Thursday, October 30, 2008

How far the little candle throws its beams . . .



I wanted to share this e-mail with everyone reading this blog. Please remember to light a candle on November 1st for little Nayohan. Christy is my friend and this is about her daughter and her family in Moosenee . . . Christy, I hope you don't mind . . .


Sent: Thursday, October 20, 2005 10:18 PM
Subject: Update on Nayohan Cheechoo
Dear Friends,

During this past week Nayohan has recieved her third dose of chemotherapy, she is now able to stand up on her own, and her confidence to walk is returning. Miyopin and I have returned to school and work in Moosonee and Moose Factory. Christy and Nayohan have remained in Toronto at SickKids. Thank you to everyone for rallying and sending positive energy and prayer, being supportive by listening, caring, visiting, giving, and extending your hearts during this overwhelmingly crazy month and a half.

The neurosurgical team at SickKids was able to remove 90% of an immature teratoma tumour in the suprasellar region of our little Nayos's brain. There is no chemotharapy protocol for the treating of the residual cancerous tumour in her hypothalamus-chiasmal region; the oncologist/nuerologists/nuerosurgeons "best educated guess" is a weekly therapy of vinblastine for 10 weeks. After which, we strongly hope the tumour will be gone, or has shrunk, or has stopped growing.

As a result of the physical trauma to her brain Nayohan has lost her innate sensation of thirst and has developed Diabetes Insipidis. Nayohan will be discharged from SickKids in the upcoming weeks, however after much consultation with medical personnel and the social counsellor we have decided that pursuing treatment in Northern Ontario presents its own risks to her health and therefore have opted for Christy and Nayohan to find a condo or apartment in the SickKids proximity in Toronto until Nayohan can return home as our healthy baby girl. We want our Nayohan to continue to recieve the best quality of care and treatment.

Miyopin and I will stay in Moosonee and we will reunite as a family in early December in Toronto when the MRI results are interpreted and to make decisions for the next stage of this journey. Please continue to send positive energy to our little polar bear cub Nayohan especially on November 1st her third birthday. We are truly amazed at the support network that has developed for our little Nayos and are extrememly appreciative and thankful.

Kitchi-Megtch and Thank you all

Don and Miyopin
Christy and Nayohan

Sent: Sunday, November 06, 2005 2:43 PM
Subject: Update November 5, 2005 Nayohan Cheechoo

Dear Friends,

The daily realities of the past two months (Nayohans separation from home, the intrusion of medical strangers, invasive procedures, distasteful medication, discomfort, and pain) have been dramatically reduced. Nayohan was discharged from the hospital last monday, walked that evening, celebrated her third birthday the following day. She now has a temporary sanctuary for her little psyche and soul.

Nayohan and Christy 'stroll' daily to the hospital for chemotherapy, blood-sodium level tests, physio-occupational therapy, and library storytime. Our little polar bear cub continues to amaze people with her resilient spirit, gentle presence, and co-participation and management of her healing and care. Nayos and Miyopin chit-chat on the telephone at bedtime - and I relay email messages and conversation to Christy. We await Nayos unconfirmed December MRI appointment.

We continue to live between the light of hope and the shadow of threat, and are so thankful and honoured for the supportive relationships that are helping to sustain and empower us through this difficult time. Please continue to send the positive energy to melt away the tumour and to heal our Saraphine Nayohan Cheechoo.

Christy can be reached at 416 xxx-xxxx - Unit 564 - 53 McCaul Street TO.

Kitchi Megwetch

Don & Miyopin
Christy & Nayohan

Sent: Saturday, December 10, 2005 9:36 AM
Subject: Good news from a relieved Auntie

Hello,

Following Nayohan Cheechoo's MRI, Don met with the doctors and the therapy is working - the tumour has stopped growing. Nayohan will continue the Vinblastine therapy at the Hospital for Sick Children.

Thank you,
Cassandra Nielsen
on behalf of Don, Christy, Miyopin, and Nayohan


Sent 2006/01/25 10:06

Subject Nayos

Good Morning,

Christy and Nayos arrived safely yesterday at 12:30 pm. You cannot imagine how amazing it was to wake up with the both of them home. Nayos is doing fine both spiritually and physically - she started touching familiar objects in our home, it seemed like she was ensuring this wasn't a dream. I recall a post-surgery meeting with Dr. Taylor inwhich he said "your in for the long haul" referring to her full recovery. At that time, I had no idea what he was referring to when he said that. As each month passes I realize his truth. Thank you again - we're just hoping we don't see SICKKIDS until the MRI.
Sincerely, Don Cheechoo


Sent: Wednesday, February 22, 2006 10:35 PM
Subject: Nayohan in Moosonee

Hello, Wachay, Bonjour,

Today, Nayohan received her first chemotherapy administered at Weenebayko Hospital, Moose Factory. Nayos and I returned from Toronto on February 14, our second attempt, to have treatment based here; our first attempt, January 24-30th was terminated due to a neutropenic fever and were medi-evacuated back to Toronto Sick Children's Hospital for two weeks.

Triumph - today was a success! Next goals: keep Nayohan healthy to receive her weekly treatments in Moose Factory and March 21st MRI in Toronto.

We are grateful for and trustful of our phenomenal health care team (Sick Kids, Weenebayko, Homecare, and the Clinic) that enables us, despite the fear of the unknown, to look towards Nayohan's future with optimism.

We are thankful to our ever evolving support network of family and friends and are fortunate that Nayohan and Miyopin are cared and enriched by so many people. I am proud that my daughters' characters have enhanced and developed friendships during our journey.

We are privileged to love our polar bear cubs and we acknowledge the daily miracle of our resilient family's continued existence. Some minutes of the day seem overwhelming and I am unable to feel anything but sorrow and anxiety. Being home, sharing love and fun with Don and my girls, and watching Nayohan's spirit heal has begun to re-energize my soul.

All of us have a common goal: treating, caring, and nurturing Nayohan to be the joyful little girl she is meant to be and the graciously beautiful and intelligent woman she will become. Thank you - Meegweetch - Merci and please keep sending the positive energy!

'Everybody loves Nayohan'

Christy, Don, Miyopin, Nayohan

p.s. I've attached 4 files: picture of the girls, letter from J.K.Rowling, and Nayo's bravery beads





Sent: Monday, April 03, 2006 9:26 AM
Subject: sunshine in Moosonee


Hello, Wachay, Bonjour, Saludos, Ni hoa,

Nayohan's journey from last summer in the sunshine cruising the Moose River and playing on the sand bars, to the frightening diagnosis of cancer and diabetes insipidus, to coping through hospitalization and starting treatment in Toronto, and continued healing in Moosonee, and onward to survival, growth, and rewarding life has been, is, and will be, fraught with numerous uncertainties.

However, Nayohan's progress over the past seven months is amazing and tremendous. The March 21st MRI showed a tumour that has neither grown nor shrunk and she will continue with the year-course of vinblastin chemotherapy based at home. We are more proficient at managing diabetes insipidus and the medical world, and most importantly, she is surviving and thriving in her own home with Miyopin, her parents, and her polar bears.

Love, knowledge, and action continue to be our most valuable tools to restore her heart, spirit, and health. We have rearranged some priorities, expectations, and schedules to accommodate our present challenge but our daughters' dreams and possibilities continue to be our long-term goals. Hope, the ultimate optimism, enables us to envision a cured, healthy, whole child, and a family returned to predictable normalcy.

We also hope for short-term achievable goals.

Daily, Nayohan understands that medicines, medical procedures, afternoon naps, good meals, and wearing slippers keep her 'blood strong' to receive treatment and to be an intact family unit in Moosonee.

Weekly, there is tremendous relief after each dose of vinblastin has been successfully administered and blood test results are acceptable for all. Currently, chemotherapy includes helicopter flights as the ice road to the hospital is too treacherous to traverse at this time of year!

Spring sunshine has arrived and soon we will cruise the Moose River: sand castles, kites, picnics, and fishing. Miyopin wants to learn to ride a bicycle without training wheels, play on a soccer team again, and return to swim lessons. She loves reading, science, drawing, and dancing, and was junior kindergarten student-of-the-month last February. She is a phenomenal caring big-sister. Nayohan counts to ten, sings her ABCs and rhymes, writes the letter 'N', dresses herself, and emulates and teases her sister. She is a resilient cutie-pie polar bear.

In three months time we will have reviewed the results of Nayohan's psychological assessment and endocrinological tests conducted when we were last at Sick Children's Hospital and be returning to Toronto for another MRI to ensure the effectiveness of the chemotherapy.

The initial shock of diagnosis has not passed and the anxiety of Nayos' compromised health is always present, but with the combined efforts of family and friends, medical professionals and technology, and Spirit we are coping and focusing on the present day and future possibilities. Please continue to send your encouraging and optimistic energy to our little polar bear, Saraphine Nayohan Karly, and to our family.

Kitchi Megwetch,
Nayohan and Miyopin
Don and Christy

Attached files: pictures of the girls and Nayohan's bravery beads.






Sent: Friday, May 12, 2006 6:20 PM
Subject: the girls

Both Miyopin and Nayohan have had colds. When Nayohan has a fever she has to have blood work done to see if her blood is "strong enough." Gratefully, her results have been great so you don't have to go to Toronto. Its been pretty stressful but we'll get through this. Last Wednesday she had her 30th dose of chemo. - 22 to go. Miyopin played her first soccer game of the season last night and she has a loose tooth. We will be heading to Toronto for Nayohan's June 1st MRI. Hope everyone is enjoying the Spring weather and birds,

Christy




Sent: Friday, May 19, 2006 9:16 AM
Subject: rainy day

Attached are photos of the girls this morning before Miyopin headed to school. Miyopin played soccer last evening - superstar. Chemotherapy was cancelled this past week - Nayohan's blood was too weak. The past two weeks have been a bit stressful due to colds and fevers but she is a strong little girl! We are planning to plant some lupin seeds this weekend and maybe go out in the boat if the weather/health are both stable. Plus, we have to post a letter to our cousins in Australia! And Aunti Caushie may come over to play playdough! Rainy day today.




Sent: Tuesday, May 23, 2006 10:15 AM
Subject: indulge me...

I love taking pictures of the girls and then sending the photos on...

It SNOWed all weekend, and once the long weekend is over, we now have beautiful weather!

Sent: Monday, May 29, 2006 7:31 PM
Subject: planes, trains, automobiles = TO's MRI

We all leave tomorrow morning for Toronto and June 1st MRI - Nayos and I are flying, Don and Miyopin are taking the train and driving the rest of the way. We are staying at the Delta Chelsea. Nayos and I return on Sunday - Don and Miyopin return on Monday. It will be a very busy few days! Please send extra positive energy on Thursday - we want the tumour GONE, but will also be elated if it continued not to grow. I will send un update once we return. Thank you all so much for being an extremely supportive network to Nayos and my family. Everything will work out and "everybody loves Nayos",

Christy

Sent: Monday, June 05, 2006 7:44 PM
Subject: Fw: planes, trains, automobiles = TO's MRI

Just a really quick note... with GREAT news.
This evening, our family is reuinted in our home. Thursday's MRI scan showed a stable tumour (it has not grown) and it may have even shrunk! Nayohan's diabetes insipidus has been stable during all the treatments/procedures/travelling.

Optimism is the faith that leads to achievement. Nothing can be done without hope or confidence - Helen Keller

So, we are in "hiding" from OncologyWorld for another 10 to 12 weeks. Nayohan's 33rd administration of chemo is this Wednesday and I am hoping that we will have the i-stat monitor in our home by the end of the month.

Thank you for sending optimism our way. We are doing well and I hope everyone is enjoying the summer weather. I am planning to send an update email this weekend with all the details.

Christy

Sent: Thursday, June 15, 2006 11:07 AM
Subject: a first!

Miyopin's first permanent tooth has arrived and the tooth fairy came last night!

Sent: Monday, June 19, 2006 5:54 PM
Subject: invisibility cloak

You may not be able to notice... but Nayohan is wearing her invisibility cloak. While in Toronto, Nayohan would frequently be overwhelmed by strangers so she would put on the poncho Nancy Lucas gave her. And magically, no one could see her, ha ha ha!

Sent: Friday, June 23, 2006 11:01 AM
Subject: tiara and butterflies

Nayohan wears her tiara for the majority of the day; why not?
When we were in Toronto last March Miyopin saw the yellow dress in a store. Earlier this month when we were back at SickKids, she ran into the store and said "I've been dreaming of you, butterfly dress!" I had to buy it.

We are hoping for sunny warm weather this weekend so we can take Nayohan back to BearPaw Island and the sandbars to fly kites and play in the sand. She and I spent many moments, while she was healing away from home, reminiscing and planning our summer fun. Oh let there be sunshine!... and while I am begging for beautiful weather... Oh let there be no blackflies and mosquitoes!

Sent: Monday, June 26, 2006 3:38 PM
Subject: Harry Potter fans!

Another letter from JKRowling! Last April, I sent her a thank-you letter and enclosed pictures of the girls. We are thrilled!

Christy and the Girls

p.s. I've attached files of the original letter, too.



Sent: Thursday, August 24, 2006 7:37 PM
Subject: 1st & 43rd

first day of school
43rd chemotherapy

Sent: Monday, September 11, 2006 4:03 PM
Subject: Fw: sunshine in Moosonee

Here is a copy of the updates I send to our e-support-community. May I include you on our list? I believe that the more souls generating and sending positive energy, light, and prayers to Nayohan the more resilient and sheltered she will be by Spirit and the Great Mystery. Positive energy and polar bear power,

Christy

Sent: Saturday, September 30, 2006 3:21 PM
Subject: bin-nas-din nee-bish (falling golden leaves) in Toronto

Hello - Wachay,

Spring/Summer 2006 in Moosonee was wonderful and miraculous: witnessing the dramatic Spring break-up of the Moose River, nurturing a pumpkin patch and herb garden, hosting family and friends, building sand castles, and flying kites. When we were not enjoying the weather and wildlife Miyopin attended Science Camp and swim lessons while Nayohan continued her weekly chemotherapy, diabetes insipidus management, and healed.

We acknowledged the one-year of challenges our brave Nayohan surpassed with a Labour Day river-picnic, watching the birds before their migration south, and reviewing her thick medical chart. The water level was high enabling us to explore and reflected on the first autumn golden leaves, beautiful Miyopin started school, Don's summer holidays from work were over, and adorable Nayohan and I prepared for our September 21st Hospital for Sick Children appointment/MRI.

Unfortunately, this recent MRI showed the residual brain tumour to have progressed, aggressively; it has grown faster during the past three months than it had during Nayohan's first three years of life. More tests have revealed extensive spinal metastasis. These devastating results are a shocking and massive blow to our spirits: we have asked, received, and spent so much energy reinforcing the belief that the intracranial tumour would remain stable while on the vinblastin therapy as it had since October 2005. We were so confident that we would return home on September 24th. Plans have changed.

Don has taken a leave from work and each evening, at the hotel, Miyopin is embraced by the parent who is not at the hospital hugging Nayohan. We are a family in Toronto, confident that our polar bear cub is soothed by our adoring love and is receiving excellent medical care during the next few weeks. Nayohan is an amazing soul and together we have accomplished so much during the past year. Thank you. I can not explain the overwhelming emotions we are presently experiencing.

Please continue to send energy-love-prayers to our cherished daughters.

Christy and Don

Saraphine Nayohan Karly Cheechoo's Brave Journey with Cancer



November 1, 2002 -Born Weeneebayko General Hospital, Moose Factory, Ontario during the first winter storm of the season

September 3, 2005 - Medi-evacuated to Timmins; Admitted to SickKids after being diagnosed with a brain tumour & moderate hydrocephalus

September 4 - Right frontal endoscopy biopsy

September 12 - Surgical resection. Cancerous immature teratoma of the suprasellar region of the brain; Central diabetes insipidus with impaired thirst mechanism

September 30 - Insertion of central line & lumbar puncture

October 4 - First administration of chemotherapy

November 1 - Discharged as outpatient

December 9 - MRI: Residual tumour neither grew nor shrunk

December 27 - Admitted to SickKids with neutropenic fever

January 24, 2006 - Returned home to heal & continue to receive chemotherapy

January 30 - February 6 - Medi-evacuated to SickKids with neutropenic fever

February 22 - First administration of chemotherapy at Weeneebayko Health Ahtuskaywim

March 21 & June 1 - MRI: Residual tumour continues to neither grow nor shrink

August 5 - 40th chemotherapy

September 20 - 47th chemotherapy

September 21 - MRI: Residual tumour has progressed aggressively

September 26 - MRI: Extensive spinal metastasis

October 3 - First palliative radiation on back

October 4, 2006 - Nayohan's body passed away at 6am during a lightening storm


Fallen Angel

by Robbie Robertson and Martin Page

Are you out there Can you hear me Can you see me in the dark I don't believe it's all for nothing It's not just written in the sand Sometimes I thought you felt too much And you crossed into the shadowland And the river was overflowing And the sky was fiery red You gotta play the hand that's dealt ya That's what the old man always said Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one In my dream the pipes were playing In my dream I lost a friend Come down Gabriel and blow your horn 'Cause some day we will meet again Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light Fallin', fallin', fallin' down Fallin', fallin' down Fallin', fallin', fallin' down Fallin', fallin' down Fallen Angel Casts a shadow up against the sun If my eyes could see The spirit of the chosen one All the tears All the rage All the blues in the night If my eyes could see You kneeling in the silver light If you're out there can you touch me Can you see me I don't know If you're out there can you reach me Lay a flower in the snow

Sent: Wednesday, October 04, 2006 9:44 PM
Subject: to weep is to make less the depth of grief

There is sobbing to autumn, and it is the weeping of loss: Nayohan passed away this morning. Don, Miyopin, and myself were with her during her body's last breaths. Until she lost consciousness this morning she knew and could tell all who loved her; she was a whole child - a happy child. Nayohan was born during a storm and that is why we named her the Cree for "the four winds". Nayohan passed during a lightening/thunderstorm.

We will start our meandering northern journey home with her ashes this weekend. The enormity of what has happened to our family is to hold it at a distance until we can begin to grasp its awful truth, little by little, piece by piece. We are a strong family with a large positive support group - thank you.

"One who has journeyed in a strange land cannot return unchanged." - C.S. Lewis

"He who lacks time to mourn, lacks time to mend." - William Shakespeare

Miyopin and I have started a blanket box for our little Nayohan that includes her favorite denim bush hat, her wabusk polar bear toy, her quilts and pillows, tiara, bracelets, bravery necklace, and her JK Rowling correspondences. I would appreciate anyone who has read of Nayohan's brave life to send a card/post card/note (tangible to Miyopin) symbolizing the international support network that encouraged her bravery, please:

Saraphine Nayohan Karly Cheechoo
Box 38
Moosonee, ON P0L 1Y0

During the next few days we are grieving at the Delta Chelsea in Toronto and then our trip with my cell phone (xxx)xxx-xxxx. Every evening, I always check our home answering machine at (xxx)xxx-xxxx.

Thank you for all you energy and spirit,

Miyopin and Nayohan, Don and Christy

Sent: Wednesday, October 11, 2006 9:44 PM
Subject: the presence of her absence is everywhere

"There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go."

My heart aches - we miss our Nayos so much. Yesterday, the community held a heart-felt memorial service which inlcuded hymns, prayers, sharing, a drum song, and concluded with a feast. Thank you to everyone who has cared and shared our grief.

The following is the eulogy Carman Tozer delivered and a poem John Cheechoo wrote. I have also attached photos of Nayohan's bravery beads and her footprint.


Poem by John Cheechoo


Nayohan

A strong wind came upon us all one early winter̢۪s day
Its sacred breath delivered a soul for all to cherish and love
That special wind lifted our spirits filled with joy and pride
A new beginning with the first soft blanket of white down

The warm breath of that wind carried news mile upon mile
It sang through the trees as it spread throughout the land
Its breath opened our doors and gently rushed into our hearts
Here it stays to care for our fallen leaves, troubles and dreams

Delivered by love, delivered by peace and all things good
We are blessed to receive such an angel to bring us to ease
In all our moments of inner turmoil we must never forget
The sacred wind breathes upon us love, goodwill, and hope

Forever We Love, Forever We Live


Eulogy

Saraphine Nayohan Karly Cheechoo
November 1st, 2002 - October 4, 2006

The clock of life is wound but once,
And no man has the power to tell
Just when the hands will stop
At a late or early hour.
Now is the only time you own:
Live, love, toil with a will,
Place no faith in tomorrow;
For the clock may then be still.

Welcome, it is with deep regret that I am addressing you today - we have all gathered here to pay our respects to a wonderful, brave and innocent young girl whose clock was stopped with her life barely having a chance to begin.

Saraphine Nayohan Karly Cheechoo, daughter of Don and Christy and little sister to Miyopin passed away on Wednesday, October 4th after a yearlong battle with cancer.

Nayohan was born on November 1, 2002 at Weeneebayko General Hospital, during the first winter storm of the season. She was named 'Four Winds'.
I would like to share a teaching from Uncle James and Aunt Daisy:

The Cree name given to Nayohan is important. Her name and spirit will always exist.

Chee-wha-din - North Wind is a powerful wind, geese like flying in this wind, a long time ago this was a good time to hunt.

Moo-shaw-hadin - East Wind, this wind blows from far inland and out into the deep waters of the bay. The land, animals are calm and the geese don't fly in this wind.

Sha-wyn-nhen - South Wind, geese fly good, wind helps them to glide and it brings Neebin - summer and everything begins to grow again.

Naga-bah-hen - West Wind, geese like flying and the tide is high and rolls in like waves in this wind. Naga-bah-hen-noo-datch - the West long time ago our people believed that this was the place of our ancestors and loved ones who have passed on.

Nayohan leaves a gift for each of you. One of the many gifts is her name.

Nayohan's life started at the end of the autumn season and her first three years were spent growing uniquely just like each individual leaf develops on a birch or aspen tree.

Nayohan grew up doing all of the things that young children love to do, things that we all take for granted:

She loved playing house and playing doctor.

She loved the outdoors, boating and sandy beaches in the warm summer sun. Skidooing and sliding in the chill of winter, warming up and having hot dogs by a campfire.

She loved spagetti and sauce 'gettis' she called them. The smell of good food cooking would have her rubbing her belly and saying 'mmm'. She learned to ask for seconds even before she could talk by pointing at her sister's plate of food.

She loved playing princess and wearing her tiara, attending balls with Miyopin and dancing in the living room. She would dance and turn like a leaf in the breeze - whirling in slow fluttering circles.

She loved 'knock - knock' jokes and soccer. Nayohan version of soccer was being carried instead of running after the ball herself - enjoying the bouncy ride instead.

She loved animals - Polar Bears, most of all.

She loved laughing and had one of the warmest smiles.

She especially loved her family - her big sister and role model, Miyopin, her Dad and her Mom.

In Autumn are the days of colour, where leaves take on beautiful hues of red, gold and orange - they charge the mind and spirit with colour and warmth against the coming white and cold. Each leaf seeming to say 'enjoy me while you can.'

Nayohan's brillant glow of courage and resilence have touched us all during her brave journey with cancer.

During the September 2005 holiday weekend Nayohan, with symptoms of hydrocephalus, was medi-evacuated from Weeneebayko General Hospital in Moose Factory to the Toronto Hospital for Sick Children, via Timmins General Hospital. A September 4th MRI confirmed a massive brain tumour which had grown throughout her three years of life. On September 12th, the phenomenal neurosurgical team was able to remove 90% of a golf-ball sized tumor from of Nayohan's brain.
As a result of the physical trauma to her brain Nayohan developed a very rare, permanent, and life-threatening condition of central diabetes insipidus. The day-to-day management of this condition was essential in maintaining her health.
A year-long regimen of chemotherapy was prescribed. On October 4, 2005 Nayohan received her first administration of chemotherapy. On November 1, she was discharged as outpatient from Sick Kids. Her first MRI was optimistic,on December 9th, the residual tumour neither grew nor shrunk.

On January 24, 2006. a very happy day, Nayohan returned home to heal & continue to receive chemotherapy.

She received her first administration of chemotherapy at Weeneebayko Health Ahtuskaywim on Febraury 22, 2006.

The subsequent chemotherapy treatments and mangement of the Diabetes Insipidus appeared to have all in control. The March 21st & June 1st MRIs show that the residual tumour continued to neither grow nor shrink.

Life for Nayohan was all about growth, healing and loving. Her little leaf during this time was held in suspension, not quite sure if it was time to change.

On September 21st, the shocking news that the MRI show that the residual tumour had progressed aggressively and follow up testing revealed extensive spinal metastasis.

Autumn comes without warning at a time when the lushness of life may seem to be beginning to wane, even though it seems there is endless time and the warmth of life must go on forever.

On October 3rd Nayohan had her frist palliative radiation on her back.

On October 4th, at 6 am Nayohan's body passed away during a lightening storm. By her side her family.

At the very top of a tree a magnificent crimson single leaf danced and turned in a sudden breeze, then separated from the branch. It whirled in slow fluttering circles down to be the little crimson flag on the solid green of a hillside. It has responded like other leaves, that, whatever the combination of circumstances, waning sunlight had hastened it's change. The brilliant leaf will turn to duff and soon will be part of the black humas underneath, lending its richness to the earth and colour for autumns of the future.

Nayohan may the wind take you home..

Love knows no limit to its endurance,
No end to its trust, no fading of its hope;
It can outlast anything.
Love still stands when all else has fallen

Sent: Wednesday, November 01, 2006 5:20 PM
Subject: how far the little candle throws its beams

Miyopin had a wonderful Halloween yesterday. She had two costumes (princess by day - bat by night) and returned from a chilly trick'or'treat-ing with a bagful of sugar. Yahoo!

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love. Washington Irving

The heart ache of Nayohan's physical absence is like the infinite transforming sky; today's windstorm coincides with Nayohan's 4th birthday. We are lighting candles this evening symbolic of her presence in our hearts and to commemorate her courageous life-fire. Please dedicate a lit candle, too - many small flames together make for a greater brilliance. We are learning that bereavement is an individualized and slow process; we will weather the storms as a family by the illuminated memories of our little polar bear and by the warmth of everyone who has extended their hearts. Thank you.

I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death. Robert Fulghum

We are doing okay,

Christy

Sent: Wednesday, October 31, 2007 7:22 PM
Subject: Nayohan Cheechoo


We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly Cheechoo
in our hearts and to commemorate her courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for a greater brilliance.

November 1, 2002 - October 4, 2006

Sent: Thursday, November 01, 2007 8:45 AM
Subject: Amazing Moosonee

Wachay

I spoke to Bad Willie a week prior to his death - I said to him

" if there is no miracle for you - and you find that there's something on the other side - find my daughter and ensure that she is good - give me a sign on her birthday - she was born in a storm and her name represents the wind - I need to know."

He said that he understood and that he would.

We spoke to each other almost every week since he was diagnosed with cancer and throughout his ordeal with chemotherapy. He started to understand many of the emotions and behaviours that my family displayed during Nayohan's illness. He said he got courage and strength from Nayohan's own bravery, strength, and, in a surprising way, her wisdom.

The last time we spoke I think he knew it would be last, as he was sincere that he would make every effort to find Nayos and let me know that she was good.

Nayohan's birthday is today and there's a wind storm with blowing snow.

Coincidence or confirmation?

Sent: Monday, November 05, 2007 8:23 AM
Subject: Fw: Amazing Moosonee

I wanted to share with you this email Don sent this to his siblings this morning. His eldest brother died of cancer last month.

Wind warning for: Moosonee - Fort Albany
Issued at 5:09 AM EDT THURSDAY 1 NOVEMBER 2007
..STRONG WINDS THIS MORNING.


Sent: Thursday, October 30th, 2008.
Subject: how far the little candle throws its beams

Nayohan Cheechoo

We are lighting candles the evening of
November 1st
to symbolize the presence of
Saraphine Nayohan Karly
in our hearts and to commemorate her
courageous life-fire.
Please dedicate a lit candle, also.
Many small flames together make for
a greater brillance.

November 1, 2002 - October 4, 2006

My heart aches for our little Nayohan.


Thursday, October 23, 2008

No energy, no mojo . . . .

I've been feeling very tired this week and I don't know why. It feels like all the blood has been drained from my body. The only way I can get any energy is taking small naps, drinking large amounts of coffee, etc. I could stay in bed all day if I allowed myself. I had a seizure early Monday morning and I just haven't bounced back from it. I called in sick for the first four hours of my shift on Monday, but I made up for it by staying for 4 hours afterwards. Today, it was too much. I just decided to stay here all day and try and rest. I haven't been able to run since Sunday, but I'm going to try tonight if I get enough rest.

Thursday, October 16, 2008

Nearly forgot about this little slap in the face . . .

I got this letter from my neurosurgeon (actually, a form letter with just my name written in) just before Thanksgiving. It made me laugh and steam at the same time. I guess all I can do is laugh. If anyone doesn't want to go back and read the past year, I'll give a short summary:

I have a vagus nerve stimulator implanted in my chest to help lessen my epileptic seizures. The battery in my old one went dead last year and I needed this surgeon to replace the whole unit. I waited 5 whole months from when my neurologist told the surgeon about it, until it was done. It was an "urgent" surgery (ha ha ha). The surgery was even cancelled, with no apparent notice, the night before in October 2007. My seizures got significantly more frequent and serious as I waited for surgery. I ended up not being able to leave my house for 3 months due to seizure frequency. I finally had it done in December of 2007. The surgery ended up being botched in some way (ha ha ha), and the stimulator ripped through the bottom of the "pocket" in my chest, leading to the wires into my brain PULLING when I move my neck. It needed to be fixed to prevent either wire breakage (dangerous) or nerve damage (dangerous). I signed the consent in March 2008 (3 months after the initial surgery) and to this date, I am still waiting with not a WORD from the surgeon's office.

Did I also mention that when I saw the surgeon for the second time, that I should just "get used to it," and "not move my neck?" He also said that he had seen worse "disfigurements." I wasn't even worried about the "disfigurement." I was worried about the warnings my neurologist told me (he is the expert in this technology) about the vagus nerve being severed or damaged by the tension and the wire breaking and possibly cutting the carotid or jugular. That's what I was worried about. I wasn't even worried about the constant pain I have over the stimulator site as it moves loose in my chest, ripping scar tissue with movement, and the swelling. All I was worried about was the dangerous stuff. The surgeon didn't want to do the surgery initially, until I told him I trust my neurologist and I am going with HIS recommendation.

I ended up telling my neurologist on my last visit that I was getting a little frustrated with my life being on hold for a year and a half (the initial wait for the replacement and this wait for the repair). I said that maybe everyone just assumes that, as an epileptic, the surgeon must assume that I am not working and can afford to wait endlessly. I also made a polite phone call to the office (got the answering machine) stating that I would like some news on a potential date or timeline, as I have a career and would like to make future plans.

I ended up getting this letter after the inquiry through my neurologist and my personal inquiry:

(dated June 2008, but received in September 2008)

Dear Carrie (Carrie written in pen, the rest a form letter),

We are writing to let you know, that we fully understand your frustration and disappointment at the length of time you have been on our elective waiting list. In addition to the ongoing pain and discomfort that you are enduring, we realize that waiting for a surgery date also results in changing personal arrangements made with the workplace, home environment, relatives, etc.

We also hope that you will understand, that the specialty of Neurosurgery is one that deals with many life and limb threatening emergencies i.e. brain hemorrhages, tumours, strokes, aneurysms, etc. Our speciality is very unpredicatable, and obviously, patients with more serious illnesses, must get priority in the operating room. Also, our speciality has insufficient access to operating room time. This shortage has impacted all of the neurosurgeons practicing in Ontario.

Despite these problems, the elective waiting list for neurosurgery is considerably less than that for other specialities i.e. orthopaedics, where the wait for hip and knee replacements is over 12 months in most centres.

We continue to monitor our waiting list every week, and have not forgotten your case. We attempt to be fair in evaluating patient priorities, and you can be reassured, that we will contact you directly when a date is available. Thank you for your ongoing patience.

Yours very truly,

[surgeon]

[secretary]

I love how this letter makes it sound like I am getting a mole removed and I should just wait like a good little girl. I am very, very lucky my employer has kept me on, not doing direct patient care for over a year now.

Sooooo frustrating. I hope he doesn't decide to do this after January (when I start my 1/2 marathon training). That would really, really, suck.

Thanksgiving at the fam's farm . . .

I had a very nice visit at my parent's house for Thanksgiving. I didn't get any running in, but got to go hiking/running/walking on the bush trails. I ate way too much (what everyone does during Thanksgiving) and enjoyed visiting everyone. All in all, it was a peaceful interlude outside of Ottawa. Tomorrow, I get back to the grind!

Saturday, October 4, 2008

Week up to now . . .

I've been having an up and down week. The beginning of the week started with alot of pain in the chest around the incision area and a growth of swelling around it. It was probably some adhesions and scar tissue ripping. It was really achy and the sharp pains came back, and now the pulling is back in full force on the wire up my neck. Makes me focus back on that!

My running has been going really well. I've been slowly increasing my distance and my pace has slowly increased. Hard work and consistency really pays off! On the down side, my right IT band along my right thigh down to my knee is aching. I have been doing some stretching and self massage, and hopefully it will loosen up. I've been reading how I screwed it up and am following the advice I am reading from running magazines and on www.runningmania.com.

The middle of the week, I had my first day of more than one seizure in a day in a long time. I had two seizures on Wednesday. Oh well, I can't expect everything to turn up. I will not let that get me down. My successes in running have negated that.

I hope to improve again next week. I only work Monday and Tuesday since I am taking a week off for Thanksgiving starting on Wednesday.