And it begins...

I'm proud of my peachdom.  I watch the sun rise over the hills and look to the horizon.  I have my beautiful daughter stay with me whenever I can have her :)  I have my whole family live with me at the moment too!  That's mum, dad, sister, her husband and 3 kids!  Could Peachdom get any peachy-er??

But now something threatens to tear my peachful existence apart.  My beautiful girl Charlotte was diagnosed on Friday 28 September 2012 with Diffuse Intrinsic Pontine Glioma - a very rare and aggressive tumour that attacks the brain stem.


This desease is a Central Nervous System tumor, as it is wrapped around the bundle of nerves in her central nervous system.  This is the part that sends the signals from the brain through the neck down to the spinal cord.  It controls a lot of major functions including breathing, movement, etc.  We have had numerous meetings with Charlotte's team at PMH and also discovered information ourselves about the tumor.  The major points are:

• This type of tumor can't be operated on, as it is too risky in the position it is in, where it controls the major functions of the body.
• It is normally treated through radiotherapy treatment.  This will give the patient on average another 12 months, but it depends on each person as to the exact time.  Radiotherapy can't be repeated, as it is an exact treatment and exposes the body to extreme radiation.  The radiotherapy treatment shrinks the tumor.  
• The tumor cells grow again once the radiation therapy wears off.
• Chemotherapy can be given in conjunction to the radiation therapy. 
• The tumor can't be biopsied to establish how long it has been there or what stage it is at when diagnosed, due to its position. 
• It is a very aggressive and fast growing tumor.
• Nobody has survived this tumor yet unfortunately.
• Only approximately 6 children per year in WA are diagnosed with this particular tumor and about 200 worldwide.  Charlotte is the sixth child in WA this year.
• There is no explanation as to why some people have this tumor.

 Charlotte has been very lucky for a number of reasons.  She was brought in before the tumor had affected her to the point where she couldn't walk unassisted, as is the majority of cases presented.  A lot of children are brought to hosiptal already in a wheelchair. Charlotte's tumor is very large - 4.5cms diameter, which takes up a large portion of her skull when you see it on the scans.  However, it appears that she has a large skull which has accommodated the tumor quite well so far.  They can see that the bones in her skull have grown out slightly where the tumor has grown.  She has been able to join a clinical trial for the chemotherapy drug, Vorinostat.  The trial is in its second phase, which means in the first phase they have calculated the safest and most effective dose to give patients without as many or as severe side effects.  Doctors are hoping that this drug will slow down the regrowth of the tumor and in the best case scenario, may even prevent it from growing back.  So there is a little bit of hope with being part of the clinical trial.  They have had mixed results so far, but it is only a very new trial started this year. 

Charlotte has been on steroids since being admitted to hospital.  She is taking four steroids per day, plus two antacid type tablets to help her stomach cope with the steroids.  She also has eye drops four times per day plus once about midnight, as her left eye doesn't close completely now.  The eye drops prevent her eye drying out and getting itchy.  The steroids stop the symptoms of the tumor showing so much and prevent further symptoms showing.  They are hoping to gradually take her off the steroids now she has started radiotherapy treatment.  Depending on how well the treatment goes, she may be able to stop the eye drops as well.  Charlotte has taken all of her medication and gone through all of the machines and procedures very bravely and is showing just how strong she is for such a little girl.  She obviously doesn't like doing any of it, but I have explained to her how important every step is and she has taken it all in her stride and done what is asked of her.  The steroids have a lot of side effects as well, which she has most of.  She is constantly hungry and eating lots, doesn't sleep so well at night and is very tired during the day, a little bit of mood swings and has the puffy cheeks and a little tummy (not that you can really notice the little tummy as she was so tiny to start with!). 

Charlotte's team at PMH were very worried about us living nearly an hour and a half drive from the hospital and recommended we move closer to the hospital at least while she is undergoing radiotherapy treatment and possibly longer, depending on how she goes.  If something does go wrong, like a fever in the middle of the night, it is too long before treatment can be given.  As the immune system is compromised, she will be more susceptible to infections and there are a lot of side effects of both the radiotherapy and the chemotherapy.  Kevin and I are staying with friends and family on the nights where each of us have Charlotte and I am lucky enough to have good friends and neighbours to help with my animals when I'm not at home.  Hopefully we can all move back to our normal homes very soon, asCharlotte has already got upset about leaving her dogs and alpacas behind.  She will visit them lots though. 

If Charlotte is not too tired from the treatment, she is able to still go to school and dancing, etc, like she normally would.  It all depends on how her body reacts to the treatment and how she copes with all the driving back and forth.  Her dance concert is just over a month away, so it would be exciting for her to still be able to do that this year.  Its always best to try to keep to the normal routine as much as possible. 

Two radiotherapy treatments have been done and two lots of chemo.  Treatment is done once a day every weekday for six weeks at SCGH.  The treatment itself only takes about 5 minutes and she has the same staff assisting her each time.  They are all very nice and she already trusts them and likes them.  They make it as much fun as you can have doing this sort of thing with lots of stickers and rewards, etc.  We also see her team at PMH once a week where they check all her vital signs and make sure everything is going ok, like her blood count, weight, etc.  The chemo drug is a liquid taken by syringe in her mouth about an hour or two before her treatment.  So far so good with everything. 

We are all going ok so far, have our good days and bad days, but just taking each day as it comes and trying to give Charlotte as much fun as possible.  She is getting lots of attention, presents, treats, etc at the moment.  All medical treatment so far and in the foreseeable future is covered by Medicare, so financially everything is ok.  We don't need any financial assistance for the moment and will ask for help if this changes, of course.  We are both still able to work part time for now and will see what happens in the future.  We will be taking Charlotte on a holiday when she is well enough and doesn't need to be right near the hospital.  There are also a lot of different charities and foundations that fundraise for childrens cancers and we have been given their contact details and staff will explain in more detail later on, once the treatment is finished, what sorts of things can be arranged.  We will ask for help when we need it, so thank you to everyone who has offered their help and support. 


I have watched my princess turn from a high energy, dancing, monkey bar swinging bundle of joy to a fatigued, often sad little girl.

In our time together we will treat her like the princess she is.  We already do, but now we squeeze a lifetime of experience into a short window.