood levels can be somewhat unpredictable, and we have already had three urgent trips to hospital with bleeding nose or gums (caused by low platelets).  Olivia’s gums always bleed when she is in need of a platelet transfusion, though usually stop bleeding straight after being transfused.  She woke up a few weeks ago with particularly bad bleeding, though she wanted to watch the conclusion of the dance-a-thon before taking going to hospital.  She was transfused Sunday afternoon prior to returning home after the transfusion. However, Sunday night her gums were still bleeding quite heavily so we had to return for an overnight stay in the hospital.  There was an anomaly with her blood test indicating that her blood was not coagulating properly.  Furthermore she had some blood in her urine.  After bleeding for several hours, she was given a dose of vitamin K to help her blood clot and the bleeding slowly stopped. 

Her stomach also remains a major concern, as her liver seems to be constantly growing bigger and her stomach is now quite enlarged.  As much as we really want to know what is causing this, from a trail perspective, we didn’t want to know.  We have avoided bringing forward her scans  to diagnose the cause of this problem, as the most likely answer is cancer progression.  However, that would still come as a shock to us, as we first noticed the symptoms less than a week after her last scans.    Unfortunately, if that turns out to be the case, it would mean that she would be immediately taken off the trial – which appears to be otherwise controlling her disease.  Furthermore, there is nothing more that can be done to help her. 

We have been very careful with Olivia attending school, as her immune system is barely functional, and she is a very real risk of contracting some bug that could possibly be fatal for her.  Incredibly, despite all her treatment over the years, Olivia has barely had so much as a cold.  In fact, she has always been an amazingly healthy person for someone whose body has suffered from so much cancer.  However, this time around, the risk to Olivia health is very real.  As her bone marrow is not producing sufficient neutrophils to strengthen her immune system, she is most likely unable to fight off any significant infection.  In cases such as hers, it is often an infection that proves to be fatal. However, we cannot simply seal her away in a bubble, so just have to take some precautions and pray that she does not contract anything.

Alyssa Bloomby is an amazing person who briefly taught Olivia dance when she was only three. She has always maintained a keen interest in Olivia’s progress and recently volunteered to organise a 24 hour event called Dance4Olivia to raise funds for our family and the Olivia Lambert Foundation.  The event was held over the weekend three weeks ago and was a great success, with lots of dancers and many well respected instructors from Canberra and Sydney who volunteered their time.  Olivia, Sarah and Olivia’s best friend Ella had a great time, participating in classes most of Saturday afternoon.  We were amazed to see that there were 8 people who kept going all night and attended every class over the 24 hours!  We can’t thank Alyssa, her helpers, the instructors and the participants enough for making the event a great success.

Jacqui Ion is another amazing person, who even from South Australia has supported our family over the years.  Whilst we were away in the US, she organised a successful Women in Business lunch and donated the proceeds to our family.  Thank you so much for your support.

Finally, we would like to pass on our deepest sympathy for the family of Olivia Downey, who sadly lost her battle with neuroblastoma a few weeks ago.  We are glad that they were able to stabilise her enough to get her back home from Mexico, so that she could be surrounded by her family and friends. Although every parent of a relapsed neuroblastoma child has to live with the nightmare of knowing that they will most likely one day lose their child to this awful disease, we cannot fathom the heartbreak that they must be going through right now.  

We will post an update in the next few days, but since drafting this post, Olivia’s health has started to decline. 

ALK Treatment in the US

Smiling in the US
Smiling in the US

Hi James here,

After such a chaotic lead up to our departure, it was a relief to actually walk onto the plane.  Whilst we had initially been devastated by Pfizer denying us access to the drug in Australia, it was surreal that the option of free treatment in the USA arose that same day.  There were so many hurdles to overcome to actually get to the USA, and we knew that we would still face further hurdles prior to actually being accepted onto the trial.  Then there is no guarantee that the treatment will actually work.  However as we left Canberra, we knew that we were doing everything we possibly could to try to save our gorgeous girl.

Of course, given our recent luck, even getting to the airport wasn’t without drama.  Luckily, I went into the garage early in the morning, as I was greeted by the sight of the Kluger leaning heavily on a completely flat front tyre!  Of course, our spare was also partially flat, so it took me almost an hour to get the car sorted.  Thankfully, we still made it to the airport with time to spare.

We only had a short stopover in Sydney, where my best friend Tony and our friend Deanna (whose wedding we unfortunately will now miss) came to see us off.  A special thanks to Tony for picking up copies of all of Olivia’s previous scan results from Sydney Children’s Hospital for us, which we were requested to bring with us to the US. 

A special thanks to Qantas who gave us an amazing deal with our US airfares, considering that they were only booked less that 2 weeks before we departed.  Furthermore, Natasha, the mother of another neuroblastoma child who works for Qantas, advised us that our Sydney to LA flight had many vacant seats.  Kirsty thought that she had nothing to lose in asking for an upgrade at the counter, and after quite a lengthy wait was blown away to be told that we were being given complimentary upgrades to Business Class!

We were initially seated in a two plus two configuration, with the two girls next to each other, behind Kirsty and myself.  After take-off, Kirsty and I each chose a movie, put the headphones on and sat down to enjoy a peaceful relaxing flight.  Then reality hit home, when approximately every ten minutes one of the girls would yell out MUM……MUM…….MUM! or DAD……..DAD……..DAD!  Because the reclining seats are capsules, it’s not possible to turn around and see the seats behind, so we had to pause our movie, take the headphones off, get up and walk over to where the girls were to see what they wanted.  After a few hours of this calling out, much to the amusement of (or was it annoyance to) other passengers, Kirsty and Olivia swapped places.  It was a real treat to have beautiful meals, great service, all the extra space and a bed to lie on.  

We stopped overnight in LA and stayed near Santa Monica.  To our surprise, it was very windy and really quite cold and we were just wearing shorts and T-shirts.  The girls really enjoyed going on some rides at the pier, though we ended up having to drag them away as Kirsty in particular was really feeling the cold. 

After a bit of a rough night’s sleep, we headed off to LAX in two taxis, as we had so much luggage and our booked van didn’t turn up!  It was around 5 hours flight time across to Washington D.C., so with the time difference, we didn’t actually arrive until around 6pm and were all feeling pretty exhausted.  Departing the plane, we were shocked by the change in climate between LA and Washington D.C. –  It was very hot and quite humid.

Whilst waiting at the car rental depot, we noticed that the inside area near Olivia’s right eye seemed to be developing a bruise and also appeared partially swollen, consistent with a tumour growing in that area.  We wondered if that was being caused by a new tumour or the one in her sinus (that had been previously irradiated) coming back? 

We had pre-booked a car for six weeks at a discounted rate through my work, but the guy at the counter was hell bent on selling us an upgrade.  It took almost an hour of being mucked around before we finally got our original car – not a pleasant experience at all!  By this time, we are all very tired and frustrated.

We arrived at our new home at The Children’s Inn at the NIH (National Institutes of Health) at Bethesda, Maryland around 8pm.  However, it took us a while to get through the incredibly tight security, including being issued passes and having our car and luggage searched.  The Inn is huge, about four times the size of Ronald McDonald House in Randwick.  Our room is like a typical 3 star hotel room with 2 double beds.  Unlike our room in Germany, there is no separate bedroom, which means that we can’t watch TV or make any noise until the girls go to sleep, which has been taking them ages.  This is partly due to jet lag and partly due to them sleeping together in a double bed.  My feet hang about a foot over the end and I can’t really move without disturbing Kirsty – we really miss our King bed!  Thankfully, we only expect to be here six weeks. 

The Inn is very conveniently located only 200m from NIH where Olivia is being treated. However, it is up a steep hill and we have had some scorching hot days here.  The hospital itself is huge and quite modern. 

I think that when the staff at NIH first met Olivia they were very surprised at how good she looked and how much energy she had.  Obviously, her scans and blood test results made her out to be a very sick girl, though the only visible sign of her disease was her eye.  Just prior to leaving Australia, Olivia’s LDH, a non-specific tumour marker, had risen to a very high level, indicating rapid disease progression.  Also, a couple of her liver enzymes were abnormally high before we left so she had to take some medication to help protect her kidneys.

They have only previously had one ALK positive patient like Olivia on the ALK Inhibitor trial at the NIH, and unfortunately that child didn’t respond to the drug.  However, they were quick to point out that they have two patients on the trial in CHOP in Philadelphia who are currently doing well on the drug.

Although Olivia theoretically qualified for the trial based on her test results in Australia a week prior, she was still required to undergo three days of re-testing here to determine her current eligibility.  Needless to say this was a very anxious period for Kirsty and I. 

On the first day of testing, one of the nurses came in to advise us that her blood test indicated that she was neutropenic (meaning that she was very susceptible to infection) so we needed to make her wear a face mask and keep her away from other people as much as possible.  More importantly, her neutrophil count at 110 was significantly below the required level of 750 to enter the trial.  We had struggled so much to get her here and travelled so far, only to be likely turned around – this was turning into our worst nightmare!  Such low counts would also mean that the flight home would present a very high risk of infection for her.

After about half an hour contemplating the ramifications of this bad news, the Dr came in to see us and indicated that something didn’t add up with the blood test results so he rang the lab to check.  It turns out that of all the many numbers in the blood test report, there was a typo on the one that mattered the most to us.  Her neutrophil could was actually 1100, not 110, meaning that she was now back in consideration for the trial! This was just so typical of the emotional rollercoaster ride that we have been on over the last month.  

Olivia underwent several different scans, some taking hours.  She was a champion and lay so still for each one.  They did have trouble finding a vein to inject contrast for her head MRI, which caused her a lot grief.  Once she recovered and dried her tears, she actually apologised to us for making such a fuss.  This, practically brought Kirsty and I to tears.  It is so unfair that she has had to deal with this for most of her life!

We went in with Olivia for her MIBG scan, which we knew would show extensive disease.  They indicated that they do one full body scan and then do a spinning scan of one or two of the worst areas.  After the first scan, the technician indicated that she was going to consult with the radiographer about which area to re-scan.  She was gone for ages.  By this time we were becoming very concerned that there was so much disease that they couldn’t determine which parts to re-scan!  Finally the technician came back in, apologised for the delay and advised us that there were no particular issues.  We never actually saw the results of the scan, though were advised that she had very extensive bone marrow disease. Whilst that is obviously not good news, it was not unexpected. 

They did note some spots on one of her lungs from the CT, though this was not confirmed on the MIBG scan.  It is possible that there are tumours starting to develop there, which could become very dangerous.  The MIBG scan revealed a small tumour near her eye, which explains the bruising and swelling, as well as a couple of bony lesions but it mostly conveyed extensive bone marrow disease.   Most importantly, her brain remained free of tumours and she qualified for the trial.  The biggest risk to Olivia’s health remains the disease suppressing her blood counts and associated problems such as anaemia, internal bleeding and infection risk.

Olivia qualified for the trial and commenced taking the trial drug crizotinib on the Friday.  She is required to take an oral solution of the drug (she refuses to take the capsule after some bad experiences in the past) and needs to take it twice a day, 12 hours apart.  Although she clearly hates it, she always eventually takes it.  She didn’t stomach the first dose of the medication very well, throwing it back up 15 minutes later.  Apparently, this is not uncommon as the nurse later told us that every patient had vomited the first dose.  Since that first dose, we have given her an anti-nausea drug half an hour beforehand.  According to Olivia, the medication is a very sweet but foul tasting syrup and continues to make her feel a little nauseous.  She rinses her mouth out afterwards with water and then has a mouthful of something nice to counter the bad taste.  We have been giving her ice cream, but unfortunately, she is now turned off ice cream.  We can add that to the list of foods including apple sauce, yoghurt and juice, that she has been put off by taking them with different treatments over the years.  We don’t normally let her have soft drinks back home, but we have just tried giving her lemonade instead.  She may end up being turned off soft drinks too, which is probably a good thing, as ‘soda’ is everywhere over here and is hard to avoid. 

The whole time we have been here, we have all been going to bed quite late and sleeping in.  This has been mostly caused by Olivia having to take her medication quite late at night.  Olivia seems to take a long time to get to sleep each night, which may be combination of a possible side effect of the medication and the fact that she usually sleeps in the afternoon when receiving a transfusion as she receives pre-medication that makes her very drowsy.

Other than that one huge mistake with the blood count mentioned above, we have been very happy with the level of care over here.  The doctor/nurse to patient ratio is so much higher than in the public system back home and they are always willing to sit down and discuss anything relating to her treatment and arrange any further testing/investigations necessary. 

In our second week here, Olivia started to experience tooth pain, due to one of her adult teeth pushing in front of her baby tooth, in a similar fashion to what happened several months ago.  Olivia’s oncologist booked her in at short notice to see the dentist.  They explained that provided the pain doesn’t get any worse the tooth could stay in to see if it will fall out on its own accord.  As part of the investigation, they conducted a panoramic mouth x-ray.  We were surprised to be told that Olivia has not developed her adult molars for whatever reason.  It is unclear if this is due to a treatment side effect or just an abnormality that Olivia was born with.  It just means that she will have to live with her baby molars for life and will probably require extensive dental work.  This is merely one of many issues that we will happily deal with in the future if we can cure her of this dreaded disease.
We were warned by the doctors that one of the potential side effects of the ALK inhibitor was light visual disturbances.   After only a few days on the crizotinib (the trial drug), Olivia started experiencing slight blurring vision at night, when in darkness.  The doctors decided that it would be best to get her eyes checked out.  Her vision was okay, but the test indicated that she has swollen optic nerves.  This was initially a concern as this can often indicate pressure in the brain.  However, her recent head MRI didn’t show anything.  We had a follow up appointment with the ophthalmologist/neurologist, who confirmed that both optic nerves were swollen though could not find an immediate cause.  He ordered another MRI just to be sure, which also came back clear. It was suggested that one possible cause is her low haemoglobin levels.  We just need to ensure that she is monitored carefully as this can lead to further eye problems. 

Overall, Olivia remains quite well.  We were initially hopeful that the treatment is working.  Given that it has been four weeks since we left Australia, we expect that she would be much more unwell if the treatment wasn’t doing anything.    There seems to be several contradictory signs with her blood test results, for example, the tumour marker, LDH, has been fluctuating when we were hoping that it would just continue to decrease.  Most of Olivia’s blood levels are still quite abnormal as well as some of her liver enzymes, suggesting that the cancer is still significantly affecting her bone marrow.   As such, we are not under any illusion that the treatment is rapidly killing off most of her disease.  It may be doing something, but at this point, we can’t really be sure how effective it is. 

The bruising and swelling around her right eye seemed to subside within a week of starting the treatment, filling us with hope that the treatment is working.  In fact, the bruising had completely healed.  However, she has since developed a new bruise and her eye is again swollen, appearing quite misshapen. 

Olivia was originally needing red blood cell transfusions once a week, though her last one lasted her just over two weeks.  However, she still requires frequent platelet transfusions, averaging about every three days.  If we were back in Australia, we might be able to boost her platelets by giving her back some of her own stem cells (that we recently collected), however, we can’t do this whilst she is on this trial. 

Thankfully, it is pretty easy to tell when Olivia needs platelets, as she normally wakes up with bleeding gums.  The hospital still has to do a full blood count and await for the results before transfusing her.  She also requires prophylactic pre-medication as she can have a severe allergic reaction to platelets so, all up, it can take around 5 or 6 hours.  We are hopeful that her platelets will start to last longer as the treatment continues, so she won’t need to spend much time in hospital.  Other than transfusions and scans, the treatment itself actually requires very little hospital time.

Whilst we can walk to hospital from the Inn, we are so glad that we have a car, as the nearest supermarket is about a ten minute drive.  Given that we only have one shelf in the shared refrigerator, we find ourselves going to the shops every second or third day.   We have also done a bit of exploring Bethesda and downtown DC, though the traffic here can get pretty congested.  From what we have seen so far, this is a really nice part of the US.  We had originally planned one or two overnight trips to surrounding attractions, though this will have to wait until Olivia’s blood levels stabilise some more, so that we can be sure that she won’t need a transfusion (which we would have to pay for) whilst we are interstate.  We also have been told that she should not be going on any rollercoaster rides or the like that could possibly cause internal bleeding.  Olivia was not happy at all to hear that.  Hopefully, if everything goes well, we would love to take the girls to DisneyWorld on one of our future trips when we return for scans. 

Olivia has three days of scans and procedures this week, which will show us if the treatment is working.  On the one hand, we are scared to see how much disease she has, but on the other we are so hopeful that there is a significant reduction and that we can return home with the medication knowing that we have bought our gorgeous girl some more time. 

We should mention that there  is another treatment option available to Olivia at the NIH, should the current ALK inhibitor not work and Olivia remains well enough.  It is a customised treatment, based on testing of her disease’s response to numerous different agents in the laboratory.  This seems like a logical approach, given that different types of neuroblastoma respond to different treatments.  This will require taking a tumour sample for testing and can take a minimum of three weeks to analyse.  Unfortunately, as Olivia’s disease is in her bones so it has never been easy to obtain tumour samples.

When we were in Germany, we became friends with a Scottish family who also have a daughter called Olivia, who is one year younger than our Olivia.  In what was a shocking week for all of us in Jan 2011, both Olivias relapsed within a few days of each other.  Unfortunately, she has been constantly fighting the disease ever since.  In a desperate attempt to help her, they recently travelled to Mexico for a some alternative treatment.  Unfortunately, Olivia’s health has been deteriorating and they are now desperately trying to get her back to Scotland so that she can be at home.  We pray that her condition will improve enough to allow her to make the journey home and that they can raise the required funds to make it possible.






Olivia Keeps Fighting

Our beautiful girls         

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 1st 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 3rd 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.