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

SOCKS!!!

Sooo....we received a parcel the other week all the way from New Zealand.  Comfort socks to keep our tootsies warm throughout the winter.  We all put them on and got the camera out and snapped some shots.  Thanks Pops!

An update...finally

It has been 4 weeks now since my surgery. Recovery is good, not as fast as  would like but I have learned to be patient. I am still very tired and have some pain & discomfort around the incision. Would love to sleep on my right side.

Today was my followup appointment with my surgeon Dr Finelli and the first with my oncologist Dr Jennifer Knox. As far as the surgery goes it was a success, no cancer in that area, but it is important to begin the drug therapy immediately to fight the secondary lesions still there. I was hoping for a little more time so that I could start the drugs feeling 100% but certainly understand the urgency and while frightened of what lies ahead, I am also anxious to start the therapy.

My way of battling this disease is to keep it in separate compartments in my mind and only deal with one at a time. I have managed to get thru the first two.

1. The diagnosis, the disbelief and coming to terms  (as best you can) with it and realizing your only option is to fight with all your heart and soul.

2. The surgery and recovery, something I never would like to experience again.

YAY!, done and behind me!

And now on to compartment 3, the drug therapy, the one that frightens me the most. I have now been made fully aware of the side effects that I could experience over the next 18 weeks and I am not looking forward to any of it. I won't share any of the unpleasant details. The side effects are very common and likely to affect more than 10 in every 100 people. My hope is that I will be one of the lucky ones who suffer the least amount of discomfort.  The drugs that I will be taking are expensive as they are still patented by the drug company.  I can think of a million other things I would rather spend $8000.00 per month on but I feel pretty lucky that I live in Canada so that this cost of covered.  I know I will get thru the next 18 weeks with the help of my amazing family that have been so supportive through this entire experience.

Wish me luck thru the next stage of my battle with this terrible disease.  

Here is a photo of us at PMH after our appointment and waiting for the meds.

Wish we could have posted something a bit more humorous or uplifting today...but we gotta be honest, there wasn't much to smile about today.  We did get some nice warm fuzzy socks from New Zealand last week to keep our tootsies warm over the winter and we had some fun taking photos of us wearing them...will post those in our next blog.

Much love.  Always.  Nancy, Keryn and family.

Getting better everyday

I am so very happy to be recovering at home. How could I not get better with so many loving, caring people here to care for me. It's like having my very own nursing team. Ian is here every morning to make my breakfast, lunch, go for a walk or drive, watch TV or just to sit quietly with me. Keryn, my sweet, sweet girl who is just here for me completely. Julie comes over in the afternoon to make a lovely dinner while Suze is busy tidying up, Grams comes down to sit with me and when  Keryn and Ryan get home we all have dinner together. Certainly a change from our hectic lives, I know it will all change but spending this time together with my family has been one of the best things to come out of all this.
I am now 12 days post surgery and I feel a little better each day. I am finding it difficult to gauge how much to do as far as physical activity on each day. On Sat. I felt great; pain under control, some energy (finally I felt like getting up) beautiful sunshine filled day. Off Ian & I went walking the apt. halls and down 5 flights of stairs, then it was into the car and off to the store then a drive to the ravine and a 20 min walk. At the time I felt fabulous....BUT the next day WHEW!! Somehow I had pulled my calf muscle and I don't know which was worse, the pain in my leg or in my side. I really had overdone it and did not move out of bed again until Monday at noon.
I was off to see my family doctor on Monday afternoon to get the staples removed (not as painful as I had anticipated). Another step completed on the road to recovery. Today I have an appointment with a massage therapist to see if that will help my leg. I am still having some trouble sleeping at night and now have some pills to try this evening. (I would love a full nights sleep; hell I would love anything more that 4 hours).
A special thanks to my cousins, Debbie and Frank who flew in from the UK for the weekend to visit. What a wonderful surprise! I wished I could have joined you all for dinner.
Many thanks to all my friends and family who have been so supportive, visiting and sending me so many positive messages each and every day. Words can not express how blessed and loved that I feel.

Love
Nancy

Sunday Dinner

On Sunday afternoon one of Keryn's co-workers arrived with a fully prepared 3 course sunday dinner for 10 people. I was so very touched my Emily's generous offer as she herself is a a cancer survivor. I have attached Emily's email to this post along with a picture of Emily, myself and Keryn.  We now plan to pay this forward to help someone else out in the future.

Thank you Emily, the food was amazing!!

Hey Keryn
I wanted to thank you for the link to your blog.  I have been checking it
every day and it is wonderful to see your sweet Mum doing so well.  I hope
she is feeling better and better every day and that you are getting enough
sleep.  
I am not sure where your mum lives or if she will be home yet, but I would
love to drop by dinner sometime this weekend to give all you starving
supporters a feed.  If I remember correctly, you are not a chefy chef type
and having a home cooked meal is great after you have been living in the
hospital.  The food there really is ass and after a while the last thing you
want to see is take out.  Please let me know if this would work for you.  I
don't need a visit or a chat, I will just provide some chow.  With pleasure.
I am healing nicely from my surgery.  
Please let me know about dinner.  I really would love to drop something off
Sat or Sun.

Emily  

Home Sweet Home

We are home now!  Discharged from the hospital today at noon.  YAY!!!


Ian took this photo today of us at the hospital just before we left.  As you can see from our smiling faces...we are happy to be going home.  

The nurse was getting on mum's nerves a little bit last night.  She was just doing her job but tried to fool her about the last time she took her pain meds, she tried to withhold them for longer periods in between.  My mum might have been on morphine but she's no idiot.
Below is the text mum sent me at midnight:


"Ok trying to fool me again, nurse bought in tylenol at 11:30 so I said I wanted 2 morphine @12 but she said no you have to wait until 12:30 because u had pills @ 10:30. They r hoping I will fall asleep but pain is just starting & I know it will be too much by the time I wake up. So determined stay awake til 12:30. Good thing I remembered u ordered pills @ 9:05 & they came @ 9:25"


So I called her and we talked together until 12:30 AM when then the nurse finally gave her the meds, which allowed her to sleep through the entire night.


We are now at home.  Mum loves her dream bedroom and will be perfect for her to recover in over the next few weeks.  We just finished dinner with Suze, Jules, Grams, Ryan and I.  We are now relaxing, overall it's been a very good day!


Over the past few days the most amazing people have sent messages and notes to us and I just want to take a moment to thank you all for your support through this.  
THANK YOU THANK YOU THANK YOU!


XOXO
Happily recovering!
Keryn and family

Note from Nance....

A note from Mum, written in the hospital (yes we get internet in the room)

This photo was taken by Ian on Monday, October 24, 2011 at 11 AM.  I am hoping to be going home on Wednesday or Thursday of this week.

Recovery has been difficult but steady.  Although I feel crappy, the doctor said I look pretty good with lots of colour in my face.  I'm taking that as a good sign.

On a good note, my hair looks fantastic!!!!

Looking forward to getting home and relaxing in my newly decorated bedroom, courtesy of my sweet sister suzie and my darling cousin Julie.  And everyone in my family who helped get everything ready.

Here's hoping to a good night ahead with lots of sleep, because usually it evades me here.

Love Nance (and Keryn)

Wearing my big sister pants....

Below is a little email that my Aunt Suz sent to her sister over the weekend.  My mum thought it was a great email to receive and wanted to post it on the blog.  Here it is...enjoy:

Good Morning Lovely;

Today will be a better day Nance but you have to listen to your body and please don't over due it. I  am wearing my big sister pants today so I can tell you I want to rest,do your breathing exercises and take little walks not marathons. I have gently asked people to give you some time to rest and not visit you for a couple of days or better yet until you come home .I hope that is okay with you my little cupcake. You have to concentrate on getting better and stronger so you can come home to your dream bedroom. Remember Nance baby steps and moderation. This is the one time in our lives when less is better. Please listen to your temporary big sister today.You are my hona babe. 

I carry your heart

Love Suz

Recovery Day 3

So here we are 72 hours after surgery and although the surgery was a success, the recovery process is a bit up and down.  Mum still has an epidural in the top part of her body and when it works - it works really well.  However it hasn't been working all the time, so when the pain gets to unbearable for her the pain management team needs to come and top up the dose.  She also has a morphine pump which makes her groggy but helps keep the pain under control.  The epidural also makes her feel nauseous so she hasn't really had much food other than a bit of mushroom soup on Saturday.  The incision site is quite large (approx. 12 cm across her side, like where you would wear a belt).  I think because it was such a large tumour and because they had to remove the tumour on the lymph node as well it is more painful than a typical nephrectomy (which is when they just remove the tumour and kidney).  I made an error though in my blog and said that they took out her adrenal gland but they did not so she still has two of those, which is a good thing.  The adrenal glands help to keep your energy levels up so it's better that they didn't have to remove that (even though you have two).


Our main motivation is to help Mum get her pain under control and hopefully over the next few days we can have the epidural removed and be able to start managing her pain with other forms of medications.  We will hope to have my mum home later on this week.


Thank you for all your well wishes.  I just wish I could take all the pain away from my mum and deal with it myself but of course that isn't possible.  So we will all just do our best to make sure she is in good spirits and as comfortable as possible.


Love to all,
Keryn (and mummy)

Good News From Toronto General!

Dr. Finelli came out to see us at 5:15 PM tonight to inform us that the surgery went really well.  They were able to successfully remove the tumour, the right kidney as well as the tumour on the adrenal gland.  Mum is in recovery now and they are monitoring her until approx. 7 PM.  We will be able to see her at 7:30-8PM and can't we all can't wait.  Feeling very relieved!

In Surgery...

Just updating everyone on today so far.  We got to the hospital at 9:30 AM and we had a bit of a scare when they told us that they were not sure if we could actually do our surgery today because a patient's surgery in the morning went longer than it should have.  The good news is that we got into the OR and mum got all prepped up.  She has got an amazing surgical team working in her right now.  3 anaesthesiologists, 4 surgeons and lots of nurses.  
We all got to sit with her in the prep room and we laughed and told jokes and it was pretty calm.
We are having a quick bite to eat now and then headed back to the waiting room and we expect to hear from Dr. Finelli at approx 5 PM.  
They slotted a 7 hour time for the surgery burt Dr. Finelli said that he should start just after 2 PM and it would take about 3 hours.  I will keep you all posted.
We are in good hands and things are looking good!!!!!
Updates to follow soon.


Love Keryn and family!
XO

A Post From Nancy

Over the last few weeks my families lives and mine have been changed drastically. Imagine going for a test for a minor complaint, just an occasional ache in your side, only to discover that you have kidney cancer. I am in shock and still having a difficult time dealing with this diagnosis.

I am trying to approach my upcoming surgery and treatment with a positive outlook, trying to keep my sense of humour and surrounding myself with the most loving, caring & positive family and friends’

I know that this will be the fight of my life and these are just some of the things I am fighting for.

1.     I want to walk my daughter Keryn down the aisle and when they ask who gives this women to be married to this man. I want to proudly say “I DO”.

2.     I want to dance with my son Ryan at his wedding.

3.     I want to watch my son Ryan  hold his first born child in his arms, know the miracle of life & see the awe in his eyes.

4.     I want to watch my daughter Keryn hold her first born child in her arms, know the miracle of life & see the awe in her eyes.

5.     I want to grow old with my honey, Ian.

6.     I want to plan my Mum’s 90^th birthday party on Aug 29, 2012.

7.     I want to be standing side by side with my siblings, Richard, Wayne and Susie if something were to happen to my Mum.

8.     I want to sit with Susie & Keryn and laugh and listen to all their silly stories.

9.     I want to decorate my Christmas tree and have everyone over on Christmas Eve.

10.  I want to go and visit Julie & Leo in Florida and have a lovely holiday with them. I always feel so welcome in their home.

11.  I want to work with Jane, Robert & Sherri at MAD until we grow old and retire.

12.  I want to enjoy Thanksgiving Dinner at Wayne’s cottage or Richard’s house or the old hunting camp as long as all my family is there.

13.  I want to see Jen complete school and become the success I know she can be.

14.  I want to plan brunches, lunches, dinners and parties and share wonderfully good times with all my best friends and family.

15.  I want to sit on the floor and play with my grandchildren and watch them grow.

16.  I want to watch the sunrise and sunset on a tropical beach with my honey.

17.  I want to share a bottle of wine with Jane & Robert at their villa in Tuscany.

18.  I want to watch all the sweet wee ones , Ben, Lola, Tyler and Jada grow up.

19.  I want  to see Ryan find a great career that he loves.

20.  I want to plan a great trip to NYC & London with Keryn & Susie 

A Good Weekend!

As noted in my previous post.  Mum's surgery is scheduled for this coming Thursday.  We are all happy that this is the arm of the clinical trial that we have been chosen for and we are going into Thursday feeling positive and slightly apprehensive at the same time.  A little surgery however will not keep us down.  So let the weekend begin!

Now since finding out the news we laugh because Mum has become a "one event a day" girl.  Meaning that due to feeling sightly tired, we only plan one thing to do each day and sometimes we surpass our quota of "one event" and other times we just stick to that one thing.  Friday Mum turned into a two event chick and went to work at Thompson Gardiner with her friend Connie and then we all met up for a bite to eat at one of our favourite spots "Le Papillion" on Eastern.  We ate some good food, drank a little bit of wine and overall just enjoyed each other's company.  And we laughed...man we laughed.  A LOT!

Friday night's dinner was followed by a unusually early brunch for all of us.   Mum, Ian, myself and Glenn met at 11 AM at Joy Bistro on Queen.  Mum and Glenn have been friends for years and Glenn always jokes that he used to change my diaper and "saw my hoo hoo"...whatever that means, but it always makes me laugh.  It was great to all get together although we all decided that for future 11 AM is too early for all of us for Brunch.  I had to work a hockey game so we will ensure that all brunches in future are scheduled on non Leaf Home game days.  We all know the importance of photos and we love to take them but I guess we were all just to consumed with each other's company (or tired) that we forgot to take any.  The photo below is of Glenn and Mum at her wedding and it's one of my favourite photos of two great friends who have truly lasted the test of time.

Mum and Glenn's relationship reminds me a lot  of my relationship with my friend Michael Bonsor.  Just a great friendship that has been through some wild times (when we were all a little younger) and continues to grow throughout the years.  Even if we don't talk all the time or see each other as often as we wish, we are all able to pick up just where we left off and nothing ever really feels any different.  I love that about good friendships.  The confidence we have in them to continue no matter what.

Sunday was one of those windy fall days where you just felt like grabbing a blanket and "assuming position" on a couch somewhere and doing NOTHING.  But instead of nothing we slow cooked a roast and Suz (the best organizer in the world) helped us clean out our front closet and helped us get organized.  We even found Jenn's old polka dot coat that mum has been holding onto for years, just in case a little girl came along that could wear it.  We ended up tossing it, along with my sailor dress and a number of other old coats and jackets.  Keep, Toss, Recycle.  Suzie's mantra!  She should really have her on TV show.

Many of you might be wondering about Grandma through all this.  We did end up telling Bea on Sunday night before dinner.  We were slightly worried that the news would be too much for her to handle but really you don't get to be a strong, sharp 89 year old because you are a wuss.  Of course she was shocked and upset but is feeling pretty positive about everything.  By telling Grandma, it is just one more person to send Mum positive vibes and support her through this time.

Our domestic caring goddess Julie arrives tomorrow and we are all really looking forward to her arrival.  Yet another huge support during this time.

That's it for now.  There will be lots of time for more brunches and dinners.  Right now we are going to focus on a successful surgery and recovery.  With our immediate family we have tonnes of support at the hospital this coming week and it will be a time that Mum will be able to rest and recuperate.  We ask that any visitors wait until we are back at home and we can figure out a time for visits.  I will be sure to keep everyone up to date on how everything goes and of course if you want to get a hold of us you can contact me directly.  Hope everyone understands...I'm sure you do.

Talk soon

With lots of love and light and good thoughts.

Keryn

Surgery Scheduled!!!

The wait is over.  We have been randomized for the traditional arm of the clinical trial and we have mum's surgery booked for Thursday October 20, 2011 at noon.  We were really happy to get this news and in a way it's what we all wanted.  We have all been talking about it and there are pros and cons to both arms of the study, but we all think that it's best to get the surgery out of the way first and get this tumour out of her body.  
We are apprehensive but at the same time glad that wheels are in motion and something will happen sooner rather than later.

I will keep you all updated the more we know.

Thanks for all your support.
Keryn

Thanksgiving, Waiting and Everything in Between.

It's been a few days since my last post as there hasn't been much to say about mum's progression with our trial and our treatment.  What we have done over the past long Thanksgiving weekend is spent time with each other.  We ate turkey and enjoyed the beautiful weather than Mother Nature provided for us, we spent time with each other and just enjoyed the moments as we all know what is about to come will be an uphill battle.  One that we are all willing to fight.  It might get harder before it gets better but in my belief it will get better.

Nancy is completely A symptomatic.  Meaning, other than being tired and still feeling the effects of this devastating news....She is in no pain.  That's the crazy thing about mRCC (Metastatic Renal Cell Carcinoma) is that in some people there are no side effects.  You might feel a dull pain in your side, thinking it's just back pain that you have suffered with your whole life and that's it's probably nothing.  In talking to my mum, we both thought - we must insist that there are more tests done for this type of disease.  Don't be a martyr...go to your Doctor if you have a slight pain...get checked out...its better than the alternative.  

We are awaiting news on our surgery date.  We still haven't heard and throughout all of this I have to say...waiting is the absolute worst.  We should find out some time this week when our surgery will be scheduled should we receive the first arm of the clinical trial.  Otherwise we will at least have a date in which the oral drug sutent will start to be administered.  The internet is sometimes a scary place to google and try and figure out what is what.  Medical jargon takes over and it becomes one big confusing scary place.  So I try not to look there too often.  The one site I did find however, is a youtube video on a talk that Dr. Jennifer Knox did on Cancer Clinical Trials.  If you are interested in listening to it, you can find it here: 

http://www.youtube.com/watch?v=ZRoXXlyPf7M

Dr. Knox is our medical oncologist and she seemed pretty awesome the first time we met her.  She has been working with the drug Sutent that mum will take for the past 9 years.  The trail that we are in seems to be in phase III which is a good thing for us because it is a study that has been going on for a while and she seemed really knowledgeable in the drug and the reactions to it.  

In the interim, as we wait to find out all of this information, mum has gone back to work a few days here and there.  I think its good for her to try and keep her mind off things because as I mentioned earlier...waiting is the absolute worst.  As soon as I know the next course of action I will ensure that you all know as well.

I wish I had some photos to post about our past thanksgiving long weekend but we were too busy having fun and I didn't take any, and neither did Ian.  I think Jeremy took some photos so I will wait to see what he posts and will add it to our blog.

On a personal note,  I had a really wonderful surprise this weekend.  My boyfriend Paul, who has been training for work in Calgary since September 17 decided to surprise me with a visit home.  I was at work on Saturday afternoon and had a knock on my office door.  The voice (which I didn't really recognize) said "hello Ms. Gibson" and I turned around and he was standing there.  Best situational surprise EVER.  Needless to say I was thrilled...and he was home for the entire weekend including our Sunday Turkey Dinner celebration.  It was pretty awesome and exactly what I needed to get me through until he comes home on November 11.  It was most definitely the best thing that has happened to me since finding out about all this on September 20.    He wins best boyfriend of the year award in my books...which is all that really matters.

I will keep you all updated and in the loop as much as possible.  Please don't hesitate to call or email if you have any questions.  Mum has just been a superstar through all of this.  THE most positive person I know and taking every day as it comes.  Mum...if you are reading this, I love you greatly, more than I can possibly express in a stupid blog.  More than words on a page, More than anything in this world.

So I am going to end off "this stupid blog" on all things I love about my mum!

• I love that my mum always says "you are my favourite girl kid and ryan is my favourite boy kid".  She has always been even steven with her love for both of us.
• I love the way my mum had taught me that a woman always looks better with blush and some lipstick (it's true you know)
• I love that my mum knows me better than I know myself, when I'm angry or upset she always says just the right thing to make it all better
• I love that my mum is actually one of my best friends, that I can confide in about anything and there is never any judgement passed and I know that my secret is safe in her mouth.
• I love that one of my mum's favourite sayings is "Before the words leave the gates of your mouth, make sure they are true, that they needs to be said and that they don't hurt anybody".
• I love that my mum has to take inventory of what people are ordering at the table in a restaurant and she always has to go last...because god forbid, she has food envy of another's plate.
• I love that my mum put me in french immersion because she wanted me to speak more than one language and when it was time to study she couldn't pronounce spelling test words (i.e.: birds nest....Le Nid....silent D but she enunciated it anyway)
• I love that my mum always believes that the more the merrier is good because she likes all of her family around her and doesn't really ever like to be alone (neither do I)
• I love that my mum makes the most beautiful invitations, videos and overall can throw an amazing party.  I would have never been able to do Pam or Erin's shower without her.
• I love the way that my mum tells a story.  They are always funny and insightful and the best stories ever.
• I love that my mum knows everything there is to know about babies, just listening to the conversations she has had with Pam make me think she must have been a midwife or doola in previous life.
• I love that I am still 31 years old and living at home and she is totally okay with that...family comes first to her always and she is the best supporter you would ever want in your corner.
• I love that my mum always instilled in me that even though my father left that he was a good man who loved me always and never ever spoke an evil word of him even after their separation...she let me figure out my relationship with him as in unfolded.  And I love him dearly.
• I just love my mum...nothing more to say...she has always been there for me and always will be.  In my heart, in my head, in my life.  My mum doesn't even compare and I couldn't have asked for anything better.  

Don't cry mummy...what we are together is perfect and I can only wish that every daughter felt this way about their own mum.  I love you soo much.

With Love

Keryn

Early Morning and Big Day

Tomorrow is a big day.  Mum is in for Pre-Op Surgery at PMH where they will go over what will happen during the surgery, how to prepare, what to expect and they will take some tests.  Suz and Ian are going with her to make sure that all questions are answered.  The only awful thing about it is it starts at 7 AM...if anyone knows us, you'll know we don't do morning well. As I mentioned in my last post...we are waiting for our surgery date which we should find out either end of this week or early next week.  If we get chosen for surgery, the date will be scheduled as they say it's easier to cancel a surgery then to try and book one.

Sometimes I think to myself that they must have been looking at the wrong person's scans because this couldn't possibly be happening to us.  Not that I would wish this on anyone else but I am sure you all know what I mean.

The scary part about all this is that cancer seems to be everywhere.  I hear about it all the time now, perhaps it's because if I talk about it other people tell me their stories but it seems to be all I am hearing these days.  

Tomorrow is also a big day for me.  I've been back at work now since Monday and tomorrow is our D DAY.  Leafs Home Opener against Montreal Canadiens.  It's our biggest night of the year, our busiest and hopefully a lot of fun.  Tomorrow we will serve over 550 people for dinner, we will break revenue records and I guarantee my maitre D Pano will lose his cool at least 6 times before 7 PM.  But we will get through it and by 11 PM it will be all but a distant memory.

What I am looking forward to is Turkey dinner on Sunday at Wayne and Gail's house.  We are all going over to enjoy one of my favourite meals of the year.  Turnips, Sweet Potato Pie, Mashed Potatoes, Turkey and of course Pumpkin Pie!  It's the best.  Not to mention Jeremy's kids are joining us, two of the cutest kids ever.

Tonight we took some time to hang out with friends and people who make us happy.  Mainly Baby Jada, Pam's daughter who is just the sweetest wee girl.  One of the things that I have always been in awe about is the fact that Nancy knows almost everything there is to know about babies and has the most sound advice about everything parenthood related.  She's like the Cesar Milan but for babies...the baby whisperer.  I'm trying to post a video...let's hope it works.

Hope everyone has some plans for Turkey Day that include spending time with people who make them happy, friends and family.  

Go Leafs Go!

XO

K

Week 2 - Has it really only been a week?

Last week was THE hardest week I have ever had to live through.  I can't even begin to imagine how it must have felt for my mum.  The easiest way to describe it is Devastating.  

My Uncle Rick was getting married on Saturday to his lovely partner of 25 years, Linda.  I had been anticipating this day since we got the invitation in the summer.  Mainly because I knew there was a home Leaf game and I would have to work.  All summer long I said...I can't go, I'm sorry but work will be upset, I'll be letting my team down and I will just have to miss this one.  I knew my mum wanted to go and was looking forward to it all summer, I also knew that she wanted me and Ryan to be there.  Nancy's motto...the more the merrier, she likes as many people to be around as possible.  Mum gave me a bit of a hard time about it at her birthday dinner in August...but I remained insistent on working.  Well, you guessed it.  I went to that wedding.  We packed up the car(s) on Saturday morning and drove out to Tweed.  It was a gloomy day, it was damp and grey and I felt sad when I woke up but by the time we left the sun had come out, the clouds had cleared and although it was chilly out it was a perfect day.  In a way I think getting together to celebrate the good things in life was exactly what everyone needed.  The wedding was beautiful, we took lots of pictures and we danced.  Man we danced!  Even good ol' Grams got up and had a dance with her son and lent her walker to Suzie who played air guitar with it.  HIGH-LARIOUS!!!!  The whole weekend brought back a sense of normalcy with our family that we had been missing all week.  And it made me realize that it's true what someone said to me this week.  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...so we continue on being ourselves and dealing with our new situation at hand.  Here are some photos that I love form the weekend....I hope you enjoy.

Being a patient seems to be a full time job for us, specifically for mum.  Last week we were at a hospital 4 out of 5 days...and this week is more of the same.  We are constantly getting new appointments booked and things are certainly moving forward at a very fast pace.  The great thing is that our medical team don't just rely on phone calls and messages anymore.  We are in constant contact with Davina (our clinical trial program coordinator) who is a true professional, responding to every single question within moments of an email.  This week we have the following scheduled:

TUESDAY: MUGA Scan at Mount Sinai to check mum's heart.

THURSDAY: Pre-Op on Thursday at Princess Margaret.  

(This is a meeting to go over what will happen during surgery.  We don't necessarily know yet if mum will be randomized to the immediate surgery arm of the study or if surgery will be deferred until after the Sutent is given.  Right now we will actually have a surgery date booked just in case she is selected to have surgery first).

FRIDAY: Second CT Chest Scan at Princess Margaret.  

Although we don't have a surgery date yet we will be finding out very soon when it will be so at least if we do get selected for surgery first we will be able to plan for it and prepare ourselves.

Many of you have offered help in driving mum to the hospital etc but I just want to let everyone know that my work has been beyond supportive and Ian has taken a leave from his job.  Along with the rest of our family we are all good for any help this week.

More updates to come.  I hope you enjoy the blog...mum has seen it and approved the title and the background.  The one thing I would like all of you to know is that every response that you send and every email that I send out I share with my mum.  Every single word.  To be honest...being able to read the emails to her has been helpful and healing.  We sit together, either in hospital waiting rooms or recovery rooms or in the car en route to hospital and I read her every response that you send.  She hears them all.  And most all of the time we laugh.  Thank you for making us laugh!

Goodnite

With Love

Keryn

Diagnosis Diary Day 5

I don't have much to say tonight other than we had mum's biopsy today.  Her words..."this is a piece of cake".  And she is doing great.

I'm tired tonight so instead of writing a whole bunch I will just send you the following photos.  I still don't think this is a woman who looks like she has cancer.  Just beautiful!  (we got in trouble for taking pictures in the biopsy recovery room - kinda funny)

One of the lovely nurses that was with mum for her biopsy today told me..."you take her to that wedding tomorrow and you have fun together...that is what is most important".

Enjoy the weekend...We will!

Love Keryn

Diagnosis Diary Day 4

Hi Everyone,

Today was a good day...better than yesterday and tomorrow is going to be better than today.  We got some really good news early this morning...not only were we meeting with the medical oncologist today at 4:30 but we also got scheduled for a biopsy on mum's tumour for tomorrow morning at 9:10 AM.  The Doctors and support staff at Princess Margaret have been totally amazing.  Ian, I and my mum feel like we are in such good hands right now and being cared for in the best possible way!  Dr. Knox (our medical oncologist) has so much experience with Sutent, not only have they been using it in traditional kidney cancer surgery for the past 3 years but she has personally had experience with it for the past 6 years in clinical trials.  When we asked about the side effects of sutent and how they might affect my mum...she just responded..."I will not let her get sick from this...I will adjust the dose".  I have complete faith that we are dealing with a very experienced group of medical professionals who have my mums health and best interest at heart.

Today we also visited Wellspring.  Granted it wasn't everything I expected (my expectations generally are quite hight) it was helpful.  This is going to be a process and it won't always be easy.  We are allowing ourselves to be sad if we want to and enjoying all the moments in between.  For some reason yesterday I didn't feel appropriate to include my mum on my email about her progress.  Today I shared all of the email responses that I received and read them aloud to both mum and Ian as we were driving home from the hospital.  Because they weren't my own words it was easy for me to read them out without getting emotional.  Please feel free to respond back to both mum and I as well as Ian....I find writing helpful and I (we) love to hear back from all of you.

I have decided that it's really important right now to take photos of everything and everywhere.  At first I found it really emotional to take a photo together..but I did take the below photo of mum during a little pit stop on our route and I just thought that it was awesome.  I will always remember the moment that we took the photo...but this does not look like a woman who has just been diagnosed with cancer.  The one thing that they said at Wellsping today was that all photos don't have to be happy photos.  That was hard for me to hear because I think every photo that I have of us is happy, the idea of sad photos just makes me...well...sad.  

I feel like our lives has changed indefinitely for ever, that I won't ever be the same because of this awful news that we have received.  But today I learned that I am still the same person and so is everyone else, we still have the same morals and values and the most awesome family ever.  That will never change...unfortunately the only thing that has changed has been our situation.  But we are still the same people...this hasn't changed us as people...just our situation.  That was big news to me...because I really liked who I was a week ago and I felt like that had changed.   I feel better knowing that I am still the same person, just with a different situation to face.

I am going to end my email by copying some of Jane's favourite things about Nancy....Jane...this made me cry this morning while I read it by myself but then it made me happy and I shared it with my mum.  Thank YOU! 

I love the way Nancy always has her hair and make-up done - and jewelery too.
I love the way Nancy takes 1/2 a bite of a chocolate and if she doesn't like it, she puts it back. Our Indian name for her is "half bite"

I love the way Nancy believes in the good.... and trusts that my boys will turn out fine - because even her crazy Keryn did

I love the Nancy has so many pitches to her voice to express herself. So cute. Sometimes it's deep and grumbly and sometimes it's high and girly but most of the time is warm and friendly and lovely

I love the way Nancy has such a close family and cares so much for all of them.

I love the way Nancy gets enthusiastic about new ideas and adventures.

I love that I can confide in Nancy about anything and she would never betray my confidence or judge me harshly.

I love the way Nancy has been a partner and confident to Sherri, Bob and myself.

I love the way Nancy told our banker that she was "stupid". Coming from Shirley Temple herself who never says a bad thing about anyone!!! Just
adorable. Go Nancy.

I love Nancy's sense of humor and her laugh.

I love hearing Nancy's take on things with respect to people, business, politics - always very insiteful and intelligent.

I love Nancy with all my heart. She has been a friend, a big sister, a mother and partner to me.