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.
