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!
