A grave marker

Rest in Peace 

Nancy Lynne Lyon

Do not stand at my grave and weep,

I am not there; I do not sleep.

I am a thousand winds that blow,

I am the diamond glints on snow,

I am the sunlight on ripened grain,

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry,

I am not there; I did not die.

When I come to the end of the road

And the sun has set for me

I want no tears in a gloom-filled room

Why cry for a soul set free?

Miss me a little-but not too long

And not with your head bowed low

Remember the love that we once shared

Miss me-but let me go

For this is a journey that we all must take

And each must go alone.

It's all part of the Master's plan

A step on the road to home

When you are lonely and sick of heart

Go to the friends we know

And bury your sorrows in doing good deeds

Miss me but let me go.

Ashes to Ashes

We buried your ashes on Friday December 7, 2012 surrounded by our family.  We buried your ashes with one of your beautiful scarfs that still smelled of you.

Jenn helped me read the following tribute to you that morning....


"I have fought a good fight.  I have finished my course.  I have kept my faith.  The soul that suffers is stronger that the soul that rejoices.  Her mission on earth fulfilled.  Everyone's life is a plan of God.  
Step softly a dream lies buried here.  To act justly, to laugh tenderly, and to walk humbly.  Life is a voyage that is homeward bound.  Step softly for an angel lies here.

Step lightly a dream lies here, Nancy dream, a dream where love never ends and love never dies.  All the impertinent things like sickness and death, grief and pain will eventually pass away leaving only love to remain.
I have found it difficult in the past 9 months to remember our mom, our Nancy in fond loving memories as the sick memories prevailed and were far to close to the surface for too long.

As we bury your ashes here today, let us also bury the sick memories.  We will replace them in our hearts with only the wonderful memories that we have all shared together.
Memories of you as a mother, daughter, as a sister, an aunt, as a wife and as a very true friend.
For those of are the memories I would like to carry with me.

So today we bury your ashes along with the memories of cancer.  The memories of Toronto Western Hospital and Princess Margaret Hospital.
Today we bury the memories of stupid brain surgeons, chemotherapy drugs and radiation.

For I know you would not want us to remember you like that.

From this day forward only the good shall remain.  Only your wisdom and loving nature, only your sound advice and your warm embraces, only your laughter and your calming words.

Today we will close the chapter on grieving to allow only your love into our hearts and into our souls.
To be able to move forward to live a life that you would be proud of for all of us.

For this here, is only your physical being, as your spirit lies in all of us, directing us where to go when we feel lost.
I pray for love and I pray for peace and I pray that no one ever has to feel like we have since you've been gone.

As we remember my mum, our Nancy.  I only wish that we can continue to share our stores of how she touched our lives.
Let us celebrate Nancy life by always telling these stories.  Let love be the story that we carry forward from this place.

I ask you now to close your eyes and imagine that we are all at the sea shore.  It's a place that my mother always loved, she even bought books about it.
I want you to imagine that we are all standing upon the sea shore, the warm wind at our face and the smell of sea salt in the air.  There is a ship at our side, she spreads her her beautiful while sails in the morning breeze and starts off to the blue blue ocean.
She is an object of beauty and of strength.  We stand and watch until at last she hangs like a spec of white cloud just where the sea and sky come down to mingle with each other.
And someone whispers "there she goes".  Gone where?  Gone from our sight, that is all for she will always be with us in spirit.  And just at that moment when someone said "there she goes" there are other eyes watching her, like guardian angels.  The eyes of Nana and Papa, the eyes of her father, of Joan and Budd, Susan Cross and Dean and everyone who has gone before us.  For they are saying "Here She Comes', and welcoming her with warm embrace.

Mummy I think of you everyday.  Sometimes, if I am lucky enough I see you in my dreams.  Sometimes all I feel is a slight tingle or shiver down my spine and if I stop and pay attention I realize that you haven't gone that far at all.  So please...step lightly for an angel lies buried here.  Rest in peace my dear mum.
We love you always."

Now there is a physical place that we all can go when we feel like you are too far away.  Although we carry your heart and your spirit inside of all of us.
There are two lovely wreaths marking your grave site right now as we wait for the tombstone to be ready.  There is also a little part of you in the Angel on top of the Christmas Tree that we all helped decorate.  We thought you would like it up there for a while.

Love you.

I really miss you

Ive re-read the blog a number of times now.  Some of the posts bring me back to when I was sitting right beside you.  I talk to you everyday, in hopes that you are listening.  In hopes that, in some way, you will give me a sign and point me in the right direction.  I've lost my best friend, the one person I confided in the most, the one person, who knew me better than I know myself.  I haven't cancelled your cell phone yet, and I call it just to hear your beautiful voice.  I don't cry everyday anymore but just usually in my car randomly on a day that I thought I felt fine.  I use Isomers cream on my face and think that you would want me to continue using it so I don't get wrinkles.  I don't know what to do with your stuff.  Because now it's just stuff and even though I know you loved all of it...I don't know what to do with it.  I think I'm supposed to send thank you cards to all the people who were so good to us after you passed but I can't bring myself to send them or even finish writing them.  I hate that my thoughts and memories of you are sick ones and I wait for the day that I can remember you without thinking of Toronto Western hospital and all those stupid brain surgeons.  I wait for the day that I can drive past that hospital without my heart starting to race and thinking of all the things I should of said, would have done differently.  I find myself searching your Facebook page or reading through emails I received from you.  We had such a lovely life together.  I know you wouldn't want me to continue being sad and I know you want me to be okay and for the most part I am.  I just hate that your gone.  I miss your laugh, your voice, your hello, your good mornings, your drive safely's.   I miss your planning and dinners at our house, I miss your phone calls and our plans, I miss your smile and your sound advice.  I miss your stories and your hugs and cuddles.  I miss you so much it hurts.  I hate how certain people have been ridiculously judgemental, so much so that I wonder if anyone was that judgemental of them when they lost someone very dear to them, you were never judgemental.
I hate cancer and what it did to us.  I hate that you had to suffer so much, I hate that I had to make the decision to sedate you because the pain was too much, I hate that you died right beside me and I couldn't do a god damn thing to change the result.  I hate that I think I'm okay and I know I'm not.  I cry knowing that I'm killing the orchid that Jane, Bob, Sherri and the team and MAD bought for your funeral, every time a flower falls off I think of you and how you would have kept it alive.  I hate that I still don't know how to make some of your best recipes because you were going to teach me and we never got the chance.  I hate that cancer invaded our lives in such a way that I feel like someone stole you from me. I hate crying all the time.  I hate when people say time will make it better and to give time some time.   Time doesn't change a thing, maybe you just learn how to deal with it a bit better but right now it's hard to see this getting any easier.  Sometimes when I think of you, a tingle runs through my body and I know you are sitting right there next to me, so maybe that is all I can hold on to.  A tingle, a feeling like maybe I am not completely alone.
I love you mummy....and I miss you like crazy.
XOXO
Love you always
Keryn

Donations

In lieu of flowers, donations can be made to The Palliative Care Unit at Princess Margaret Hospital.

Princess Margaret Hospital
care of: Palliative Pacers Fund

My mum loved flowers and told me that she wanted lots at her funeral and we have made sure that this is going to happen thanks for her loving friends at MADD - Jane, Sherri and Robert.
Thank you from the bottom of our hearts!
XO

Nancy Lynne Lyon

The world seems a lot less brighter to me these days

I know the sun will come out again

Though nothing will ever really be the same

I miss you so much already
XOXO

NANCY LYON (nee OLSEN) August 12, 1949 - February 14, 2012 Passed away peacefully the morning of February 14, 2012with her family by her side. Loving mother of Keryn and Ryan. Precious daughter of Beatrice. Beloved wife of Ian. Missed by her sister Susan, brothers Richard and Wayne and nieces and nephews. Visitation to be held at PINE HILLS CEMETERY & VISITATION CENTRE, 625 Birchmount Rd., Scarborough (north of St. Clair Ave., 416-267-8229) on Thursday, February 16th from 2-4 p.m. and 7-9 p.m. A Celebration of Nancy's Life will take place in the Pine Hills Memorial Chapel on Friday, February 17th at 1 p.m. Forever our Valentine, always in our hearts and souls. Love forever.

Connie...

Mum has many friends, lovely and kind people who have been very supportive through this journey.  Her friend Connie send me a beautiful note that I wanted to share.  (I did ask permission before posting).  Thank you again to all of you for your kind words, gestures and support you have all offered time and time again.

I took a little break from the blog for a while, just didn't have much to say.  Thanks to Connie, the blog has a fresh post and a great photo that was taken at the Andrea Boccelli Concert.
Enjoy...

Connie's Note:

As I get older, I realize that I have trimmed the fat when it comes to friends.  I still have my close-to-my heart friends that I’ve had, in one case for 60 years.  People I have met along the way, at different stages in my life journey, became friends-of-the moment. Good friends, some I still keep in touch with.  But the close-to-my-heart friends remain constant and few.  Once and a while, someone walks into your life and bam!  They become a close-to-my-heart friend.  Nancy is one of those to me.  We clicked, plain and simple.  As we started working together, we recognized our similar values, sense of humour  and outlook on life.  To me, it was the same excitement of a new love.  I loved to see her beautiful, smiling face, as she walked in the door at TGSL, laden down with all her bags.  I couldn’t wait to tell her what was new with me since the last time I saw her, or show her the latest pictures of my grandkids.  I anticipated her recounting her latest events, and it was always a lively exchange.  Every other Friday became Nancy day.  Then we stepped out of the work environment, and went shopping, or for a glass of wine.  We sat on my balcony or scrap booked at her apartment.  I was thrilled to be on her wedding guest list and was moved by the love and warmth of her family and other friends.  Nancy is a close-to-my heart friend.  I hope for miracles.  I pray for peace.  I thank God for bringing her into my life. 

xx

Just a thought.

The expression “everything happens for a reason” annoys and upsets some people because it suggests that our path is predetermined and that The Fates or God is in charge of our life. The idea that my beautiful, perfect, angelic mum is terminally ill with cancer, is meant-to-be is frustrating and unfair; but the reality of it is that we have no control over our outside world. So I choose to think “in everything I have to find my own reason”. Instead of asking “why did this happen to me?” I ask myself “What positive thing can I find in this?” By focusing on the positive of any situation (and trust me if you look hard enough you’ll find it) I help keep myself positive and happy.

I still remember what the lady at Wellspring said to me when we went into to get some help after mum's initial diagnosis.  I told her that I was upset because this massive unfairness in our lives has changed me indefinitely and that I would never be the same again.  She told me that we have not changed as a family nor have we changed as people...we are still the exact same as we were before all of this entered our life...the only thing that has changed has been our
situation...I wasn't planning on sharing this picture but it's just how we felt at the time.  We've had lots of laughs since this time....

The good wouldn’t be as sweet without the bitterness of the bad. You go through the tough times to strengthen you for the excruciating ones to come. It’s in experiencing these tough times where you will truly be able to live with gratitude for what you have that is good.

“Some people feel the rain. Others just get wet.”

~Bob Marley

Sleeping Beauties!

I walked in mum's room only to find this little moment of pure peace.

California

A few years ago while I was still working with Four Seasons Hotel group I was sent to Aviara to attend a conference for sales managers.  I decided to invite mum along with me to the conference where she could hang out at the hotel, eat in the restaurants, sit by the pool and enjoy some time with beautiful surroundings while I did the 4 day seminar.  Typically Four Seasons allows your spouse to come with you to things like this but considering I didn't have a spouse, I figured my mum was a perfect alternative.  (I didn't even ask permission)

The plan was after the seminar was finished that we would rent a convertible and drive up the coast from Aviara to San Francisco and stay at as many Four Seasons Hotels as we could.  We did just that and had the most amazing time together.  It was truly a wonderful holiday.  We did everything that we both loved to do.  We shopped and ate good food, toured all the cities that we visited and drove that fancy red mustang convertible.  We stopped along the way to take in the beautiful scenery, and ate fish cakes and seafood at local seaside restaurants.  We found this fantastic outdoor outlet mall and spent hours looking in all the stores.  I navigated while she drove and we laughed a lot and created great memories that we now talk about a lot.

We've been on many trips together, New York, Nevis (West Indies), California, Florida, Las Vegas, Montreal and quite a number of trips across the border for shopping in Buffalo.  I just feel lucky that we got to share these great times together then so that we can talk about them now.

We had the loveliest dinner this night at a restaurant in Santa Barbara overlooking the ocean wearing all of our new clothes we bought at the Outlet Mall.  

Mum infront of one of my favourite trees...which I dubbed...the tree of live.

A Post From Auntie Susie...

A very wise woman told me, love your children,
tell them they are smart, beautiful, important and the world is their oyster.
That is one of the many pearls of wisdom Nancy has taught me.
As our incredibly hopeful, heartbreaking, sad and very scary journey continues
I have witnesses what smart, beautiful, brilliant, devoted and loving children my sister has given us.
I lovingly watch with admiration as Keryn and Ryan never leave their mum's side day or night.
Keryn, who we fondly refer to as Nurse Cratchet is really the angel nurse knowing

what Nance needs even before she asks for anything.  A gentle hug, words of encouragement,
a warm facecloth, a silly story, a snuggle, a liaison or just Keryn being Keryn.
Loving, kind, thoughtful, strong, funny, in charge and above all,

she expresses a kind of love and commitment only a very special daughter has with her mom.
Our dear sweet boy Ryan, he is our rock, slow and steady wins the race.

He is kind and loving but tough when he needs to be.

He works with Nance to build up her legs so we can run, not walk out of the hospital.

He stays all night and watches over her while she sleeps and assures Nancy that

Keryn knows what to do and so does he.

Although Ryan is our quiet boy, his heart speaks volumes about the love and commitment he has for his mom.

I love Keryn and Ryan with all my heart and I am proud to be Auntie Susie.

And here is the bud of the bud in this tree called life.

Nancy is proudest to be a Mom who is loved unconditionally by two of the most amazing,

smart, beautiful and important kids, Keryn and Ryan

Love you (Nancy)

Love you More (Keryn and Ryan)

Not Possible (Nancy)

Love

Auntie Suz 

& 

Mom

Transferred!

We were told today at 1PM that mum was on a waiting list for a bed at Princess Margaret hospital but that beds often take a while to secure.   By 6PM tonight they had found a bed and mum was transferred by ambulance to PMH.  Here she will recover from her most recent surgery and we will meet with the radiation oncologist on Monday morning to determine when radiation will start.

This is a good thing.  The Neurosurgeons at TWH will follow her progress and believe that it is in her best interest to begin whole brain radiation as soon as possible.  We are happy about the speediness of this transfer and of course like anything else in this journey apprehensive of the next phase of treatment.

Mum has been in pretty good spirits.  She certainly does want to go home but maybe being moved to PMH will at least allow her to realize that she is that much closer to going home and be a change of scenery for all of us.  I was getting really sick of Toronto Western.

Any questions, please feel free to call me.  Of course if I don't answer right away, just leave a message and I will call back.

Looking forward to seeing many of you and thanks again for your ongoing support.

XO
Keryn
PS - Happy Ukranian/Russian Christmas.

"Not Possible"

I've started this post about 15 times now.  Not quite sure how to begin so I'll just take a stab at few things.

Nurses in general are truly special people, male nurses however have continued to surprise me with their gentle strength and calm, caring nature.  We have had such amazing nurses that mum talks about long after their shift is over.  Thank you to Nadia, Marcia, Anne, Sean, Sean 2, Hank, Zania, Rose Marie, Sheila, Beverly, Trishia, Jennifer, Rihanne, Eva, Trudy, Daisy, Connie...all of them.  So amazing at what they do!  

Neurosurgeons also tend to amaze me...in strange ways.  They slip in at the exact moment right before we get to the hospital or when you run down to get a coffee, and they are gone in the blink of an eye.  Very busy folks and hard to track down.  Masters at the art of deflecting questions so you really don't feel like you know anything more than before they arrived.

Mum's neurosurgeon today is a big burly guy, young, but senior in his role.  He has the most personality and bedside manner out of all of them in my opinion.  He's positive and kinda loud and boisterous and for some reason I trust him.  He came in today and told us that unfortunately the shunt that was put in on January 1 would have to be re-done.  Not the whole thing but just the brain part.  Of course...just the brain part.  

I found myself in a familiar place at 1PM sitting with mum in pre-op waiting for her 4th brain surgery/procedure/operation since November 24.  God willing her last.  

As always, she came out of it just fine.  The Doctors didn't have great news after the surgery, but not all bad either.  It's a hurry up and wait game...and the waiting continues.

There is a possibility that Mum will start radiation next week and be transferred daily to PMH to have the 1 hour of treatment over the course of 10 days.  We are waiting to find out when that starts.

As for Nance...she is doing well.  She looks good, with lots of colour in her face and beautiful skin.  She asked me today "how do you cope with all this Keryn?  Because it's a pain in the ass".   I responded "with lots of hope and because it's what you would do for me".  "Oh okay" she said.  

Ryan works with her to build strength back in her legs and she told me that "Ryan knows how to do it best".  Thank goodness for Ryan.

I still read her emails that you have all sent and we go back and read the blog.  The other day we watched an episode of Mad Men together.

Suz lovingly calls her sister "Evil Twin Twoozie" because my mum seems to do everything is 2's.

Nancy had 2 kids, buys most clothing or pairs of shoes twice, has two ice cream makers, and believe it or not has 2 crazy christmas hats amongst many other things.  So it's not really surprising (and kind of makes us laugh) that she has had 2 lumbar punctures (both awful), 2 shunt operations, 2 sterile hats that she's had to wear.  Evil Twin Twoozie strikes again.

And forget hospital food.  Suz will call us at the hospital and get Mum's dinner order.  Typically Salmon with Lemon Beurre Blanc and Couscous and always brings something yummy for dessert.  Often Ryan, Jenn and I (even Erin) will enjoy the left overs.  It's pretty cute.

So all in all, it was an eventful day.  Better days tomorrow.  Take the good with the bad.  Celebrate the good times, hold on during the not soo good ones.  I'll end off tonight by a saying that my mum has always said to me and continues to do so through this entire time...enjoy and goodnight.

Keryn:  I love you

Nancy:  I love you more

Keryn:  No, I love you more

Nancy:  Not possible

A very personal note from Ian . . .

The hours click by so slowly and one day blurs into another . . . 

I was in my car on the way to get groceries when the musical tone signalling a call from Nancy’s iPhone rang. It was Nancy asking me where I was. After confirming that I was not able to talk, she said “Call me” and hung up. My stomach turned to ice and I turned the car around and went back to the condo. A quick call and the worst fears were confirmed. Late stage kidney cancer . . .

What has ensued since that awful day has been a mixture of sadness, elation and an improbable celebration of the true depth of the human spirit. I have witnessed first hand what it means to have a family, and what a family this is! They have supported and rallied around her in a way that I could never have imagined personally. Keryn’s beautiful blog will have given you an insight already to this, but to me it has been a revelation. There is always somebody at the hospital. There is always food, drinks, laughter and tears. There is always somebody to smile, hug and express amazement at our dear Nancy’s strength and will at fighting every new setback that seems to come daily. I’m truly humbled that events came about so that I could become part of this amazing family, and every day I thank the Guardian Angel whose guidance arranged that fateful meeting with Nancy all those wonderful years ago and resulted in our marriage two years ago. The time I’ve spent with Nancy has been the happiest of my life and with Nancy’s spirit and new medical advancements, I’m now certain that there will be many more.

Below is a photo of a small stand with a pair of Nancy’s shoes on top, to remind me of her every hour of the day.

They will stay there until she walks into the condo by herself, and walks out wearing them . . .

Loving husband and soulmate . . .

Ian

Movin' on up...to the 5th floor that is

Nancy was transferred yesterday out of the Neuro Critical Care Unit yesterday and she is now back up on the 5th floor in the same ward we were in the first go around.  We know many of the nurses and they know us.  It's truly a relief because now we can focus on getting her moving around again and we are one step closer to getting her home.

Dr. Bernstein decided to internalize the cranial cathadar on Sunday.  This procedure, called a Cerebral Shunt takes approx. 3 hours and includes inserting a very thin tube from the ventricles in the brain down into the abdominal cavity which the fluid would then be reabsorbed by her body.  We were so happy see see her on Sunday night with no sterile hat and a lot less tubes.

Right now she is very sleepy, which is pretty normal as she went through a period where she wouldn't sleep at all.  Her body needs rest and recovery time in order to feel better.  She really has been through the ringer with everything in a very short period of time, so this is to be expected.

Ryan and I have a day shift and a night shift and we rotate so that she is very rarely alone along with an awesome network of friends and family who have been very supportive.

I will keep on updating as we move forward with recovery and treatment.

XOXO
Keryn

Progress

Hi All,
I finally feel like I have an update for the blog. It's hard sometimes to figure out what exactly to say especially with a positive spin. To say the past week has been difficult is an understatement. My mum, my brother, my family and I have been through hell and back but there are so many hopeful signs that things are getting better.

Mum had the cranial cathedar put in last Wednesday night and has been recovering since then. Today she started eating again and also got up for the first time tonight with the help of her awesome nurse Sean. Tomorrow we will meet with Dr. Bernstein and some of the other neurosurgeons to discuss our next plan of attack. We hope to be able to remove the cathedar and that her ICP will stabilize on it's own and she can take some time to get stronger before beginning anything else. We are still waiting to hear their opinions and of course they give you options and suggestions on what to do, so we have our questions prepared to ask tomorrow to determine the risk/benefit ratio. I have noticed through this entire process is that there is always a risk/benefit ratio and we now feel better prepared to ask the important questions that we need to know.

I hope everyone had some time over the holidays to think about what is really important in life and took the time to enjoy it, whatever it might be to them. I can truly say that all of the presents that are still sitting under our tree right now really don't matter in the least unless all the people you love are there to share it with. I feel lucky because I will never look back with regret wishing my family would have spent more time together because we've always done just that.

Looking forward to another good day tomorrow and eventually bringing mum home. Thank you truly to everyone who has called, emailed, visited, lit candles, prayed and sent positive thoughts to Nancy. I like to believe that along with her own strengh and will to fight, she is overcoming this latest hurdle.

Lots of love to everyone.
Best wishes for a healthy and happy New Year in 2012.
XOXO Keryn and family!

What we know thus far...

It's hard to put into words the events of the last two days so I am just going to bullet point the important bits.

• Mum is still in the hospital
• She has been experiencing strange side effects since December 7 and we have been back to the hospital numerous times to try and figure out what was going on.
• The first visit (Dec 8) she was re-sutured at the base of the incision due to CSF leak and sent home
• The second visit (Dec 14) she was told her headache was caused by weening off the Dexamethasone and Codeine and sent home
• The third visit (Dec 18) they re-sutured the entire incision site and kept her for observations.
• Monday the Doctors still didn't really know why this was happening.  Maybe she might need a shunt put in to relieve CFS fluid that they thought might be building up in her head but that was another intrusive surgery to the brain so they held off.
• Tuesday her symptoms got a bit worse and the Dr's decided to do a lumbar puncture (spinal tap) to see what the fluid would tell us.  The first attempt was painful and unsuccessful, the second attempt was painful yet successful.  
• Wednesday AM we were informed that although her white blood cell count and CT scans have both shown to be normal they used the CSF fluid removed during the lumbar puncture and detected an infection in her head called Bacteria Meningitis.
• She was put on an antibiotic to fight the infection but her symptoms and pain continued to worsen.
• Neurosurgery was called and the Dr. came in to tell us that they would have to relieve the pressure in her head by putting a cathader in her head as they could not do the surgery for the shunt at this time due to the infection.  (To my understanding both of these procedures do the same thing except the shunt would be internal and allow the fluid to drain down the spinal cord and the cathader drains it externally from the head into a bag).
• She was sent for another CT scan and all of her blood work was taken and tested again.
• By 8:30 she was transferred back to Intensive Care and prepped for the cathader surgery.
• The surgery itself only took 30 minutes and although seemingly a success there are a few other factors that she is now dealing with:

1. Her blood platelette count is very well, due to the blood thinner medication she was on (Heparin) this could cause an issue called HITS which I don't know much about because it's the first I've ever heard of it.  She will meet with the Thrombosis Doctor on Thursday to figure out what to do about that.
2. There is still pressure in her head - need to figure out what that means
3. The infection needs to get under control as well - antibiotics should help this.

• She is now in ICU step down unit recovering with a single nurse Connie watching over her.
• She said she's not in a lot of pain but just antsy and wants to move around which she can't at the moment.

That's all I got.  Looks like Christmas will be coming to Toronto Western this year and truly all I want for the holidays is for my mum to get better and come home. 

Automatic Pilot

As Jane tells me, I am currently on Automatic Pilot mode.  I believe her and I think we all are in a way.  Sometimes my my mind wanders back to when I was a kid in grade school and mum used to send me to school with gourmet lunches...better than a stinky old Peanut Butter and Jelly on Wonder Bread and a fruit roll up.  We never got to have fruit roll ups or cans of coca cola...EVER.  Instead my mum made black forrest ham and havarti with sprouts on fresh baked croissants or kaiser buns, with Allen's Apple Juice boxes and if we were really lucky we got those chinese sweet buns with the hot dog already baked inside (they were Ryan's Favorites).  On occasion there would be notes in my lunches.  Sweet littles notes from mum that would say "good luck on your spelling test" or just merely "I love you".  I can remember sitting on the portable stairs in grade school opening up my lunch to find a letter from mum with such sweet sayings.  

On to the present...mum is currently back at Toronto Western Hospital.  We went back this morning and they admitted her due to some leakage from the incision site again.  She is pretty good spirits but we would really like to get this under control.  We met with the head of Neurology last Monday and it was a good meeting, unfortunately we've been back to emergency twice since then.  We will meet with him again tomorrow morning to figure out why this is happening and what we need to do next.

Radiation was originally scheduled to start Monday December 12 but was pushed back to now start December 27th and we will have to see if that plan has to be altered once again.

I will try to update the blog a bit more to keep everyone informed.

Keryn

Latvia and Beyond...

Dear friends, family and blog followers from Latvia (no seriously we have page views from Latvia). We had a little glitch in our recovery and decided to take a trip back to the hospital where Mum had her brain surgery. Recovery was going really well and she had the stitches removed on Wednesday just as they had told us to. When I called mum to see how her head was feeling she replied "wet". I didn't quite understand what she meant until I got home to see for myself. The incision site was in fact leaking a clear fluid quite consistently. Ryan took mum to emergency and waited patiently with her until the neurosurgeon came to take a peak. They decided to keep her overnight for observation and to run a few tests and scans. The Dr. Also came in tonight and put 2 new sutures in at the base of the incision site which will hopefully stop any further leakage. The fluid has been totally clear this entire time (looks like water) but is actually what they call CSF or Crainial Spinal Fluid. I think we all feel like we are learning way more about this stupid disease than we ever wanted to. We should get to go home on Friday once all scans come back clear. YAY! Our little lovely Granny is recovering as well, we took her into East General on Monday as she just wasn't feeling right. She seems to be doing much better now and we hope to also have her home soon too. Christmas is fast approaching and we want everyone home together to celebrate the holidays. Thank you always for everyone's support, words of encouragement and love. XOXO Keryn Ps...mums room is back on the 5th floor with 2 huge windows overlooking the city with great views of the CN Tower.

Still looking for Easy Street!

Sometimes I wonder where the heck Easy Street is?  I've looked for it on Google Maps to no avail.  I thought my family had suffered enough bad news for a while but this past week proved to test our strength once again.  


This photo below was taken on Thursday November 17th as we were waiting to pick up the chemo drugs that mum was going to start taking the following day.  We sat there after our meeting with the surgeon and medical oncologist feeling a little apprehensive but hopeful that the drugs would work just as the Dr's said they would.  A promise that mum wouldn't get sick from the drugs, a promise that this was the best form of treatment.

Mum is so cute.  We were driving home from yet another day at the hospital on Friday and she said..."how are they going to know if I don't start taking the drugs tonight....I could always start tomorrow".  I assured her that we needed to start that night and that everything was going to be okay.  And things were okay...all weekend.  She was fine, other than tired, she really didn't experience any side effects.  Suz and I both went to work on Monday and left her with Granny.  I'm not going to get into the nitty gritty detail but things on Monday weren't as peachy as we had hoped.  We took her to the emergency dept. at TGH on Tuesday morning to get the side effects and pain under control.  She complained of "the worst headache she has ever had" and they ran some tests on her head.  


What came next was probably the worst news any of us could have possibly imagined.  We were transferred to Toronto Western Hospital to the Neurological Critical Care Centre.  The blood thinners that mum was prescribed for a blood clot in her leg had caused a lesion in the back of her head to bleed.  Further MRI scans confirmed that surgery was necessary.  
The surgery went well...the Neurosurgeons were really happy with the outcome. 


Note to all...never call them neurologists - they don't like that and will always correct you, I think the difference is 7 years of brain doctor school.  Which makes me wonder...who are these people that grow up and say...I really want to be a brain doctor?  I wanted to be a ballerina or a school teacher but never did Neurosurgeon cross my mind???


The amazing thing about the human body is how quickly it can recover.  The day after surgery was not good but here we are going on day 3 post surgery and the difference in mum is outstanding.  Step by step and day by day she is getting healthier and stronger.
I am meeting with the Neurosurgeon tomorrow morning and then the physiotherapist to figure out what to expect next and when we can bring her home.  The staff at this hospital has been amazing.  These are people I would have never wanted to meet or get to know ever but in a way I am happy I have.  Sean, our emergency department nurse who came with us in the ambulance to the critical care ward, Linda our nurse in critical care from Northern Ireland, Daisy our nurse for the past few days who used to be a hairstylist and cosmetician and Nadia, who has 3 girls and is so gentle and kind.


Then there is Pam and Baby Jada, truly the best medicine.  I will always be grateful to Jada for bringing a smile back to my mum's face for the first time since we got this news and had the surgery. She is too young to know right now but I will ensure that one day she knows how much her smiling face means to me now and will always mean to me.  Thank you Pam for sharing your beautiful baby girl with us.  It's hard to really express and put into words the profound gratitude I have for you both.  Here is a photo that will be ingrained in my memory forever.

There are so many of you to thank, our living guardian angels who are so surrounding us through all of this.  Thank you from the bottom of my heart and soul for everything you do.  Delivering food to the hospital, kind notes and emails that I share with mum, encouraging words and visits, cards and flowers.  Eternally grateful.  


Finally, my family.  WOW.  Support that never waivers, and people who never leave your side.  We stood by each other and held each other up when the other was falling down.  I just  feel lucky to have a family like I do.  Suzie in her big girl pants, Jen with her calm presence, Wayne and Richard, who are really good at holding you up.  Ryan, who is just the best damn brother a girl could ever ask for.  Ian, my steppie who loves my mum so much and his daughter Melissa who has been such a huge support through this.  And Grandma who is just the cutest, kindest soul on earth.  It just doesn't get much better than this.


Here's to more positive days ahead, there will be many.


Love always 
Keryn

A Little (BIG) Bump in the road to recovery

It's amazing how fast things can change.  Life's ups and downs that can sometimes hit you hard upside the head without fully understanding the reasons why?

Last week we had our follow up appointment with the surgeon and our medical oncologist.  For the most part this meeting went very well.  We were prescribed the chemo medication sutent and found out that although the surgery went very well they did find a blood clot deep in the vein in her left leg.  To combat this and ensure that the clot did not come loose and travel to the heart they prescribed an inject-able blood thinner called Fragmin (Detaparin).  

We started both Sutent and the blood thinners on Friday and overall had a really good weekend.  Ian cooked a beautiful Roast Chicken Dinner on Saturday night and we have some visitors over.  Sunday was another good day and mum headed out for coffee and even bought herself a new leather desk chair to complete her show room.  Monday she woke up feeling tired and not quite right.  The side effects that we had been informed of really started to kick in.  They were severe and she had "the worst headache she ever had in her life".  Finally we decided that we couldn't wait any longer and took her to TGH via ambulance to see what was going on.  They re-hydrated her and gave her some medicine to help with the nausea and headache however nothing was helping.  They ordered a CT scan on her head to see why she was having such a severe headache.  

The results were a complete shock.  A tumour in the brain (back of her head near the neck) that had been bleeding.  This area of the brain is responsible for your balance, vision, speech and can often make you feel nauseous if there is a problem back there.   The next part all feels like a bit of a blur as they transferred her to the Neurological Critical Care Unit at Toronto Western Hospital to meet with a neurosurgeon.  We were unsure of exactly what to expect next.  They scheduled an MRI to better see the picture of the brain.  There they confirmed that the tumour was the size of a golf ball and had been bleeding, there is also a secondary tumour that they found on her brain (near the top of her head) but this one is quite small.  

The reason  for the bleeding in the brain is due to the blood thinners that we had been prescribed.  We are now not taking the blood thinners anymore and instead the doctors have inserted a filter (kind of like a net) in her heart to ensure that if the clot does break off it would be blocked by the filter.  

The neurosurgeon suggested that we go through with a surgery called a craniotomy as the best case scenario to remove the tumour along with the effects that it was causing.  It was really our only option in order to continue on.  This has  been a difficult decision  but one in which Nancy and our entire family agreed would be the best choice for her.  

I am happy to inform everyone that although we haven't got to see Mum yet that the surgery was successful and she is now being monitored and recovering in the step down unit before we can see her. 

The positives through all this have been that although the blood thinners caused the bleeding in the brain, and we've had to do this last minute emergency surgery at least we found the tumor when it was small enough to operate on.  Recovery of this type of surgery is not that bad either.  Probably only a few days of headaches so nothing like the major pain of the last surgery.

We are taking everyday at a time and looking forward to seeing her smiling face and getting her home soon.

Lots of love to all

Keryn and family