FAQ's- Updated Sep/2012

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FAQ's

The idea for this blog post came out of emails, phone calls and conversations we've had with people over the last little while, who wanted to know more about us, Stella, the medical information, etc.  So, below Aimee and I have tried to answer some of the most Frequently Asked Questions we get.

 

Please note that the "medical" information contained within this posting is based on things that we have read/ been told by medical professionals over the last several months.  It is not properly referenced, and should not be considered official medical information.  This is what we have heard, learnt and believe, but we can make no promises regarding its accuracy.  

 

Who are you guys?

 

We are Aimee and Mishi, a same-sex couple living in Toronto, Canada that have been together since 2003 and married (legally) since 2006.

 

We are both extremely close to our families, and are lucky enough to have an excellent group of people who have loved and cared for us our entire lives.  We also have a huge network of friends that have proven time and time again that it takes a village to raise a child--- and help a child die.

 

We both worked full-time before Stella's diagnosis, but have been off work since the day Stella was diagnosed, June 24th 2011.  With great thanks to the incredible support of our workplaces.

 

Stella Joy is our firstborn.  She was born in April of 2009.

Her brother, Samson John, was born October 2011- 4 months after Stella's diagnosis.

UPDATE:  Her second brother, Hugo Charles, was born August 2012- 13 months after Stella's diagnosis.

 

What does Stella have?

 

Stella has an aggressive (cancerous) brain tumour called DIPG.  DIPG stands for Diffuse Intrinsic Pontine Glioma.

 

DIPG is "the most devastation of paediatric malignancies".  The mean survival rate for children with this cancer is 9 months, with virtually all children diagnosed dying of the disease within 1-2 years.

 

DIPG has a 0% cure rate.  That's right, 0%.

 

What is the treatment for DIPG?

 

Although the cure rate for DIPG is 0%, there are several treatments which are offered to families in an attempt to extend life.

 

The standard treatment offered for DIPG is 6 weeks of radiation.  Radiation involves high-energy X-rays directed at the site of the tumour that can destroy tumour cells.  Often, this treatment can reduce symptoms significantly, but other times the radiation cannot help as parts of the brainstem may have already been permanently damaged.  There are also several risks involved in radiation such as paralysis, brain damage and incidents of fatigue, diarrhea or vomiting.  In 30% of cases, the radiation can actually make the symptoms of the tumour worse.

 

Steroids (dexamethasone) are often given to children with DIPG, to try to improve symptoms.  There is often incidences of hydrocephalus in children with this tumour (buildup of fluid in the skull), which can be extremely painful and cause pressure on the tumour.  Steroids can reduce the swelling and pressure, but also come with side effects such as: mood changes, increased appetite, weight gain, fluid retention, blood sugar instability, high blood pressure and increased susceptibility to infection.  

 

Surgery will not help.  The tumour invades the brain stem, growing and spreading between normal nerve cells so any surgery would only serve to cause further damage to these nerve cells, which are vital for swallowing and breathing.

 

Chemotherapy is also not very helpful.  There has been little evidence to show that chemotherapy has been of help in DIPG, so we did not feel that the risks and side effects were worth it for our purposes.  Immunotherapy, another common treatment, has also had disappointing results.

 

There are many, many clinical trials currently underway to try to crack the code of this devastating disease, and many families have written to me about their exploration of alternative therapies including diets, shakes, clinical trials, homeopathy and chinese medicine.  

 

What treatment is Stella receiving?

 

Stella is not, and has not, received any treatment.  Because Stella was barely 2 years old at the time of her diagnosis, the standard treatment of radiation therapy would have entailed 6 weeks of Stella being sedated on a daily basis to receive the therapy.  With no guarantee it would work, Stella's young age, and the fact we wanted desperately to enjoy our remaining time with her, we opted for no treatments.  She was on steroids for one week post-diagnosis, but we despised the changes we saw in her (huge appetite, tantrums known as "roid rage", discomfort, etc.) so we took her off immediately with no plans to put her back on.

 

This decision to not try to prolong her life using treatments was not one we took lightly, and we are extremely pleased with the high quality of life we have been able to offer Stella, free of the burdens of invasive medications, side effects, sedation, etc. that a 2-year old would not have understood.  Because of this decision, we were able to spend the summer taking Stella to cottages, the zoo, Riverdale Farm, the library and on playdate after playdate instead of being chained to the Hospital.  In fact, Stella has been home the entire time since her diagnosis which has been wonderful for all of us.

 

We have also been extremely lucky to be connected to The Temmy Latner Centre for Palliative Care, and have an excellent Palliative Care Doctor who visits us weekly at home and gives us an incredible amount of information and support.  UPDATE:  She also has a nurse from VHA who comes bi-weekly to check in on Stella and change some of her dressings/medication tapes as needed

 

Although Stella is not receiving treatment, she receives morphine on a daily basis to eliminate the pain in her head, PEG flakes to counteract constipation, Zofran for nausea and Ativan for seizures.  So far we have been able to give her all her medications orally…mostly hidden in ice cream! UPDATE:  Stella continues to receive medications, but as her swallowing has become much less reliable, we have changed the method in which she receives them.  The morphine she now receives thanks to a small pump (we call it her "special purse") that allows the medicine to go directly into her bloodstream, with the option of increasing it for pain as needed.  The Zofran for nausea still gets given in ice cream (r porridge!), the Ativan for seizures is not Phenobarb for seizures, and is given as a suppository.  She also gets gravol daily in suppository form and her PEG flakes for constipation either in her porridge, or milk.

 

What are the symptoms of this tumour?

 

Every child has a different journey with DIPG.  The tumours don't always grow in the same place, or at the same speed.  The brainstem where the tumour grows controls motor functions.  The tragedy of DIPG is that it slowly robs the patient of motor functions such as walking, arm movements, speech, sight, eating and breathing while leaving their brain completely intact.  That means that children with DIPG are aware of their decline and continue to grow and develop cerebrally in every other way.

 

For Stella, the first thing to disappear was her ability to walk which left her in August.  She has been unable to grasp small objects and do things like feed herself since mid-September.  Her eyesight is compromised, but she is still able to see some things although we're not sure how much as it is difficult to communicate with her.  Whereas in August and prior, Stella was speaking in full sentences with a huge vocabulary, now it takes her up to 30 seconds to squeak out one word, which is generally difficult if not possible to comprehend.  She eats very little and requires liquids to be thickened to enable her to swallow them.  Her diet at the moment consists of avocados, mashed potatoes, apple sauce, hamburgers, ice cream and milk.   Since October she has been incapable of sitting up unassisted, and as of December she is unable to hold her head up without support.  She drools constantly and has begun to suffer from seizures.  UPDATE: The tumor has continued to wreck havoc on Stella's physical abilities.  In the last several months since this was written, Stella has lost any and all ability to have physical independence.  i.e. her legs, arms, neck, head have zero muscle tone so she must be supported 100% all of the time.  She has completely lost the ability to speak, there are no longer any discernable words although she learned to communicate "yes" or "no" by sticking out her tongue.  The right side of her face is somewhat paralyzed giving her smile a crooked look.  it is much more difficult for her to laugh/smile, but she still does it as much as she is able.  Right now almost all of her communication is through her eyes.  They go wide when she is happy/excited, half-closed when she is in pain or tired and can roll up when she feels like it.

 

However, Stella's smile remains intact and the fundamental parts of her personality--- fearlessness, humour and mischievousness are still completely present.  

 

How long will Stella live?

 

No one knows.  When we decided against treatment at the end of June, Doctors told us to expect Stella to live 3-4 months maximum.  Since we had a baby due 4 months after diagnosis, we lived in fear that Stella would never meet her brother (whom she named "Sam" in utero, after her favourite book series Stella and Sam).

 

In the summer, the Doctor guessed that the chances of Stella living until Christmas were close to nothing.  However, we are 8 months into the diagnosis, and Stella is still with us.  She has seen Sam being born, lived through Hallowe'en, Christmas, New Year's, Valentine's Day, etc.  She still smiles on a daily basis, and although she is declining, the decline is slow and often stalled.

 

We have no doubt she will die, but no one has any idea when…and we're not in any hurry to find out!

UPDATE: Openly defying any Doctor who has seen her, Stella is now 15 months into her diagnosis and is still alive and quite content.  We have had a few "close calls" where we thought we were losing her, but each time she rallied back to give us more time and smiles together.

 

Do you have any advice for other parents going through something similar?

 

Well, not really.  We have found it incredibly helpful to hear from other parents that have lost a child.  Their advice is aways so heartfelt and honest.  The only advice we can come up with at the moment is to listen to your own heart and make decisions based on your knowledge of your child, individual circumstances and personal convictions.  Grieving is such a personal journey, and the patience you need to have with yourself is infinite.  No one's path with DIPG is the same, and the only thing you can strive for is that you don't regret any of the decisions you've made.  We think the best way to do this is to trust your instincts and be at peace with the journey as much as possible.

 

Why don't you do Make-a-Wish for Stella?

 

Both Make-a-Wish and Children's Wish Foundation will not grant wishes for children under three years of age.  Even if Stella lives to be three (her birthday is in 2 months), she will not qualify as the rules state the child must be able to communicate clearly and independently what their wish is…something Stella is unable to do.

 

We were, however, lucky enough to have been able to take an incredible vacation to Pennsylvania in August to Sesame Street Land, thanks to generous donations from friends and family.

UPDATE: Way against the odds, Stella made it to her third birthday!!  We contacted Make-A-Wish and though she was too sick to go very far (i.e. Disney), but they sent us to Stella's favourite vacation spot-- Great Wolf Lodge in Niagara Falls, for two nights!  We brought Auntie Heather, Daniel, Xavier, Juju, Auntie Angie and Gracie with us and had a blast!

 

Are you planning on having other children?

 

Yes.  Although this is a very personal decision, Aimee and I feel strongly that getting a chance to be with Stella over these many months have given us a once-in-a-lifetime opportunity to learn how to be better parents and better people.  We would like to share what we've learned with other children, if we are lucky enough, and continue our dreams of being parents despite the fact that we will lose our first-born to this terrible disease.  We would like Sam to have at least one other sibling, and hope to use the inspiration and appreciation for the small things that Stella has taught us to raise incredible, independent, self-sufficient children… if we are lucky enough to have more.

UPDATE: Surprise!  Aimee and I indeed had another child!  Our second son Hugo was born in August 2012 and Stella absolutely adores him!

 

 

Why do you have this blog?

 

Originally it started off as a way for us to communicate to our friends and family Stella's medical information and goings-on in a succinct and easy way.  However, it has evolved over the months and now serves as both a therapeutic tool for us, and a chance to tell Stella's story and our innermost thoughts and feelings as we navigate this extremely difficult and uncharted territory.  We are a tangle of good days, bad days, emotions, fears, hopes, anger and joy.  We hope that this blog represents all of the parts of our journey and hope to someday print it out and give it to Sam as a memory of these days and his sister, whom he will not remember.  

 

What can we do to help/What do you need?

 

This is without a doubt, the question we get asked most frequently.  We have been completely overwhelmed with the generosity of friends, family members and strangers.  When Stella was feeling better and more active, we were grateful to receive from people gift certificates for us to take her amazing places like the Ontario Science Centre, Zoo, Cottages, ice cream places, restaurants, toy stores, etc.  

 

We were also so lucky to get oodles and oodles of delicious food over the last eight months which made it possible for us to care for Stella and Sam and ourselves and still be well nourished!

 

We have been the subject of several incredible fundraisers, organized by close friends as well as acquaintances.  Each fundraiser was special not just for the money that was raised, but because we were so lucky to connect with such wonderful people and see how a community that comes together can do incredible things.  It is truly uplifting.

 

Strangers and friends have sent us incredible things such as cards, letters, books, drawings, toys for Stella, games and gift certificates.  The mail has never been so fun!

 

But the most important thing that we need right now is just support and understanding.  Even though we are not always the best at returning phone messages and emails, we love and appreciate each and every one of them.  We love it when friends come visit us, when they invite us places (even if we can rarely go).  One the days where we feel like we're living in a vacuum, a knock on the door bringing a fresh face and a smile lets sunshine in---both literally and figuratively.  Your email messages and blog comments are read and re-read and each one propels us forward and makes us feel less alone.

 

Your understanding, patience, support and love is what we need right now.  I know this journey feels long sometimes--- to all of us, but please just keep doing what you're doing, it's EXACTLY what we need.

UPDATE: Another FAQ we get is who is who in our blog.  Here are some frequently mentioned family members and how they fit in:

Mishi: Stella's Mama

Aimee: Stella's Mommy

Poppa: Mishi's Dad

GrandPa: Aimee's Dad

DeeDee: Mishi's Mom

Tutu: Aimee's Mom

Nanny: Aimee's StepMom

Auntie Heather: Mishi's sister, Xavier's Mom

Auntie Angie: Aimee's sister, Gracie's Mom

Uncle Tristan: Mishi's brother

Juju: Aimee's sister-in-law, Gracie's Mom

Daniel: Mishi's brother-in-law, Xavier's Dad

Gracie: Our niece (Andrea and Juju's daughter)

Xavier: Our nephew (Heather and Daniel's son)

...there are dozens more in the "cast of characters" in our lives, but those are the most frequently mentioned!

 

UPDATE: Another FAQ We get all the time has to do with Stella's favourite things/places that are often mentioned on the blog...

Library: We go to S. Walter Stewart Library:  http://www.torontopubliclibrary.ca/detail.jsp?R=LIB017

Drop-in: We go to Kimbourne Drop-In through the East End Children's Centre:  http://eastendchildrenscentre.org/

Farmer's Market: We go to the Farmer's Market at East Lynn Park and East York Civic Centre: http://danfortheastcommunityassociation.com/

Playground: We go to Aldwych Park: https://foursquare.com/v/aldwych-park/4c059c6691d776b020b3f7f9

Cupcakes: Stella loves the cupcakes from Life is Sweet and Bobbette And Belle, both on Queen St. E.: http://lifeissweet.ca/

Indoor Playground: Playground Paradise, or Monkey Magoo's

Music Therapist: Christina Weldon: http://facilitatearts.com/Christinaweldon.html

Favourite Sweets: By Christine McLaughlin, of Molly Cakes: http://www.mollycake.ca/

 

Stella proves that cancer can't take away everything...her smile is our lifeline!