A Quick Update

Hi, James here.

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

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

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

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

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

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

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

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

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

That is pretty much everything.

 

4 thoughts on “A Quick Update”

  1. Hi guys, I’ve been following Olivias story for about three years now…. And I was wondering if you’ve ever heard of a Dr Bursynski???? Here is his website… He’s treating cancer with antineuroplastigens, and he’s had some great results…
    Here is his website
    http://www.burzynskiclinic.com/

    Here is a link to his movie…. It shows the 20 year fight he’s been having as the FDA have been actively blocking his treatment… Its an amazing watch… Please watch it…I sat rivetted for 1.5 hours… My father is a prostate cancer survivor…So I’ve always been looking for cancer treatments….

    http://www.youtube.com/watch?v=H0ibsoqjPac&list=FLvazuV6xiOzV2-tI74dCO-A&index=1&feature=plpp

    This is not a miracle…He has had some great success, Just very smart science… Please watch it for yourselves and make an informed decision.. I would never assume that all avenues for Olivia have not be looked into, but I found this very, very interesting..

    Kindest regards,

    Tiffany Noy

  2. Hello, I don’t know if this would be helpful to Olivia, it’s an extract from a recent article which appeared in The Telegraph here in the UK:

    “Neuroblastoma (a cancer of abnormally developing nerve cells in very young children) and medulloblastoma (a brain tumour found mostly in children) are among a whole spectrum of paediatric conditions on which Sparks is supporting work. A three-year research project (one of three) by UCL’s Institute of Child Health in London – costing £161,536 – has found that green tea catechins and red pepper capsaicin combined are highly toxic to neuroblastoma cells. Perhaps one day chemotherapy will be a thing of the past.”

    The Institute of Child Health have a website at http://www.ucl.ac.uk/ich/homepage.

    It struck me that this could, perhaps, be something that could be acted upon but you are obviously in a much better position to access the information than I am, particularly in relation to Olivia.

    Very best wishes for the future.

    Clive Bilton.

  3. Thank you for the update, we think of you all often. Can’t even begin to imagine your exhaustion on every level…So lovely to hear that Olivia had a chance to enjoy some of her activities with her friends 🙂

  4. Just dropped by to see how you were all travelling, sending you all our love and strength xxxx Fiona, Jason, Kody, Imogen, Ashton and Nicholas – The Holmes Gang xxxxx

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