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. Whilst 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. Whilst there is no stand out emerging treatment, we have discovered a few treatments that we need to carefully look into. We have always had 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 feel 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 be 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 new 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 and 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 has 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 for now, we 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.
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.
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.
After deciding to bring forward our departure date, we embarked on a week and a half of absolute mayhem, packing our house and arranging everything for Germany. We had a good flight over arrived in Germany just over a week ago, and commenced Olivia’s scans the next day. We are still waiting on the final results from the bone marrow aspirate, though are very relieved to say that the cancer does not appear to have spread since her relapse. The Oncologist here has indicated that in her current state, Olivia is a good candidate for the Immunotherapy treatment. This confirms to us that we made the right decision in getting her here as soon as we could.
Greifswald is quite a nice little town and despite some language difficulties we are all settling into our new “home” and coping relatively well so far. Olivia has just completed the second day of her treatment and has so far tolerated it quite well. She is still very happy and active and is very accepting of what we have to do to give her the best chance of beating her cancer.
We continue to be amazed by the amount of support that we have received from the public. Silly Socks Day last week was a huge success, and Mix 106.3 and the Canberra Times have been instrumental in promoting the fundraising activities. We are deeply disappointed that we won’t be at the fundraising dinner on the 11th Sept, though are thrilled that the dinner has been a sell-out. We are confident that the money raised will enable us to access the best possible medical treatment for Olivia and help her fight her battle against the dreaded disease.
We apologise that we have not been able to personally thank everyone who has donated. For many people, we simply haven’t been provided sufficient details to contact them. For others, we hope to respond to in the near future, once we are more settled here. Rest assured that every cent donated is greatly appreciated.