Tuesday, 27 January 2015

Jasmine's Journey - 3 years

I put down the phone and I feel exhausted.  It's a mid-week afternoon, the same as any other.  I'm sipping tea and folding laundry and there are paints on the counter with artwork from small hands drying all around.  Ten minutes earlier I didn't have this butterfly feeling.  The phone rang and the long-term follow up receptionist tells me that Jasmine has an audiology appointment coming up.  And that's just fine.  Jasmine likes going to audiology.  It's a game and she likes to play it.  Then she says we'll see Dr. Hukin in the afternoon.  And from nowhere we're back in the realms of oncology.  "Oh and endocrinology is coming up," she adds.  Then almost talking to herself she says, "wait, that won't work, because you'll need to see Dr. Hukin after the MRI and that isn't scheduled for a couple of weeks."  Then suddenly I'm holding my breath because somehow the whole MRI thing wasn't on my radar yet.  I hadn't been thinking of it - which is a good thing.  But I guess I usually start thinking about it round about the due date and suddenly here we are, and we've leapt from the everything's fine audiology to the everything's not so fine MRI scenario.
We are coming up on 3 years out from diagnosis for Jasmine.  It's a really big deal.  But it never ceases to amaze me how sometimes it's as though no time has passed at all, and the tears will prick the back of my eyelids and I'll blink them away.  And it grieves me because something as ordinary as an MRI scan can make me feel like I'm losing her - all, over, again.
Thursday morning I will go to work, and Jasmine will travel with her Dad to the hospital for her MRI.  I don't know if it's worse to go, or not to go.  It's really a day of anxiety which ever way you cut it.  I will take Finn to school and we'll carry on with the normal stuff that days are made of.  While I do that, a picture will be built on a screen and my baby girl will lie in that machine and I will want to hold her - just hold her.
The rest of the day passes and then I cry in the shower.  It's where we cry so our children won't see then we paint the smile and the "mum face" back on for bedtime routine and I tell Jas she is off to audiology this week.  Big smiles - she loves her audiology appointment.  I start to wonder when to mention the MRI to her.  We have learned that too soon and the anxiety for her builds.  Too late and the meltdown and panic about it overwhelms her.  I still haven't got it right.  Then the decision is taken from me as the hospital calls and she overhears my side of the conversation.
"Do I have an MRI soon?"  she asks.  And I reply soon, but don't say when.  She's not satisfied with that and asks "when" over and over.  I tell her it's at the end of the month.  And she still isn't satisfied. What date?  What day?  Until finally she knows.    A while later she wants to know who will take her.    A while later still, she appears from upstairs long after bedtime with tears.  I pull her on to my lap and hold her and ask what's troubling her.
But here's the remarkable thing.  The only part of the MRI that troubles her is the IV.  Three months of surgery and treatment and a following 3 years of maintenance appointments have left her needle phobic.  And I smile to myself at this wonder girl who worries about the scratch of a needle, while I worry about a silver shadow on a screen.  She is amazing.  And I reassure her no needles.  We'll use the mask, she'll be asleep when they remove the IV.  She won't feel a thing.  She is reassured and goes back to bed.
I think about all Jasmine has endured on her journey.  How cancer came to our home and ripped our lives and family apart.  How we have grieved.  How we have prayed and hoped.  How we have watched while treatment has broken her body, then watched as she made slow progress recovering. I think about the anxiety that comes with every appointment, the fear that this disease will come and wreak havoc with my family again.  I think about how far Jasmine has come, how much she has accomplished, how she is like every other 8 year old in her class.  I think about her warrior brother and how he's overcome his fears of losing his little sister.  How he has watched her at her worse and hidden from her pain at times and at others let her put her head on his lap to watch tv together when she's been too tired or sick to sit.  I think about my marriage - the grand canyon - how we have been so separate and far apart and isolated unsure how to breach this chasm between us so we've travelled on opposites sides for a time.  I think about how we've built a bridge to find each other again.
And I think about that email I sent to the family about to leave for Boston to begin proton beam radiation.  Forced to leave their home and at the beginning of their 5 year old daughter's journey.  I wanted to go with that mama and hold her hand.  I wanted to hold her like I held Jasmine, and tell her it's alright, take her to all her appointments until she knows the team there, find her a place to stay.  It's what I wanted to do, but how do you wrap all that up in an email or phone call?  So I tell her about Boston and that going there is going to be OK.
Jasmine's MRI will happen Thursday, then we wait a week for results.  We wait and wonder whether it's clear.  And I realize that we keep on putting ourselves through this scanxiety because if it's clear, it amounts to someone holding me.  Someone telling me it's OK, that's there's nothing to fear and for now, it will be alright.

Friday, 16 January 2015


Hey there,

It's been a while since I jumped on board, but it's Friday so here's my link up with the flash mob of writers who gather weekly and write, without worrying whether it's just right, we just write for five minutes.  This week Kate has prompted us with "Send"

When I send this to you, know that I would rather be knocking on your door.  When I send this to you, know that though the words poured out and flowed through ink to paper, that I would rather have poured out my heart as we poured out the tea.  When I send this to you, know that I thought about you and as my hand ached writing the words - (oh yes, the craft of handwriting makes my hand ache these days as the techno typing world takes over - a hand written letter is a rarity and joy indeed!) - as my hand ached, my heart ached with the not seeing you for all this time.  I will wrap up my news in an envelope and send it to you, and it's written and delivered with love.  But know this - I would rather be sealing myself in an envelope and have the post deliver me to your doorstep, where the tangible real of some moments with some shared life with you, would mean the world to me.