White Flag

THE WHITE FLAG

I've always noticed that when people talk about cancer, it's spoken to in terms of wars or fights.  People "fight" cancer, they "beat" it or they "succumb after a courageous battle".  Before Stella got sick, when I thought about childhood cancer pictures of cute little smiling bald-faced children filled my brain.  Although Aimee works for an organization that runs camps for children with cancer, my knowledge of it was actually quite minimal.  What did I need to know, really?  It was all sad stuff.  i just liked hearing that something like 85% of childhood cancers nowadays are completely curable.  I personally know lots of people who had cancer as kids, are are completely fine now.  You do chemotherapy or radiation and yeah, it sucks, but then everything's fine, right?

So, when Stella was diagnosed with DIPG and we were told it is an inoperable, fatal cancer I was stunned.  What were we supposed to "fight" if the enemy was going to win regardless?  Our options were explained to us during a meeting in a sterile white room with a Neuro-oncologist and some family and friends present.  The only option available, the Doctor said calmly, was to submit Stella to a six-week radiation treatment where she would need to be sedated (due to her age) everyday for six weeks.  At the end of the six weeks we could expect what the Doctor described as a "honeymoon period" where her symptoms would all but disappear for anywhere from 1-12 months, although that doesn't happen in all cases.  But, at the end of that time, the cancer would come back and it would quickly and heartlessly kill her anyway.  There is no cure.  There is no hope.  It's like being kicked in the soul hearing these words, kicked so hard and so fast the pain shoots from your heart to your head and stays there, aching, burning, screaming silently.  No hope for anything to save Stella???  How is that possible.  It still boggles my mind.

Without even needing to discuss it privately, Aimee and I immediately knew that we were not interested in any kind of prolonging of Stella's life.  If our daughter was going to die, we wanted to enjoy our time with her, not spend the summer at Sick Kids radiating the tumour that would kill her regardless.  We wanted her off the steroids immediately.  The steroids were turning our child into a stranger who could not stop eating at all hours, who was tantruming and physically lashing out at us, who was not happy and slept a lot.  And no, we didn't want a shunt put into her brain--- which would alleviate some of the hydrocephalus, but was a major operation requiring a week in the hospital, brain surgery and the outcome of maybe prolonging her life just a bit. Our decisions were met with a bit of surprise by the Doctor, and he spent a lot of time talking more about the radiation option, but we were confident in our decisions.  We were not focused on Stella living long, we were focused on Stella living well.  At one point, I asked about a support group for parents whose children were dying of cancer and the Doctor kindly advised that a support group might not be the best thing as almost every other parent would be pursuing some type of treatment and he was afraid we might be ostracized or unwelcome in a parents group.  His comment left me stunned, crying, doubting Aimee and my decision.  All I ever wanted to do as a parent was make Stella happy, was it a terrible thing to sacrifice days of her life for time with her that was fun and would give us our true daughter, even just for a little while???

As the weeks have gone on and we've begun to watch Stella deteriorate I've never regretted our decision, but I have wondered if we're being selfish for just calmly and quietly accepting the Doctors diagnosis the moment it was made and not "fighting" for time with Stella.  Although we've had some wonderful and well-meaning people send us emails about homeopathic treatments, American cancer hospitals, alternative medicine and the belief in miracles and God curing our child, I keep looking at all these options and then remembering that all of the stories I've read online about children with DIPG end in their death.  Even when parents have fought so hard and so long and expanded so much energy, time and money to save their children, they die anyway.  It's so unfair.  It's so devastating.  It's so disheartening.  I wish I could find something to cling on to like these other parents have, something to "fight" back with…but I just feel defeated.  The cancer has already won and all we can do is stand back and watch it ravage our child and slowly destroy the hopes, dreams and plans we had for her future.  She will not see her third birthday.  She will not go to kindergarten.  She will not get to go to Wanakita Camp with Ava and Aurora.  She will not have sleepovers with Flora when they're teenagers and play soccer with Arin.  She will not grow up protecting her little brother in the schoolyard.  She will not give us attitude as a 13-year old and fight with us about make-up and ear piercing.  She will not go to University, even though I have an RESP for her that I started when she was born.  She will not have a first dance recital.  She will not be Gracie's Maid of Honour at her wedding.  She will not continue my family tradition of over the top, tacky Christmas decorations.  But despite all this, she will LIVE a full and beautiful life even though it will not be anything like we imagined.  She will get to go to Sesame Street Land in Pennsylvania next week.  She will get to eat ice cream for breakfast.  She will get to play with her friends and laugh at their antics.  She will be the focus of our lives and energy for as long as she is with us.  I constantly ask myself, "is that enough?".  It's all I can do but...is it enough?

Sometime I question if the decision we've made to have no treatments whatsoever is as selfless as I like to believe ("we're doing it for her"), or if it's selfish…because I don't know how long I can live like this; loving Stella, knowing with each day and each breath and each smile she gifts us with is bringing us one day closer to when we will need to learn to live without her.  As much as I tell myself it's better for her to live a shorter, higher quality life, I think it's also better for me.  I don't think I can put up this front for a year--- choking back tears as I read her stories before bed, greeting her each morning with a smile that goes no further than my face, trying not to notice that she's crawling around the library instead of walking like she was last week and instead entertaining her with puppet shows and silly faces.

This afternoon, Aimee and I went to plan Stella's funeral.  We went to a beige-covered office with a lovely funeral services worker and calmly made decisions regarding cremation vs. burial, catering for a reception, the type of urn we want, flower arrangements, casket selections, etc.  The whole time I was sitting there with my list of requests, trying to imagine I was back at work and this was just another agenda for a meeting, not us planning the funeral of our curly-haired daughter who at that exact moment was sitting on Poppa's knee at Tim Horton's enjoying and ice cream cone and chattering about her new fish at home. 

We want sunflowers and poppies…but they may not be in season.  We want Stella and Sam books to decorate the room.  We want people to wear bright colours, not drab grey and black .  We want to celebrate her life.  We want to do right by her and honour her because although her time will be short, it is meaningful and special.  We recently had two of our best friends name their newborn daughters in her honour.  She will be remembered by those who loved her.  But what a horrible thing to have to go and do today.  How surreal.  How hard. How unfair.

Sitting there in the room, looking through a binder labeled "children's caskets", I couldn't help feeling as though this was the final step on "giving up" on Stella's life.  This was the white flag, the final moment of acceptance that Stella is going to die and there is nothing we can do about it.  We have nothing to fight, no miracles to cling to, no battle to be won or lost.  We are planning her funeral.  We are accepting the inevitable death that will come soon---another month or two at most, so the Doctors guess.

 Someone posted something today that touched and struck me deeply.  It will become the mantra to our life as we enter the last few weeks or months of Stella's life.

"Since we can't add days to her life, we will add life to her days"

That got me to thinking tonight…maybe the white flag doesn't have to mean surrender.  Maybe the white flag can stand for pureness, for a blank canvas.  Maybe it can mean light.  Maybe it symbolizes Stella and us being at peace with our lives and our decisions.  Maybe it is a new beginning.