Later today we get the results of Caroline’s end of treatment MRI scan along with yesterday’s CT scan results. The MRI determines the extent to which the initial tumour has been destroyed, the CT checks for spread to the lungs (as both chemo and radiotherapy can cause spread due to the way they break down the tumour to kill it).
Caroline’s Rhabdomysosarcoma is parameningeal i.e. in her head cavity; not in the brain but millimetres away according to earlier scans, affecting the left ear and various nerves in the area.
In another era this particular lump would be fatal. It was already impeding Caroline’s throat by 30% on diagnosis.
In some countries now this lump would be fatal. It was growing so fast that her voice audibly degenerated daily in the pre-diagnosis hospital week during tests and biopsy as the tumour was either sitting on/around or eating away at the nerves that serve her tongue and vocal chords. It has also caused some wasting of her left shoulder muscles which should be rectifiable with physio or ‘a little more concentration on her part’ as it’s a neurological side effect.
And in America, in 2017, for those without medical insurance to get the right treatment, it could be fatal. In Britain we don’t know how lucky we are to have the NHS – more on that in a later post.
Yet through all this incomprehensible turmoil, Caroline has maintained the most incredible attitude and positivity. Even in the darkest times in America she had a smile most of the time, and she made use of every tiny amount of energy to see and do some amazing things.
Our stay in America for proton beam radiotherapy included without doubt some of the lowest, darkest times of all our lives. An utter nightmare. Yet at other times, seemingly inexplicably, it felt like the best holiday we have ever had, a phrase I still find incongruous with the rest of the experience but we really did some cool and fun things in between the nightmares.
These photos show some of the incredible things Caroline has done since her diagnosis.
She is currently so full of joy and intermittent energy that it’s hard to believe she has (had?) cancer.
She joined Cubs this term and went back to dancing lessons. She still can’t swim because of the central line but was recently at the play park with friends and apparently managed to stay on monkey bars far longer than anyone else, showing an inspiring strength and stamina! It sums her up really.
We haven’t seen this aspect of her personality for over 18 months so all the signs point to healing.
We’re praying, wishing and hoping for a complete recovery, and sending love and prayers to every one of you reading this post and supporting Caroline on her journey.
More of Caroline’s cancer journey is here at Caroline’s Rainbow.
And check out her blogs (written by her teddy Otto) in our Children’s Writing pages; Caroline and Me Kick Cancer.