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Pull It Together, I Hadn’t Been Here For A While

April 18, 2016… our lives changed forever.

While running a reading lesson for my son who at the time was on the Pathway for his Autism Diagnosis, his little sister was home from nursery and being a pain in my neck, distracting us.  I noticed her eyes were yellow-ish.  I asked my son and my daughter to stand together shoulder to shoulder so that I could compare– and her eyes were yellow-ish.  I phoned my husband and he came home and we phoned 111 to figure out what we needed to do and they referred us to A&E.

Before where I had been getting started on my son’s Autism Diagnosis, we were suddenly saddled with a much more desperate situation with my daughter’s health.

And so began our journey into what we at first was told was a choledochal cyst for my daughter, but then ended up as anaplastic embryonal rhabdomyosarcoma, a rare and deadly aggressive childhood cancer that required 9 months of intensive treatment thereafter. [ Photo Journey ]

Where before, I wanted to be this force for good and for pushing forward for the rights and needs of potentially Autistic children, such as my son, I was suddenly saddled with my daughter’s very deadly illness.

All this time later, I’m still trying to find my feet.  And no one would blame me for that.

I’ve done a lot of Childhood Cancer Advocacy since… obviously.  I’ve tried to balance Autism Advocacy as well, but it seems like childhood cancer’s given a bigger platform and then my son’s not one to put up with having his photo taken and put in the press.  And I remain very big on respecting my children’s sense of autonomy and agency.  If only the press (and other agencies) were totally happy with my word on what he says he needs, as he won’t talk to strangers.

We’re in the public domain now because of a lot of the advocacy we’ve been doing.  I’m Jennifer Calland.  Victoria Calland is my daughter.  She appeared earlier this year on Channel4’s Secret Life of 4 Year Olds [ Episode 1 / Episode 2 ] and did us all very proud.  Her older brother Arthur was diagnosed with Autism this past summer.

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Victoria’s been given this great big platform for pushing forward the needs of children with cancer.  The need is indeed very dire.  We’ve been blessed with given some platform with CLIC Sargent and with Make A Wish UK, alongside of Secret Life. (Chris Lucas Trust also deserves your attention as its a charity that funds research on the sort of cancer Victoria had in particular!) .

But then the more complex, slow-burn problem we tackle is… what about Arthur?

… What about Arthur…?

Seems like the slow-burn… what about Arthur…?

The un-sung hero in this story– what about Arthur…?  He showed much more flexibility than what we could have originally given him credit for when the need was real.  But then again, he had no choice when he was left by himself with his grandparents while Mommy and Daddy saw to his sister on hospital wards that were unfit for a child like him.  Not knowing when Mommy or Daddy would be back.  Not fully understanding that he wouldn’t get sick like his sister was sick.  These are things he’ll be carrying forward with him.

In the photo above, he’s wearing the Marks & Spencers trousers as he won’t tolerate any other trousers.  He had a hoodie on and this very rare instance, he’s allowing himself to be photographed without wearing his hat nor his hoodie.  Nevermind all of the nuances in his personality that we learned about in having to constantly test Arthur’s limits while his little sister endured treatment that only might kill her against a disease that certainly would kill her.

Just prior to this photo being taken, the photographer tells me, “It looks like you’re restraining him!” and I respond back, “Well, that’s because I am!”  Arthur didn’t know what to do in that moment even though we all instructed him.  Victoria was doing her part in curling in and smiling.  All that Arthur knew was shouting and flailing.  He’s a handsome boy, he looks so well put together.  He’ll be 7 in February.  He doesn’t act like a 7 year old and that breaks my heart.

And I gotta figure out how to put my heart back together after what Victoria’s endured and she’s not even out of the woods yet as we’re pushing for all of the right scans to make sure cancer hasn’t returned.  Oh yah, and what about Arthur…?

He’s the unsung hero.  He knows the word, “cancer” and knows that it can mean “death” and he’s often been scared that he’ll catch it in spite of everything I’ve done to explain otherwise.

What about Arthur…?

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