Olivia Lambert

Hi, it’s James here.  Our lives have once again been shattered by the news that Olivia has  relapsed a fourth time!  Scans taken on 18 January have revealed 3 new tumours – two in her skull and one in her hip.  The bigger one in her skull is at the site that was previously deemed to be inconclusive after her last scans in November.  If only it had been confirmed back then, we could have been treating her 6 weeks earlier and may have even still been able to collect cancer free stem cells.   It is frustrating to know that a PET scan would most likely have confirmed the relapse, but they don’t have this facility at Sydney Children’s Hospital. 

The realisation that Olivia had again relapsed was terrifying.  While we have heard the prognosis from our doctors many times before, it doesn’t get any easier.  We know that Olivia is now facing the toughest battle of her life and we need to find a treatment regime in a hurry that is likely to benefit her.  Time is not on our side and we have been pushing the doctors to get the ball rolling, as the disease could be rapidly spreading throughout her body.  However, it seems as though there are so many obstacles in our way, including needing to test her bone marrow and once the results are known, discussing treatment options with specialists that don’t return from leave until February.

Given that Olivia currently has multiple lesions in different parts of her body, it is likely that her bone marrow is now infected.  She just had a bone marrow aspirate on Tuesday and we are anxiously awaiting the results which are due late this week.  We still intend to collect stem cells next week irrespective of whether she has marrow disease, as contaminated stems cells can still be of some use in an emergency if her marrow becomes too supressed – although that will be giving her cancer cells back!  She has failed to harvest twice previously, although this time, we will use Pleraxafor, the very expensive drug that we are hoping will stimulate her stem cells for collection.

If, as we suspect, her marrow is infected then we are facing her worse relapse ever, with minimal stem cells in reserve.   This will effectively limit our already meagre treatment options to those that don’t require stem cell rescue.

Once more we have been scouring the internet for treatment options and communicating with local and overseas specialists and other parents in similar situations.  While there is no stand out emerging treatment, we have discovered a few treatments that we need to carefully look into.  We have always the option of MIBG radiation therapy, although in Australia it is offered in relatively low dose, usually for palliative care.  We are mainly limited in Australia by supply, as treating just one child with MIBG requires over half of the weekly production of the radioactive material from Lucas Heights!  MIBG is used in higher doses overseas, often in conjunction with chemo, but requires stem cell rescue, which we currently can’t do.  However, we have been told that some kids do respond well to the low dose MIBG, so this will probably be our first treatment option, commencing in a few weeks time.

We met with a doctor from the Nuclear Medicine Department at Westmead hospital last week to discuss MIBG therapy.  We have been told that during this treatment, she will be isolated for approximately 4 days, with a video link to Kirsty and I in the room next door.  Thankfully, this treatment shouldn’t make her fell too unwell, although we expect that boredom will be a big problem.  We are limited by what she can bring into the room, as everything will have to be disposed of afterwards.  That definitely rules out taking in her new iPod!

It may be some months before we know whether Olivia responds to the MIBG therapy.  This should give us more time to plan some additional follow up therapies.

We have previously consulted with 2 Doctors in Melbourne who had mentioned a few new experimental treatment options.  They are trialling an Octeotide based treatment called Indium therapy that has demonstrated some effectiveness in another relapse patient.  However, this treatment requires the presence of Somatostatin receptors, which Olivia will need to be tested for.   We are taking Olivia to the Peter MacCallum Institute in Melbourne this week to have her tested for the Somatostatin receptors through a Gallium PET scan.  This scan will also give us a more accurate indication of the current extent of her disease, which could be very confronting.

Whilst in Melbourne, we will also discussing another new treatment called Lu177 Dotate.

We still have the option of following up Olivia’s initial treatment regime with traditional localised radiation treatment, however, that will not eliminate the source of her disease, nor any bone marrow disease.   We are trying to avoid chemotherapy, as she has had so much of it in the past and has only had a mixed response.  However, if Olivia doesn’t respond to our planned radiation based treatments, we may be forced to put her back on chemo as an interim measure to attempt to keep the disease at bay whilst we arrange other treatments.

Even if we are fortunate enough to fight off the tumours that Olivia currently has, we know that more will come.  We need to keep treating her as though she has a chronic disease. However, it’s a catch 22 situation; if our initial planned treatment regime is effective in eliminating the tumours, then she may become ineligible for most trials as it is then not possible to determine the effectiveness of any subsequent treatment.  

We are currently looking into a vaccine trial in the US that has shown promising results in very limited patients.  Depending on Olivia’s response to the any initial treatment regime, this may be worth considering to consolidate her treatment.  We have always been aware of treatment options in the States, though we have been reluctant to travel there unless they have a proven breakthrough treatment, due to the extremely high cost of medical treatment and having to again leave our family and friends.

Treatment decisions will not be made lightly, though we will do whatever we can to try to save our beautiful girl, without overly compromising her quality of life.  We are not ready to give up on her whilst she is looking so well and she had indicated to us that she is prepared to fight.  We will know if the time comes that we will need to stop treating her, but we first need to do everything that we can to help her fight this dreaded disease.

The following was written prior to Olivia’s recent relapse:

We hope that everyone had a very Merry Christmas and a Happy New Year.  We enjoyed a very pleasant holiday season, with Olivia in remission and in great health.  We were fortunate to spend a great Christmas together with most of our extended families.

As previously noted, shortly after we returned from Germany, Olivia re-fractured her knee and was forced to give up dancing, which she has always been so passionate about.  Sadly, even once her fractures finally healed, she still wasn’t able to return to dancing as she was often plagued by an intermittent mystery knee pain.   We really missed our dancing girl! 

We went through a very anxious period starting around August last year after Olivia very suddenly stopped walking due to discomfort in her left knee.  She wasn’t complaining of severe pain, but simply couldn’t walk.  We could not help but think that it could be cancer returning, though that would’ve been the first time that Olivia has felt pain as a direct result of neuroblastoma.   After an initial bone scan picked up an abnormality in both knees, we had a very anxious 2 week wait for MRI and MIBG scans.   It’s a sign of how crazy this situation is in that we were praying for either a structural problem (fracture?) or treatment related bone pain.  The MIBG (neuroblastoma specific) scan came back clear, though the MRI showed abnormalities.  Whilst not certain, the doctors indicated that they didn’t believe that it was cancer and that it was most likely a side effect of the treatment, possibly the Rapamune oral chemo tablets she takes.  It was quite bizarre, though somewhat comforting when her knee pain suddenly completely switched legs!   She ended up spending several weeks in a wheelchair and then another month or so on crutches before her knee finally settled down.

During the October school holidays, Olivia and Sarah went on their first Camp Quality Camp without us.  Olivia’s round of chemo scheduled for 2 weeks beforehand had to be delayed due to low blood counts.  However, rather than have her miss camp, we decided to push back her chemo 3 weeks and let her enjoy her holidays.  Thankfully her knee was OK at the time.

We were a bit apprehensive about how they would go on their own, and were half expecting the phone call begging for us to come and pick them up.  As it turns out, they were having so much fun that when we called them they either wouldn’t stop talking about what they were doing or didn’t even want to speak to us because they were so busy enjoying themselves!   They were so lucky to have some such wonderful companions as Bec and Sasha, and after they got back kept going on about how much fun they had together.

It felt quite strange being without the girls, as we had spent so much time together over the last year.   We decided to take advantage of the girls being away to do some minor renovating around the house with some help from Kirsty’s Dad.  Unfortunately, due to the amount of time spent in Sydney, we still hadn’t finished unpacking all our belongings from when we finally moved back home (after 10 months away) so the place was certainly a mess for a while.  However, the end result was well worth it, although I now have a new found respect for plasterers! 

Two  days after the girls got back from camp, we departed for Queensland to see my sister Romy’s family and visit the theme parks.  We try to have at least one good family holiday a year as we know how much the girls enjoy it and we really value our family time together.  With so much uncertainty in our lives, we don’t ever want to regret not giving Olivia the chance to live her life to the fullest.  Both girls are particularly fond of theme parks, so were very excited about going to the Gold Coast.  It was also great for them to spend some rare time together with their cousins Alex and Christian. 

We certainly made the most of our time up there, going to all 3 theme parks at least once and 2 waterparks.  Sarah has really become a lot more daring and was keen to go on a lot of the bigger rides, including the BatWing at MovieWorld.  Olivia has always been so fearless for someone of her age and is fortunate enough to meet the height restrictions for most rides, except the Superman ride – there were tears when she found out she couldn’t go on it!   It was a great holiday, but very full on.  The girls must have been exhausted when they got back, starting straight back at school.

Thankfully, with the exception of her knees, Olivia was generally very well between chemo cycles and went to school most of the time we were in Canberra.  Ever when her blood counts were low, she still generally felt well.  Although that did present some risk of her catching something, we had to let her try to be as normal as possible.  It is a credit to her determination and the assistance from her school and teacher that she managed to keep up with her classmates despite missing so much school.  We are so proud of her!

We were recently alarmed to discover that Sarah had contracted Chicken Pox that was going around their school.  As Olivia’s chemo wipes out all her previous immunisation, this can be quite dangerous to her.  Thankfully she did not catch it, though she still had to endure two very painful needles as a precaution.

Despite ongoing research, we hadn’t been able to come up with a plan for maintenance or for future treatment should Olivia’s cancer return.   The sad reality of our situation is that it is almost certain that Olivia’s cancer will return and there are currently very few options left for us, anywhere in the world.  We sought treatment opinions from a specialist in Melbourne and from several prominent experts in the US.  The Melbourne Dr was probably the most positive that we have come across in Australia, and we walked away with a possible course of action if Olivia relapses.  Sadly the American Dr’s were not so positive, indicating that she has almost no chance of long term survival. 

We know that we are really just trying to buy enough time for new, more effective treatments to come along.  In the meantime, we just need to keep Olivia as healthy and happy as we can.

We are always cognisant of trying to balance Olivia’s quality of life against the likelihood of extending life.   We had wanted to stop Olivia’s chemo for some time, but we were so scared that she would relapse shortly after we did.  We finally made the decision to stop Olivia’s chemo altogether late one night in October. Whilst finishing our packing to travel to Sydney to start chemo the next morning, Olivia woke up with excruciating pain in her knee just before midnight.  We realised that the treatment was starting to impact on her quality of life and we couldn’t bear to watch her suffer through that kind of pain.  Strangely, it seemed to be a very slight increase in her chemo dosage a few months prior that made the side effects that much worse, also making her lose the last of her hair.

Thankfully it didn’t take long after stopping treatment for her knee pain to fully subside.  We knew she was back to her normal self not long after the treatment stopped, as she just doesn’t stop talking and is now full of energy and dances around everywhere, even when brushing her teeth!

Now that we have stopped treatment, we just watch and wait.  We still live a very anxious life but are trying to give Olivia a chance to build up her strength and live a “normal” life.  She is in good spirits and we are hopeful that she will remain in remission for some time.  In the meantime, we are looking into alternative treatments to help boost her immune system. 

Olivia currently looks very well.   Her hair is slowly growing back and she has a very strong appetite and has put on a bit of weight.  She has been enjoying going on bike rides and seems to have fairly good stamina.  Both girls have been spending a lot of time on the trampoline and in our little pool. 

Our number one priority at the moment is to collect Olivia’s stem cells.  Stem cells can be used to revive her immune system if it is depleted during future treatment.  Without sufficient stores of stem cells, it would not be safe to subject her to any aggressive treatments.  For example, she currently can’t undergo high dose MIBG treatment, one of the very few potential options that we have left.  In hindsight, we wouldn’t have been able to undergo the previously planned stem cell transplant in Germany as we weren’t able to collect anywhere near sufficient quantities of stem cells during the last two attempts.  It was very disappointing to put her through countless injections to stimulate her stem cells and have two lots of surgery, all to no avail.

There is a very expensive ($5,000 per injection!) drug available that we are hoping to use in February to stimulate her stem cells before trying for a third collection.  Given that she will have been off treatment for 4 months by then, we are hoping that her immune system will have had a chance to recover somewhat and the collection will be successful.

On the home front, we have been extremely busy, trying to get on with life between frequent trips to Sydney.  There just doesn’t seem to be enough days in the week to do everything that needs to be done!  I have been back at work full time since we got back from Germany and have pretty much used up all my leave during previous chemo trips, so haven’t been able to take much time off recently.

We celebrated Kirsty’s 40th Birthday party in December.  Being a two times cancer survivor herself, she has a lot to celebrate.  She had an 80’s themed party which produced some amazing costumes, including a Smurf and a giant Rubiks Cube!  Kirsty looked a true 80’s chick in her Madonna style costume complete with frizzy hair and lace gloves, whilst both Sarah and Olivia dressed up in pink flouro outfits.  Olivia even wore a matching pink wig. 

We couldn’t believe how much fun the girls had dancing and singing Karaoke and Olivia ended up stayed up until 1:30am!

The girls were lucky enough to both receive realistic mermaid tails with a proper built in flipper for Christmas that they can wear in the pool and swim around like a mermaid.  Unfortunately, our above ground pool is tiny and they get one or two kicks in before they reach the other side.  They love swimming so much, and have been begging for a bigger pool, but that will have to wait until things settle down and Kirsty is able to start work again.

Due to the extreme likelihood of a relapse, doctors suggested bringing forward Olivia’s scan intervals from the usual 3 months to 6 weeks.   Scans in November were considered to be clear, with the exception of a slight uptake in her head.  This will be monitored but for now is being treated as inconclusive.  The next scans are scheduled for 17 Jan.

Olivia celebrated her 8th Birthday on 15 January.  Each birthday is a huge milestone for us, as we never know how many more she will have.  We intentionally scheduled Olivia’s scans for after her Birthday, as we wanted her to enjoy her special day, unlike last year when there was a huge cloud hanging over our heads.

Olivia didn’t want a big party this year, so just had a few of her closest friends over for a sleepover. We spent most of the day at the pool (with waterslide) and then went to dinner at Wagamama’s, followed by dessert at Cold Rock.  Olivia was thrilled to finally get an iPod touch that she had been nagging us about.  Kirtsy and I were pretty tired after staying up into the early hours of the morning the previous night, after our first attempt at making her chocolate smash cake ended in failure!

On a much sadder note, we were deeply upset to hear of the recent passing of two of our close friends from Germany.  Felix was a 7 year old from the UK who relapsed the same week as Olivia and his family moved to the US to pursue different treatments.  He was an amazing kid who never complained and showed so much strength for such a little body.  Maddie was also a gorgeous 7 year old from the UK, who fought a very long and brave battle against this dreaded disease.  We pray that they are both now in a better place where they no longer have to suffer and we hope that their families can find the strength to get them through these tough times. 

Hi, James here.

We have had a draft update that we have been meaning to finish off, but just don’t have the time at the moment.  So just briefly, this is where we are currently at:

We rented out our house in April for another 3 months after accepting that we would most likely have to return to Germany for a stem cell transplant; only to decide against the transplant 2 weeks later!  We decided that the risks were too high given that she remains in remission and that we just need to try to give her body a chance to recover. 

 In the meantime, we are continuing with the German chemotherapy protocol, that, whilst making her sick during her week in Sydney Children’s Hospital, offers her quite good quality of life for several weeks between cycles.  Overall, Olivia has actually been very well whist back in Canberra, without any fevers or need for blood transfusions.  She has loved being back at school, swimming lessons and dancing now that her leg has finally healed.

Unfortunately, we still have found ourselves travelling to Sydney a lot for chemo, stem cell collection and radiation; however she has been able to attend hospital school for some of the time.

We have tried two different methods of collecting stem cells, but both were unsuccessful.  Though this does not impact us immediately, it may limit future options. We will likely try again later this year, after Olivia has finished her current treatment.

We had to wait for Olivia’s fractured leg to completely heal before undergoing two weeks of radiation on her left leg.  Strangely, Olivia has always somewhat enjoyed radiation.  Understandably, she is not so keen on chemo, where she barely talks and refuses to lie in the hospital bed.

Although we have spent much of the last few weeks in Sydney, we are really happy to have finally moved back home and retrieved all our belongings from storage.  We can’t thank Brandon and Craig   from Canberra Removals enough for volunteering to take care of our removal and storage.

We still have boxes everywhere, and should at this rate be unpacked by around Christmas!

Whilst in Germany, we promised Olivia that she could have her dream bunk bed, with a desk underneath.  She loved sleeping in it for the first few weeks, before hurting her “good” leg last week.  We still don’t know what happened, but she suddenly wasn’t able to walk.  Initial x-rays and examinations failed to find any explanation and we of course feared that the cancer had returned to her other leg.  We were all set to book her in for a bone scan, when a couple of days ago she started walking unassisted.  We are just praying that it stays away!  Having said that, she continues to have some slight pain.

That is pretty much everything.

We have to apologise for the lack of updates over the past few months.  Olivia’s care and treatment schedule has taken precedence and to be quite honest, I have been consumed by it.  James and I have both contributed to this blog, summarising the happenings of the last few months.  We will endeavour to update more regularly with brief posts.

We have finally returned back home after 6 months in Germany, although there was a huge cloud hanging over our heads – we were devastated to find out the day before Olivia’s 7th birthday that she has developed a new tumour in her leg. We were praying that the MIBG scan would be clear as the bone marrow aspirate and the MRI of Olivia’s torso prior to Christmas had both come back clear.  It appears that whilst the immunotherapy was able to initially clear her bone marrow, it was unable to stop a new tumour developing.  It is apparent that the (undetectable) source of Olivia’s cancer is extremely resilient and has once again proved resistant to all attempts to destroy it.  It seems that her immune system has been weakened by years of treatment and was unable to work with the immunotherapy to destroy all her neuroblastoma cells (immunotherapy tags neuroblastoma cells so that the body’s immune system recognises them as foreign cells and attempts to destroy them in the same manner as the body fights off most other sicknesses).

Needless to say, in light of this latest setback, we were utterly devastated and wondered how we would make it through Olivia’s birthday weekend.  I have to say that I don’t think I handled this news as well as I have in the past.  I found it incredibly difficult to deal with.  I just felt defeated, like this monster has beaten us yet again.  Nevertheless, we tried to make Olivia’s birthday as special as possible, treating her to a birthday weekend in Berlin where my sister and her boyfriend came to surprise her.  I made Olivia a butterfly birthday cake with the limited resources available to me in the house (and the supermarket) and also went out for a lovely dinner.  On Sunday, we took the girls to a lovely open air ice-skating rink before heading back to Greifswald.  I guess you could say that the weekend was quite bittersweet.  On the one hand, we were absolutely devastated and heartbroken by the recent news but we were just so happy to see that gorgeous smile on Olivia’s face.  I can’t even describe the incredible heartache I was feeling that whole weekend.

Although any neuroblastoma relapse is life threatening, with both of Olivia’s previous relapses the disease has been localised and didn’t spread rapidly as is typically the case.  We just prayed that this would be the case again.  At that stage, the disease seemed to be limited to her leg, which reduced the immediate risk to vital organs.  However, hers being bony disease meant that it could not readily be removed with surgery.  Also, neuroblastoma is a very difficult disease to detect, so it is possible that she has disease elsewhere that is not yet showing up on scans.  The German doctors were initially concerned about another possible lesion in her head, though they now believe that it was a false positive at the site of one of her original tumours.

We have once again spent countless hours looking into treatment options available in the US and Australia, but as we already knew, there is little documented success in treating relapsed neuroblastoma patients.  The Children’s Hospital of Philadelphia (CHOP) appears to have numerous trials on offer, though are all phase 1 (preliminary) trials that may not be of any benefit to Olivia, as they test the safest tolerable dose rather than the effectiveness of the treatment.  Germany offered us a novel type of chemo called RIST, combined with local radiation.  The German doctors believed that this chemo should be able to get Olivia back into remission.  They have suggested following up this chemo with a haplo-identical stem cell transplant.

We decided to proceed with the RIST chemotherapy and Olivia completed the first 2 out of 4 cycles of this tightly scheduled protocol in Germany.  It was decided during this time that we could continue with this treatment in Australia, though Olivia’s Australian oncologist had to seek special approval from hospital administration.  It was eventually approved for the remaining two rounds of the first phase and if she had a response, they would continue to fund the treatment into the second phase.

Before leaving Germany, Olivia had a biopsy to see if they can determine what type of neuroblastoma she actually has.  As her disease has always been in her bones, it has never been possible to get a biopsy without a degree of risk.  It is likely that there are numerous different types of neuroblastoma, however only a few have been identified to date. Identifying Olivia’s tumour may tell us whether it is a particularly aggressive type or a slower growing type.  Unfortunately, it is only in relatively few cases that they can actually use this knowledge to formulate a better treatment.  They are still trying to work out how to target specific types of neuroblastoma with specific treatments, however, this is probably still some years away.

Olivia underwent a biopsy on her lesion on January 20.  We were initially told that Olivia would be a bit sore for a few days after her biopsy.  Unfortunately, she ended up being in quite a bit of pain and was still limping quite badly when we left Greifswald two weeks later.

We left on February 8, our Sarah’s 5th birthday.  It was an incredibly busy day but we did try to make it as special as we could for her.  She was spoiled with presents in the morning although we had to spend much of our time cleaning up our room.  We then headed off to hospital as Olivia required a blood test and James and I had to be tested to see who would be the most suitable donor for Olivia’s planned transplant.  We also had to wait for the doctors to supply us with a letter regarding Olivia’s current condition and treatment just in case she required any hospitalisation whilst in transit.  I have to say that I really felt for Sarah given all the time we had to spend in hospital on her birthday.  Our plan for the afternoon was to travel to Berlin and stay the night there and take Sarah out for her birthday.  I even had one of our German friends order a birthday cake for her.  We had to go through quite a process.  All I wanted was a simple kid’s birthday cake without cream.  It was impossible!  I don’t think there is a single cake in Germany that exists without cream.  In the end, our friend did manage to order a cake without cream…I had no idea what we were in for.  Once we arrived in Berlin, I headed off to pick up the cake which turned out to be a strawberry fruit flan…huh?  Well, I suppose I did say no cream!  I was a little disappointed as I knew it wouldn’t be Sarah’s dream cake but being the happy-go-lucky girl that she is, she didn’t complain, and actually really enjoyed it.  We stayed in a nice hotel with a pool so the girls got to have a little swim even though the water was absolutely freezing.  They still seemed to enjoy it.  Although it wasn’t much of a birthday for Sarah, we did promise her a special birthday cake once we returned to Australia (still haven’t got around to organising it yet).

Thankfully, the flight home went quite smoothly with Olivia feeling well and both girls on their best behaviour.  Due to the tight scheduling of this chemo, we had to take Olivia straight to hospital in Sydney upon arrival back in Australia to commence her third round of chemo.  The combination of jet lag, heat (coming from a German winter) and the faulty air conditioning at Ronald McDonald house resulted in a very sleepless week for us.

After one week in Sydney, we finally returned home to Canberra. It was so heartwarming to see Olivia re-united with her best friend Ella. Olivia was also able to return to school, ballet and swimming, which she loved.  Sarah started kindergarten at Burgmann and also commenced ballet lessons and swimming.  Sarah became quite interested in ballet having spent time with Olivia dancing around the hospital in Germany. Whilst we aren’t sure if it is her ’thing’, we thought that she could give it a go for a term to see how she goes.

It was strange coming back home, particularly not having access to any of our belongings other than the winter clothes we brought back from Germany!  Given that we will be spending half our time in Sydney, we decided that it was not worth getting all our belongings out of storage and moving back into our house when it become available a month after we returned. We knew that we could possibly be moving out again less than 2 months later.  Thankfully, my parents have very generously opened their home to us so we have somewhere to live in between treatment before we return to Germany.  They also continue to care for Sarah whilst we are in Sydney with Olivia and have been looking after our gorgeous dog Ellie whilst we were away.  We were so happy to see her again and she just loves all the extra attention.

Whilst we were in Canberra, my dad and I had a meeting with Senator Kate Lundy in an attempt to rally the government to provide some financial assistance to patients, such as Olivia, who are forced to travel overseas for clinical trials. Sen. Lundy seemed quite receptive and asked that my dad draft a new public policy in conjunction with Senator Lundy’s office to propose change for pediatric cancer patients who require financial support to access clinical trials overseas.  My dad is currently in the process of seeking various professional opinions to support this direction and his proposed policy change.

We became very concerned when we saw that at the end of Olivia’s first week back at school that she started limping quite badly on her left leg.  It had been some 5 weeks since her biopsy in Germany and her leg had been okay for the last two weeks.  In our minds there were really only two possibilities, either she had overdone it and injured her leg, or the tumour had grown significantly to be causing her pain.  The latter would be devastating as this would mean that the chemo was not working and we would need a plan B which we didn’t have!  Our options right now are seriously limited and we don’t know what we would do if we had to stop the chemo.

Olivia was originally due for scans two weeks later, but we pressed her oncologist to bring them forward in light of this latest concern.  We really couldn’t wait that long to find out if we were dealing with disease progression.  Thankfully, Olivia’s doctor arranged a CT scan later that week and an MIBG scan and bone marrow aspirate for the following week.

After a very anxious wait, we were incredibly relieved to find out that it was not the tumour causing her pain as the CT scan indicated that Olivia’s femur had a suspected fracture.    Unfortunately, the CT scan didn’t provide us any information about the cancer.  We then had to follow up the suspected fracture with an x-ray which confirmed that Olivia had a healing fractured femur.  It was about 7/8 of the way through the bone. It may seem strange to most normal people how happy we were to find out that she “only” had a fractured leg!

As the fracture seemed to be healing, they only put her on crutches, not in plaster.  Trouble is Olivia loves dancing around so much, that it was difficult for her to not put any weight on her fractured leg.  We were initially perplexed as to how she could have fractured her leg so badly, without us knowing about it.  Our feeling is that it occurred during her (difficult) biopsy in Germany, due to the bone being weakened by the cancer as well as all of the treatment she’s had over the years.  This would explain why she wasn’t able to walk on it properly for so long after the biopsy.  It seems that the leg healed somewhat during transit and her chemo week back in Sydney, though hadn’t fully healed when she started back at school.  She was very active on her return to school, constantly running around, jumping off playground equipment and jumping on trampolines…I guess that’ll do it!  The orthopaedic consultant confirmed that the cause of the fracture was a result of the biopsy as he pointed out on the x-ray that the biopsy puncture was where the fracture was stemming from.  He wants Olivia to have a repeat x-ray in 6 weeks to check on its progress.

We returned to Sydney the following week for Olivia’s MIBG scan and bone marrow aspirate.  We were incredibly thrilled to find out that they were both clear!  This means that there was no evidence of cancer found anywhere, not even in her leg.  This proved that the chemo was working!  Technically, this means that she is in remission, though it is most likely that there are still microscopic cancer cells in her body that don’t show up on the scans.  We must continue with the planned treatment regime as it is pretty much inevitable that the disease will return if we don’t.  It could also return whilst on the current treatment so we must now make further decisions about the next course of treatment.  However, for now, we are happy to know Olivia’s disease is responding as well as we could have hoped for on this chemotherapy protocol.

When we originally planned our early return to Australia, we were expecting to stay here until late June this year.  However, just two days before we left Germany the professor sat down for a talk with us and informed us that if Olivia went into remission after the first stage (of up to 3 stages) of chemo then he would like us to return to Germany immediately for a haplo-identical stem cell transplant.  Recent developments in stem cell technology have allowed the German doctors to utilise a significant variation on the traditional transplant, using a stem cell mismatch rather than the traditional match.  As Olivia’s immune system clearly cannot fight the cancer, the idea would be to give her either James’ or my own stem cells, thereby giving her an all new immune system that hopefully can better fight off the neuroblastoma.  It was also suggested that post-transplant, we try immunotherapy again.  The theory being that with a new and different immune system, the antibodies may have a good anti-tumour effect.  However, we are reluctant to pursue this course of treatment in light of her relapse.  We are currently looking into the transplant option and seeking international opinion regarding this procedure.  We are also trying to look into other options in the US.

Unfortunately, the only options available to Olivia are in a clinical trial setting.  Most clinical trials require a degree of ‘measurable disease’ to be eligible for participation.  Olivia no longer has ‘measurable disease’ and whilst we are happy about this, it excludes her from most trials!  It’s a double edged sword – very unfair!  At this point, it is looking as though transplant is the only viable option for her.

Although we had always anticipated that if everything went well we could be heading back to Germany shortly, it is now starting to hit home.  It is a huge move and one we are not really looking forward to.  However, if this is where the greatest hope lies for Olivia then we will just have to do it.  The decision we are facing is an incredibly difficult one and hard to fathom without having walked in our shoes.  In our situation, I’m not sure there is a ‘right’ decision.  It is about weighing up the risks and benefits and quality of life and finding a balance.  Very, very difficult indeed!

We are also heartbroken at the thought of having to leave Sarah behind this time.  Sarah coped with being in Germany extremely well, making friends with the other kids and amusing herself in the playroom.  However, this time we would need to be in isolation during transplant and Olivia would be restricted from having contact with Sarah.  Sarah has been so happy since returning to Canberra and is absolutely loving school.  We feel that is so important for her to have a degree of normality in her life and for her to continue going to school and make friends in Canberra.  It looks as though our stay in Germany will be for approximately 3 months but we hope that during that time, Sarah will be able to visit us during the school holidays.  Whilst in Canberra, she will continue to stay with my parents so that she can enjoy attending school, ballet and swimming lessons. We are sure that she will be okay but it will break our hearts to leave without her!

We have tried to establish whether any haplo-identical stem cell transplants have been conducted on neuroblastoma patients in Australia.  Sydney Children’s Hospital have used haplo-identical transplants to treat leukaemia patients though not on a routine basis. Our discussions with some of the German doctors indicate to us that their transplant protocol is somewhat unique and unlike a conventional haplo transplant.  We are hoping that Olivia’s Australian oncologist will look into this procedure and the possibility of doing it here in Australia.  Unfortunately, the doctors here aren’t familiar with the German protocol and have been unable to comment on it which has been quite difficult for us in making our decision.  We are hoping that Olivia’s doctor will be speaking with the German team this week so that she will be able to inform us further about the procedure and guide us with our decision.

We have also contacted another hospital in the German town of Tubingen which is near Stuttgard.  They have performed approximately 30 haplo-identical transplants on relapsed neuroblastoma patients (but conduct 50 to 60 haplo transplants a year all up).  The team in Tubingen are extremely experienced in this procedure which opens up the possibility of travelling to Tubingen instead of Greifswald for the transplant.  The team at Tubingen conduct more haplo-identical stem cell transplants than anywhere else in the world.

We were very surprised to hear that the doctor suggested that there may already have been one haplo-identical stem cell transplant conducted in Australia, though he could not remember the doctor or hospital involved.  This certainly gives us something else to look into as a matter of urgency.

Olivia completed her 5th round of chemo two weeks ago.   On the whole, she has tolerated the chemo fairly well, though she does get quite nauseous and has a tendency to vomit.  She has only required one transfusion during the entire treatment.  Sadly, a lot of her beautiful curly hair has fallen out, though she has accepted this very well, as she does with most things.  One of the biggest challenges we’ve had is trying to get Olivia to swallow the massive chemo capsules every night while we’re in Sydney.  At the beginning of her treatment, she did really well and swallowed five capsules every night without much fuss at all.  However, swallowing the capsules has become increasingly difficult for her.  Sometimes she just feels too nauseas to take them but she has also developed a phobia which results in her becoming very upset and anxious to the point of vomiting when it comes time to taking the capsules.  We have tried everything to gently encourage her to take the medication but it can be a very frustrating experience for us all involved.

We will keep going with the current chemo regime whilst we wait for Olivia’s leg to heal and finalise our treatment plan.  Our original intension was to treat her leg with local radiation once the fracture fully healed, however, the radiation oncologist has advised us to wait for her leg to fully heal before embarking on radiation as it may cause more problems for her leg.  Whilst we are a little anxious about the possibility of the tumour returning to that site, we are fortunate that there is currently no evidence of disease, so we at least have the option of leaving it for now.

We have finally just received the results of Olivia’s biopsy.  We had hoped that her tumour would be slower growing, differentiated disease.  Unfortunately, this is not the case – she has a highly aggressive, very active disease.  We were devastated by this latest news, however, it does not change our treatment plan and options.

We are fortunate that we have been able to get Olivia into remission, though are now faced with the most difficult decision of our lives.  Sadly, there is no known cure for relapsed neuroblastoma so we cannot be sure what treatment will ultimately be the most beneficial for Olivia.  If we do nothing, then she will surely relapse again.  We have resolved to keep on fighting.  We will never give up on our beautiful girl.  There is always hope…hope is what gets us through each day.  Olivia is in remission and she still has a lot of fight left in her.  However, we need to make our decision very soon as this disease will not give us time.

The most frustrating thing about this whole experience is having to do all of the research myself without much guidance from specialists.  Whilst Olivia’s doctor has been supportive and understanding, we despair that with the number of clinical trials options available around the world (none of which we perfectly well understand carry any guarantees of survival) that the burden of adjudicating is left to be shouldered by the parents.  It’s probably too much to expect but it would certainly be a valuable resource to have an independent specialist who has a grasp of all open clinical trials and is prepared to say…’in Olivia’s case, on balance this is the trial that I recommend you should pursue’.

We are incredibly grateful to have our beautiful Olivia in our lives and are so proud of the way she accepts everything thrown her way.  In spite of her battles, she continues to amaze us with her incredible fighting spirit.  She doesn’t let anything get her down and continues to dance around and celebrate life despite the all of the treatment and a fractured femur!  We love you more than anything beautiful girl!!

I would also like to take this opportunity to pass on our deepest heartfelt thanks to our family and friends.  My parents have been unwavering in their support for our family.  They have taken such wonderful care of Sarah in our absence and have taken in our family whilst we’ve been in Canberra.  We don’t know what we would do without their incredible support. My dad has worked tirelessly on the Olivia Lambert Foundation and has continued the fundraising efforts to help support Olivia’s ongoing medical expenses.  He is also working towards changing public policy so that children like Olivia have access to financial support to participate in clinical trials overseas.  I should also mention that he has organised a charity Golf Day on Thursday, April 7 at Federal Golf Course.  A huge thanks goes to the main sponsor, Classic Constructions, Mix 106.3 and to all of the other sponsors of this event.

We are so fortunate to have such wonderful friends who have always been there for us.  We would like to extend our gratitude to the Burgmann staff and community, as well as to the general public for their continuing support.  We feel very lucky to be surrounded by such genuinely caring and compassionate people.  Thank you so much!

Rugged up at the Zoo

Kirsty here.  It’s been a while since the last update from me.  As you are all aware, it’s been an extraordinarily busy time for our family.  James has done the last couple of updates.

So much has happened over the last 3 months…it’s been a whirlwind!  The biggest thing to happen to us was, of course, the move to Germany for Olivia’s antibody treatment.   We could not have done this as soon as we did without the incredible kindness and generosity of family, friends, strangers and the Canberra community.  We have been deeply humbled and so lucky to have such amazing support.  We feel indebted to our supporters and really can’t find the words to express how incredibly grateful we are.  Your contribution is helping to give Olivia the chance at life she deserves.  We would love nothing more than to personally thank each and every individual who contributed in some way but unfortunately, this is not possible.  We would, however, like to make special mention of the team at Mix106.3, especially Lisa and Cam whose generosity and passion inspired the support of the Canberra community.  We were deeply touched by their commitment to raise the funds we needed.  A HUGE THANKS GOES OUT TO ALL OF OUR SUPPORTERS!

An Evening For Olivia was a huge success, raising $100,000 for the Olivia Lambert Foundation.   We would like to pass on a very special thanks to our wonderful friends Natasha Vanzetti and Gess Mazis for organising such a spectacular fundraising event.  We are also very grateful to a number of people who also worked behind the scenes to help make the night a success, as well as to all the wonderful businesses who donated goods or services to the auction.  Again, this tremendous fundraising effort will help to ease the financial burden of Olivia’s treatment in Germany.  Thanks also to everyone who attended.  We only wish we could’ve been there…sounds like it was an absolutely amazing evening!

We must also make mention of Canberra Removals who very generously donated their time to remove and store all of our furniture and belongings free of charge.  We really appreciate their wonderful support…thanks guys!

Last but not least I must thank all of my amazing family and friends.  They have been there for our family in more ways than one and I really don’t know what we would do without them.  I feel incredibly fortunate to have such wonderful friends.  They have been there for me when I have been in the pits of despair, given me a bloody good laugh when I’ve needed it and have done whatever they can to support my family and I love them for it!  As for my parents, their support over the years has been unwaivering…I owe much of my strength to them.  Nothing has ever been too much to ask and they have always been there to help alleviate the stress wherever they can.  We love you so much!  We are all so lucky to have you in our lives.

 It’s been such a long and draining seven years of battling cancer.  We hope, against all odds, that the antibody therapy is the miracle we have been searching for.  Unfortunately, we won’t know for some time but we have a great deal of faith in the Olivia’s German doctors who are neuroblastoma specialists.  We are not particularly religious but I feel that our prayers have been answered in the form of Professor Lode.  Although there are no guarantees, he is hopeful for Olivia and believes that she is a very good candidate for the treatment as her pre-treatment scans show she has a low disease burden.  We didn’t have that kind of hope in Australia.

The first round of treatment was extremely difficult for Olivia.  She commenced the first cycle with daily IL-2 (Interleukin 2) injections in her legs.  This drug helps to stimulate the body’s natural killer cells which is thought to help improve the effectiveness of the antibody infusion.  Olivia tolerated the injections themselves well, however, the drug is certainly not without side effects.  Its major side effects include high temperatures, flu-like symptoms and tiredness which virtually all patients experience.  Unfortunately, Olivia was one of them.  She did well for the first two days but on the third day, she spiked a temperature of over 39 degrees and this continued for the following two days.  The nurses managed this well with paracetamol or Nurofen. 

By Saturday morning, Olivia was free to leave the hospital for the weekend which was a lovely break.  We took the girls to Rugen Park which is like a mini theme park about an hour’s drive from Greifswald.  It had some fun little rides for kids including a mini rollercoaster.   It also had some miniature sculptures of various famous building from around the world including Sydney Opera House – they were really well done.  It was really hard trying to drag the girls home from that place…they loved it!  We enjoyed seeing them having so much fun!

We headed back to the hospital on Monday morning to continue with another five days of IL-2 injections plus the continuous antibody infusion.  They began the antibody infusion in the afternoon.  We had previously sat down with Professor Lode (Olivia’s German doctor) to discuss the treatment and its side effects.  However, I was not quite prepared for what poor Olivia experienced!  She had had a little afternoon nap at the time the antibodies had begun and she awoke with a slight pain in her back.  I just thought that she must have slept on it in a funny way and reassured her that it would probably improve in a little while.  Olivia decided she wanted to walk down to the playroom to be with the other kids.  Not long after getting there, the other Olivia (from Scotland), who began her treatment at the same time as our Olivia, began screaming in pain.  It was only shortly afterwards, our Olivia began doing the same thing.  Pain is one of the major side effects of the antibody therapy.  I then returned Olivia to her room while she continued to scream out in immense pain.  She was already on pain medication but required additional pain relief.  Over the next few hours, she needed three boluses of morphine but the pain didn’t seem to subside.  It turned out to be a very long night with poor Oli having very little sleep and I was feeling quite distressed having never seen her in so much pain.  It was truly horrible!

Olivia’s doctor had assured me earlier that evening and the next day that this was a normal side effect of the treatment and nothing unusual.   He also said that the treatment would be better tolerated in subsequent cycles.  Apparently, the first cycle is always, by far, the worst.  I guess this remains to be seen! 

The pain did continue in different parts of Olivia’s body and she did require a fairly high level of pain management.  However, thankfully, it was not quite as bad as it was on that first night.  Another major side effect of the treatment is itching.  Olivia had severe itching throughout the 10 days of antibodies but luckily it was managed reasonably well with antihistamine medication.

The scariest experience we had was at the end of the second week of treatment, Olivia had a seizure.  She hadn’t been herself all day and vomited a couple of times.  She was drifting in and out of sleep and generally just very tired.  We assumed this was all just part of the treatment as she had been very tired and sleepy the whole time.  Later in the evening, she fell asleep on a beanbag in the playroom so James and I decided to take her to bed.  James carried her down to her room but on the way there, she woke up but she was swaying in his arms and not responding to us when we spoke to her.  We thought that she was going to be sick.  She continued to roll her head around and had a vacant look in her eyes.  We got her back to her room but she still didn’t respond to me and she began to blank out.  I immediately called the nurse who, in turn, alerted the doctors who came straight away.  Before we knew it, we had about 4 or 5 doctors standing around her bedside.  They appeared a little panicky.  I was a mess as I didn’t know what was going on.  My first thought was that Olivia had gone into a coma.  Soon afterwards, the neurologist came to see her while another doctor was on the phone with one of Olivia’s treating doctors.  The neurologist then informed me that the EEG (test for brain function) she’d had earlier in the day showed significant brain disturbances and he suspected that she’d had a seizure.  I spoke with Olivia’s doctor on the phone who assured me that this was nothing to worry about and that it was one of the less common side effects of the treatment.  I have to say it would have been nice to know about the EEG result before the seizure as I can’t help but wonder if the doctors could’ve done something to prevent it. 

The doctors treated Olivia immediately by giving her Phenobarbital which acts to prevent any further seizures.  They also decided that it would be best for Olivia to spend the night in Intensive Care so that if she experienced any other problems the doctors and nurses could act quickly.  I was disappointed though when they told me that I couldn’t stay with her.  I ended up staying for a while before I went back to the other ward to get ready for bed.  It wasn’t long before Olivia started crying and asking for me, and it certainly didn’t help that none of the nurses on the ICU spoke English!!  Poor Oli…I returned to ICU, vowing never to leave her again, not even for a minute.  I ended up in the chair beside her bed and later I crammed myself into her bed – luckily the nurses didn’t ask me to leave this time as it just wouldn’t have happened.  Oli returned to the oncology ward the following morning and was feeling much better, thankfully.  It was such a huge scare and I hope we NEVER have to see her go through something like that again.  Later in the day, Olivia’s treating doctor came in to see her and again, assured us that subsequent rounds will be much better.  In fact, he told me ‘100% better’ – a big call…guess we’ll find out soon enough!

Olivia remained in hospital for another week.  She continued to have intermittent pain, as well as itching, fluid retention and a few other issues.  Most of this was managed fairly well with medication.  It was so good to finally leave on the Friday, knowing that we had just over 2 weeks before we had to return for round 2.  Mind you, I did wonder how on earth we would get Oli back into hospital for more treatment, given what she experienced in round 1!  We did have to return to the hospital during the two week break for check-ups but there was nothing to report.  As soon as the antibody treatment was ceased, she picked up straight away which was fantastic.  However, our break was not without medication, as she had to commence cis-retinoic acid (accutane) for the whole two weeks but she seemed to tolerate it reasonably well, apart from slightly sore dry skin (side effect of the drug).  She was only given half the dose as from our previous experience the full dose began causing serious skin issues for her (well, she has been on it for around 2 ½ years all up).

During our break, besides spending a few days in our luxury villa (not!), we decided to head off to Berlin for a few days.  It was soooo good to get away.  We took the train which is close to a three hour trip.  We spent our time doing a spot of shopping (we needed some winter woollies) and did a city bus tour on a double decker which took us around to all the places of interest.  It was a hop on, hop off tour so that worked out well for us with the girls.  We got to see some fabulous places.   Also, the city was buzzing as it was the 20th anniversary of the unification of Germany (when the wall came down) and it was Oktoberfest.  There were celebrations going on everywhere, not to mention a lot of beer swigging.  It was a fabulous atmosphere.  Undoubtedly, the highlight for the girls was the lady making giant bubbles in the park…we spent ages watching the girls chase them around and getting drenched in detergent when they popped!  We also discovered some festivities near Brandenburg Gate…there were so many bier stalls, food stalls and rides for the kids.  The girls loved it!  We also took the girls to the Berlin Zoo, which they really enjoyed.

I was really fascinated by the history of the city and spent quite some time in a small museum (while the girls occupied themselves with their DSI’s) reading up about the Nazi era, Hitler, Himmler, etc.  I was completely overwhelmed by it all at the end and felt quite emotional about it all.  We also got to see parts of the Berlin Wall that are left standing in various parts of the city.  That, too, was equally fascinating and it was amazing to read about how much the Germans had to fight for unification.

We all had such a fantastic time and it was just so good to be having some fun and to see the girls smile.  It was a much welcomed break.  Oh, I should point out that we also picked up a car in Berlin, which was sort of the point of the trip in the first place!  We ended up driving it back to Greifswald on the autobahn which is so incredibly quick – love it!  We spent the next few days just exploring our local area which is quite a lovely place.  We also discovered an indoor swimming park with a wave pool and waterslides, an absolute paradise for the girls, and only a half hour drive from our place.  I have to say I was quite surprised by liberal nature of the Germans, especially when a man, who was trying to assist James in using one of the lockers then proceeded to change into his swimmers in front of us.  Luckily, I managed to distract the girls as his bare butt was something no-one should have to see…lol. 

Olivia commenced the second round of her treatment last Monday.  Again, this started with IL2 injections for five days.  This time we were able to leave the hospital after the injections as the doctors felt that we could readily manage any high temperatures (a common side effect of the drug).  The biggest challenge was getting up early to go to hospital the next morning…the girls did not enjoy that.  Strangely enough, Olivia decided that she wanted to spend the first night in hospital despite our pleas with her to go home.  Luckily, she changed her mind the following day but we did still spend a lot of unnecessary time in the hospital…I think the girls enjoyed the social interaction with some of the other kids.  Unfortunately, Olivia did spike temperatures for about 3 days but we managed them well with some paracetamol.  We still managed to fit in a few bikes rides to the park to give us all some exercise and fresh air.

Olivia didn’t have any treatment over the weekend and returned to hospital on Monday to commence the antibody therapy, in conjunction with the IL2 injections.  Needless to say, I was really worried about what this next round of antibodies would bring us given that the first round was so traumatic.  I have to say, we have been very pleasantly surprised.  Although she’s given a cocktail of pain medications (morphine being one of them), Olivia has had very little pain to none at all and only some itching and fluid retention.  However, she did develop a very persistent cough a couple of days ago which has kept us all up at night.  Olivia seems to be holding up better than James and I at the moment despite the lack of sleep.

Olivia had a portable pump containing the antibodies attached to her yesterday.  It was great to say good bye to the pole with all of her other pumps.  She is also managing very well with minimal pain medication infusion at the moment, however, the nurses have been giving her paracetamol as a prophylaxis.  We should be allowed to leave hospital tomorrow, although the pump will remain until Thursday afternoon when the antibodies have finished.  We are very much looking forward to having a hospital and pump free break…I think it’s the only thing getting us through all of this.

The girls and I have made some friends whilst in hospital.  Madison (from England), as well as her mum Samantha, has been in Germany for 7 weeks, undergoing chemotherapy and we have really enjoyed their company while we have been here.   Unfortunately for us (but fortunately for them), we said good bye to Madison on Saturday as she travelled back to England to enjoy two weeks off treatment.  She will now only be returning every 3 weeks for one week at a time.  It looks as though we may not cross paths again for a while but we wish Maddi every success for the treatment and hope that she really enjoys spending time at home with her family and friends.  Hope to see you both again soon, we miss your ‘Little Princess’ accents and making up nicknames for all the doctors and nurses.

There is also another Olivia here, who is also 5 years old and started her treatment the same time as our Olivia.  She has the most gorgeous Scottish accent and often amuses us with her cute little sayings.  I doubt that anyone would describe our Australian accent as cute, particularly considering that our girls usually speak at twice the volume of everyone else.

We had originally planned to take Sarah back to Australia in late January, so that she could commence kindergarten at Burgmann.  This would involve me having to leave Olivia with James for about 3 weeks all up.  I really don’t want to have to leave Olivia and then in turn Sarah, so we are trying to convince Sarah to stay with us.  She keeps changing her mind – when we do fun things, she wants to stay, when she is reminded of fun things in Australia, she wants to go back.  Part of the reason that we are trying to persuade her to stay, is that she has coped really well overall with the sudden uprooting of our lives.   Luckily for us, she seems to make friends easily and gets along with both boys and girls alike and of different ages.  Though I do feel for her as she is a very active girl and being in the hospital makes this hard for her.  She welcomes any opportunity to be chased around by other kids or even James and I but this usually doesn’t happen in the hospital.

Sarah does miss our dog, Ellie, as we all do.  However, it is good to know that Ellie is getting well taken care of by my parents.  They have taken her down to the coast on a few occasions and she has enjoyed  playing with the other dogs on the beach and going for swims.  It seems that she has also been getting plenty of tummy rubs which she just loves.  She has even sent us a few very funny emails.   My Dad asked Sarah if they could keep her because, according to her emails, ‘Papa is sooooo good to me’.  He jokingly said that he would buy her a new puppy in exchange for Ellie when we get back.  Sarah sternly turned down his offer, however, she was quick to take up his offer of two puppies as she thought that was a pretty good deal.  Well, there is no way we’re giving up our beautiful girl.  We’ve since had a chat with Sarah, who somehow how has it in her head now that she is going to get Ellie back, plus a new puppy from my dad, lol.

Just to finally finish off, we are very much looking forward to a visit from my parents in December.  It’s looking as though we will be spending a white Christmas here in Greifswald.  I will be speaking to the doctors about delaying Olivia’s treatment for a week so that she can enjoy Christmas without having to worry about any treatment and to enjoy some time with my parents.  However, it’s looking like her treatment (4th round) will commence on the 27th.  We will also be due for restaging scans around that time.