Emily's Journey

As 2011 draws to an end I thought I would update ‘Emily’s Journey’ and reflect on this part of the cancer journey… I call it the ‘normal/hopeful/fearful phase’ …. a bittersweet stage that evokes many emotions and challenges your inner strength. I am generally a ‘glass half full’ kind of person so most of the time I am hopeful, however lately I have been struggling with all this cancer business. It never goes away, regardless of how well your child is doing. why?? Because you worry about other children! The bonds you form with other families in the hospital are difficult to describe unless you have experienced it, and when you hear of kids , who endured treatment alongside Emily, that have since relapsed or passed away it kicks you in the guts and you share some of the parents’ anguish and devastation. Obviously I don’t know what it is like to lose a child.. but man were we close. That kick in the guts feeling is then followed by the survivor guilt you experience when the families reliving this nightmare ask how Emily is doing and you say “Em is great.” Don’t get me wrong, I am so so grateful that Emily is doing well, it is just hard because during treatment we all had the same goal… to get our kids into remission and keep them that way, then all of a sudden that favourite word remission becomes relapse or terminally ill for some families…. It is for this reason that I have been reluctant to update Emily’s blog, but today it dawned on me that people may actually WANT to know that Emily is doing well and who was I to not let the people that have supported us so much know that she is doing well and remains cancer free. If Emily relapses ( heaven forbid ) I would want to know that other kids are beating the dreaded “C”. No one begrudges a healthy child right?? I certainly wouldn’t.

So here goes … Emily’s 2011…. school full time with an amazing class and teacher, touch rugby on Tuesdays, swimming lessons on Thursdays, Kapa Haka group at school, sleep overs, birthday parties etc etc. Oh and she got her ears pierced! Typical 8 year old activities. Amazing. Emily received a certificate in school assembly that was awarded for ‘strength, persistence and excellence following an extended absence from school’. This pretty much sums up the head space she is in. She is strong and doesn’t dwell on the events of 2010. The word cancer, or poor me is pretty much absent from her vocabulary, however the empathy she gained from her experiences is evident. I am so proud of Emily’s achievements this year and equally as proud of my other kids. Em will be attending Camp Quality at Living Springs for a week in Jan 2012! She is so excited! She deserves it! Medically Emily continues to do well also. Having just the one kidney or walking on her tip toes hasn’t held her back from anything. Em continues to get physio for her tip toe walking and will commence a re-immunisation schedule in the near future. The chemo wiped out all the immunisations she has had since she was born so she has to have them all again. She has put on 6 kgs since finishing treatment in Feb, and now weighs in at 25kgs! With regards to scans to check for relapse, Emily continues to have 3 monthly scans until Feb 2012, then she will change to 6 monthly scans. Her chest/abdomen/pelvis scan in December was clear thankfully. I never tell Emily the result or make a big deal out of it. She never asks and a scan is just another procedure to her. My scanxiety levels were the worst thus far in Dec as Emily was having leg pains (which in hind sight would’ve been from touch rugby). Difficult not to worry about every niggle they have though. The uncertainty is mental torture, but all you can do is be hopeful and enjoy every day that they are well. I could be worrying obsessively over Em relapsing and meanwhile (again heaven forbid) something could happen to Jack, Charlotte or Luke. The “what if’s??” can do your head in… if you let them. Most days I choose not to let them.. but I am human, so I am allowed to be fearful at times. So that is where Emily and I are at at this stage if the journey. I am hoping for a cancer free/ normal/hopeful/sometimes fearful 2012. I will channel some energy into productive things like fundraising for www.chaseafteracure.com., enjoying my healthy kids, my family, and my friends ( because I deserve to ) and keep those who have lost ( or are battling to keep ) their precious kids in my thoughts, and be there for them if they need me!! Life goes on and I need to live it….

Kath