The Calm Before the Storm

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. 


Leave a Reply