There is something about watching your child suffer... the experience is indescribable. To know that your sweet, innocent baby is being forced to endure so much and you are powerless to help her in any way...
I guess this week has been a week of reflection for me. The changes in Nicola since her diagnosis have been creeping up on us slowly, and we have been so immersed in her little world that we haven't seen the changes until we were slapped in the face with a great big 'once upon a time' moment.
A few days ago I was looking for something on my computer, and I found this:
Nicola on her 3rd birthday in September 2011. She looked so bright and healthy and happy and her cheeks were so chubby.
Then everything changed. I can't describe how it changed, because words just won't do justice to her journey... the only way I can really do this is to show you the last 4 months of her life.
This was the first sign we had that there was something wrong. Her poor little tummy got so bloated and nothing we did seemed to help. She was in so much pain, she just couldn't seem to be comfortable no matter what we did. It came up in the space of about a week. Then a week later we had our answer. They found the tumor.
They admitted her into hospital straight away and started giving her chemotherapy and they had her in IV fluids which left her fluid overloaded. She gained 3kg in less than a week. This is a child who's starting weight was barely 10kg, she gained one third of her body weight.
But then we got a brief stint at home and she seemed to really pick up... she was bright and happy, with the help of some incredibly strong drugs we got back the baby that had been missing since before this whole journey started.
And then radiation started.
The decline in her health since the radiation started has been unbelievable. She looks so emaciated and so drawn... but she hasn't actually lost any weight at all. I don't know how to describe it... but they say a picture is worth a thousand words, right??
And then, finally, today it really struck me.
In the past week we have seen a massive increase in her pain levels again, to the point that yesterday we needed to engage the pain team again who increased her pain medications. She is now on a total of 72mg of assorted opioids a day just to help her get through each day. She is on 3 different types of anti nausea medication, anit histamines to stop the side effects of the opioids, antibiotics to prevent pneumonia caused by chemotherapy, anti anxiety drugs to help relax her enough to cope with every day, and a whole host of other assorted drugs to help with various things.
Yet, just to look at her, seeing the way she looks now, hurts my heart in a way that I never imagined was possible.
I guess until I went through my computer I never really realised how sick my baby really is. Every day we just get up and deal with what needs to be dealt with . We manage her pain as best we can, we manage her nausea as best we can, we manage her feeds as best we can and we try to keep her as comfortable and as happy as possible...
Yet now, I look at her, and I can't help but wonder where my beautiful little happy girl is, and if I will ever see her again. Her beautiful little curls are gone, her smile is gone, her chubby cheeks are gone... and I don't know what to do to bring them back again.