Emily's Journey

Hi everyone.

Just thought I’d do a blog update as a lot of people have been concerned as to why Emily has been away from school for the last couple of weeks. Thanks for your your texts. Apologies if I have been unable to reply.

Over the past two weeks Em has been having random pains in her back, legs and arms and spiking high temperatures. She is a terrible colour too. I am unsure as to whether it is prolonged flu or the cancer (I suspect the latter if my instincts are correct, and the likelihood of it being cancer progression is obviously very high given that she did relapse 5 months ago, and her symptoms mimic those she had prior to her initial diagnosis in 2010, just not as severe at this stage thankfully!). I will make sure she never feel the severity of that pain again!

Everything is being very well managed at home with just Nurofen and Paracetamol at this stage, and we are not requiring any help from the palliative care nurses other than to touch base occasionally over the phone etc. The nurses are great and trust my judgements which is really appreciated. Eating is a bit of a challenge but she manages decent amounts when her temp is stable. Cancer parents become obsessed with their kids dietary intakes as nourishing our kids becomes our only control really.

So basically we are just taking each day with Em and will see how this all pans out. Please know that Em is NOT bed ridden or anything like that and there is absolutely no urgency for us to have any help from you lovely folk, but know that we will definitely put something on the blog when the time comes that we may need help with meals etc (thanks so much for the recent offers though). We are just trying to be as normal as possible and fit in fun things and school when Emily is up to it. Planning things in advance is a luxury we don’t have as we have no idea what is around the corner and will continue to have no idea as we have no intentions of going near a hospital to be told what is in her body and whether or not she has weeks/months to live etc. Pain management and happy meaningful moments is all that Gary and I are interested in for Emily at the moment. She has had many adventures and has been living life to the full over the last few months, but for now I am happy for her to be hanging out with people she desires to be around when she is up to it. Her brothers and sisters are also a priority to Gary and I and maintaining the balance between Emily’s needs and the other kids needs is a constant challenge. Thanks again to those of you who over the past few months have take the time to give Emily loads of awesome experiences while she has been feeling great.

Emily is in great spirits at the moment and doesn’t outwardly link her pain to cancer. And without scanning Emily I really have no definitive answers for her should she ask why she is in pain??? I will probably say,  ” Whatever is causing your pain will be managed so that you are not in pain.” And I suspect she’ll say, ” It’s probably stupid cancer ” and I will probably agree. We will answer any questions as honestly as we can…..

For now everything is under control …but my mental strength and tolerance levels are constantly being challenged!  Plus I do get sick of talking about cancer all the time to be honest.

Thank goodness Gary and I have this new baby to look forward to in ten weeks. Emily and the kids are equally excited though Emily did talk to my tummy the other day and say “if you are a boy in there, can you please turn into a girl and if you do I’ll give you ALL my toys” …. It will so be a boy… ha ha

We will update the blog with any major changes and I will text friends to organise play dates and catch ups in due course. Em is happy and her pain is managed so we will just take it one day at a time.

Kath