Emily's Journey

Hi everyone,

Emily seems pretty settled at the moment and seems to be taking everything in her stride. She has the occasional melt down but she is more than entitled to those.  Too tired for school but seems very content just having nice times at home with her family. Emily is still playing with her toys, very chatty at times and reading lots of books.  She has the occasional burst of energy which is nice to see.

The pattern lately seems to be that she has a REALLY bad day pain wise followed by a couple of good days.  So we roll with the punches, adjust medications where necessary and take each day as it comes.  We can’t plan much, but what we are able to plan is dictated by her needs on the day.  For example, yesterday she was well enough for me to leave her with Mum so I could take Jack to swimming lessons.  I left her with the medicines she may need while I was gone for a couple of hours. It was nice to spend some one on one time with Jack.

The tumors on her head (there are about ten or so now, varying in sizes) are still giving her grief now and again.  She calls them her lymph nodes so I had to tell her today that the lumps were in fact Neuroblastoma tumors.  She said to me “Does that mean they will turn into a brain tumor?”  I said calmly,  “I have no idea what they will do Emily”.   Emily then reassured herself that they were on top of her skull so that wasn’t so bad!  She really is amazing …

Not much else to report, other than this journey sucks, and even when Emily is having ‘good’ days it still sucks because having good days does not mean she is getting better… A tough pill to swallow.

Gary and I would like to thank everyone again for the ongoing support.  Fundraising (for our family and charities) , meals etc are all so appreciated and help so much.  We can’t thank you all individually but please know we really appreciate each and every one of you. Thanks also for texting or ringing first before coming over.  Unannounced visits just do not work for many reasons.

I have a lot of people requesting play dates/time with Emily and their kids which is very kind but super hard to organise :( Due to the unpredictability of all this I have to wing things on the day, so I will text people on the day if she is up to it and if you can squeeze her in then that is awesome.  Emily knows her capabilities so I will let her initiate these things.  She won’t be having sleep overs anymore as we may need the district nurses to come out during the night and would not want to put that burden on anyone, plus I would just rather her be at home with us at night time.  Just so hard to make plans which is a very frustrating aspect of this cancer journey. Making plans is such a normal aspect of life that we take for granted.

The new baby will be here soon so I am trying to get things in place (medication wise) for when I have a couple of days rest in hospital. Nice to know the district nurses are available 24/7 should they need to help with pain relief.   Will be hard to be away from Emily though.  Luckily she has such a switched on Dad who will know instinctively what to do :)

Kath