cottages and cancer

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In a few days, Stella, Aimee and I will head to our third cottage in three weeks.  Thank-you SO much to everyone who has made these trips possible with your offers, donations, time and ice cream money!

It’s a strange feeling; to have an entire summer off together and be surrounded each day by family and laughter, water, sky, sand and fun but still bear the weight of the reason this is all happening—because this will be Stella’s last summer.  Our daughter is going to die.  It still feels strange to say that…to write it and think it.  But it’s true and nothing we can do or say will change that reality.

Luckily, physically, Stella is still doing extremely well.  Her ability to walk has deteriorated markedly in the month since she was diagnosed…exactly a month and two days since we got the news.  Still so hard to believe…already a month…only a month…how many months left???  But although her walking has deteriorated and her hands are much shakier, she is completely unaffected by all of it.  She just asks to be carried a lot more and is careful to hang onto things when she walks.  But she still walks…runs…dances this funny little flat footed stomp that knocks her over each time, and each time she tumbles she just laughs and pushes herself back up to resume dancing.  Stella is still so easy to make laugh.  Her giggles fill our days. She’s energetic, funny, and a little imp.  When you say “no” to her she laughs her head off and does whatever she was doing even more.  Despite everything that is going on inside her little body, she is just a 2-year old at heart.  She still has trouble sharing and needs time outs, still refuses to take her medicine unless her new puppet “Carrot” gives it to her, still makes us laugh and cry each day.

Stella has been adoring her cottage trips.  She isn’t exactly one for water or beaches, but she LOVES parks and playgrounds and sitting on our laps watching other kids run in the water and sand.  And she has been having a blast trying to keep up with her three year old cousin, Gracie.  Gracie loves the water and the sand whereas Stella doesn’t like to go near it. But once in awhile she can be persuaded by her aunties to dip her feet in— but ONLY when she has socks on, which makes it all the funnier to watch.

At our current cottage rental, inThunderBeach, there is a park with a tiny house.  Stella has turned it into her personal coffee house and it’s hilarious to hear her repeat the things she must hear us say at restaurants/drive ins.  She always asks us if we want a double-double (Aimee) or a large tea with milk (Mish).  Sometimes she offers us hamburgers or doughnuts from her little window as well and warns us “it’s hot!” as she blows on her imaginary creations. Her prices are outrageous (two hundred dollars, Mama), but the service and her little giggles when we hand over our leaf money is totally worth it.

Sometimes while she’s chatting to her imaginary customers in the little house I wander over to the swings.  I like to swing higher…higher…higher and close my eyes and remember what it was like to be a kid “flying” through the air without a care in the world.  Usually a giggle from nearby wakes me from my daydream and I look down to see my curly-haired daughter laughing in glee at my swinging.  It stops my heart every time and makes me want to just leap from the swings and let the wind take me far, far away from this reality.  It’s so crazy.  How can Stella be standing next to me, so full of love and life, and yet have a brain tumour steadily working away beneath those red curls, taking away her faculties and slowly shutting down her beautiful smile…how can I imagine that next summer I will sit in this same playground with her baby brother, only she won’t be playing in the little house, chasing Gracie or calling, “Mama come see me do it by myself!”.  After we leave this cottage she’ll never see this beach or this park again.  Soon her smiles, the warmth of her breath against my cheek as she naps, her chubby hands held tightly in mine will only be a memory.  It doesn’t seem possible, my head has accepted the reality but my heart can’t process it yet.

On Saturday afternoon I laid down for a nap and had a bad dream.  I dreamt that I was sleeping in bed and a huge, fat cat plopped itself on my feet and sunk its needle-like teeth into my ankle.  I could hear all these people nearby talking and laughing, but I couldn’t open my eyes and I tried to scream for help, but couldn’t catch my breath.  I kept opening my mouth to scream but no sound would come out.  When I finally woke up, I was in a full blown panic attack and couldn’t catch my breath for real.  I realized afterwards that the dream is really how I feel about this whole situation— there is always a scream just below the surface that is struggling to escape, but I can’t catch my breath enough to let it out, so I just feel pain all the time, and there’s nothing to be done about it.  I want so badly to scream at the injustice of it all…at the pain…at the loss…at the world.  But I can’t.  Aimee and I have to keep waking up each morning and greeting our daughter with open arms and open hearts and even though it hurts so badly to love her so much, we have to do it for her and for the promises we made to her and each other as parents.  And I wouldn’t have it any other way.

Donations, cards, kind words and offers continue to pour into our family.  We cry each and every time we get a card, hear that someone has thought of us or done something nice for us.  It’s an incredible feeling to be physically, financially and emotionally held up by such a huge community of special people.  The lessons Aimee and I are learning through this experience go far beyond our life with Stella.  We are learning everyday lessons in kindness, humility, gratitude, graciousness, generosity and love.  It’s ironic to feel so lucky at this time in our lives, but we do.

Headed to another cottage this weekend and looking forward to creating more more timeless memories with our beautiful angel-to-be.  Thank-you again to everyone…those we know and those we don’t.  You are all each a precious part of this miracle of community we are experiencing.

Love,

Aim, Mish& Stella

Stella cottaging with Poppa, Mama and Auntie Heather in Kincardine:

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25 days

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25 days ago Aimee and I brought Stella into Sick Kids Hospital early in the morning thinking she might have an ear infection or, worst case scenario, a physical issue with her walking that might need some physiotherapy. I called work and assured them I’d be in just after 9am.

17 hours after arriving at the hospital we were given the news that Stella had an inoperable brain tumour that was likely fatal and a week ago that diagnosis was confirmed. Our daughter is going to die. No one knows when or how, they just know she will.

25 days ago our world was not just turned upside down, but violently thrown. We felt so helpless and hopeless. There is nothing in our experience that prepared us for the reality that we would need to learn to live without the spirited little redhead that took over our lives two years ago. She was the culmination of our dreams of parenthood and the centre of our family.

For 25 days we have had a steady stream of visitors, phone calls and messages interspersed with Doctor’s appointments, a biopsy, palliative care appointments, cottage trips and playdates. What a strange life.

Each and every day by various people we are asked, “how are you doing?”. I feel like everyone who comes on this site, who calls and emails, those who have sent love and support and offered friendship deserve an answer to this question, but the truth is…I don’t know how we’re doing. Some days we do okay and other days we don’t. I’ve been having panic attacks and bouts of uncontrollable grief and anger. Eating and sleeping are carefully regulated by a plethora of medications. My psychiatrist has now become a vital part of my daily functioning. Aimee has also been crying, not sleeping and worrying. We have another baby due in just under 12 weeks and are still sometimes having trouble imagining how to bring a newborn into our lives when sometimes we can barely shower. We cry a lot. I feel angry a lot. 25 days ago we had it all. Now we still have a lot, but not “all”. Yet somehow, we both get up every morning and we look after our daughter and we feed ourselves and we even laugh and talk about things like the lawn.

In the early days getting out of bed felt like too much work. We have been asked to do the impossible—to be happy and strong for our daughter living with the knowledge that a brain tumor is slowly taking her away from us. We are working very hard to give Stella a wonderful life for the time she has left, but it is very hard work and we need a team to do it. It’s hard to have the energy and spirit to keep going day after day. We spend each day as a family and have already shared many wonderful days of sunshine and friendship that feel almost like Heaven. But each peal of laughter from Stella as she throws rocks into Lake Huron, each giggle as she “catches” me on the slide, each “love you Mama” also breaks my heart a little bit more and is a mixture of the most intense joy and pain one could imagine. Like being slowly tortured by sunshine.

I don’t know how we’re doing, but I do know that the only reason we’re still standing at all is because we have the most incredible group of community and friends surrounding us and holding us up. Everywhere we go Doctors, Nurses, Social Workers have all commented on how dedicated our family and friends are to us. In this saddest of times, Aimee and I are continuously surprised by the extreme love and selflessness that continues to pour in around us.

To anyone and everyone who reads this site, who thinks of us, who offers us their support, who grieves with us, who laughs with us, who cooks for us, plays with us, holds us while we cry, assures us, hugs us, cares about us… thank-you from the depths of our souls.

25 days ago Stella walked into Sick Kids Hospital with a huge smile excited to show the Doctor her brand new shoes.
25 days later Stella is still laughing and smiling and showing off those shoes.

Stella and Auntie Heather, just loving life:

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diagnosis confirmed

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Diagnosis Confirmed- by Omo Akintan

This morning the neuro-oncologist met with Aimee and Mishi to provide the results of the biopsy.  The biopsy confirmed that Stella has a DIPG tumour which is the diagnosis they had been working with all along.  Because Stella is younger than is typical for a child to become symptomatic from a DIPG tumour (children are usually diagnosed at about 5) and because she isn’t vomiting, the biopsy was conducted to confirm the diagnosis.  The neuro-oncologist indicated that their team questioned the pathologist who conducted the biopsy extensively yesterday and based on their consult, they consider the diagnosis to be conclusive.    In other words, the terminal diagnosis has been more conclusively confirmed.

 

The neuro-oncologist discussed some of their primary concerns going forward.  He indicated that they are concerned about the level of hydrocephalis (an accumulation of cerebrospinal fluid on her brain) and the impact that may have on her functioning.  He also recommended that Stella be taken off the steroids.  While the steroids control the effect of the hydrocephalis, it also causes her to have a significantly increased appetite and to be agitated and angry.   These side effects of the steroids are problematic since one of the most common symptoms of the tumour is difficulty swallowing.  There is a concern that should that occur while she is on the steroids, the anger that may result from the hunger and inability to eat may cause choking.  He also indicated that the steroids may be addictive.

 

Aimee and Mishi welcomed the advice regarding the steroids since the mood alterations caused by the steroids have changed her personality and made her somewhat harder to manage and they would very much like to have their Stella back for however long they have her.

 

We were also able to get some additional information about radiation which is the only treatment option that would be available. He confirmed that radiation is not curative.  It would essentially be about buying time.  He explained that radiation would involve six weeks of treatment in which she would be sedated daily.  The goal of the treatment would be what he described as a “honeymoon” period.  Essentially, following the 6 weeks of treatment, there would be a period of anywhere from 1 – 9 mths in which the child is asymptomatic.  However, at some point within about 9 months, the symptoms will return and when they do, children typically deteriorate relatively quickly.  It could take about a month or two but there could be as little as 2 weeks between the resumption of symptoms and the child’s death.

 

Aimee and Mishi’s priority all along has been Stella’s quality of life and while it was extremely difficult for them to hear the news today, they remain steadfast in their commitment to focus on her quality of life rather than prolongation.  This is especially so since Stella is exhibiting few symptoms at the moment.  Rather than enrol her in six weeks of radiation, they will focus their attention on making plans to maximise their time with her.

 

Since most kids with the diagnosis are older and typically receive radiation treatment, the doctor was unable to give much direction on how the next few weeks and months will unfold.   He opined that she will probably start to be more symptomatic shortly but could not say for certain.

 

The long and short of it is that for the first time since June 24-25, there is no future doctor’s appointment to wait for to get more information. The neuro-oncologist have given the best information they can.  The palliative care doctors have also worked with Aimee and Mishi to develop a plan to address symptoms as they arise to ensure that Stella will always be as comfortable and pain free as possible.  We will all now turn our undivided attention to that little force, Stella, and take her lead on what each day will bring.  For now she’s as feisty as ever and enjoying the days with her family and friends.

 

She spent last weekend chasing geese at her grandpa’s friend’s property in Uxbridge and Wednesday and Thursday befriending four cats at Nancy’s home in Picton.  She’s got playdates lined up for tomorrow and will be heading to Kincardine on Sunday to spend some time at her great uncle’s cottage.

 

Although we knew there was a very slim chance that today would have brought different news, we all had to acknowledge after the consult that we had been hopeful.  And, it is going to take some time to come to full terms with the apparent finality of it.  Aimee and Mishi continue to appreciate your love, support, thoughts, well wishes and kind words.

Stella and Aimee enjoy a Riverdale Farm day:

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biopsy (By: Omo Akintan)

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On Monday July 4th, Michi and Aimee met with some of Stella’s doctors to address her case. They discussed performing a biopsy on the tumor, as well as the two different biopsy methods that could be used. The purpose of the biopsy is to 100% determine the type of tumor Stella has, although the doctors still feel their primary diagnosis is most probable.  The first biopsy method would involve drilling a hole in Stella’s skull and would risk possible damage to areas of her brain. This method would also require her to have a shunt put in after the procedure. With this method the doctors would have access to all areas of her tumor. The second method is less invasive. With this procedure a needle would be inserted into her neck and directly into the tumor. While the doctors would have less access to the tumor with this method, they feel that they will be able to get the sample they need for confirmation of the exact kind of cancer Stella has.

After some discussion Michi and Aimee have decided to proceed with the less invasive biopsy. Stella’s biopsy is currently scheduled for Friday July 8th, and she will have to stay in Sick Kids for a day or so afterward to check for bleeding and infection. It will be seven days before the results of the biopsy come in.

Once again Aimee and Michi would like to thank everyone for all their love, thoughts, care and support in this difficult time.

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