Journal History

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Monday, September 12, 2011 5:48 AM CDT

Tonight, London City Hall will light up with Gold Lights to recognize Childhood Cancer Awareness Month. We'll go down to the ceremony and I'm going to believe the lights are on for Caedan.

I watched the families of the 9/11 tragedy yesterday weep for their loved ones ten years after their death. Their emotions are still so strong. I understood.

In a lifetime, nine years isn't that long. It's the blink of an eye and a passing of a breeze. It's how long Caedan was alive and it's now how long Caedan has been gone.

I woke this morning to see an email from Dina and this is part of what she said,
"But my heart remains filled with thoughts of you all, and tomorrow being Caedan's day. Then I come across a powerful quote... 'You can't do anything about the length of your life, but you can do something about it's width and depth.' Made me feel Caedan right next to me."

He's next to me, too.
It was nine years ago today...

M.

Friday, April 22, 2011 11:12 AM CDT

Happy BIRTH-day beautiful Caedan.
You would be turning 18 today. How grown up is that? I stare at my friends' sons (your friends) and watch them so intently. Analyzing their words, their motions, their likes and social preferences. I wonder every single day what you would be like? What our life would be like right now. How much more driving would we be doing? Would you have decided to go to university next year? And if so, where, studying what? I have lots of ideas and guesses but there's really no way of ever knowing.

So many people remember you with love. Even those who never met you. What unbelievably wonderful feeling that is. I wonder if they all know how much their memories mean to me.

It's cold today for the yellow balloon launch from the top of Caedan's Hill. It's okay. We've done it in sleet and snow before!~ Hopefully Maeve and I will come up to the top, as well. Watch for them, they'll be on your way at the exact moment you came into this world. 7:21pm.

18 years. Amazing.

M.

Thursday, April 22, 2010 7:14 AM CDT

September 12, 2010
Eight years ago today. Seems like yesterday, feels like an eternity.

As you can see, I still have the website. Can't seem to let it go yet. So thank you very much for checking in. Like so many times before, it is such a wonderful feeling to know so many people are thinking about Caedan.
Smiles,
M.


You were 10lbs, 4oz when you were born. I didn’t know I could be so happy.
You were the first nephew for Scott’s brothers and the first grandchild for his parents.
You had the Bowers’ brown eyes.
You spoke early and clearly.
You met Robert Sanderson when you were 8wks old and were best friends from then on.
You were only 27mts old when you got leukemia the first time.
You never complained.

You were always singing as a toddler. It was like a homing device. If I took my eyes off you, I always knew where you were. Kim in the PMDU would call you Radio Caedan.
You thought all kids had port-a-caths and went to the hospital for treatment.
You loved school.
You loved your friends at school.
You were very smart. Clever.
You loved swimming and soccer and playing Gameboy.
You had a greyhound for almost two years. You loved him.
You had a baby sister when you were 6-1/2 yrs. old. You adored her.
Your favourite time was when Cali would sit still long enough to cuddle.
You read stories to Cali and played hide & seek.
You were 7-1/2 yrs. old when leukemia came back. Almost 2 yrs post treatment.
You made a friend with a “big kid” named Mike. He became a part of our family.
You were in the hospital a lot. You got sick and felt bad a lot.
You never complained.

You went to school every chance you got and played soccer and lived like a normal kid.
You adored your little sister.
You made your mom and dad laugh. All the time.
You had a LOT of really powerful chemotherapy.
You never complained.

You were 8 yrs old when you went to out west with me to see your new cousin, Noah and the mountains and your Bowers kin.
You were 8-3/4 when the leukemia got stronger instead of weaker. You went skiing the night we found out.
You were one month shy of your 9th birthday when you had a Bone Marrow Transplant to save your life.
Your dad was your match.
You had your 9th birthday in the hospital. The staff were so great!
You never complained but you finally questioned it all when a little girl named Keely died from cancer.
You were in isolation after the BMT. But we snuck into Western’s movie theatre to see Star Wars Episode II Attack of the Clones, two days in a row.
You were so brave.

You made me laugh every day.
You were 9-1/2 yrs. old when I heard your voice for the last time.
You were so strong.

You continued to fight for six more weeks.
You are in my thoughts every day.
Your smile is always here.
You would get such a kick out of your baby sister, Maeve.
You would be 17 yrs. old today.
You are my son.
You are loved. Always.

M.

Saturday, September 12, 2009 10:49 AM CDT

It's a beautiful, sunny day here in London. Exactly the kind of day it was 7 years ago. I remember sitting on a bench outside the Paed. Critical Care Unit with Dr. Cairney, just after Caedan died thinking it was such a beautiful day for something so horrendous to occur. But I'm sure the sunshine was a blessing for all of us.

I must admit I don't visit this site as often as I used to. I still check in frequently but I don't seem to "need" it like I did in the past. For so long it was the perfect way to feel in touch with everyone who loved us and remembered Caedan. How many times would I sit down just to read the guestbook entries and feel myself calm at the feelings of love and compassion written in those spaces. Many people who read this now, were reading back when I first started writing. You'll remember those entries that came from all over the continent (Alabama, British Columbia, Virginia, California), all over the world (Kabul, Sydney, the UK) and from right around the corner and down the street. What an out-pouring of love and concern that made me feel like I had a roomful of friends just sitting here waiting to help.

Caringbridge has become very popular now. So many people know someone who knows someone who has heard of or used the site. I'm so thankful for the opportunity and free use of this space since Christmas time 2000. I think this might be my last entry here. I'll download the site with it's journal entries and guestbook entries and keep it as a memorable 2-way journal to cherish and share with Cali and Maeve one day. I've struggled with this for a long time because it all seems so final but I think it's time.

Of course, my goldribbon8@hotmail.com email address will always reach me and you'd better continue to write when you can. I LOVE to hear about your memories of Caedan or just that you're thinking about him. It's really the best way to keep him alive in our hearts.

This morning we went to the Lambeth Harvestfest for their Pancake Breakfast and parade. It was a lovely way to start this family day. Cali loves to go out and do fun family things and Maeve just loves the activity (oh, and the dogs in the parade).

We'll head to Caedan's Park after Maeve's nap to plant some Pansies to go with the yellow Mums that are already there. It's a great day to spend outside.

I hope you're wearing yellow today and thinking of a strong, brave, funny, happy, good-natured, brave (yes, I'm putting that in twice) little boy who blessed everyone who knew him with a little bit of sunshine and love to carry with them forever.

Smiles and love,
M.

Thursday, September 11, 2008 11:00 PM CDT

A few days ago I was sitting on the front porch. It was a beautiful day. Sunny with a true blue sky and not a single cloud. I was concentrating on what a beautiful summer day it was because I knew that there wouldn’t be too many more of these left this year. I tuned into the birds chirping and thought, I am really happy here. I feel really good. I thought about how much joy Maeve has brought into our home and how things actually seem right. I thought about how much the three of us focus on Maeve’s smiles and love. How we all can’t wait to see her in the morning and each of us rushes in to see her whenever we’ve been away from her for any period of time.

Then, of course, I thought of Caedan and how much he would have loved this joy in the house. Which then made me think of how quickly September 12th was coming up. And then, with no control, the tears just fell down my face. I felt like the pain of him not being here just splashed across my face like a wave. But the thing is, I cried for a short, silent time. I felt the pain just as clearly as I ever have, but the joy was not taken away. I know that I can feel all the joy of loving Cali and Maeve without losing my love for Caedan. I can still miss Caedan but I can keep breathing in the sunshine on my front porch. Maeve has brought a new light into our lives that will not replace Caedan, but will only enhance our memories and love for him. How amazing is that? How lucky are we? We truly are blessed and it is a wonderful feeling.

Caedan died 6 years ago today (September 12). It feels like a lifetime ago and yet it feels like yesterday.

M.
****

September is Childhood Cancer Awareness month. Wear a gold ribbon. Donate to a childhood cancer cause. Think about Caedan.
The link below is from last year but the video still moves me.

Tuesday, April 22, 2008 8:33 AM CDT

On the day you were born
the round planet Earth
turned toward your morning sky,
whirling past darkness,
spinning the night into light.

On the day you were born
the quiet Moon glowed
and offered to bring
a full, bright face,
each month,
to your windowsill...

On the day you were born
a forest of tall trees
collected the Sun's light
in their leaves,
where, in silent mystery,
they made oxygen
for you to breathe...

... while close to your skin
and as high as the sky
air rushed in and blew about,
invisibly protecting you
and all living things on Earth.

"Welcome to the spinning world", the people sang,
..."Welcome to the green Earth," the people sang,
"We are so glad you've come!"

~Debra Frasier


Happy Birthday, my beautiful son.
The sun is beaming bright and the birds are singing clearly. Just like that perfect day, 15 years ago.


**************
Our Baby News
Tuesday April 15th (exactly one week before Caedan's birthday) our second beautiful girl was born.
Her name is Maeve Charlyn Gallagher.

She was born at 10:57am.
Maeve is a perfect baby girl. All 9 lbs., 14 oz of her.

Cali is in awe of her. From her soft, brown hair to her long, straight toes.

A baby that size is sure to be a struggle to deliver and I'm sure you can imagine poor Scott is still recovering from the shock. He's been through a lot, but I think with lots of rest and fluids, he'll be back to his old self again soon.

I feel Caedan's love for her everytime I look into her eyes.
M.

Thursday, February 28, 2008 8:49 PM CST

For the last two weeks or so, Caedan has been sitting on my heart. I think about him (mostly sadly) all the time. You'd think after this long, the phrase, "I can't believe Caedan died" wouldn't come to my mind as often in a day as it does. But it does. Very often. I'm starting to think, this is never going to get easier. (Okay, I know that it's never going to get easier). Just different.

I don't mind him sitting here. In some ways it's a nice thing. But it is hard.

Dear sweet Caedan.

M.

Monday, December 24, 2007 11:06 AM CST

Ho Ho Ho ! ! !

It’s time for a Holiday Newsletter to let you know all are well here at # 67 and to fill you in on our last year.

It’s been a wonderful year with all of us very healthy. As always, we never take that for granted!

Last winter, Cali went to Camp Trillium for 2 nights and had a blast. This is a camp we’ve been going to as a family since Caedan was little but it’s the first time she’s gone on the “Res. Camp” without any parents. That turned out to just be a warm-up to her summer adventure when she returned to CT for 10 days! A whole camp full of 8-15 yr. old campers and their counselors. She had some serious home-sickness and wrote some heart-breaking letters home, but in the end she was very proud of herself for staying the entire time and looks forward to going again next summer!

HOLIDAYS

In April, we went on our 2nd Annual Orlando, Florida trip. Again this year we met my childhood buddy Jacqui and her family from England at her mother’s Florida home and this year stayed 2 whole weeks! It was heaven. Jacqui and I just talked and laughed (oh, and shopped) the entire time while enjoying the parks and fun with Cali and Josh (11yrs old) dictating the plans. Scott & Andrew enjoyed their nightly “Gentlemen’s Margarita Hour” (dress code in effect) after a long day in the sun. Josh really didn’t know what to think of Scott in his long, plaid shorts, leaning against the counter and sipping his drink!

In August we headed west for an overdue visit to the coast and our beloved family. First stop was Agassiz to see (Scott’s brother) Uncle Marty & Aunt Lori in their lovely home at the base of Mt. Cheam.

What a picture perfect spot they have. No wonder Uncle Marty doesn’t complain about the commute into Vancouver every day! Next was the Ferry ride up to Roberts Creek on the Sunshine Coast. We finally got to see Uncle John (the little brother) & Aunt Christie’s new house 2 minutes from the beach! It was a heart-warming visit watching Cali and her cousins Noah and Julian play, giggle and even perform a “Show” for us paying guests.

From there it was downtown Vancouver for 2 quick nights and an even quicker visit with dear friend Jenn Friesen. What fun Cali had at the Vancouver Aquarium while Jenn and I people-watched and giggled like only we can!
Victoria was jam-packed, as well but we felt successful in that we managed to have long visits with my sister Anne & David and Cali got know her cousin Marian through games and giggles. Lucky us, we got a fantastic dinner and visit with my cherished Uncle Denis, Cousin Kevin and wife Laura and the girls. After only minutes of shyness, Cali fell into step with Amelia picking wild blackberries and playing like only little girls can. Can’t believe Lauren is the “big girl” now as I vividly remember her visit to London as a toddler!

Scott is still hoping to get a ski trip in this winter. He’s looking at his 2nd Annual Pat Gallagher Ski Classic being in Colorado again. His biggest challenge is taking the time off work.

VISITORS

We were fortunate to have lots of visitors to 67 during 2007. In July, Dina and the kids escaped the heat of Arizona for the mugginess of SW Ontario. The London part of her visit was brief, but we packed in a trip to Canada’s Wonderland in Toronto where the kids had a ball and Dina and I just tried to keep up. Every chance I get to see and spend time with her kids is a blessing that I will never take for granted.
It was a real treat to finally meet the famous Mary Morgan (Scott’s Dad’s Cousin) of whom I’ve heard so much. Mary was visiting from Ireland and has since become quite a penpal for Cali. Since her visit, Mary has been sending all sorts of books and puzzles pertaining to Ireland. Cali considers herself very important!
The fall brought Scott’s Aunts (the sisters) here from Fredericton for some much loved nostalgia about Scott’s Mom & Dad. They also filled us in on all the East Coast cousins activities and children! Uncle Marty sped through for a weekend in October to see his grateful Mom and charm his favourite niece. Cali was shy but followed him around the house, just the same. For Thanksgiving we had both my brothers, Pruitt and Michael, and Michael’s fiancée, Jackie. It’s impossible to have the two Bowers Men in one room and not feel like my Dad is right there, too. Genetic similarities can be amazing!

EXCITEMENT

We had a rather uneventful fall and early winter as I just couldn’t find the energy to do much of anything. Of course, that’s to be expected in the first trimester of a pregnancy. That’s right, if you haven’t heard the news by now, you’re probably like a lot of other loved ones and in a bit of shock! It took a lot longer than we had hoped and was a lot harder than we could have imagined, but we are finally going to have another baby. We gave Cali the big new on her 8th birthday in September and she hasn’t stopped talking about it yet. My due date is April 14th so we’ll have another spring baby and I think Caedan may have had something to do with that. (His is April 22nd).
Now that I’m into the 2nd trimester, I feel a bit more productive and able to start moving Cali into Caedan’s room. It has meant organizing and removing a lot of Caedan’s things which has turned out to be emotional enough that I have to do it in small stages, but in the end it’s all right. Remembering how much he anticipated Cali’s birth, I feel like he is right here beside me, just as excited as we are and looking forward to a new baby in our life here at 67.

What a year this has been ! ! !
Wishing you and yours all the best in 2008 !

With love from Scott, Mar, Cali, Angel Caedan and Baby …

Wednesday, September 12, 2007 8:49 AM CDT

I’ve been thinking about what to say today as I thought there might be a few of you checking in and I am way past being due for an update.

I don’t need to tell you that five years is a really long time. I’m not sure how five years can seem so long and yet the pain and longing can still be so strong. One more unfair part of all of this.

This past year or so has had a lot of really good changes; all things that were late in coming and long overdue. I hold onto the good things when the unfairness of life hits me in the face. I hold onto what we are lucky to have and continue to appreciate things so small that I may have passed right by them had life not taken the turn it did. That’s something I can control and shine a positive light upon. The rest I’ll continue to take on as it comes, one day at a time.

Like Scott and I, many of you have probably checked out YouTube from time to time. You know, someone tells you about a really neat video that you just have to see. Well, yesterday, a fellow cancer mom shared a video with me that I want the world to see. It was made in an effort to bring on more Childhood Cancer Awareness. (September is Childhood Cancer Awareness Month, did you know that?) The video has a bit of a U.S. political slant to it but I’m sure the message of trials and research is similar in Canada. The photos were so hauntingly familiar to me that half way through I gasped out loud (at the boy’s port getting accessed) and soon afterwards had tears steaming down my face. As only the parents and family of children with cancer could accomplish this assembly of photos reflecting childhood cancer is terrifyingly true to life. This is really happening to children every single day.
Turn on the speakers and have a watch.

http://www.youtube.com/watch?v=AGS4yE5v9rM

I've added the address below under LINKS, as well.

I’m heading over to Caedan’s Park now with yellow roses and sunflowers. It’s a cool September day here. Not as warm as the one five years ago but almost as pretty. Thank you so much for checking in. It means so much.
M.

Wednesday, June 27, 2007 7:56 PM CDT

Tonight Caedan's beautiful friends at Byron Southwood Public School graduate from Grade 8.

I've shed more tears in anticipation to this day than I ever imagined I would. I started around his birthday in April and really haven't stopped.

Who knew? It has been a REALLY tough spring. I'm hoping now that the day is almost over I can get back on track and out of this cloud of sadness.

Thankfully, there is a large handful of friends that have been right beside me to lean on and once again I wonder what I would do without them.

A fresh start tomorrow. At least fewer tears, I hope.

Congratulations, Graduates!
M.

Sunday, April 22, 2007 7:52 AM CDT

Happy Birthday!
As I’m sure you know today is Caedan’s birthday. That’s probably why you’ve stopped in today. Unless of course, it’s now past Sunday and this posting is still up and you’ve stopped by. Then this doesn’t have quite the same meaning but thanks for stopping in, anyway! I love to think people are thinking about Caedan and checking in here. 

As you know from my last posting, Caedan would be turning 14 years old this year. Hard to believe but there it is. Even Cali’s eyes widened when I mentioned this to her today. I think she has Caedan stuck as an 8 or 9-year old boy and hasn’t really thought much about how he would be getting older, just like she is. That’s fine with me. As long as he’s in her heart, he can be any way she wants.

I got over to Caedan’s park yesterday with some beautiful yellow roses. It was a sunny warm day here and there was only one other family anywhere near by while I was there. As I was pulling some dead leaves out of the garden in front of the stone I heard what I thought was a man clearing his throat. When I turned around, it was a pair of Canada Geese; not 6 feet away from me. Just strutting along, looking at me as if I was in their house or something. They poked around for a bit tasting the grass on one spot and boldly watching me. When I got up to leave I said out loud, “stay away from those roses. If they are all eaten when I come back tomorrow, I know exactly who to blame”. That’s me, talking to Caedan, talking to myself, and talking to a pair of geese. What’s scary is, it all feels natural to me!

We’ll take some balloons over today. And of course we’ll let a bunch go from Caedan’s Hill at Boler Ski Club at the time of his birth, 7:21pm. I’m hoping my knee is strong enough to get me up the hill this year. It was impossible the year before my surgery and last year as well, but I think that it’s stronger this year and it’s become a tradition that means too much to me to watch from the bottom while Cali and Scott let them loose at the top.

I hope you’re doing something special at your end of the world today and thinking about your favourite Caedan memory.

Happy Birthday!

April 22, 1993. My water broke early. I think it was around 7:00am. I don’t remember what time we went to the hospital but I remember having to wait a long time to get a room.
I remember things moving along quickly and at around 3:00 they said I could start to push. I pushed for 4 hours! That’s a LONG time. Caedan was big. We had figured that out sometime in the 3rd trimester. We just didn’t know how big. After a LOT of pushing with no epidural or any medication, the doctor checked to see what was going on. She reached in (reached in???) and said the baby was posterior. Meaning he was coming out head first, but he was facing up instead of down. Not good. She was going to have to use forceps. That’s when I said, okay, I’ll take that epidural now. He was big, posterior and I was tired of pushing. When he finally arrived, they showed him to me quickly but he needed a bit of oxygen right away. He was perfect. We had a boy. 10lbs, 4 oz. 22” long. Dark, dark hair and beautiful. I felt more happiness and love than I had ever felt in my life. I had a son. And he was perfect.

M.

Sunday, March 11, 2007 3:12 PM CDT

I added 3 new sets of photos today. Some of my favourites are included.

It's nearly spring and I realize that this time of year, five years ago (?!!!!) Caedan was preparing for his Bone Marrow Transplant. I think he had just started his Total Body Irradiation. What a horrendous experience that was; emotionally, as much as physically. We had so much hope. So much faith that this was going to be the beginning of the end of cancer. The memories of those days at Sick Kids Hospital and driving back and forth to see Cali on the weekends are sometimes so surreal I think they must have happened to someone else. But I know firsthand they are my memories and my life. As unfair as they all are.

I've been thinking about my Moms & Babies Group a lot lately. This is a group of friends I met when Caedan was just 3 weeks old. Most of them had boys. Many of them I still have close in my life or at the very least, close in my heart. In a few weeks, it will be fourteen years since I met these women. And that means that the boys are all turning 14. All but one. And while this is tearing me apart inside I am fascinated to see these boys and watch what they are doing now that they are very nearly (or already) 14 yrs. old. One went to a friend's house yesterday and then they all walked a few blocks to the movie theatre. By themselves! (but I guess they’re old enough, I’m just not part of that right now to know). One walks over to Boler Ski Hill to snowboard with his buddies. Some are babysitting, playing in hockey tournaments, playing in the school band. One continues to charm me and make me laugh like I know Caedan would have made me laugh.

Of course I can't help but imagine what Caedan would be doing at this stage in his life. I'm so thankful I have these friends and kids still in my life so it can make it easier to imagine. And while I can feel sad that I'm not watching Caedan live these years, I can also watch and enjoy the others and feel his spirit all around them.

Spring is a beautiful time of year. I'll appreciate the memories it brings, sad and joyful.

M.

Friday, January 5, 2007 10:55 PM CST

Now this is a fun story. Scott found the video on Youtube and we have both watched it over and over again.

The first link (you may need to cut and paste)takes you to YouTube to watch the vide. The second link will take you to the website to learn all about it.

Reminds us to appreciate having someone to hug.

Smiles, Maryla

http://www.youtube.com/watch?v=vr3x_RRJdd4

http://www.freehugscampaign.org/

Tuesday, December 19, 2006 9:44 PM CST

December is more than halfway through and I'm still wondering if I can get those last tulip bulbs planted. Where does the time go???

We're gearing up for Christmas over here with Cali's Holiday Choir Recital tomorrow evening and my office Potluck on Thursday. What better way to gather some Christmas spirit? Besides Cali's gymnastics on Saturday I have no plans whatsoever, for this coming weekend. I just want to slide seamlessly into Christmas and have the time and energy to remember what this holiday is all about. That is, if I have all the wrapping done by then {smile}.

Dinner is at our place this year as I wanted an opportunity to use my beautiful china. Scott's mom will come here and maybe even Pruitt but I won't hold my breath on that score.

We'll be here the whole time between Christmas and New Years if you'd like to stop in for some Cheer and Festivities.

And so, from here at 67 to all of you, I hope you are surrounded by family and loved ones this holiday season and have a VERY healthy New Year.

M.

Wednesday, October 11, 2006 5:51 AM CDT

I thought I would update the journal entry as the previous one was so heavy and sometimes they sit on the front page for awhile.

Our Thanksgiving was just fine. Funny how I expect a holiday to automatically be a hard day and then when it isn’t I’m so surprised. Of course, for us, Thanksgiving isn’t really a Child’s Event. Not like The First Day of School or Halloween or Christmas. Sure we have memories, but not ones that are really painful to relive.

I guess this past weekend was one where I was “having a good day”. That’s never taken for granted. It was not very long ago that having a good day meant finding the strength to brush my teeth. And a bad day meant barely being able to breathe. So now I define my good days and bad days a little bit differently. Sort of how our “normal” life has been redefined. It’s all in the way you look at, I guess.

Holding tight to the good days,
M.

Saturday, September 30, 2006 0:45 AM CDT

I can’t sleep tonight. Caedan has been sitting right on top of my heart today. Actually, for a couple of days. In a lot of ways and for lots of reasons. Tonight I’m thinking about him being 13 yrs. old. I feel like I’m losing track of boys Caedan’s age. I’m not around any 13 yr. olds right now. Just 7 yr. old girls. Not that there’s anything wrong with 7 year old girls, but I sure would like my 13 yr. old boy. Seems like I’m not around my friends with 13 yr. old boys anymore. I miss that. I don’t know what 13 yr. old boys are doing or are interested in or anything. The books that are in Caedan’s room are for 7 or 8 or 9 yr. old boys. There are only some old soccer trophies and team photos of little 6 or 7 yr. old boys. I don’t know what the room of a 13 yr. old boy looks like or smells like or…

I guess he would have been in cross country running this month. Maybe playing basketball at school. I know he would be missing Mr. Ashendon at school and probably asking to go and watch Rob’s hockey games on weekends. I wonder what he’d be doing on Friday nights. Going out for supper and/or shopping with us, or preferring to stay at home with his friends. I don’t know what he’d be doing. I can only guess and play pretend.

I wish I could watch the videotapes we have of Caedan. I miss him so much and would love so much to see his smile and hear his voice. But I can’t. Absolutely can’t. Just thinking about it makes me cry out loud. I wish Cali could watch the videotapes of her and her brother. But that would mean me setting them up and I just can’t do that. I just want her to watch her baby tapes and see how cute she was and how much her brother loved her. Such a normal, simple thing but an absolutely impossible thing. I was remembering that I had videotaped Caedan’s Off Treatment Party eight years ago. Luke S. and Rob & Meredith were here. Cali wasn’t born yet. It was the beginning of October and the weather was lovely. We had a piñata outside and I made a cake with a jack o lantern on the front as a Fall theme. I don’t know if I’ve ever watched that video. I wonder if I ever will. I watched a bit of a special on Eric Clapton’s ex-wife and how she had just pulled out the videotapes they had of their son who had died in 1991. It took her 15 years before she could watch those videotapes. I guess my 4 years don’t seem so bad. But fifteen. I wonder if I’ll have to wait that long before I can bare to watch them. I hope not.

I was reading John Young’s entries in Hannah’s caringbridge site the other night. He talked about how he should have been walking Hannah to school on her first day of kindergarten. I just cried when I read that. Can you imagine what it’s like to miss out on something as monumental as that? Can you imagine? Monumental, and yet so simple. All we want to do is walk our child to school. All we want to do is watch them play. All we want to do is sit and laugh at their baby tapes and photos. All we want to do is hold our child and keep him safe. They are the simplest things a parent can do but they are things that we will never do again. How can we, one day, be smiling for the camera, rocking our baby in our arms, and breathing in their perfection only to be sitting in that same chair today, with empty arms and an empty heart, wishing we could climb back into the scene forever? How can we carry on when so much of our life is in the past, in the memories, in the videotapes we can’t watch?

Some days are filled with more questions than answers.

M.

Tuesday, September 12, 2006 10:28 PM CDT

So there were people hogging the Kodak Scanner at Shoppers Drug Mart today when I tried to scan some old photos of Caedan to put on the site. ARGH! Tempted though I was to shove them aside, I decided I could do it another time. So, no new photos but a bit of a note for today.

I managed some time for myself, as well as some time with my friends. Adds up to a very good day. Karen, Jenn, Vicki and Mike all managed to make me smile today with their laughter and loving words. Scott and I raced over to Caedan's Park after supper before dusk when they close the cemetery gates. It was tougher on Scott I think because he'd been at work all day and hadn't been able to release some of the emotions through the day like I had. Like this morning when I was passing the boys' clothing section at the store and wanted to pick something out for Caedan and just started crying. Or after I saw Karen and thought about the pain in her eyes. Or when I went to the school to pick up Cali and saw the Sunflowers that Susan had brought to the school. Or when I heard from Jen that they had a moment of silence in memory of Caedan this morning at the school (I am so touched that they did this and realize that this really is the last year they need to do that, as this is Caedan’s graduating year). Or when I got home and read the emails from Sue and Lynn who remember Caedan on this day (and tell me) every single year. Or the incredible entries in the guestbook today. Now those really got me crying. Yep, those emotions definitely were released for me today.

Last week I was reading the journal entries from Aug 30th – Sep 30th, 2002. Then I read the Guestbook Entries from around that time, too. It sure helps to explain how we got through that time in our life. The support that was felt through those entries is life-altering. We have the best friends and family anyone could dream of. I knew it then and I know it now. We are blessed.

Thank you so much for checking in and wondering how we are.

M.

Monday, September 11, 2006 10:44 PM CDT

It's late Monday night and I've been working away on Childcan stuff so I haven't been able to properly update today. BUT, I thought there might be one or two of you (smile) who might drop in. I plan to update tomorrow and even have hopes of changing the photos.

It's supposed to rain tomorrow so I went to Caedan's park tonight after work and planted yellow tulips, purple hyacinth and yellow icicle pansies (thank you, my wonderful friends from work). I feel better having been able to get that done before the rain but in time for September 12th.

More tomorrow.
M.

Monday, August 21, 2006 8:46 PM CDT

Hi there,
I just read a little note a long-time cyber friend posted in the guestbook.

Wow! Does it ever read true for me. I will leave it the way it is supposed to read in the Guestbook, but will change it just a bit for this entry because it feels like it comes right from my heart.


The mention of my Caedan's name
May bring tears to my eyes,
But it never fails to bring
Music to my ears.

If you wish to do something kind for me,
Let me hear the beautiful music of his name.
It soothes my broken heart
And sings to my soul.


Maryla
p.s. It was four years ago today that I heard Caedan's voice for the last time.
m.


August 22nd.
It's the next day and this is so weird I had to share it.
When Caedan was in the PCCU which, if you go back in the Journal History, you'll remember was the Critical Care Unit, at the end, the main caregivers were the nurses but also the Respiratory Therapists(RTs). These were the people who monitored his oxygen and tended the exact science of how much oxygen was going in and out of his body (in simplistic terms) They are incredible professionals with more responsibility for the intubated patient than you could ever imagine. Along with the nurses and PCCU doctors, we called them the "Dream Team". There were three Paediatric RT's that I remember vividly. One, named Steve who we had in the Emerg last Fall when Cali had the asthma attack (seeing him was kind of freaky, but I got over that). Another was woman whose name escapes me but was a sweet, little thing who looked about 22 but I know was older. The third, David, is actually a neighbour of mine and the husband of someone from my bookclub. With the exception of last year seeing Steve and seeing David maybe 3 times in the last year, I never run into these folks. And then today, the day after I wrote the above entry; the date when our world began it's final spiral; the time of year when all I can think about is the PCCU and the respirator and the "Dream Team", I saw David out walking AND saw the sweet young woman RT in the grocery store. Today. Things come together sometimes even when we don't intend them to and certainly when we least expect them to. I try not to get too freaked out by these things but I don't believe in coincidences and I can't help but wonder why I would see these people today, when they were so prevalent in my mind.

Anyway, like I said, it was a freaky thing that I had to share. Makes you pause...
M.

Monday, July 10, 2006 9:30 PM CDT

This is a rough time of year. May and June had no significant dates to refer back to but this is the time when Caedan was getting his strength back after transplant. This time four years ago, we were trying to live life to it's fullest with walks in the wheelchair and birthday celebrations. I just read back to the journal entries this time in 2002. I got as far as Scott's birthday (July 19) and how Caedan spent the evening watching Rat Race with Mike and I just fell apart. Why do I do this to myself? I know that it is almost exactly four years since I heard his voice. I just want to curl up and cry when I think it's been that long. I want to just remember the fun days we had together in July...completely oblivious to what lay ahead. But the shadow comes down and I feel like I'm drowning. Drowning in grief that was supposed to be better by now.

I logged onto the site to put a funny message about how there's only 6 more shopping days until my 40th (FORTY) birthday but instead I'm bringing us all down. I don't think Caedan would have liked that. And so, let's talk about cake and flowers and cards instead, shall we? If there's one thing the Bowers always take seriously, and what I've taught my Gallagher children, it's celebrating birthdays!

So, if I don't talk to you on Sunday. Make sure you have a fantastic time celebrating my birthday in whatever way you can. I know Caedan would be the first one in line.

Smiles,
M.

Thursday, June 15, 2006 10:56 AM CDT

London's Relay for Life is tomorrow. I'm planning to go down (for the first time) at nightfall to see the Luminaries. Always breath-taking. I will miss being part of the Windsor Relay this year but it would have been impossible to manage that and everything else. I also find that with all that's keeping me busy with Childcan, I need to choose my charities for now. My gosh we had a good time at that Relay last year and the year before. I'll have to dig out some pictures of our tent decorated with all those photos of people we love who have had cancer. What an amazing theme, Lori!

Thanks for checking in and for leaving a note. It is so nice to see people "visiting".

M.

Monday, May 8, 2006 9:22 PM CDT

About six weeks ago I was asked if I could say a few words as a bereaved parent at the Children's Hospital Memorial Service. They have this service twice a year for any child who has died at CHWO. We went to the one after Caedan died and it was very special as we were there to remember, not just Caedan, but also Dustin and Joshua who had died before and after Caedan. It was lovely and I was very impressed that they offered this service. So, when I was asked to speak, I felt the need to give a little back and I accepted. Little did I know that I would end up having an horrendous week at work that plateaued that very day the service was held. I was drained from crying more than a little over work stress and thinking that the service was the last place I wanted to be. But, I had made the commitment and Cali was coming with me to light a candle and I realized I just couldn't back out.

Well, wouldn't you know, going to that service was the best thing I could have done that day. It reminded me what is important. It put things back into perspective from where I'd let it slip away. I remembered that my job is there just to pay the bills and my life,my family, my friends, and the things I do to honour Caedan's life are what absolutely, positively matter in this world. I am so glad I went on Thursday and stood in front of a roomful of newly bereaved parents and told them what I think keeps me going every day that I am without my beautiful son.

And so, I have attached my very short talk on Hope. It was a topic I was worried about because I didn't really think Hope was very prominent in my world. Then, when I sat down that afternoon (I meant to do it well in advance, but just lost track of time. I ended up looking at it like one of my entries in here and the words just flowed out) to write my thoughts on Hope, I realized it really is what keeps me going. Anyway, I'll let you read it.
And yes, I cried through part of it. Cali stood beside me, the sweetie, giving me the support she always has.

****
What Does Hope Do for Me?

In the beginning, I hoped it was all a dream.

But it wasn’t a dream.

I hoped for understanding.
But there is no way I could understand why my 9 year old boy would die.

I hoped for a normal life.

A normal life? Well, now I have a different kind of normal. A normal where grief is a part of my life, but it isn’t my whole life.

I hoped the pain would go away.

The pain has not gone away. If I told you it did, I would be lying. In fact, I don’t think the pain has lessened at all in 3-1/2 years. But, it is different. It is not as consuming. It is not so over-powering.

I think the pain is just as great, but my hope has grown enough to put the pain in its place.

With hope, I can get up in the morning and go to work. I can watch my son’s friends in the school playground and keep breathing. I can look at his photos and sometimes, not cry.

I can now see a different future for my family than I thought we had. I know now that I couldn’t see a future if I didn’t have hope.

I hoped for peace in my heart.
Now, I feel, hope cradles my heart. It cushions the pain and helps my heart to see the joy and love that is still in my life. That’s what hope does. It lets me see the joy and love that is still there.

M.

Saturday, April 22, 2006 9:10 AM CDT

Happy Birthday to you,
Happy Birthday to you,
Happy Birthday Dear, Sweet Caedan,
Happy Birthday to you....


I posted some of his birthday celebration pictures on the Photo Album page.
Enjoy.
M.

11:02pm
I'm sitting on the grass at the base of this big hill. Cali and Scott have climbed up with a bouquet of balloons grasped tightly in the wind. It was a beautiful day here. Not like the usual cold and rain. Bright and sunny and warm. But, now it's cooler and the sun is dipping down below the trees. I should have grabbed a sweater before we left. I'm sitting here waving to Cali as she and Scott grow smaller and smaller, taller and taller up the hill. Somewhere in a tree nearby I hear a cardinal singing madly. They have reached the top. Cali waves some more and I see the flash of the camera as Scott takes my requested photos. And then I see that it is exactly 7:21pm. It is this exact time, 13 years ago that my son was born. I had never been as happy as I was at that moment, 13 years ago. I'm sitting on the grass, crying sadly.

Monday, March 20, 2006 9:07 PM CST

Hi,
I'm still here. Some of you have "suggested" I close the site if I'm not going to put updates up but I just can't yet. Close the site, I mean.

I have been working on an update. Started back in January... Yup, any day now... Any day...

I miss Caedan every day. I could cry for him every day. Every single day. I say could, because I stop myself. Not all the time, but many times. I have to, or...(see above) I'd be crying every single day. I miss him every single day. I feel the pain of his loss every single day. I wish he was with me every single day. I'm crying now.
Every single day.

M.

Sunday, September 11, 2005 10:24 PM CDT

Three years later and the sorrow I feel is still a very physical pain. I'm not sure if I can describe it. When I think about Caedan and his absence, I get an actual tightness in my chest. Nothing else can do this to me. It honestly feels like something is squeezing my heart. Not to the point of panic, but an actual pressure that I have to breathe through and shift my thoughts from.

Four nights ago at the dinner table, Cali said something silly and funny. Instantly I thought of how Caedan would have reacted to this. I thought of how he would have laughed right along with us and have been as entertained by his little sister as we are. And I just felt such a sadness. Such a loss. It was like he was at the table with us for a millisecond and then, just as fast, he was gone. And his chair sat empty. It was like when you're trying to think of something and it is right there on the tip of you tongue or the edge of your mind and you had it… and then pfft, it is gone. And you know it's gone and there's no sense even trying to get that thought back. Caedan was there, with us as a family and then with a whisper, he was gone. But unlike that vanishing thought, he isn't going to come to me in the middle of the night. Or the next day when I'm driving to work. He's just gone. Just like that.

I am still completely in awe of how much emptiness I can have. How much pain I can bear. How much sadness I can hold inside and continue to breathe and live and carry on with life. It feels like a charade. But it's my life and there is just no getting around that. This is my life. Without Caedan. On and on and on.

Thank you for remembering him. Thank you for talking about him and smiling when you think about him. Thank you for continuing to hold him in your heart. It's all you can really do, but it is a lot.

M.

Monday, August 8, 2005 10:53 PM CDT

By now many of you have heard that my dad passed away last week on July 29th. I still don't think I've got my head completely around it all.

Apparently, he died peacefully in his sleep completely unexpectedly, though. He has been in a nursing home since the end of May. He went there after being in hospital for about 2 mts after he took a bad fall and injured his back. Physically, he was healing, but cognitively, he failed quickly. A fast-paced dementia took over through the last few months and he became easily confused and had difficulty performing regular tasks. It broke our (my brother, Pruitt and I) hearts to put him in the care facility but we knew it was what we had to do. He was in a really nice place in Amherstburg (just a few miles from his home) and admitted to adjusting well and actually saying he was satisfied and appreciative of his new home.

I guess this is why it was so surprising when he died. I wasn't expecting it yet. I guess I thought he would ultimately die from an illness or he would fall, break a hip and then not ever quite recover from it. But he hadn't seemed much different than usual when I saw him 4 days before. More lethargic maybe, but nothing startling. We figure it must have been a stroke but I am so grateful it was so peaceful. I know in my head that that is what is best. In my heart, I just wish he was still here.

I've said it so many times before, there is nothing so final as death. And even if it is an aging parent, the loss is still great. It is still such a loss.

I've included his obituary from the Windsor Star for those who knew him.
I'll dig up some photos of him and the kids to add the on-line photo album.

Thanks for all your prayers and well wishes. They really do help.
M.
******

Robert Bowers
BOWERS, Robert C. Good 'Ole Bob died peacefully in his sleep at Richmond Terrace Care Facility, Amherstburg, Ontario on July 29, 2005. Born on November 20, 1926 in Collingwood, Ontario, Bob was raised in Toronto, started his radio career in Pembroke, Ontario and then worked in Edmonton, Alberta before settling in to live life to the fullest in Windsor, Ontario. Bob was a radio personality who became known as Good 'Ole Bob during his programs such as All That Jazz and the Music of Your Life at CKLW Radio. His initial claim to fame was being the first black person to read the news on the CBC's national program in 1963. He retired from CKLW in 1991. Dear husband of the late Doreen (1988). Loving father to Pruitt Bowers (Windsor), Maryla and husband Scott Gallagher (London), Michael Bowers (London), Anne Bowers (Victoria, BC), and Charlyn Bowers (Armstrong, BC). Beloved grandpa to nine grandchildren. Predeceased by his grandson Caedan Gallagher (2002). At Bob's request, there will be no hoopla or fanfare. A private ceremony will be held for family members to help send him off to the Great Radio Station in the Sky. In lieu of flowers, donations in memory of Bob would be most appreciated to ChildCan (Childhood Cancer Support Group for Southwestern Ontario) P.O. Box 9038 London, ON N6E 3P3. The family wishes to thank the caring, compassionate staff at Richmond Terrace for their warmth and understanding during our father's brief stay as well as his neighbours who have looked out for him these last several months. A special thank you goes to Carol and Tom Mangin for their love and friendship. Families First Funeral Home & Tribute Centre (969-5841) 3260 Dougall Ave. entrusted with arrangements. You may send your cherished memories online at www.families.first.ca
Published in the Windsor Star from 8/4/2005 - 8/6/2005.
Guest Book
www.legacy.com/can-windsor

Sunday, June 5, 2005 9:23 PM CDT

Hello hello!

I'm afraid to look at when my last update was. A long time ago, that's for sure.

Life seems to be speeding along like a rocket and I'm racing after it on a scooter. Not a good mode of transport!

My month of June is already pretty much booked solid and we haven't even seen the first Monday, yet. How can that be? OH, but I have seen my first June bug. And if you know me at all, I am not impressed. Is there anything uglier than a June Bug? I think not. There is one climbing up my screen door right now (on the outside, thankfully) that Tog the cat is lunging at. I swear he's going to go right through that thing in a minute!

I realized last night that the Relay for Life is a precious few weeks away and I have yet to get a single pledge! And so, I have begun the search for pledges and will add a link to this note in case you'd like to donate at my CCS site. So many of you have been so generous to me and the Canadian Cancer Society (and the Terry Fox Run) in the past few years and I hope you know how much I appreciate it. I can't help but jump headfirst into a cause like this that I feel so strongly about. And the fact that the team is named after Caedan gives it that much more heart for me.

Please don't feel pressured. I appreciate that there are SO many "runs" and "walks" and fundraisers out there right now. But if you're looking to support a great cause, I appreciate you thinking of this Relay for Life!

Now, I'd better go make sure that screen is closed tight! Ew!
M.

To Pledge me Online Click Here

Tuesday, April 19, 2005 9:57 PM CDT

Birthdays are such a special time. And Caedan's birthdays are still just as special as they were before he died.

I feel it is perfectly sensible to celebrate Caedan's birthday every year even though he is gone. The celebration lies in the Day of his birth. The day we first met our precious son. All 10 lbs, 4 oz of him. With a head full of black hair and the brownest eyes ever.

A special day for a truly special boy.

Thank you for all the notes in the guestbook. I love reading them.

Thank you to the friends who have already started to send us support for this bittersweet time of year.

Thank you to everyone who remembers our Caedan with love and laughter on April 22nd and every day.

We'll send out yellow balloons from Caedan's Hill at Boler Mountain Ski Club at 7:20pm on Friday. We'll watch for yours too.

I added some "birthday pictures" to the Photo Album. Enjoy!

Happy Earth Day!
Happy Birthday!

M.

Saturday, February 26, 2005 1:03 PM CST

Well, I was kind of thinking it might be time to retire this website. Now, I'm not so sure.

I'm finding it more difficult to sit down and write how I"m feeling. You would think it would have been harder a year ago but that's not necessarily the case. Maybe I "needed" to write more in the past than I do now. I don't know. I just know that when I sit down to write an update, my eyes fill up, and I just can't bring myself to write anything. I'm still so incredibly sad. It just isn't so raw anymore. There are many more emotions that have taken the place of the ones in the beginning. Ones that I can't begin to describe right now.

Maybe this is just another phase of grief. I wonder if in a few months time I won't be able to sit back down and let my fingers fly through my thoughts. I think I'll hold onto the website a bit longer just in case.

I can not stress enough the impact your guestbook entries have on me and my ability to cope. What a lift it is to know you are checking on us and more importantly, remembering Caedan. You wouldn't believe how important it is for me to keep Caedan alive in everyone's memory. So important that it makes me cry (again!) just writing about it so I'm going to stop here.

I'll get my feelings in check a bit better and write more some time soon.

For now, let me just say thanks so much for checking in. And thank you so much for remembering Caedan. He was too special to forget.

Hugs,
M.

Monday, February 14, 2005 9:39 PM CST

Just checking.

Are you still there? Checking in?

Okay, if you're still coming then I will keep updating. Just wanted to make sure someone was there.

M.

Friday, December 31, 2004 10:28 PM CST

Happy New Year my friends.

May Health and Peace hold your hands this year.

M.

Saturday, December 25, 2004 0:34 AM CST

I wonder if there is anyone in London who could make it to Caedan's Park today and light a candle in his lantern? I feel wrong that I'm not there to light it on Christmas day. I understand there is a bit of snow there that might make it difficult, but if you are passing by or live nearby, I would really appreciate it.

Merry Christmas, my friends,
M.

Sunday, December 19, 2004 12:44 AM CST

I'm hoping you could set aside some time to say a prayer or send your thoughts of strength to sweet little Hannah. She's had a shift in her struggles and could use the wonders of positivie thinking.

Her webpage link is below.

I know I'm far behind in an update. It seems like my feelings are taking a heightened surge and are even a bit more than I care to write about most times. I try very hard to stay on top of my emotions (that doesn't mean I can control them, just that I try to stay aware of them). This season hasn't helped much. Back in October we decided on a non-traditional Christmas (non-tradtional to us, anyway).

We haven't put up a tree or much in the way of indoor decorations but we did light up the big spruce tree and other outside spots.

I am able to convince Cali that the reason we didn't put up a tree is because we don't plan to be around the house much over the holidays and because Tog the 6-mt. old kitten will demolish it and all it's decorations inside an hour. (both of these things are true, but are not the true reason). The truth is I just can't stand the idea of a tree and holiday cheer. It's just too much for me right now. Worse than last year, for whatever reason. Just looking at other people's trees is upsetting so...

The whole shopping thing is a lot to get over, too. I've done a lot on-line and cut back on recipients this year. We're actually only buying for kids this year. It's more than enough as far as emotions go and time-wise, too. Maybe a bit Grinch-y but that's just the way it is.

We are anticipating some good visiting and wonderful reactions from Cali on Christmas so it will still be a lovely time. Just different than the past. Maybe next year will be another Down South Christmas.

Right now I have to go help get snowsuits on two happy little 5-yr. olds. Cali has a friend over and they want to go out in the -22C windchill afternoon snow to play. I'll watch from the window, thank you very much.

I wish you all peace and love for this holiday season and the new year to come.

Love,
M.

Sunday, October 17, 2004 8:01 PM CDT

I know I shouldn't preach to you about donating blood. You do such a wonderful job, but I'm going to anyway.

Did you know that when you donate blood, you aren't just donating blood? What I mean is, there are different needs for your pint of blood. You could be giving blood, donating the plasma, and getting the red blood cells back. You could be donating platelets or albumen for one of our kids who are dependent. The donated blood is so precious for someone who's counts are low and can't produce her own. Did you know that sometimes, the kids in our hospital have such low platelet or hemoglobin counts that they need a transfusion desperately? And sometimes there isn't any available? Seriously. In this amazing province of our's with extraordinary health care, some kids (and adults, but I'm just talking kids right now) do not always have the blood that they need when they need it. And this is not through lack of trying from the Can. Blood Services. They are desperate to bring new donors on board. You've seen their ads. And did you know, that only 3f the population donates blood? Three people out of 100. How many people are employed where you work? Do the math, that's not very many people donating blood.

I'm not even talking about the "specialized" needs. Like HLA Matched platelets (where you have to be a certain match of the recipient for the platelets to work). Some of our kids are so platelet dependent that the "regular" donation isn't enough to keep the counts up high enough for more than a day or so. Imagine? I remember Caedan's platelets not staying up after his BMT and how we rejoiced when they found an HLA matched recipient for him. It meant less transfusions and a stronger system. {see journal history May 24, 2002 ~although now I know that platelet transfusions only take 2 hours, not a whole day!}

So, you wonder what has prompted this tirade late on a Sunday night? Two reasons. One because it is always on my mind. Especially when I have let more than 2 weeks pass between my own donations and I am feeling guilty. And two, because of something Hannah's parent's wrote on her site this weekend.
****
<< Hannah had 17 transfusions of hemoglobin, platelets, and albumen during the month of September. Thanks to all you blood donors out there!>>
****
That's a lot of donors for one little girl. Imagine a whole wing at Children's Hospital... Imagine.

Thanks for listening. You know I get a little head-strong when something is important to me.

And remember what I said about 3 out of 100. Maybe you could think about requesting a mobile clinic to come right to your workplace? Or the Clinic's Transit bus could come right to your office and pick up a group from your office.

It's easy. Call 1 888 2 DONATE.

Smiles,
M.
And check out Hannah's site. The link is below.

Sunday, October 10, 2004 9:10 PM CDT

Just got home from a fantastic Thanksgiving dinner at Janet's. She is in her new apartment and it's the first "holiday" there. Cali just loves her "apartment living" with a balcony and an elevator and just the whole change of scenery. Scott and I have said that we will never move from this house. First of all, it's perfect. Second it is in the perfect neighbourhood (except there are no 5-yr.old girls close by!). And third, because all of Caedan is still here. Not just the memories and his spirit, but as long as we're here, I can picture him in my mind in places in the house. I can very clearly picture him sitting on the couch or at the dining room table or, of course, in his room. We can never leave this house because this is Caedan. Sweet Cali knows this and said tonight on our way to Janet's, "since we can never move out of our house, it's good that Janet has moved because then we still get to have that kind of change". I guess we are living that part vicariously through Janet. Cali continues to see the light.

I didn't get to Caedan's park today as I just ran out of time, but I'll go tomorrow and plant the icicle pansies and the pot of Mums that is still sitting in the pot beside his stone. It dries out too quickly like that, so planting it in the ground is safer. I also have a little scarecrow to stick in the ground and bring back the lantern to hang on the Shepherd's Hook. I light a tea light candle in it whenever I go to visit. Everyone around us does, too. I'm sure I've told you about the beautiful site it is to drive by and see the flickering tea lights inside the cemetary.

We went to a funeral this past week. Little Austin died with Neuroblastoma last Friday and the candlelight ceremony was Tuesday. He was only 7 yrs. old. Austin with his mom, Anita was the first child we met when Caedan relapsed 4 yrs. ago. Austin had just been diagnosed with Neuroblastoma. He was only 3-1/2 yrs. old and he was terrified. I kept thinking how different it was with Caedan with the relapse from when he was diagnosed the first time, just one year younger than Austin. This time, Caedan understood so much more and wasn't nearly as terrified. Oh, he was terrified, just maybe not as much as dear, Austin. He worried about Austin and his mom and how much they had to endure on their own. He worried so much about the "little kids" in that hospital.

Anyway, the funeral was very difficult. I have been to visitations of children we have met in the hospital who have died, but except for Brennan's (which was a very special circumstance), I have mostly stayed away from the funerals. The pain and devastation is just too hard to see and feel. Well, too bad for me. So what if it's difficult? Sometimes we have to do something that is hard and painful. What would have happened to us, if our friends and family hadn't done the painful things for us that they did? Going to the funeral and seeing Anita and more than five other families who have lost their children to cancer (YES, I said FIVE!)put me back quite a ways. In some ways, I felt like I was two years in the past as far as the rawness goes, but I couldn't live with myself if I didn't go. I had an excruitiating migraine that night and into the next day. I missed a day of work and re-lived a lot of Caedan's funeral but I knew and cared about Austin and Anita for way too long, not to have a proper good-bye. Too bad if it hurt. That's what friends do. It's what our friends did. And thank goodness they did!

I'm not sure what Anita has to be thankful for this year. If I dug down deep into my faith, I'm sure I could come up with many things. Hopefully while I lie in bed tonight wishing sleep to come, I will think of a few things. Right now, I'm feeling too sad for her. And for Austin.

I know am thankful for so many things. Most of all, for Cali Beth. The sunshine of my life. The reason for my life. Our friends and our family. And I am so thankful for our health. It sounds corny but we appreciate our health and the good health of our loved ones so much. We would never take it for granted.

Happy Thanksgiving Day, my friends.

M.

Thursday, September 30, 2004 8:15 PM CDT

I was at the ChildCan Dinner Meeting last night and I spoke to the mom of a young boy who had Leukemia at the same time Caedan did (the first time). Her son has cancer way behind him and for all intents and purposes, he should have forgotten everything all about it. I think his parents remind him of some things. Or should I say, some people? They are a loving family who appreciate everything they have and take nothing for granted. I know they prayed very hard as a family, for Caedan when he was so sick.

Anyway, when I do see Anthony's mom, she will talk a bit about about her sons in a casual way but I can tell that he is a special boy just like all the kids who have been been through treatment. She told me last night that he was telling her that he know 3 Caedans. They are all spelled differently. One is his cousin. One is someone they have just recently met, and the third, he said, "was Angel Caedan". It just warmed my heart to think that Caedan's memory stays inside so many people. How much simpler it would be for Anthony and his family to leave behind those types of memories and block from their minds all the pain those memories might cause. How wonderful that they don't do that. They remember my beautiful boy still.

Such a simple conversation but it gave me a spark just at the right time. You just never know.

M.

Thursday, September 9, 2004 10:53 PM CDT

Today is September 9th. I checked the Journal History on this site and I had an entry on Sept 08, 2002. That was the last one before Caedan died. As many of you realize, this Sunday will mark 2 years from the last time I touched Caedan.

I took this week off work deliberately anticipating some very tough days. I fully expected one of my oh-so-familiar stress-induced migraines to develop for a week-long stay. I figured that it would be extremely difficult to take Cali to her first day at Byron Southwood P.S. I assumed that by walking up the path and standing in the yard where I stood so many time waiting for Caedan, my composure would come crashing in. But it didn't. I was okay.

Scott and I took Cali on Wednesday and we were okay. I went into the office to hand in one of Cali's epipens and spoke to the secretary. Not only that, but I smiled and used real sentences. I made eye contact and spoke to the EA, Mrs. Swanson who Caedan used to speak so highly of. I laughed and chatted with two of my favourite 11-yr. girls in the whole world, Alyssa and Marley, Caedan's school chums. And, I sat through an introduction to Cali's teacher and classroom without breaking down. Even when she asked each parent present if they had any older children at the school. I just answered "no" and decided to let her off easy for now!

Amazing. I was so prepared for the worst. And so far, I have not fallen apart (although, my dear Jenn did remind me that the week is not over yet!). And yet, there have been a few times this summer where something has caught me totally unaware. Caught me so off guard that I've had to leave the situation or event altogether. Times that I might have anticipated being awkward but never imagining that I would start to cry and fear that I would never stop. Situations that bring tears to my eyes even now as I write this. And yet, I never saw them coming.

And so, grief continues to give me tests and trials. Reaching out to me when my guard is down and grabbing me by the knees when I thought I was standing tall. But my soul and strength continue to surprise me. Pushing away the pain and helping me back up.

I wonder how I made it through these last two years. I wonder how I'll manage the next.

M.

Sunday, July 25, 2004 9:58 PM CDT

I put three new pictures on as I thought it was time.

For those of you who were wondering, I had a marvelous birthday! Scott and I drove to Dina and Matt's in Michigan where Tina joined us. We then went for a great dinner with a "surprise" birthday dessert"! After that, it was The Palace of Auburn Heights to see Annie Lennox and Sting in concert. I'll tell you, I will never be able to see a concert again in any seats but main floor! We were 8th from the front. I could see Annie Lennox's eye makeup! We were RIGHT there. It was magical. Annie sang with her heart and made it all look so easy. I kept thinking about how much fun she seemed to be having and marvelling at how much she obviously loved what she did. But I enjoyed it so much that I found myself worrying about when it would be over. The idea that she wasn't going to keep singing to us forever and ever was very sad. I think I could see her perform every year for the rest of my life.

Sting put on a great show, too. Even better than I had imagined. It was a fantastic combination of talent that I won't ever forget!

Cali had a good time at a sleepover at Scott's Mom's house and we were able to have a little grown-up time with Dina, Matt, and Tina. Something we've been craving.

I'm going to keep this update light. Sometimes I have good days. Today is one of them and I think we should keep it that way.

Smiles,
Maryla

Thursday, July 22, 2004 9:10 PM CDT

!!! New Photos Coming Soon ! ! !

Monday, July 12, 2004 10:02 PM CDT

Little tidbits of memories come back to me every now and then. Happens to everyone, I'm sure. Today I was reading a book recommended to me by my friend Valerie. I was on the porch for a few minutes while Scott was lying down with Cali helping her fall asleep. It's really muggy out and the A/C feels really good but I felt like I should get at least 10 min. of fresh air all day! (ah, but I digress). So I was reading the last chapter of this book that I was really enjoying. One of those books where you start to slow down as you're nearing the end because you just don't want it to be over... (oops, there I go again, another tangent). In the book the main character had a turkey wishbone and was pulling it with her teenage "Little Sister". Her wish was that her "little sister" get the wish.

Just like that, a memory slid into focus. I remember drying a wishbone one day and offering a pull with Caedan. It struck me as funny because it had never occurred to me before to save a wishbone and have a pull. It was one of those things that I grew up with (like most people) but had forgotten to share with my child until suddenly, that day. Inside, I was so excited that I had remembered and called for Caedan to come and see something. I explained the concept and we both made a wish. I remember wishing that he got the long part of the bone and his wish. I remember wondering if that's what my Mom used to wish for, too. That I would get the wish. And guess what! He got the wish!

Tonight, I sat on the porch and realized I'll never know what Caedan wished for. I smiled when I figured it was probably a missing Pokemon Card or a trip to Disney World. Makes me think of a whole list of wishes I'd like to make now. But really, only one wish would make me happy and I know there is nothing that can ever happen to make that wish come true.

I think from now on, I'll give my wishes to Cali. Her's will probably be more realistic.

Oh, and the name of the book:
Good Grief by Lolly Winston.
I'll tell you all about it sometime.

Time Check - 3 more days until my birthday! ! !
And no, it is not forty yet!

Tuesday, June 29, 2004 8:16 PM CDT

Wow,
If I wait much longer, I won't have to write an update on the Relay. Everyone else will have done so for me!

Please check out these websites for some great stories and fun-filled pictures.

We had a riot! Emotionally, it was quite a hit for me, but what better group to be with than the ones who love me most?!

Thank you Friends of Caedan Team. You continue to help keep me going each day!

Mar

http://journals.aol.ca/thewightmans/TheWightmans/
Top Ten List

http://www.caringbridge.org/ca/bryanbanister
Great pictures of the tent and another Top Ten List!

http://www.caringbridge.org/canada/lucashammond
Great slide show!

Monday, June 14, 2004 8:23 PM CDT

Did you know that Caedan was 10lbs, 4oz when he was born? As Stacey so eloquently put that night I called her from the hospital, "Holy bleep, Maryla, that's like the size of a sack of potatoes!" Ya, he was big. He was always at the 99th Percentile as he grew and grew and grew. As his thick dark hair began to fill in, the first hint to his soon-to-spring curls was the widow's peak in the middle of his forehead. As the hair grew longer, it became more similar to the Bowers Cowlick. And then suddenly, the curls erupted and he became even more beautiful.

He outgrew the sling and snugli before he could use them. My back has never been the same after lugging him around in his baby carrier. I think he would have been quite tall. Probably 6', at least. I wonder what it would have been like to look up at him. I wonder.

New Pictures on the Photo Album - June 14th.

Sunday, June 6, 2004 10:31 PM CDT

Friends of Caedan Baseball Caps.

Hello all,
I am going to order more FoC Hats this week.

Does anyone need one?

The cost remains at $10.00 each with all proceeds going, this time, to the Relay For Life, Canadian Cancer Society.

I'll try to put the picture of the hat back on the website photo album so our new readers can see what they look like.

Email me quick with your orders.

Maryla

Tuesday, May 4, 2004 8:22 PM CDT

Oh my friends,
The brave captain of the Friends of Caedan Relay for Life Team is getting worried. She had hoped to cover our tent with at least 720 photos of people who have been touched by cancer. She is falling way short.

Please take a moment to find a picture and mail it to her at the address on the homepage on this site. Or, you can email her one. Even one from your webpage if you have one.

Any of you who are reading this site knows Caedan in some way (even if it is just through me)so you can send a picture in. Or, do you have one with yourself or your kids with Caedan? Or of your grandmother who had cancer or your neighbour how survived cancer? Anything? How about one of you wearing your Terry Fox Run T-shirt? Or one of you or your child sitting on "Caedan's Bench" at Byron Southwood P.S. Come on, you can think of something.

We need more pictures. And feel free to pass this onto ANYONE! Mention it everywhere. I think that looking at 720 pictures of people who have in some way been affected by this awful disease but still have hope and faith, will be very inspiring to us on the team, and everyone else in the Relay.

Don't forget to put a little something on the back. Your name or how you are touched by cancer.

Thank you so much,
Maryla

Wednesday, April 21, 2004 10:35 PM CDT

In about 15 minutes it will be my baby boy's birthday. He should be turning 11 years old.

Strangely enough, this one is hitting me much harder than last year's. I think with all the fanfare and excitement we had planned last year, I was able to concentrate more on the fun things happening and wonderful tributes being given for him that I didn't get a chance to really think about what was happening.

It's my son's birthday and he isn't here to celebrate. How can that possibly be true? It has been such an emotional week and I get so angry to think that I'm not anticipating tomorrow like I did for 9 years. Ten, if you include the anticipation I had during my pregnancy awaiting his "birth" day. Now all I can think about is that I have to go to the cemetary tomorrow to "celebrate" his birthday with him. I have to buy sunflowers and balloons that he can't see and touch.

All I can think about is that this wasn't supposed to happen. This wasn't supposed to happen.

M.

Saturday, April 17, 2004 8:34 PM CDT

Hi there,
Just wondering if anyone would like to sponsor me for the Relay for Life. I wouldn't ask if say, the money was going right to me (well, maybe I would but let's not get into that right now) but it's going to the Canadian Cancer Society and that is so important to us and so many people I have come to know and love.

Any amount would be so appreciated by the Canadian Cancer Society and the people who use their services every day. There is so much more to the CCS than just research. I believe in cancer research and understand all that it has done and changed in the last 30 years but I also know that there is more than just the research. There are much more immediate needs for cancer patients and survivors. My friend Patsy told me tonight that cancer is coming close to surpassing Heart Disease as the Number 1 killer of Canadians. That terrifies me. There are so many people who need the help that CCS provides. Please consider donating. The website will do a much better job at explaining it than I ever could. See below for the link. If you're interested, you can contact me directly or pledge on-line at the CCS website. This way is easiest but any way is possible!

Thank you!

And thanks to everyone who sent their thoughts and messages about poor Garfield. We're missing him here.

Maryla

Monday, April 12, 2004 8:46 PM CDT

Hello all,
I hope your long weekend was wonderful. Easter Sunday was lots of fun hunting down eggs and then trying not to eat all the chocolate. I think Cali has taken an Egg Count of her find, just to be safe from Mommy and Daddy.

I was off today and work tomorrow. Off Wednesday for my day trip to IKEA with Karen Schindler and then work Thurs. and Fri.

Now, the real reason I'm writing tonight:

I've got some really sad news here. Garfield the Cat died today. He has been suffering with a Urinary Tract Infection and he was really bad off yesterday and today. I took him to the vet this moring and they had to catheterize him and empty his bladder. When they put him out with the gas anaestetic, he had what they think is a heart attack. He died. I am so upset. He was such a fun cat. Cali is doing better than me. Her biggest concern was me. She was quite worried about me crying. What a sweet little girl.

I'm still really bummed out by it all. He was so fun. I don't think his sister, Cotton has even noticed he's gone. Actually, she might when she realizes the yummy, expensive, canned cat food that I've had to buy for Garfield is gone. Then it might click in that something is different. She's a sweet cat, but not too bright.

I know, he's just a cat but we really liked him. I always said he was more dog than cat. Greeting everyone at the door and playing whenever we wanted him to! This is the fourth cat I've had that has died. Well, fifth if you include Rover who was allegedly poisoned by our racist neighbours when I was just 4 yrs. old. I think I do a good job at putting things into perspective and I'm sure that in the big picture, this isn't that big of a deal, but frankly, I'm tired of being saddened. Up and Down, Up and Down, the roller coaster ride continues.

Caedan loved Garfield. We only had the cats for 3 mts before he went for his BMT. Then when he came home the cats were at my Dad's for the Post Transplant period. We didn't get them back until about a month after Caedan died. He never had much time with them but he sure enjoyed them when he did. I hope they are playing together now.

And so, I think now, I'm going to go have a soak in the tub and read my book. Try to melt all the sorrow away.

Thursday, April 1, 2004 8:46 PM CST

I am so thrilled.
Canadian Blood Services called today and asked if I could give Platelets. They've never needed my platelets. I give Plasma because they can use anyone's plasma. But with platelets, for some reason, they don't need B Positive. BUT, sometimes, if someone is my HLA match they need my platelets. It doesn't matter what my blood type is! (for example, Scott gave Caedan his platelets because they were HLA-matched but had different blood types!).

I'm so happy I can do something so significant for someone else. I so sorry that someone needs them, but happy I can help!

Unfortunately, I had some blood work done today and had fasted for 14hrs so there was no way I could go give the platelets today. But they are going to call me next week. And maybe regularly. Imagine the difference I can make. What a feeling!

I read in the guestbook that Amy is giving blood on Caedan's birthday. Thanks Amy, for that idea. This is becoming an annual thing and I really appreciate that. I hope everyone who is reading this plans to celebrate Caedan's birthday in some way again this year. April 22nd. Coming up soon.

Love,
M.

Wednesday, March 10, 2004 8:53 PM CST

Friends of Caedan!

Did you notice all this information about the Relay for Life? I'm going to keep it here, above the journal entries so everyone has a chance to read about it.

Now, I know I may be taking advantage of your kindness by looking for more pledges but this is something new. I feel like there are some amazing organizations that are trying to help us survive and understand the world of cancer. The Terry Fox Foundation is incredible and I know that Caedan would have been so pleased by the tremendous response I received.

But, it's a new year and a new challenge. This year I am supporting the Canadian Cancer Society and their Relay for Life. (bottom line is, they help our kids and adults with cancer and that's what I believe in!) My great friend from high school, Lori has picked up this project and is running with it (so to speak). Personally, I was really gung-ho about the whole thing until I realized it was an overnight thing. I hesitated, for only a minute, and then remembered that these people have seen me through the worst part of my life and still love me. The least I can do is come out and spend a night walking and talking and laughing and eating (there will be food involved, right? And not just Trail Mix, right?) Especially since they are naming the team after my dear Caedan. And so, the hesitation changed to motivation and here I am, searching for support and pledges.

I think next year it will be Save The Whales. But we'll see.

M.

Thursday, February 26, 2004 7:33 PM CST

Just Checking... Are you taking lots of pictures of your family?

M.

Thursday, February 26, 2004 7:33 PM CST

Just Checking... Are you taking lots of pictures of your family?

M.

Monday, February 23, 2004 7:54 PM CST

I am long overdue for an update but keep waiting for a creative moment. There have been none of these for awhile so I'd best just let my fingers start tapping.

I must start by thanking everyone who listened to the Radiothon in support of Children's Hospital. Thank you also to everyone who gave me such encouragement and praise. As I mentioned before, taping the recorded segments of the journal entries was much more difficult than I imagined. But listening to my voice reading them was even harder. To be honest, I only heard half of one entry (the one where Caedan had just had his BMT and we left him alone in the hospital overnight for the first time) and the entire entry about Cali and I at Caedan's Park and what a surprise ending we had to such a tough day. That's all I could bear. From so many of you, I heard that it was difficult to listen to. Jenn said that she knows those entries almost by heart, but to hear me read them was so much more difficult than she imagined. It really was very close to reliving parts of that time.

And yet, I am so glad I did it. There must be a way to keep Caedan's death from being senseless. I'll never understand why he got sick and why he had to die so young, but I have to believe that something good has come from it. Since he died, I continue to get emails from some people I don't even know telling me how much they appreciate us sharing our story. I know I am a better person for having Caedan in my life for 9-1/2 yrs. I feel like I need to pass that "betterness" to as many people as possible. And if that means they look at life a little differently, or donate to a cause that helps people stricken by cancer, then I think Caedan and I can be pleased. Besides, if you met the people at Children's Health Foundation, you'd want to do something to help, too! What a fantastic, fun-loving group they are! Now that would be a fun place to work... if you can call that work??? (Just kidding... in case anyone from CHF reads this!)

The Radiothon raised over $410,000.00! The Change Bandits Brigade brought in a whopping $70,388.00! Isn't that amazing?


There are other things I could chat about in this entry, but I'm afraid I'm a bit drained. My friend Mike Lightfoot died on Friday night. He had battled his leukemia through one protocol of treatment, a relapse course of treatment and then a bone marrow transplant. As anyone who has been following his webpage knows, he continued to find strength to fight even after the chemo, meds and infections took their tole. I find it hard to even write about this. It's just too sad for words.

Tonight, we should hug our spouses and remember how lucky our children are to have two parents that love them. And remember how lucky we are to have someone to care for and love, and help us raise our children.

That's all for tonight.
With love,
M.

Thursday, February 12, 2004 8:30 AM CST

Let's step up those prayers for Mike Lightfoot and his family.

They've reached a bit of a rocky course and could use our powerful positive thinking.

Cancer has no preferences. It will choose adults, children, fathers, mothers, grandmothers, cousins, neighbours. We need to be there for each other. But I don't need to tell you that. You define support and love.

M.

Wednesday, February 4, 2004 8:24 PM CST

This weekend is the Radiothon for the Children's Miracle Network. I'll be saying a few words on air on Sunday sometime between 4:15 and 6:00pm. They are broadcasting on 97.5 FM, BX93, and 1290 AM CJBK. You know me, I'll take every chance I get to talk about the wonderful care Caedan got at Children's Hospital. I could go on and on about the staff and care (and probably will) that we received for so many years. It's nice to have the chance to give something back. Now that sounds like a commercial, but it's true!

Another thing that's happening with this radiothon is that they are going to be playing entries from the journal here on the Webpage. Bruce Wray (the producer of this whole hoopla) and I went through the last four years of entries and after a lot of tears and difficulty, narrowed it down to about 15 entries. Then I sat in a sound booth and read each of those entries in chronological order. From there, Bruce had it edited and produced with sound and music and I guess it's all finished. The final product will be played throughout the Radiothon. Pretty amazing. I'm curious to know how it sounds but I'm not so sure I'll be able to listen to it. It was 100 times harder to read it for recording than I thought it would be. I never felt pressured, but I really got caught up in the energy and enthusiasm that Bruce has for the incredible fundraiser and really didn't want to back out. Now that it is all done, I'm so glad I went through with it. I probably shouldn't say that until I've heard it.

And one other thing for the Radiothon/Children's Hospital:
On Friday I am joining a friend from work and we are going to transform into Change Bandits. This means we ride into offices throughout the hospital, through the halls and to the cafeteria and take the loose change from anyone who's willing.. and some who are not. But it isn't just restricted to the hospital. If you work in London, don't be surprised if I show up at your office wearing a cowboy hat and bandana. Get out your change!

http://www.childhealth.ca/
The Children's Health Foundation Website!

Tuesday, January 27, 2004 8:49 PM CST

I know we're all bugging you to give blood, but if you could just consider it a bit more right now. Or Platelets or Plasma...

Our little friend Hannah is just at about Day +5 of Post Bone Marrow Transplant. Like all the Post BMT kids, she's going to need a lot of blood and platelet transfusions. If needed, donations made in Windsor or London can go to Toronto. And if they are not needed there, I know of two very special men in London who could use some. One has just had his BMT and another is gearing up for his.

I promise to go in the next week to give Plasma. Can you? And if you can't donate blood, can you convince someone else to?

Thank you my friends. It is appreciated.

Check in on Hannah and her parents. They are entering the roughest part yet.

www.caringbridge.org/canada/hannah

Friday, January 9, 2004 11:16 PM CST

I've put some new photos on.

I used to hesitate when I saw the photos of monument stones on other people's webpages. Now, I think I understand. First of all, it is a VERY important memorial to the survivors. Secondly, anyone living far away may never get to see it. And finally, because it is a part of our life now. An important part. Caedan's Park is a beautiful and comforting place to be. Why not let you see where I go for peace and meditation. Where I go to watch Cali run about looking at the flowers and playing hide and seek in the warm seasons and sledding or making snow angels in the winter. It is a place we like to go now. I've included these pictures because I want you to see this angelic spot. Caedan's Park.

M.

Angel Brennan was laid to rest to the left of this picture less than a week after I took this picture. She is now right beside Caedan.

Tuesday, December 30, 2003 2:02 PM CST

The Holidays? We've survived. Well, so far. Still have to get past New Year's Eve. Caedan's last three New Year's Eves were memorable. When he was six he tried so hard to stay awake until midnight with his cousin Paige... Alas, he was out cold on the couch by 11:40pm.

The next year when he was 7 years old we went downtown to Victoria Park with Paige and Cody and Kyle for a bit of snow-pile climbing and people-watching. The fresh air was supposed to help them stay awake til midnight. It worked but I think the whole "Ball Dropping in NYC" was a bit of a letdown. I'm not sure what he was expecting, but at least he was up long enough to see it!

The following year, 2001. We had just found out he had relapsed again. I remember him being really sick that night and I think he was admitted New Years Day with dehydration. Man, they slammed him hard with chemo. I don't know how he kept going.

And that was to be our last New Years Eve together. You know, nine years old really is very young. Maybe because he was so bright and seemed older than his age, I don't always concentrate on the actual number of years of his life. So, so few. And so fast. It all went by so fast. Isn't that what we say at this time every year? Where did the year go? Didn't it just fly by?

A new year dawns in just less than 33 hours. I wonder what 2004 will bring. I wonder how I'll make it through.

M.

Tuesday, December 23, 2003 9:51 PM CST

Only two more sleeps. Hardly seems possible. I think I have all my shopping done. I don't think Scott does, though. Poor dear, worked today until after 7:30, ate supper and then went out to the mall anticipating some "midnight shopping". Well, contrary to our dinner guest Julia's promise... the malls were not open late. JULIA! At least Westmount and Masonville weren't. He came home a bit stressed and I thought it best to keep my lips buttoned and not remind him that he did wait until the last moment... No real need to state the obvious, I guess. He plans to work in the morning but I've told him that I have been inviting people to come and drop in tomorrow afternoon so he'd better come home!

By the way, that invitation is invited to ANYONE! I really mean it. I feel the need to surround myself and my home with friends and love... and chocolate.

We'll be looking for you.

M.

Tuesday, December 16, 2003 10:52 AM CST

What wonderful messages. Thank you all so much for your words. It really does help.

Now, mixed in with all my anxiety of the impending holiday is my lack of time and organization. ACK! I haven't got my shopping done. Really, I've barely begun. While I had my head in the sand trying to hide from Christmas, it has snuck up on me. And it's not like I want an extra week in here between now and Christmas. That would just prolong the painful part. What is it I do want? A personal shopper? More hours in the day? A paid stay-at-home-mother job? Not bloody likely!

Sounds like I'd best get out there tonight and shop, shop, shop.

M.

Wednesday, December 10, 2003 8:36 PM CST

There's no denying it. The holiday season is here. I guess I really believed it a couple of weeks ago when I came out of my office on the Baseline Road side and the big spruce tree had Christmas lights all the way up to the top. It looked beautiful. The hospital doesn't decorate outside for Christmas anymore but someone in the Engineering Dept. or somewhere thought it was worth the money and trouble. I'm glad. I just wish the kids on 7 West could see it from their wing. Although, I suppose they can see the crane decorated with lights where we're building the new part of the hospital.

On December 1st we turned on our tree. Many of you know how big our spruce tree is in the front yard. Many of you have heard the close-to-divorce stories of Scott up on the extension ladder putting up the red lights and me giving constructive criticism from the bottom. And some of you marveled at our neighbour's "connections" to get the Cherry Picker truck two years ago to put the lights up there "for good". It really does look nice although I wish we could have more on there.

Last year we just couldn't bring ourselves to turn them on. For awhile, I thought I wouldn't want to this year, but Cali kept asking when we were putting up our lights, and I just couldn't find the right excuse.

We're not escaping this year for Christmas. We just can't afford to. Up until this week I was trying to convince myself it was actually because I was ready to face it all. I was lying to myself. I’m not ready. No where close. And for so many different reasons. I can’t believe how much I’m missing Caedan. I even went so far as to watch a 15sec. tape of him on video. I just needed to hear his voice. It was the one he did for the Children’s Hospital Telethon a year and a half ago. He was just 10 wks post transplant and fighting his CMV lung infection. It was taped right from his hospital bed and he was so pleased to be doing it for the telethon.

I have not watched any videotapes of Caedan since he died. I just can’t imagine doing so, but I had been reminded of the clip yesterday and that twigged me just a little too much. It was wonderful to hear his voice. So beautiful. So perfect. But it has set off so much pain and heartache that I feel like I’m plummeting backwards.

Signing our Christmas cards isn’t much easier either. I find it a struggle to write anything with any Christmas spirit and cheer. I’m not even sure why I’m putting myself through it except that I want so badly to be normal. And as so many of you know, normal for me is sending about 65-70 Christmas Cards. Even with this webpage, my list has not grown any smaller!

I’m so tired lately I could put my head down on my desk and sleep at any time during the day. Since Sunday night at about 3am, I’ve had this migraine following me. Sometimes, just a dull ache, but mostly a throbbing pain. I stopped trying to take pills for it because they aren’t doing a thing, anyway. I know it’s just stress. And I know the migraines are going to continue, as long as the stress does.

I wish I could just sleep through Christmas this year. A good three weeks. That should do it.

And then I think of all the families I know who are celebrating the first Christmas without their child. Or the second or the third. My stomach gets tight and I wonder if I can stand the pain that we’re all feeling. Where’s the Christmas magic? How can it take away all this incredible pain?

Cali is counting down the days. She opens the Advent Calendar every day that Caedan once opened. She’s thrilled to have the “kids” tree up downstairs and debates between cookies & milk and carrot sticks & apple juice for Santa. I’m trying to see Christmas the best way possible, through a child’s eyes but I just can’t do it. I wonder if I ever will again.

That’s all I can write for now.
Please try to get into the Blood Donor Clinic in the next 2 weeks. I personally know some people who are relying on donated blood and platelets. The holidays always bring a bigger need for donations. Bring a friend and go donate, okay?! Caedan would like that! That would please him to think we were doing that because of him or this webpage. He’d like that.

M.

Wednesday, November 26, 2003 8:19 PM CST

Okay, that's better.

And now, to reward you all for the friendly messages...

New Photos!

M.

Tuesday, November 25, 2003 1:02 PM CST

HELLLLLLLLLOOOOOOOOOOOOO

Anyone out there????

Tuesday, November 11, 2003 3:36 PM CST

Friends of Caedan Baseball Caps are BACK!

The hats were so popular that everyone's asking for more!

If you're interested in ordering some for Christmas or just for fun, let me know and I'll email you an order form.

They are still the same low, low price of just $10.00 each and those of you who already have one know what a deal that is!

Okay, enough of the bad commercial advertising. Yes, I am taking more orders and yes they are still only $10 bucks!

I still have some here that were ordered in September that I still haven't delivered. That is my goal for this week. I promise!

I won't send out the orders until the end of November so you have lots of time!

It's a grey, rainy November day outside. Caedan's park is getting quite muddy. I lit a candle this morning and admired Brennan's beautiful pink flowers and pink birthday balloons.

I hope all is drier and brighter in your world today.

M.

p.s. new photos!

Wednesday, November 5, 2003 10:05 PM CST

Brennan was laid to rest on Tuesday, November 4, 2003 right alongside our angel Caedan.

Caedan's Park is now Caedan and Brennan's Park. And many other angels who have died with cancer including Sarah Burrows and Danielle Grimes. Our bald little angels are together watching over us .

M.

Sunday, November 2, 2003 6:11 PM CST

Brennan was an angel on earth and now she's an angel in heaven. Dear, sweet Dolly died late Friday night (Nov. 1st) at home with her family... where she belonged.

It's all much worse than I ever could have imagined. Watching someone so close to me go through this. Well, it's almost too much. Caedan would be so upset and angry that Brennan died after all her fighting. Instead, I guess he has greeted her with open arms in heaven. And, as I told Cali tonight when she was so upset about Brennan, I'm sure Caedan is sitting down with her, reading her a Princess story and making her feel safe.

********************************************
Visitation is at Westview Funeral Home in London.

Monday 2-4, 7-9pm
Funeral is on Tuesday at 1pm at Westview.
Flowers are from Daisy Flowers (519) 438-1222
Donations can be made to ChildCan or Camp Trillium.

M.
Call or email me if you need any more information

Wednesday, October 29, 2003 10:54 AM CST

Work is keeping me busy. It's big adjustment to make. For all of us!

Our friend Brennan is having a horrible time and we are so worried about her and her parents and her brothers. Brennan has fighting cancer for over four years. How exhausted she must be.

I hope to sit down and give a proper update soon. It just seems that things are very busy.

Happy Halloween,
Maryla

Sunday, October 5, 2003 3:36 PM CDT

It's interesting.
Sundays are definitely my worst day. Sunday is so much a family day. Even though Scott has always worked on Sundays, it has always been more laid back and we could usually fit in something family-related. Going to friend's for dinner, or Janet's. Scott and Caedan walking to the ski hill or all of us just working around the house, but in tandem, not exactly separately.

Scott and I still strive to do something family-like on Sundays but we both feel like we have the steam knocked out of us, and it's easier not to bother. Scott seems to work more consistently and longer on Sundays. I usually have very little creativity or ambition to do "fun" things with Cali. Like last night, I thought that today I'd take Cali swimming. We haven't gone to the indoor pool since the Spring and it would let out some of her energy and get us out of the house. Well, the day has practically come and gone and no swimming. In fact, I just worked around the house with her helping me tidy up a bit and we made some ch. chip cookies (which barely made a crack in the day). Right now she's out walking with Scott. I think he sensed that I was desperate for a little space from her. So instead of going along, I stayed here, made supper and am writing this update. So much for a fun afternoon of swimming. Thank goodness I never mentioned it to her.

I think there is just too much time for thinking on Sunday. Not that I want more things to do. I just find that door in my mind opening a lot wider than I want it to. I'm much quicker to tears and find myself standing in the middle of his room constantly throughout the day, for no reason. I feel more loss.

Maybe this is better. Maybe one incredibly bad day a week is better than every day. No. There is no better. Just different. The shock may have worn off, but the bitter, sharpness of pain is just as strong.

I had so much to do in caring for Caedan for 2 years that now, I find myself with more time. More time to think, maybe? I'd give anything to be shut up in the hospital room on this Sunday if only I could be sitting beside him working on a puzzle or playing our favourite board game. Or better yet, running around town driving him to friends' birthday parties or shopping for new jeans, or taking him to swimming lessons. Oh, to be busy with that.

Soon enough this day will be over and a new week will begin. I work tomorrow through Thurs. 8:30-12:30 so I'll have some change of scene and less time to think.

Thanks for checking in. The number of hits to this page is astounding. Feel free to sign the guestbook any time.

M.

Friday, September 19, 2003 11:57 AM CDT

Four years ago today our baby girl was born. A more loved baby there never was! Here is the announcement we put in the London Free Press.

Gallagher (Bowers)
I’m standing here live on September 19th, outside St. Joseph’s Health Centre to bring you the latest news-breaking story. At 11:07am, with the compassionate assistance of Womancare Midwives, Beth and Crystal, Cali Beth was welcomed into the arms of her delighted Mom, Maryla and enamored Dad, Scott. Cali shocked the crowd with a speedy delivery, despite her 9lb, 5oz weight. Cali is sure to be adorned with endless pink “girl” clothes from her grandmother Janet Gallagher who is probably out shopping as I speak. Uncles John and Marty will be beating a path to her door for spoiling privileges. Glory and fanfare must also go to Elana and Jane at Womancare as well as great thanks to the 3rd Flr Nursing Staff. This is the proud and excited New Big Brother, Caedan Gallagher, reporting live on the scene.

Tuesday, September 16, 2003 9:15 PM CDT

Stop worrying! I survived the WALK. In fact, my back really wasn't any worse than after a day of gardening. There was a great turnout for the Terry Fox Run with lots of kids on bikes, babies in strollers and dogs on leashes. Of course, Rusty (Our Street Mascot, the Rhodesian Ridgeback)was a hit with his friendly greeting to every dog that passed by.

The best part by far was seeing other walkers/runners with Friends Of Caedan hats on! The bold red stood out among the crowd and made me proud. We cheered Marilyn and Kelly as they passed us (TWICE) and completed their run. Way to go, my friends. You should be so proud!

Cali rode in the wagon most of the time except when she ran to the playground with Tina and then played with Josh at the playground (good thing no one was timing us!) That's where we met up with the LaRivieres with their brilliant red caps. (Pat was there in a virtual reality kinda way!)

Cali even managed to convince Dina and Dahlia to give her piggyback rides during the first half. My kind of gals. Strong Like Bulls!

Of course, I don't think I would have even made it to the Run if it hadn't been for Susan. She came up with the idea originally and used some other ways to get me "fitness oriented" and ready to WALK. We all talked and laughed and joked and made the time just fly by. It was a complete success. I'm still catching a few stragglers with pledges so I'll have to tell you the grand total of pledges next week.

Tomorrow is my second day of work. I think this is going to work out just fine. Now that the first day is over and done with, the butterflies have shifted from my stomach and I think I can relax a bit. I'll fill you in more on this soon.

Lastly, I wanted to let you know that I finally added the link to the Toronto Star article written September 6th. Some of you got the actual paper and saw the picture of Caedan's room and some found the article on-line and saw the picture of Caedan. I have the link below and when you get there, just type in the word "caedan" in the 14-day search. You should find it there.

There is also a really sweet story about the Bench Dedication at Caedan's school. This was written by Ian Gillespie at the London Free Press. I will add that link later in the week.

Only three more sleeps until Cali's 4th birthday. Very hard to believe. She can't wait!!!! I remember in the Spring when she went to a friend's birthday party. She couldn't wait for "after the summer" to be here so that she could have her birthday. And now it is almost here!

M.

Wednesday, September 10, 2003 12:39 AM CDT

We made it to $1,000.00 in pledges for the Terry Fox Run/Walk. I am so pleased to be a channel for donations to this perfect cause. The hard part is Sunday, though. Ten kilometres is a bit far for my old back, but I'll load up on Ibuprophen first and treat myself to a good long bath that night.

The Toronto Star article was such a treat. I had no idea it would be that big or that there would be so much of the journal entries in it. The picture... well, I would have preferred a little air-brush work on me, but the essence of Caedan's room was a wonderful idea by the photographer, Jim Ross.

Things here are busy. Mostly a good busy but I did feel a bit run down yesterday. I think I'll try to take it easy starting tomorrow. Well, at least for tomorrow!

Caedan's monument stone is almost finished. The wonderful people at Dancy's Memorials are racing to finish it by Friday. I hope they can.

The "Friends of Caedan" hat orders took right off. We sent in a final order of 170 caps and unfortunately, I've since had requests for more. Sorry about the short deadline but we really wanted these in time for Byron Southwood Public School's Terry Fox Run.

The students of Caedan's school have been collecting pledges and will run the school field on Friday afternoon. Some of them plan to also come out to the Citywide run on Sunday. I'm sure there will be a sea of red hats!

The bench in Caedan's memory has been placed in the playground. Friday morning the school and any parents and siblings who can attend will participate in a dedication ceremony. I think it's going to be best for me to be around so many people who remember and love Caedan. Especially on a day that will be difficult, at best.

Many of you have been asking about my return to work. I am going back. As a matter of fact, I'm returning on Tuesday September 16th. I will be working part time initially, then gradually building up to full time in about 3 mts. I'm worried about all the usual things you would worry about going back to work after 3 yrs, but there's so much more, too. My biggest concern will be for Cali and how she responds to the change and to us being apart more. She has come so far in one year that I would hate for that to slip backwards.

Of course, another huge concern: What will I wear??? For two years I spent much of my time in the hospital in comfortable clothes and slippers. This last year has seen me out more but the wardrobe hasn't spiffed up much and the footware is Birkenstocks on a dressy day! I definitely need to spend some time shopping!

That's it for now. Will update after the coming events.
M.

Thursday, September 4, 2003 10:13 PM CDT

It's Thursday already. I'm writing this from Scott's office. Our server is down and I have not been able to access anything from out computer for 3 days!!! Not impressed.

I have read all my emails up until now and I was able to add over 20 more hats to our orders. So, I'm glad I came.

The deadline for hat orders is tomorrow. I'm hoping we can extend it a day or two, but I don't think so. I'll let you know how many hats were ordered next week so we can all be impressed.

I wanted to make a quick mention that you should pick up a copy of the Toronto Star on Saturday. Leslie Scrivener is writing an article about Caedan in connection to inspirational stories surrounding the Terry Fox Run. We have had some wonderful chats these last few days, and I'm really looking forward to reading her story.

It's late, and I still have to drive home and wash the bathroom floor. The bucket and mop are just sitting there waiting... Then it's off to bed. Late again.

Also, check my email address below on Tuesday night as I hope to be all hooked up to Sympatico by then and have NO MORE SERVER problems!!!

Good night my friends,
Maryla
p.s. I took 3 yellow and 3 purple helium balloons to Caedan's park on Tuesday. I didn't feel much like celebrating, but I knew that if he were here, he would have been 10 feet off the floor with excitement over the first day back. I figured he deserved some mention of celebration and the balloons just fit.
M.

Monday, September 1, 2003 9:26 PM CDT

I'm not sure how I'm going to handle tomorrow.

I'm not handling tonight very well. I should be so busy right now. I should be all stressed about having a pair of clean shoes for Caedan to wear on his first day back to school. I should be worrying about his backpack contents and packing his lunch. I should be upstairs sitting quietly with him because he's too anxious about school to settle down to sleep. I should be so happy because the summer break is over and I don't have to listen to "I'm bored" anymore. But I'm not happy. I'm devastated and lost. I'm broken-hearted. My empty arms are aching to hold my son and hug him tight and then watch him run off through the school yard to laugh and play with all his fabulous classmates and friends. I truly ache from the core of my being. How do you go on, when a part of you has been stolen and will never be returned?

This was never supposed to happen.

M.

Wednesday, August 27, 2003 10:54 PM CDT

There's one more thing I haven't told you about September 12th.

Last winter, Caedan's Principal, Mrs. Moynihan told me that she and some parents from the school had discussed some sort of school memorial for Caedan. There were several ideas considered, but just before the end of the school year, we decided that a park bench placed right alongside the playground climber equipment would be just perfect.

So, on Friday September 12th, exactly one year after Caedan died, Byron Southwood P.S. will hold a dedication ceremony in Caedan's memory for this beautiful new bench. Mrs. Moynihan and some of the fabulous teachers at Caedan's school have planned this school-wide event on Friday morning so the students and any family members can take a few minutes to reflect on children, friendship and memories. I think it is a wonderful idea. What a touching way to spend such a difficult day. Surrounded by the life and laughter of children.

The school will be sending out information about this ceremony during the first week back at school, but I couldn't help telling you all here so you could share my excitement.

Also, I have loaded a picture of the Friends of Caedan baseball caps on the photo album. I think Caedan would be very proud of the caps!

I now have an order form available for anyone who would like to order a cap or two. We are asking for a minimum $10.00 donation for each cap. All proceeds go directly to the Terry Fox Foundation. Caedan's school will have these forms available the 2nd day of school, but I have had many requests from people outside the school who wish to order some.

Just email me (address below) directly and I will email you a copy of the form. You can just print it off and send me the completed form with your cheque. Any problems, just let me know. We'll need all the orders in by September 5th so I'm not giving you much notice.

It's 12:08am. Too late to go for a "training" walk, I guess. Uh oh, September 14th and the City-wide Run is coming up fast!!!

M.

Wednesday, August 20, 2003 10:24 PM CDT

Okay,
so about the Terry Fox Run.
I've started tracking down neighbours for pledges, already! Watch out, I may be seen walking up your driveway, soon!

If your driveway is too far away but you'd just love to make a pledge for me, I am making it that much easier. Or, I guess the Terry Fox Foundation is. You can go to the link below and it will take you directly to my on-line pledge sheet. Isn't that cool?

There are a lot of Walks/Runs for fundraising. A lot just for types of Cancer research and support. I've never participated in any of them. Mostly because by the time it really meant something to me, I didn't have the time to get involved. I have the time now and I really believe this is the one Caedan would have wanted to be a part of. He had just started asking questions about Terry Fox and I was more than thrilled to tell him all I knew. I think Terry's determination and drive can be found in all of the children that I have ever met with cancer. His physical and emotional strength can only be a symbol of inspiration to all of us. {I wrote that sentence referring to Terry, but now that I read it, it could very well be about Caedan}

I must tell you what sparked my interest in the Terry Fox Run. My friend Susan Robinson and her son Josh, Caedan's buddy from school have participated in this run before. Susan and Caedan's Principal, Mrs. Moynihan discussed joining in the Run with a school-wide participation. This has led to a School Run on September 12th. The second Friday after school starts, the school will host their own Terry Fox Run, collecting pledges for the Foundation. The same children who collect pledges and run on Friday, can then show up for the citywide Run on Sunday at Wonderland Gardens in London. (This is the one where Cali will be pulling me in the wagon).

A little spark that has been added to this Run is the idea to have baseball caps available to purchase for the Run. The school, and a few people including myself, will have order forms to purchase a baseball cap for $10.00 each.
I will have a picture for you to see soon, but in the meantime: They are really nice cotton quality. Red (for the school's colour) with yellow embroidery. And the embroidery will read: "Caedan's Friends" with the star logo used on his fundraiser, Caedan's Wish. The hat looks great. I'm just so thrilled. Can you imagine how excited Caedan would be to know about these hats? Especially when hats became such a symbol for him. Oh, and the proceeds for every hat sold is going to the Terry Fox Run! Isn't that awesome? I'm going to try to make the forms available online so anyone wishing to order some can access it themselves.

This is starting to sound a little commercial. I would never want that. I guess I'm just excited. I'm excited about the Run/Walk and about the school's continued support and involvment in Caedan's life and memory. Makes us feel very special.

So, that's it for now, I'll update again later this week or on the weekend if I have any more information.

M.

Tuesday, August 19, 2003 10:16 PM CDT

Hey Amy! (guestbook entry)
You're right, it is time to donate blood again. There was a blurb in today's paper reminding people to make time to give blood as it is always hard to get donors in during their busy vacation times and such. And of course, it's even better if you bring a friend. Someone to talk to and share coffee and cookies.

I'm going to the London clinic tomorrow (Wed.) at 2:15 to give Plasma. You can give plasma every 6 days (unlike whole blood) so I try to get there about every other week.

Also, stay tuned for more information: I'm going to walk/crawl/be-pulled-in-Cali's-wagon this year in the Terry Fox Run on Sunday, September 14th. I'll try to add another journal entry tomorrow about the Terry Fox Run as well as some interesting things happening at Caedan's school in September.

Stay tuned...
M.
Call 1 888 2 DONATE

Sunday, August 17, 2003 9:41 PM CDT

Now who would have thought this would be such a difficult time for me? This is not a good month for my grieving process. Everything started to end in this month. A beginning to the end, I guess. The first, of course, was realizing how sick a child could get so quickly when dear Dustin went from bad to worse so fast. The shock and disbelief that Dustin could die after all that he and Caedan had gone through with Leukemia and then Bone Marrow Transplant was incredible.

And now, I am thinking about all that we were doing "this time last year". It's all I can think about. I keep looking back in my Journal History to see what this day last year had given us. This time last year Caedan was doing well. But in a few days, it will be one year since he went into the hospital and never came out. One year since we was taken to the Paed. Critical Care Unit, intubated and sedated. In a few days, it will be one year since Caedan spoke to me. This is a very hard time.

I almost hate that a whole year has gone by. Almost 12 months since he died means I've had almost 12 months to grieve and go through the stages, and start to recover. Everyone kept saying that "as time passes, the pain will lessen and the memories will be happy ones". I would go through all the shock and pain again if I could hear him speak to me. Time doesn't heal all wounds. It just takes the voice further away.

In a few days it will be a year since he hugged me, or made me laugh, or called me Mom. In a few days it will be a year since he cuddled with Cali and joked with Scott.

Time does not heal. I don't want the memories. I just want Caedan.

M.

Saturday, July 26, 2003 2:36 PM CDT

I'm just stopping in to say hi and let you know that everything is fine.

The summer has been really nice so far with some good hot days and some cloudy rainy ones. A fair mixture.

Cali is having fun in splash pads and wading pools and at daycare 3 mornings a week.

I'm worrying a lot about some kids on treatment right now. More specifically, some kids who have relapsed. Such terrifying times for such innocent victims. I'll put Hannah's page on our link list so you can stop in and say hi!

This time last year we were quite hopeful that we were winning the battle. I'm not going to think about all that right now.

Hope you're all enjoying your summer and counting your blessings.

Love,
M.

Wednesday, July 16, 2003 3:54 PM CDT

Another year older, another year wiser. If only that were true!

It's everybody's favourite day of the year! My Birthday. And if you didn't already know that, you must be living under a stone. I try not to let anyone get past this day without some sort of acknowledgement! It pays to advertise.

I'm having a wonderful day but there just never seems to be enough chocolate. Pity that!

I have changed the photos again. The first one takes a bit of an explanation. Many of you may remember a few posts made (July26, 2002 if you want to check the journal history link) last year concerning Caedan's mysterious birthday gift for me. He was making it with the Childlife Specialists at the hospital over the course of a few weeks. He got this idea in his head and tried very hard to describe it to Lisa and Melissa so that they could provide the supplies and expertise to create it. I remember vividly being banished from the patient room in the Day Unit while they worked furiously to complete it in time for my birthday.

Melissa would roll a cart into the room secretly cloaked in bed linen, or Lisa would come out of the room periodically covered in what looked like flour and/or glue. Then there were the screeches of delight and hysterical laughter streaming down the hallway to greet me in the waiting room. The anticipation was killing me.

He proudly presented it to me almost exactly this day last year. If you can't tell, it's a fish aquarium frame with a purple fish "swimming" in the middle. I took pictures of it this past Fall with plans to post it here, but never got them scanned in time. I thought it was appropriate to do it today.

Thank you Caedan, my love.

M.

Wednesday, July 2, 2003 6:26 PM CDT

Sheesh, I go off-line for a week and everyone is stealing my thunder. *** And would you believe, my computer is still on the blink? I'm actually at the public library using their computer!!! ***

Tracy, you beat me in the guestbook entry / public service announcement about donating blood. I was thinking of posting a journal entry asking everyone to think about giving blood this week. Last week was a year since Caedan's Blood Drive. Some, like Tracy M. and Nancy C. gave blood for the first time are still going strong. Many others got back on the band wagon and are keeping up the momentum.

I go for my bi-monthy plasma donation tomorrow. It only takes about an hour (including the screening) and they have some REALLY good cookies at the Commissioners Road centre. Whenever I go, I sit and study the fellow donors (secretly over the top of my book) and wonder who the heck they are! I mean, what's their story? Are they like me who has been so personally and closely affected by blood donations? Is the young man beside me the brother or friend or student of someone who has needed transfusions? Or the lady who sits across from me. The one who talks non-stop to whoever is sitting next to her? Why is she here? She looks to be about 60. She MUST have something better to do. Or is she here for the cookies, too? It's so hard to figure out. Maybe we should all wear tags explaining our story... maybe I should mind my own business! Whatever! It's kind of fun to make up stories about strangers.

Canadian Blood Services is trying to promote a "buddy-type" program. You know, bring a friend, give blood. Who wants to come with me next time? I usually go on a Thursday morning. If you can't come with me, find another friend and make a date. Great way to spend an hour chatting with someone with a cup or two of coffee at the end... and cookies!

It's not such a crazy idea. About a month ago I had to wash Cali's Princess Comforter and my washing machine is too small. So I planned to take it to the local Laundry Cafe. I called Karen B.Sanderson to see if she had any comforters in need of a wash. She did, so we sat and drank our coffee, had a great visit, and got our laundry done, all at the same time. Oh, and Karen S. dropped in, too even though she didn't have any wash to do.

Maybe this takes multi-tasking a bit too far, but I'm nothing if not practical.

Anyway, think about the blood donation thing. And let me know what you decide.

********
Now Annie! About the birthday announcement. I am so impressed that you thought to remind everyone through the the webpage... I wish I had thought of that! HA!

Yes, it's only 2 weeks away. That means if you go to the card shop tomorrow and get the card into the mail immediately, it should make it here in time. Even Jacqui overseas!

I don't have plans yet but will let you know as soon as I do. Oh, and in case you're keeping track, Scott's birthday is the 19th.

love to all,
M.

Tuesday, June 24, 2003 10:19 PM CDT

Tomorrow is the last day of school. To a child, almost as exciting as Christmas Eve. What a celebration. There's such a charged atmosphere; almost a tingling sensation. Do you remember that feeling? Think back. It was always a hot day. (If you went to Colonel Bishop P.S. then you remember there was no air conditioning and the classes upstairs were unbearable.) Your book bags are bulging with paperwork. Try as they may, the teachers didn't completely succeed in getting you to start emptying lockers and desks earlier in the week, so there are still armfuls to lug home.

Everyone talking about their summer plans. Here in Byron, the kids don't really say good-bye because they'll see each other later in the week at the soccer pitch.

There are always gifts for the teachers and snacks for kids. Someone's mom seems to always come through with popsicles or cookies or tray of Rice Krispie Squares. It's never a real school day. It's the Last Day of School.

Caedan really liked school. He loved his friends, he appreciated his teachers and he loved to learn. But, like all kids, he lived for the Last Day of School. How could I not get caught up in the excitement? It was contagious.

Tomorrow is the Last Day of School. My heart is breaking. I want so much to be a part of his excitement again. I can't believe I'm not. I can't believe the Last Day of School is coming even though Caedan isn't here. I seems like it's a celebration that shouldn't happen. It seems all so unfair. It seems as though the world should stop and see what's missing. See who is missing. Should see that we can't have the Last Day of School without Caedan.

I'm sure that's not what Caedan would want. He'd want his friends and all kids to enjoy the day as much as kids have for years past and years to come. I wish I was as strong as Caedan.

Tomorrow I'm going to buy 2 dozen yellow roses. One dozen for me and one dozen for Caedan's Park. The foundation for the Monument Stone was laid today. Tomorrow I'll finally get to make a little flower bed there with some annuals.

Then, after lunch, before any school bells ring, Cali and I are going to drive to Port Stanley (about 35 min.). We'll go to the beach and forget about the rest of the world for awhile. I figure we'll head back around supper time. After the neighbourhood kids have dumped their backpacks on the foyer floor for the last time this school year. After the cosmic energy up and down the streets has dissipated a bit. Then, I'll get on with the day, the week, my life. One day at a time.

M.

Tuesday, June 10, 2003 8:22 AM CDT

Time seems to be spinning past. Spinning in that it's not making a lot of sense and I lose track of days and dates and appointments. I need a Palm Pilot. But not a typical one because I'd lose that. I mean literally. A calendar and day planner embedded right into my palm!!! Surely even I couldn't lose my hand!

Cali and I continue to work on the yard and garden. For years I've wanted the time to do this. I just wish Caedan was here helping or I was interrupted every day at 12:00 to go and pick him up for lunch.

We've planted a few more perennials and lots of sunflower seeds but the squirrels are finding them before they ever make it through the surface.

I get tired easily and still have little motivation, but once I get going I can usually accomplish something little. Maybe just a few weeds or the kitchen floor.

Little by little.

I miss Caedan so much.

M.

Monday, June 2, 2003 9:45 PM CDT

Our little friend, Cody Simpson died on May 24th. He was only 9 yrs. old. He and Caedan played N64 together in the hospital and had some wonderful giggles. While Caedan was at Sick Kids Hosp. in Toronto, Cody had some out-patient treatments there. I got to see him and his mom, Sharon a few of those times. It was so good to see someone from "home" even though it was because of chemo!

Cody fought his little heart out. He bravely watched his friends at the hospital fighting cancer and must have worried so much about them and himself.

They all fight so hard. They fight and they fight and some of them still die. How can that be? Caedan was so distraught last year when Keely died. I know I've told you this before, but I'm continually reminded of it each time another child dies.

"Mom, it's not fair. We go through all of this and then that happens. That's not supposed to be what happens."

They are supposed to fight through this to come out conquerors. And that's not happening enough. I know. I've been to the funerals. (the visitations)

This world of Kids with Cancer is such a dark place sometimes. Most times. And I'm not even the child going through it all.

It can all be so absolutely sad.

M.

Saturday, May 24, 2003 6:53 PM CDT

Hello,
I was given a gentle reminder that I hadn't updated in awhile and to be honest, I needed it. I check the guestbook several times a day, but sort of forgot to make my own update.

Things are moving slowly and somewhat smoothly. No major disruptions but no flashes of excitment to report on either. Since her part time babysitters have gone home for the summer, Cali and I have been spending more time together. She goes to daycare an average of 3 mornings a week. Some afternoons she goes to Janet's and once in awhile to Karen Sanderson's. Now that we're able to go outside, keeping busy isn't quite as difficult as during the cold, winter days but she still has a lot more energy than I ever will.

We have done a bit of gardening together and plant-shopping. She helped me clean the winter guck from the inside of the van and we bake every now and again. She doesn't really care what we do, as long as we do it together.

We've finally ordered Caedan's Stone Monument. Of course, we wanted something a bit out of the ordinary. You know, something that stood out among all the others. First off is the colour. It's called a Laurentian Green. A very dark green that could be mistaken for black from a distance. We've decided on a verse at the bottom. A quote, really. Once we narrow it down from about four, I'll let you know. I think you'll be pleased.

My employer has been making some noise about me returning to work. This scares the stuffing out of me, but it may be time. I'll let you know how that comes along.

Cali and I are heading to Windsor tomorrow. Time to go spend some time with my Dad and get his house in order. It's something I've wanted to do for a few years now but obviously haven't had the time.

That's it for now,

M.

Sunday, May 11, 2003 9:13 AM CDT

Happy Mother's Day!

Our children are such a blessing. I never imagined how much bliss motherhood could bring.

M.

Sunday, April 27, 2003 9:13 PM CDT

Your guestbook entries left me speechless. Caedan's birthday celebration was more than I could ever have imagined. Thank you all so much.

Tuesday was a difficult day to get through. Cali spent most of it with Janet and I moved along on auto-pilot. After grocery shopping I went to pick up our balloons. That was much more painful than I thought and I ended up crying right there in the party shop. Well, the women kept asking me questions, like what kind of weight do you want to hold them down? and how long do you want the ribbons and, I just couldn't think of an answer. I was dumbfounded by what I was doing and finally just told them, "it's for my son's gravesite" and then started crying. I think they were pretty shocked. Up until then, I'm sure they were thinking, "hello- these aren't hard questions." After that bit, I spent some time at Caedan's Park in the blowing light snow and rain. The rest of the day was quiet and peaceful. When Cali came home we decorated the birthday cake and had some nice time together.

At 7:00 the three of us headed over to Boler Mountain to the hill that Caedan and Scott used to walk up. This is not yet used for skiing. Just a HUGE pile of dirt. About 300 ft. Up we went. Stopping for breathers every now and then. Scott carried Cali up parts and I fought with the 11 helium balloons which were thankfully still in their two big plastic bags. When we reached the top it was only 7:10. Good God, we had 10 minutes to wait. Oh, did I not mention how windy and cold it was that high up? Poor little Cali all bundled up, me with my one glove (the other lost some time last month), Scott with a fleece vest and light windbreaker. Yikes. What were we thinking? We could see the whole city from up there so we searched for flying balloons but couldn't see any. The wind was so strong that when one did go up, it probably went up VERY fast. I took the plastic bags off and the ribbons wrapped up around each other immediately.

Finally,it was 7:20 and we snipped off one balloon and gave it to Cali. She let it go and whoosh, it was gone. Straight up to heaven. We did the same with a second one and whoosh, off it went. We watched them for a minute but they were out of sight so quickly. Then we held onto the remaining bunch and when Cali counted to three we released the bundle. This bunch seemed to sail a little more freely. Like it had a bit of control. Because it was so big, it was so much easier to see. We said a few words and then poor Cali had red cheeks, a runny nose and her eyes were watering from the wind. She'd had enough. Scott headed down with Cali and I stayed until Caedan's balloons had safely reached him in heaven. It was beautiful. For the longest time, it looked like they were travelling straight away. South, as far away as Lake Erie. And then when they reached a darker cloud, they just lifted right up. They appeared to continue straight up until the bunch became just a tiny, little speck that I had to blink to focus on.

There were a lot of balloons sailing up with the winds of London that day, but all we saw were our's. Caedan's 10th birthday celebration was so heavenly that I don't think the angels could have done a better job. Thank you all who celebrated the day of Caedan's birth.

M.

Tuesday, April 22, 2003 7:57 AM CDT

Happy Birthday, my love.

It was ten years ago today that my life as a mom began. What an amazing life that has been so far. More laughter than I ever could have dreamed of. Wonderment and delight filled my days from that moment on and continue to now.

There are memories of Caedan growing through his 9-1/2 years that surround me right now but are so thick with emotion that I cannot put them down as words. Not right now, but one day.

For now, let's each just picture our favourite moment or thought of Caedan and smile. He'd like that.

Cali can't wait to send her balloons up to heaven tonight. Neither can I. Thanks for sharing all your birthday plans. They make this day so much brighter.

Happy Earth Day / Birthday, Caedan

M.

Tuesday, April 15, 2003 1:14 PM CDT

The balloon lift off is really in my mind this last week. I even had a dream about it last night. Scott, Cali and I were in a parking lot near Caedan's Park and all of a sudden it was 7:20pm and we looked up and there were dozens maybe hundreds of balloons floating up to the sky. It was beautiful. At first we were upset because we weren't at our arranged lift off site but then I realized I wouldn't have seen all of these balloons if we had been upwind. Weird, but you know how dreams are.

We've decided the most appropriate spot would be close to heaven and somewhere that would mean much to Caedan so we're going to his ski hill, Boler Mountain. When we moved here 6 years ago we started our walks through the hills and trees. Caedan had a ski membership with his dad whenever he could. Now Cali loves to walk there with us. It's the perfect spot.

I hope it's a day just like today. Sunny, warm and VERY windy. We'll see.

M.
Happy 10th Birthday Luke S!

Tuesday, April 8, 2003 8:53 PM CDT

Today's an important day. It is exactly two weeks until Caedan's birthday!

Anyone who knows us knows that birthdays are extremely important. No matter what. April 22nd is the day Caedan was born. That will never change. (and as some of you know, it is also the day my mother was born, her brother and their mother -my grandmother-) A very special day. Oh, and Caedan would NEVER let me forget that it's also Earth Day. A fact he was quite proud of.

We have 2 weeks to left for planning how we're going to celebrate this special day. I've got some things I'm working on right now. I'm anxious to hear what you're doing on April 22nd.

It doesn't have to be big. But, you should probably do something, don't you think? :-)

One particular thought that keeps returning is a balloon lift-off of some kind. The colour yellow always reminds me of Caedan but green or blue would be good in conjunction with Earth Day. And for those who are wondering, he was born at 7:20pm.

Alright, I'll just leave that little bug in your ear for now.

Keep me posted!
M.

Tuesday, April 1, 2003 10:19 PM CST

Some days, when I can allow myself to accept that Caedan is gone, I wonder where "gone" is exactly. Cali and I talk about it being in heaven. This is where my heart believes he is. I only wish that heaven had some kind of MSN capability. An email address perhaps. Video phone. Something. Anything to help assure me he is in that perfect place and is happy and healthy.

I read this story in my Chicken Soup for the Grieving Soul that came delivered to my door unsigned last week. I think I know who sent it, but I'm not 100% sure. It's a story within a story so I think it's okay to copy.

This story helps me to understand in a small way.

*** A group of water bugs was talking one day about how they saw other water bugs climb up a lily pad and disappear from sight. They wondered where the other bugs could have gone. They promised one another that if one of them ever went up the lily pad and disappeared, it would come back and tell the others where it had gone.

About a week later one of the water bugs climbed up the lily pad and emerged on the other side. As it sat there, it transformed into a dragonfly. Its body took on an iridescent sheen, and four beautiful wings sprouted from its back. The dragonfly flapped its wings and took off in flight, doing loops and spins through the sunlit sky. In the midst of its joyful flight, it remembered the promise it had made to return and tell the other bugs where it had gone. So the dragonfly swooped down to the surface of the water and tried to reenter the water, but try as it would, it could not return.

The dragonfly said to itself, Well, I tried to keep my promise, but even if I did return, the others wouldn't recognize me in my new glorious body. I guess they will just have to wait until they climb the lily pad to find out where I have gone and what I have become. ***

Sunday, March 23, 2003 3:16 PM CST

Take lots of pictures.
You can NEVER have enough photos of your kids. NEVER.

Take pictures all the time. NOT just at special occasions or when someone is visiting. You don't always have to have them pose. Take lots of pictures.

I keep the camera right on the wall unit in the livingroom. Always easily accessible. If your camera is too complicated to use often, get a new one. Get disposable ones at Costco. Just take lots of pictures.

And make sure you're in them, too. No one dislikes pictures of themselves more than me, except maybe my mother. I have very few pictures of my mother. That's a shame. I'll make sure Cali has some of me. She doesn't care whether I have make up on in them, or my hair is right or how much I weigh. She'll appreciate them one day.

Take lots of pictures. You'll be glad you did. I promise you!

By the way, I changed the photos on the photo album page.

Wednesday, March 19, 2003 11:38 AM CST

Krispy Kreme Doughnuts!

Now there's a nice sound. To those of you who don't live in Southwestern Ontario, Krispy Kreme's are a faraway treat.
We don't have a store here in London yet, but a lot of groups are selling them for fundraisers. That's our easiest access to them. But easy only for those of us who can pre-order them or get to the selling location as soon as it opens and before it sells out!

Cali's daycare is taking orders now for a March 31st delivery. So, of course we had to order some.

Now, I find out ChildCan is selling them this Saturday. It's Feast or Famine!

If you'd like to get your mitts on a dozen or three, ChildCan has six locations in London. I'll list them below in case you're out and about on Saturday morning! Sales start at 9:30am.

Scott and I will be selling at:
Channer's Mens & Ladies Apparel - 581 Wonderland Rd @ Commissioners.

You can also get them at:

Memorial Arena - Wilson Ave., St.Thomas

South London Nissan- Wharncliffe Rd.

Sears - Masonville Mall, (front doors)

Chalky's Pool & Tournament Room - 390 Springbank Drive.

Soccer World - 6 Cuddy Boulevard London

If you have any questions you can call Lois at ChildCan... 685-3500.

As you know, ChildCan was a huge support for us during treatment and now, so of course we want to take every opportunity to help whenever we can. ChildCan's link is on this webpage below if you want to take a look.

Spring is almost here. Is the snow melted where you are?

M.

Tuesday, March 11, 2003 3:52 PM CST

Hi There,
I went for the bloodwork today. The requisition arrived in the mail yesterday so I called to see if I could go early. No problem. Now I have to wait and see.

For those of you not in Southwestern Ontario, it's still very snowy here. A ton still on the ground and ice all over the sidewalks. Very Wintery.

Caedan's best friend celebrated his 10th birthday on the weekend. I think this is the first birthday that Caedan didn't celebrate with him. Another First. I don't like these firsts. They are difficult. Not that I want to rush time past either. That's certainly not the solution. I remember when my Mom died, everyone told me it would get less painful in time, so I started to pray that time would fly past. Suddenly (it seemed), it was 2 years since I had spoken to my mother. Then it was 10 years. Now it's almost 15. How can that be?

This will be a year of firsts. Fast, slow, it doesn't matter, it's going to be a very hard year.

M.

Wednesday, March 5, 2003 3:22 PM CST

Fate. Coincidence. Fluke. I don't know, what do you think?

Tomorrow, March 6th will be exactly one year from when Caedan started his devastating pre-BMT chemo. Remember it was 4 days of chemo followed by 3 days of radiation? Then on March 13th he had his Bone Marrow Transplant.

Yesterday I was thinking a lot about these up-coming dates. (Ironically, I returned to Sick Kids Hospital in Toronto just a week ago to accompany a very good friend whose son needed some testing done and a Bone Marrow Aspiration. It was an excruciating trip for me with all the smells and sounds and places bringing back vivid details of Caedan’s time spent there.) So, of course I’ve been thinking about the whole Transplant experience. In the late morning, I picked up a message from the Canadian Blood Services, Bone Marrow Transplant Division. It must have been some follow-up call regarding Caedan’s transplant by some dork who hadn’t read his chart and didn’t know he had died. I returned the call and was asked if I was still interested in being a Bone Marrow Donor. I said yes, I was still on the registry. She told me I am a potential match and if I am still interested, can go for an initial blood test. Can you believe this??? Now, the chances at this point of me being the ultimate donor is only about 1%. Not great. But, just that they would call... this week... is incredible. I have been registered for at least 7 years. I actually think it’s longer, but for argument’s sake, let’s say seven. I have NEVER been called. Most people never are. Let alone someone who has actually been associated with the Bone Marrow Program is some way. What are the odds? I was so surprised by all of this that a few hours later when I returned from grocery shopping, I checked the Call Display on the phone. I wanted to see that they had actually called me and that whole conversation wasn’t a dream. They did and it wasn’t!

The blood test isn’t until March 24th. That’s the soonest! I don’t want to get my hopes up. I’m trying very hard. Still, I feel strangely content knowing that this much has happened.

I don't know how this could happen without a guiding hand, but it's not something that a person could just make happen, either. This is a real program with an international registry. If it wouldn’t be so cruel, I’d almost think it was a hoax!


Other than that, things are quiet. I’m keeping this week pretty slow. I found things speeding up a bit too much and thought I’d just take a bit of control back. It’s been good for me. Might even bring myself to bundle up Cali and go out on the sled for awhile.

M.

Sunday, March 2, 2003 8:36 PM CST

I just read Syd Birrell’s update from Feb 17th (the link is below). It is very powerful. I’m always surprised to hear things said among “sick families” or “bereaved parents” that are so dead-on to my feelings. Having said that, I would never presume to compare myself with a single, solitary other parent going through this. Never. Everything is so different even if it is the same. Syd talks about his relationship with James and the time he now has to dedicate to his other 2 children. Time he/I never had while caring for his/my sick son.

So, I started this update as an email to Syd and instead, it became a journal entry for myself. My thoughts of Caedan have been all-consuming these last few days. I went to the mall to “escape” this afternoon and spent most of the time with my head down so no one could see my tear-filled eyes. I saw a couple of different young boys with slightly dyed hair. Bleached I guess for fashion. A little over a year ago, Caedan asked if he could get his hair dyed when it grew back. I said sure. (Don’t sweat the small stuff). Scott, Cali and I made an igloo in the backyard yesterday and all I could think about was that Caedan wasn’t there. Wasn’t even sitting in the dining room watching out the window, too weak to join in. He wasn’t there. Dinner tonight reminded me of something that happened a while ago in a restaurant that struck Caedan, Scott and I as SO funny. We would laugh every time we remembered it. Tonight I started to cry. Everything Cali does to make us laugh makes me want to cry because Caedan isn’t here to laugh with us. See what I mean? All-consuming.

Now, this is the part I was starting to write to Syd and just kept going:

I am in awe of the relationship I had with Caedan. I cannot begin to understand how I could be so close to someone else (that in itself is a 4 page entry, I'm sure). I worry that I'm not as close to Cali. But I cut myself some slack knowing that she is only 3-1/2 and I've only just got the chance to get to know her. Most of all though, I look at her as a savior. If it wasn't for her...if it wasn't for her, I don't know how I could continue to take breath into my lungs and keep my heart beating. From the day she was born, Caedan placed that girl on a pedestal. He always thought of her as an indescribable force within our family. She kept us all laughing. He would ask for stories about her as distraction when he had his LPs without sedation. He never let us forget how special she was, even during her "terrible twos". I wonder what he would think if he knew how important she is now to keeping us going without him. I guess he does know. I guess he knew all along.

M.

Wednesday, February 26, 2003 9:14 AM CST

I went to Caedan's park today and for the first time I really didn't like it there. The snow was way too deep. Some of the flowers on his wreath are falling away and I don't like the having just a temporary marker instead of a stone monument, yet. But really what I hate is that I'm there at all. That my son has a spot in a cemetary and he's only nine years old. That there are other children and young people buried there. That there is so much sadness surrounding those places.

As I sit here and type this I realize, I'm not any better. I'm just getting better at hiding it. It's been over 6 months since Caedan spoke to me. Six months. Imagine.

M.

Thursday, February 13, 2003 8:40 AM CST

Things are about the same. Which is better than if things were worse.

The snow here is fresh and beautiful.

Cali and I are off to Dina's in Michigan for several days. I need the time away and Chez Kenkel is a home away from home. Four kids six and under should be interesting, though!

Happy Valentines Day !

Friday, January 31, 2003 at 02:47 PM (CST)

Today started out kind of rocky but has ended up much better.

I was feeling very unenergetic and knew I had Cali all day on my own. It's a day off for the school kids so I didn't want to battle the crowds at the pool or McDonalds Playland so I figured we were in for a long day. Cali was just refusing to go outside and play in the sled when Dahlia called. We decided to take the kids to Tim Hortons for donuts and BIG coffees for us. Unfortunately, Cali acted up almost the whole time demanding my attention and to be carried as we walked to and from Dahlia's and Tim's. Although we were invited in to play, I just didn't want to bother with her in her unsociable mood (really she just didn't want to share me today, I know, but it's still hard). So we headed home.

I decided to stop at Caedan's Park to brush off the snow from his decorations. I piqued Cali's interest when I suggested I pull her in the sled from the van to Caedan's spot. Well, we ended up staying for 45 minutes!!! What a great time. Sledding, making paths in the snow in the clear untouched parts and pushing her down the little "hill" by Caedan's spot. Up down, up down. Lots of spills and laughs. Before we left, Cali made a Snow Angel right on top of Caedan's spot. How fitting.

Now we're back home, enjoying a snack and about to sit on the couch for a snuggle and a video. What a wonderful day.

You just never know, eh?

M.

Monday, January 27, 2003 at 10:29 PM (CST)

To the living I am gone,
To the sorrowful, I will never return,
To the angry, I was cheated.
But to the happy, I am at peace.
And to the faithful, I have never left.
I cannot speak, but I can listen.
I cannot be seen, but I can be heard.
So as you stand upon a shore,
gazing at the beautiful sea,
Remember Me...
Remember Me in Your heart, in your thoughts,
and the memories of the times we loved,
the memories of the time we shared.
For if you always think of Me,
I will have never gone.

~author unknown


I read this on the webpage of a young woman named Kristy Evans. She died in 1997; only nineteen years old. I put the link to her webpage below.

Tuesday, January 21, 2003 at 09:26 PM (CST)

Cold here. Way too cold. Definitely ready for Spring.

The snow is pretty. Too bad it's too cold to go out and play in.

I went looking in Caedan's room today for a pair of swim goggles for Cali. Should have just gone out and bought a pair. I searched through his bedside table. Don't we all keep some pretty personal, close-to-our-heart things in our bedside table. I know I certainly did as a kid... Still do. Never should have started in there. I spend a lot of time in Caedan's room. I sit on his bed and read a lot. I think I'll leave the drawers alone for awhile.

Kind of like when I tried putting pictures into the photo albums last week. What possessed me to do that??? I got about three into the album and that was it for me. I'll worry about that another time, too.

I'll just read on the bed tomorrow and buy new goggles. That would be better.

M.

Monday, January 13, 2003 at 10:28 PM (CST)

I’m going through a bit of a rough patch right now. I don’t know if it’s Post Holiday Season or another of those “stages of grief” which I have yet to read up on. I just know I feel like it’s all happening all over again, emotion-wise and frankly, I’m getting a bit drained.

I honestly cannot see this ever getting easier. And ever is a long, long time. I remember times in Caedan’s long journey through treatment searching for a light at the end of the tunnel. Anxiously waiting for the end of the in-patient treatment period to be over. Then when he relapsed, waiting for the Bone Marrow Transplant to be past us, and then waiting for the critical 6 months post-transplant to be behind us. But each stage had an ending. Most of the time we were terrified of getting there, but we knew there was an end. I just don’t see an end to this grief. Never has life seemed so bleak and unbearable.

I know it’s “only” been four months, but to see some change, some improvement. I would feel like I could get through the next four months. If I could see Scott getting better or if I could face so many things that right now, I can’t even put to words without becoming over-wrought then maybe the future wouldn’t seem so incredibly forbidding.

You know, I’ve been working on this update since January 2nd. Each time I begin writing, the tears start and I have to stop. Some updates never get to the webpage. I save everything I write, but only enter some of them. I’ll post this one because, honestly, I don’t think I’ll have anything better for awhile.

As many of you know by now, Scott, Cali and I went to Cuba for the week of Christmas. We left Christmas Eve out of London and flew directly to Veradero, Cuba. It was the perfect way for us to spend the holidays. I’ve known since September that there was no way I could get through the holidays in the traditional manner. And so, for many reasons, Cuba was our choice. It was a fabulous trip.

We stayed at the Sol Club Sirenas/Coral Resort. It was all-inclusive and very family-oriented. We made sand castles every day and spent lots of time in the beautiful pools. Cali stayed busy from 7:00am until 9:00pm when she passed out from pure exhaustion. She especially liked the pre-Mini Disco where she could dance on the stage under the lights to nice, loud music and be applauded by her parents and any early-comers to the nightly show. But once the Entertainers came out and called for all the kids to join in the mini-disco with songs and games, she raced off the stage in shyness. One night when they started playing the Hokey Pokey she was longing to join in but way too shy to go on her own. There were about a dozen other kids, all a bit older and the fun-loving directors, but she would not budge. So, up I went, onto that stage, in front of what felt like the entire resort, and did the Hokey Pokey with my little darling. I even stayed for a couple more songs with Scott laughing and shrugging from the front row. A mother’s love has no boundaries.
We had been there 5 nights when, would you believe, we ran into friends from London? A wonderful classmate of Caedan’s and her family were spending their first Cuban vacation at the same resort. We had a blast with the TWELVE members of the extended family and Cali chased after Alyssa and her cousins endlessly. Scott had some basketball teammates with Mark and his brother-in-law and more than a little competition with Trevor and his cousins when it was the Dad’s against the Kids!
We returned from our trip on New Year’s Eve and so even that holiday seemed completely different from our those of our past. Santa filled Cali’s stocking on Christmas Eve in Cuba and when we returned, Santa had paid a visit here and left a load of presents for her under the tree.

It was a very nice week and a good break in the middle of this dreary winter.

Christmas Day didn’t seem like Christmas day. It was strange but at different times during that day I would remember, “hey, it’s Christmas Day... okay, this is okay”. But the day that hit us hardest was December 27th. Harder than any “anniversary” date has yet. It was the day we found out Caedan had relapsed a second time. What a horrible, horrible day that was. And then I started thinking about everything that has happened in those short 12 months. From December 27, 2001 to December 27, 2002. It was and is enough to make me curl up and cry and cry and cry.
{I just read my journal entry from that day and then the one following it; incredible.} So much to try to understand.

And so the vacation was marvelous and it was ideal for us to get away, but we can never really get away. And we can’t go back in time. And we can’t change the past. And that truth is enough to break the strongest of hearts.

M.

Friday, January 03, 2003 at 09:28 PM (CST)

Happy New Year!

Sunday, December 22, 2002 at 08:59 PM (CST)

I must be one of the few people who is actually glad that time is flying and Christmas is almost here. For me, it means that Christmas is almost over. Don't get me wrong. I still appreciate the love and spirit that comes with Christmas. The stories of generosity and selflessness are inspiring. There's no denying that this is a very special time when people aren't afraid to show their love and kinship to those around them. That's the part of Christmas I can't help enjoying. But the traditions. All the memories of past holidays are just excruciating to think about without Caedan. If it weren't for Cali, I don't think I would even acknowledge Christmas this year. I wonder how many parents without other children will skip the holidays completely after their child dies. And if they don't, I applaud them. It ain’t easy.

We’re having a non-traditional season, actually. Cali (well, all of us really) has been opening gifts as she receives them instead of waiting until Christmas day. We’ve done only one “Christmas baking” effort and that was because Brenda K. brought us some and we wanted more. Pecan Fruitcake Cookies (email me if you want the recipe!). Aside from the little tree downstairs and a Caroling Scene candle holder (Mary R.) We don’t have any decorations up. I didn’t send cards this year because I haven’t even written the thank you cards from Caedan’s funeral yet. So, it’s all very simplistic. No shopping in crowded malls. Minimal gift-wrapping and a little time off from work for Scott.

We plan to lay low the next week or so but I’ll be back on-line and looking for chats again soon.

God bless your precious family and thank you for all your love and friendship. We wouldn’t be this far without you.

With love,
Maryla and Scott and Cali Beth

Wednesday, December 11, 2002 at 08:40 PM (CST)

Attention Windsor and Area Friends: (Oh, heck, Londoners, too!)

One of ChildCan's biggest fundraisers is happening right in your neighbourhood. {As you know, ChildCan is our local childhood cancer support group that provides assistance to all oncology patients receiving care at Children's Hospital. Families from Windsor to Owen Sound are given financial and emotional support during and after their child's treatment.}

On January 31st in cooperation with the Kingsville Youth Association, the 3rd Annual Polar Bear Dip is being held at Lakeside Park, 315 Queen Street, Kingsville. Each year this event has grown larger and has proven to not only raise substantial funds for ChildCan but also provide enjoyment and more than a little fun competition to the community at large.

A very popular approach to this fundraising has been the Corporate and Personal Challenges. With the corporate challenge you can challenge a co-worker and let your customers decide who takes the plunge by the number of pledges collected. OR, even more fun is having your entire office competing against an affiliate office. Who goes for a refreshing dip? You or the competition? Dentist offices? Autoworkers? Shoppers Drug Marts??? The sky's the limit. Or the lake's the limit!

You can also make a personal challenge with a neighbour, a classmate (over 13yrs. of age, please), co-worker, or perhaps that competitive brother-in-law of your's. You can set your own goals If you win, your challenger dips; if you lose, get ready to get wet! The Polar Bear Dip Committee will even contact the individual for you and get the ball rolling. All you have to do is ask and have fun!

All Challenge Participants receive a bath towel and a certificate of Appreciation and Participation AND a free hot lunch.

Minimum of $100 raised and you get a "I Survived the 3rd Annual Polar Bear Dip" T-Shirt

A Deluxe Entertainment Package goes to the TOP three Pledge Earners.

School Challenge - Participation Plate added to school trophies

Personal & Corporate Challenge Winners - Medal to wear and gloat (display)

And yes, I plan to be there. Can't guarantee I'll dip, but I wonder if anyone will challenge Scott!

For more information including pledge sheets, you can email me directly:
msgallagher@uniserve.com
or call Liz Stone at the Kingsville Youth Association at: 519-733-8983, ext. #27

We anticipate over 1000 people attending and I think it will be a lot of laughs.

M.

Tuesday, December 03, 2002 at 02:49 PM (CST)

No surprises here. This Christmas season is upon us and it's hitting me just as hard as I thought. What's worse, it's 150 below something outside and way too cold to go out for a walk and clear my head. Maybe not if I dressed in 6 layers, but at that point, where's the fun?

I put up a little Christmas tree downstairs today. When Pruitt and I were kids, we had a little artificial tree downstairs in the familyroom. We put the multi-coloured lights on it, the strings of popcorn and all the homemade ornaments. Everything that didn't go on the "good" tree upstairs. The one with the beautiful clear glass bulbs and the gold lights. The gold icicles and pink dew drop bulbs. The round decorated bulbs with "Mother" or "Daughter" and the year. (Before they became smaller and REALLY expensive novelty decorations.) Since Scott and I have started a traditional Christmas tree, I have always had gold lights and used some of my Mom's beautiful decorations. Last year I thought that this would be the year to start the "kids" tree downstairs. So, I guess it is.

I can't possibly bring myself to open our bins and boxes of Christmas decorations this year. I just can't imagine doing it. But since putting up the "kids" tree downstairs is not a tradition yet, I thought I could handle that. I also knew that it would be extremely unfair to Cali not to have any tree at all. So, now that the tree's up, I have to go get some lights and decorations for it. If you see some adorable decorations that would be perfect for a child's tree, let me know.

I should warn our Byron neighbours not to look for the gigantic spruce tree out front to be lit this year. Although the lights stay up all year now, neither Scott nor I can imagine lighting it up without Caedan. Now that most of the folks here on the court have their's up, Cali keeps asking when we'll put up our's. Such a big question for me right now. But not as tough as when she asked me in bed last night why Caedan had to die. But I can't get into that right now.

Thanks for all the guestbook entries. We check every day.

M.

Tuesday, November 26, 2002 at 10:40 AM (CST)

Is it me or are the Christmas decorations / lights going up way too early this year? If you have your outside lights up and going already, and you're reading this, go home and unplug them. Right now!!!! Because as soon as you turn your's on, your next door neighbour will feel obliged to turn his on, and so on and so. Besides, you had the air conditioner on way too much this past summer and you don't need to add to your hydro bill in November as well.

Oh, okay, do what you want. It was just an observation...

Christmas. Ya, this is going to be hard. I wish we could just fast forward to January 15 or so. But we can't so we'll just keep going. "Through the storm" has never meant so much.

I put some old photos on the webpage. Just for a change.

I'm tired all the time. Can't seem to pull the energy to do anything much. I can clean up the kitchen in the morning but then I'm spent for two hours. I think some of it is motivation. Speaking of tired. I am. So I'm going to go sit with a coffee.

Love to all,
M.

Wednesday, November 20, 2002 at 07:34 PM (CST)

Hello my friends,

I just thought I would say hi.

Things are about the same.

I did get away for some shopping and girl-therapy with the 'inas last weekend. Dina and Tina. Very good for the soul. I honestly can't remember the last time I went away overnight without children or hubby or both. Unless you count hospital stays, which I don't.

My sister Anne was here for a very brief visit from Victoria, BC. That just tipped the scales for soul-enrichment.

I hope all is well in your part of the world,
M.

Tuesday, November 12, 2002 at 07:32 PM (CST)

Cali has a flu of some kind today. Spent most of last night and today either throwing up or on the toilet. Poor thing. I don't think she has ever been so quiet. It's so, so unlike Cali. Here's the proof that she's sick. She ASKED to go to bed tonight at 8:00. As most of you know, Cali never goes to sleep before 9:30 and that's with an hour and a half of effort on our part! Hopefully she'll be better tomorrow but I suppose we'll have to miss swimming. She is NOT going to be happy about that.

The rain storm on Sunday night hit "Caedan's Park" pretty bad. His plot has sunk down a few inches. A bit disconcerting to say the least. His wasn't the only one, but it's not nice to see. I'm sure it'll be fixed up soon.

I miss Caedan so much. I was picturing him so clearly today. Sitting on the couch. Sitting at his place at the table. Lying in my arms in bed. Even brushing his teeth. I truly can't believe he's really gone. It seems so utterly impossible. And it hurts so much.

M.

Tuesday, November 05, 2002 at 08:19 PM (CST)

Our friend Joshua Weber died in hospital today.

Josh was another little boy (just one week younger than Caedan) who had a Bone Marrow Transplant for Leukemia.(you know leukemia, the "good" cancer to get. The one with the high survival rate...) His BMT was about 3 mts after Caedan's. His recovery was different than Dustin's and Caedan's. He had much less time in-patient and was feeling very strong. Then he got a lung infection. Just like our other dear angels. He was put on a ventilator in the Critical Care Unit but the damage from the disease was obviously too devastating to his lungs.

I have come to know so many people in our hospital experience. I wish everything was so different for all of us.

My heart goes out to Lucille and Leonard, Josh's parents. And to dear Jacob and all of Josh's other brothers and sisters.

I'm also thinking of all the people at the hospital who are mourning Josh's death today. The Childlife and Art Therapists, nurses and doctors and P.S.A.s. The Respiratory Therapists, the social workers and psychologists and the parents of other patients. How devastating this must be for them to lose another of their beautiful warriors. So much pain.

M.

Wednesday, October 30, 2002 at 08:37 PM (CST)

Cali and I had a good day together.

She started preschool swimming lessons this morning. The kind where the parent comes in, too. Oh joy! She loved it though. Did everything but blowing bubbles. I could tell she was wondering "what's the point to this exercise?". After that it was off to McDonalds for two Happy Meals (The Happy Meal featured toys are from Hello Kitty -- big hit with the 3yr. old girls!!!). Then we headed over to the newly built Westmount Library where we got three videos, and a bunch of books. (how long before I lose 1/2 of them?) Next, the video store for me to pick up a movie and drop some off, a quick stop at Caedan's Park to check on the flowers, the Nursery to return the Fertilizer Spreader I used on Monday and then grocery shopping.

By the time we got home, all I wanted to do was have a nap. But nooooo, we had to watch the Barney Adventure Movie and she refused to let me close my eyes for a second!!!

It was a lot of fun with her. She kept my mind off most things and I was able to do the things and go to the places that usually make me sad. Not that I can bring her along all the time. My gosh, she just goes like the Energizer Bunny. I can't keep up. She didn't fall asleep tonight until 9:20pm and that was w/o a nap.


Have I mentioned to you about the room in my mind?

Janet made this comparison and it is exactly how I feel.

I find it so incredibly painful to think about Caedan right now that it's like I have a little room in my mind and I keep the door tightly shut. But, sometimes, and quite often when I least expect it, the door gently blows open. Suddenly, there they are. Memories, plans that had been made and will never be fulfilled, laughter, thoughts, all of it. All around me with nothing I can do about them. The door can open when I sit in his room. It can open when I get a bank statement in his name. It can peek open a crack when I look at his Legos figures or it can swing madly open when I drop one of them and know that he won't ever be here to fix it.

As I move my way through this grief I know that I will be able to endure the openings more and more. I know that some day I will be able to willingly open the door. But for now, I get through the day with my sanity intact by consciously keeping the door closed.

Tomorrow is going to be a very hard day. I plan to give out the treats because I always enjoy that so much. I prefer to see the kids all dressed up over going door to door and only catching glimpses. I have no idea how I'm going to handle it. Obviously, the room's door is going to be opened up wide. If I can't do it, I'll trade places with Scott and take Cali out. Or Tracy from next door has offered to come over and hand out candy. I could even turn out the lights. Whatever. I'll just play it by ear and do what I can do. I think Caedan would expect that.

M.

Thursday, October 24, 2002 at 08:34 PM (CDT)

I had a rough day today. I think I may have over-done it this week.

Monday I felt okay so I did some grocery shopping. I think because I survived that, I got to feeling a bit too confident. On Tues. I was asked a question that I've been dreading so much. "How many kids do you have?" She didn't get the simple answer she was expecting, that's for sure! Anyway, I got through that but ended up doing and seeing too much in total through the week. I think my emotions are so high that I really need to treat them with kid gloves. A visit to the video store and speaking to the clerk is more than enough right now.

I've been getting out for walks often. By myself, with the Discman on high enough that I can't hear the kids playing. Actually, I usually only go when they're in school. I keep my head down, sunglasses on and don't make eye contact. It's almost like being invisible, but still getting exercise.

Scott and I aren't getting much sleep. At least not good sleep. As Stacey calls it, Grief Work takes a lot out of you. Amazing how tired you can be without doing anything.

We check the webpage everyday (just like you guys) to see any new guestbook entries. Some make me cry, but all of them make me smile :)

I had thoughts of writing quite a bit on this entry, but my mind has become quite fuzzy. Probably from this hard week.

Cali is doing fine. She and I talk about Caedan constantly and she loves going to "his park" (the cemetary) to look at all the flowers.

Love to you all,
M.

Saturday, October 12, 2002 at 08:18 PM (CDT)

One month ago today.

I can't believe it's been that long. And yet it feels like so much longer since I held my dear Caedan. He went on the ventilator on August 21st so it's been even longer since I heard his beautiful voice.

Some moments I really don't know how we'll go on without him.

M.

Tuesday, October 08, 2002 at 07:55 PM (CDT)

Today was another day. I got up this morning, even though I didn't want to. I tried to keep busy with small, mindless tasks. But everything here is Caedan. From the Lego creations I have to move to dust the table, to the M&M Spinach Quiche I found at the back of the freezer.

Scott and I have talked of wanting to move. Get away from all the pain. But, of course we can't. All of Caedan is here. We can't leave it. That's just one of the irrational thoughts that drop down onto the dinner table some nights.

I'm still content in my solitude. Scott and I went to see a matinee movie on Sunday. That part was okay. In and out. What was bad was venturing into the mall to exchange a jacket for him. A mall on a Sunday. Kids everywhere. Young boys all around. Very bad place for me. I couldn't get out of there fast enough. I almost felt like I couldn't breathe. No more of that.

I went to the camera shop to get my camera looked at. That was okay because it was the middle of the day and there were no kids downtown. If I do go out, I try hard not to do it around school lunch break or school dismissal. After the camera shop I went to the drug store. It was 2:10pm. A good safe time. But when I looked across the street, I saw that Springbank Park was filled with cars... and kids. It must have been the Cross Country Meet. You remember last year? When Caedan and Josh Robinson went into the first meet just because they could. They came in 42nd and 43rd respectively (or as Caedan said with a grin, "dead last")and they were delighted. I can't believe I drove by the park today at that time.

I guess you can understand why I want to stay home. For awhile longer, anyway.

Again, I'm tempted to just delete this post. It's more detailed than I planned, but I suppose it is another journal entry that may one day help me make sense of this pain so I'll keep it.

One good step I took today that I didn't think I could take: I brought a meal up to my friend Mary at the hospital. Her son is Post BMT and having a huge struggle. They've been in the hosp. now for months and I really felt the need to bring her something from home. It was just chicken and rice leftovers, but it beats the cafeteria! Obviously, I met her outside in the parking lot. I'm not sure I could do it again, but I never thought I could do it today, so there you go.

M.

Monday, September 30, 2002 at 12:15 PM (CDT)

There’s only one way to survive the last two years that we have had. Help.
Human beings are not made to be alone. Live alone, die alone or survive alone. It is not possible.

I have made it this far because I said yes to help. I said yes a lot. I continue to say yes. I will continue to say yes. Even 25 years from now when, perhaps, my life is a bit easier. If someone offers to shovel my driveway and my back is hurting, I will say yes. If someone says, can I help you with anything, I will say, yes, you can shovel my driveway.

And every single chance I get to help someone else, I will take it. If it is standing in one place and holding the door open for someone and then someone else and then someone else, I will. It’s only 90 seconds. If it’s driving someone across town to an appt or 3 cities away to her mother’s, I will. If it’s doing a load of laundry for a single mom stuck up in that horrid hospital with no family or support, I will jump on that chance.

Because, chances are, (God willing) Jay Cahill or Mary McIntyre or Tom Jory will never need the kind of help they have given me. If they do, I hope I can return it in spades, if not, I’ll just give it to someone else.

No one can do this alone. Even the good things aren’t nearly as good without someone with you to share it.

Having said all that, grieving seems to be the same, and yet different. I understand that I cannot grieve alone. I cannot stay shut in the house, alone and still come out okay on the other side. I know that. But without reading the “Grief and your survival” type books, I do know that there must be a stage of this that needs to be faced alone. I believe it is okay to do nothing... all day. But not forever. Someone asked me on Saturday about that “doing nothing” thing. He asked if I sat and stared at the wall, or just did nothing that produced any results. I said, "I’m not staring at the wall all day." I’m not there.

I can’t predict the next few months. God knows, I’ve learned that planning doesn’t work. I don’t think I’ll still be in this “stage” in November. But, I won’t guarantee it. I’m just go to wait and see.

I’m going to continue to wake up in the morning, brush my teeth, have a shower and take it moment by moment. Even if that means going back to bed. Moment by moment.

I’ll continue to accept all that help. Maybe not in the timeliness and order that you would expect. But I will.

I am blessed with all these friends. I can turn off the ringer on the phone, keep the curtains pulled and be by myself. But as soon as I need to, I can turn the ringer back on and someone will be there. And if they aren’t at that second, I can call them. Just like that. How lucky is that?

I got the following email from one of my friends who was a bit worried, I think about me understanding all the good intentions that are being offered. I think I understood the intentions, but it was really helpful to hear her twist on things. So helpful that I’m going to include it here for you all to read. I won’t put her name because she doesn’t know I’m doing it and like with most things she does, she doesn’t realize how incredible that diatribe was!

** Hi Mar
Just to add another dimension to what we were talking about on that MSN thing tonight, I thought I’d tell you a bit about how some of us are feeling.
For two years, friends, relatives and strangers were given a window into your lives via the website. What a perfect vehicle that website is. It kept us all up to date (sort of, I know you candy coated it much of the time) on how Caedan was progressing with his different stages, and also we (in the know) got into a rhythm of being able to read much about how YOU were doing by assessing what you did and didn’t write. Caedan became a family member to people all over the place (Noah’s Hairy Aunt comes to mind, bless her) and he and you gained a spot at an untold number of dinner tables as part of the normal flow of families's lives. We were able to find a very personal spot for Caedan and The Gallaghers, and that is very evident by how people responded in the Guestbook. However, once Caedan’s funeral was over, we were all left to grieve, each in our own way, at our own personal loss of the family member we had made Caedan into in each of our lives. We had two years of checking daily, or at least regularly, on how Caedan’s day was going, and what was new in his life. Many people are still checking the site because it seems familiar and they find comfort in reading the words others in Caedan’s Strangers Family wrote, because they were offered on behalf of all of us.

You are too good a writer, Kitten, and you became an intimate friend to all of us because that is the way you write. Now, both fortunately and unfortunately, you have LOADS of people who love you as fiercely as they love their own sisters, and all of them have to find the grace to pull back and let you continue on your own private path through this grief and allow you to evolve, as you must. It will take time for that to sink into some people’s brains –– that we don’t own you and that we can’t possibly think we know the dark path you are on right now.

Here’s what you have to do. Be civil to those who are sincere in their ignorance and be frank with those who still don’t get it. Maybe during a better moment you could figure out pat answers for both types of people and have those at the ready –– drill Scott on them too –– and then you won’t get caught with your pants down. So to speak.
You’d better get a pat answer ready for me too –– I do drone on and on and on…… **
**


Now, do me a favour, okay? Read this over twice.
a) because it took me a heck of a long time to write.
b) because I want to make sure you know how much I appreciate all of you and all you do.

M.

Tuesday, September 24, 2002 at 11:15 AM (CDT)

Hi guys,

I don't know if you're still looking for updates but there sure have been a lot of hits in the last 4 weeks. Over 20,000 actually.

As you can imagine, I don't have much to say right now. Things are quiet. That's good. I don't tend to answer the phone or door but if you call, I will check the message.

Scott is back at work but not long days yet. Cali is going to Growing Concern where she is moving back into a routine that she knows and is comfortable with.

I'm getting up in the morning and brushing my teeth. The minimum requirements. I have managed a shower every day, as well. That, to me, is gravy. A little more than is required, but a step in the right direction.

Thanks for all your love.
We feel it.

M.

Sunday, September 15, 2002 at 09:07 AM (CDT)

Gallagher (Bowers)

Caedan MacLachlan Gallagher, died in his parents' arms and in the company of his grandmother Janet Gallagher and his friend Mike Ginsburg at Children's Hospital (London, ON) on Thursday, September 12, 2002. Caedan was nine years old and waged a seven year fight against Leukemia. Beloved son of Maryla and Scott Gallagher. Adored big brother to Cali Beth. Survived by his grandfather Bob Bowers and many loving aunts, uncles, cousins and friends. Friends my call at the Logan Chapel of Furtney Funeral Homes, 371 Dundas Street, from 7-9pm Sunday and 2-4 and 7-9pm Monday. Anyone who has been touched by Caedan's light is invited to celebrate his life. Funeral service will be conducted at the Oakridge Presbyterian Church, 862 Freele St. (south off Oxford St. W.) on Tuesday September 17th, 2002, at 11am with Rev. Dr. Lonnie Adkinson oficiating. Interment in Woodland Cemetery. In lieu of flowers, dontions to ChildCan or Camp Trillium would be appreciated by the family. (Logan Chapel, 519-433-6181)

Friday, September 13, 2002 at 06:09 PM (CDT)

Yesterday (September 12th) at about 5pm, our dear warrior traded in his armour for angel's wings.

He died in our arms peacefully and with an end to all his fears and pain.

There are no words right now to explain or understand any of this.

The funeral is on Tuesday.
Details:

Logan Chapel
371 Dundas Street
London, Ontario N6B 1V5
ph. (519) 433-6181

Visitation:
Sunday, 7pm - 9pm
Monday, 2pm - 4pm
Monday, 7pm - 9pm

Funeral details will be confirmed tomorrow.

With love,
Maryla and Scott

Sunday, September 08, 2002 at 10:41 PM (CDT)

We keep using the analogy that this is like riding a roller coaster. Up and down. Up and down. There is actually, just a midline that we seem to come back up to and then go down again. To say we go "up" is a bit of an overstatement. So midline and down. Midline and down.

We are thankful, so thankful that we never stay down but we wish dear Caedan could come up and keep going up.

Caedan was positioned on his tummy for a couple of days and he responded well to that. We had thought of trying him on his back again but he deteriorated so fast the last time we tried it, we were both afraid to try again. What really pushed our decision was that from lying on his front for so long while on the oscillating ventilator, he has developed some nasty blisters. They are very big and full of fluid caused by the constant, be it tiny, rubbing while his body shakes from the oscillator. They have broken and we didn't want anything to get infected with no exposure to air and cleaning. After a big production and some really high emotions on my part, the "Dream Team" (as Scott calls the group of 6-9 staff that it takes to turn him over) managed to get him turned onto his back and comfortably settled.

I say comfortably, but sometimes we wonder. His paralyzing drug is very effective, but after a lot of disruption he sometime starts to come over his sedative and tries to breathe through the oscillator. Sometimes this is okay, but sometimes his breathing does not coincide with the ventilator and his SATs go down below 90. So, the nurse will top up the sedative and/or the paralytic drug and he relaxes again enough for the ventilator to do it's job.

We talk to Caedan constantly and include him in our conversations. I play music or t.v. shows or movies during the day so he has some familiarity to his days.

Every day Caedan's buddy Mike comes and talks to him and keeps him (and us company). Scott's mom Janet comes every day and right now we have Stacey, my best friend who lives in Portland Oregon staying here. We jokingly call her my Personal Assistant but it's really not a joke. She is doing all my thinking, talking, planning, packing, unpacking, everything. She's been talking foolishness about going back for work and stuff but I just smile sweetly at her and pretend I didn't hear her.

John and Christie are still here with baby Noah and are keeping Cali more entertained than she has ever been before. There have been grumblings from them about returning to Vancouver, but we ignore them, too. They are both fighting a cold so I think that travelling on a plane would be far too detrimental right now...

Scott and I remain standing. Barely. Sooner or later one of us is bound to stumble but for now we're managing. I'm sure its down to all your help and concern. Without that, I don't know where we'd be.

M.

Thursday, September 05, 2002 at 09:53 PM (CDT)

Patience. Waiting. Patience. Waiting.
You are all so patient, waiting for an update. We are waiting waiting for some kind of change or improvement to update you on.

One day... No, make that, one minute things are stable but critical. The next minute they are racing downward. Caedan's lungs just can't seem to get better. There is a lot of fluid in his lungs. A lot. Too much. We keep trying to change his venitlation amount or method. We try changing his position. We try different meds, less meds, more meds. Nothing is helping. At least not long term. He may appear stable and then within a few hours start to decline again.

Our doctors are not ready to stop trying but they have run out of options. His kidneys are still functioning but they need a lot of help.

There is so much more to say and nothing else to say.

I cannot form the words.

m.

Monday, September 02, 2002 at 10:43 AM (CDT)

Things are the same.

Long days. Long nights.

M.

Saturday, August 31, 2002 at 04:18 PM (CDT)

Things are stable.

Caedan's lungs are functioning a little better now that he's on his stomach.

We are just waiting.

I came home for a break this afternoon and Scott even came home for a nap.

Dahlia's guestbook entry on Wed. or Thurs. was great. We are getting well fed and drinking LOTS of water.

I'm going to have a quick shower and then head back up to the hosp.

We're hanging in there.

M.

Friday, August 30, 2002 at 11:32 PM (CDT)

I'm sorry but things have really taken a sprial downwards.

We are having a horrible, horrible day/night.

Caedan woke with a fever this morning. He was needing 100% oxygen from the ventilator and it wasn't enough. They have found a lot of blood in his lungs.

The fever could be another infection spiking so he's back on some of the d/c antibiotics. The regular ventilator just isn't enough so he is back on the oscillator. It wasn't enough. We added Nitric Oxide as a different way for the oxygen to work through the lungs. Didn't work. By late afternoon we could see that he was still in need of 100% oxygen and his SATs were still too low.

The blood in his lungs is bad. Pulmonary Hemorraging. Very sick lungs. At 6pm we only had one choice. To try rolling him onto his stomach. This was an attempt to give his lungs a different way to accept the oxygen.

We will wait tonight to see if this will work. The whole family was here as soon as we got the news and they've now gone home to get some sleep (they need to get to sleep so they can get up with the toddlers at the crack of dawn!).
I understand Dina and Tina are on the highway on their way here as I write. (12:40am) Karen has gone home as she'll want to be here for the 7am shift again, I'm sure.

Today was a very bad day. Despite that, I hear the delicious sound of laughter in the waiting room. Alex and Meg from Camp Trillium have come to hold Mike's and our hands. Lisa Howe is down from Brennan's room to give us strength. Mike and Scott are drinking their 12th cup (between them) of coffee of the day.

I'm going to sit with Caedan.

Goodnight my friends.
Pray for our warrior.
M.

Thursday, August 29, 2002 at 10:16 PM (CDT)

The oscillator is off!

They switched Caedan to the regular ventilator this afternoon and we are so relieved. Not just because it is now so much quieter in the whole unit, but because he is tolerating it so well. The oscillator was pushing the oxygen into his lungs so hard his whole body was pumping up and down. Now he just looks so much more comfortable.

The other fantastic news is that he has woken a little. The paralyzing drug was stopped on Sunday and it is taking a long time to work through his system and get flushed out but it seems to finally be happening. First thing this morning while I was still upstairs in our borrowed room, Karen Beck Sanderson (who had been sitting with him since 7:00am) came running up to tell me he was waking up! He had squeezed her hand and was clearly trying to breathe on his own. When I came back down, he responded to my voice and made everything seem okay again.

We really didn't see much more response for the rest of the day, but that's okay. We have had such a lift from these developments that we're satisfied for today.

He has had some of the antibiotics discontinued, changed or decreased in an attempt to keep his kidneys at their best. They have never found the source of infection but apparently, this is a common occurence and frustrating for everyone. But the chest X-ray today showed a slight improvement and that's the first time.

It is so encouraging to see some kind of improvement, even if it's a small one.

Keep those prayers and support coming!
M.
p.s. Lori, we have $30.00 collected so far for the new computer!

Monday, August 26, 2002 at 01:49 PM (CDT)

Today is a better day.

The amount of oxygen he is getting in order to keep his O2 SATS has gone down significantly. If he tolerates this well, we may take him off the oscillator soon and use the usual ventilator. Still Life Support, just in a different way.

We have to watch his kidneys and make sure they keep emptying all those toxins and fluid. They're behaving for now and hopefully at least one of the hard-on-the-kidneys antibiotics will be discontinued soon.

Moods are a bit lighter today but that's also because we're an up-beat group here with nothing but hope in Caedan's strength.

Keep those guestbook entries coming. They are a tonic for Scott and I.

M.
p.s. Lori Wightman: It's time to get a computer of your own!!! Loved you last message!

Saturday, August 24, 2002 at 11:30 PM (CDT)

Hi Guys,

It's late Saturday night and things have improved a little...

I didn't mean to scare you by not writing but I have been way too tired to even try to fomulate the words.

Caedan is still in dire straits. His lungs continue to need a LOT of oxygen and he is still on a lot of pain medication, antibiotics and a heavy-duty paralyzing drug.

We are still going hour by hour but will not give up hope on his strength and will.

I know this is much less than I normally would but it's the best I can do right now. No news means no changes, okay?

Thank you so much for your prayers and support that strengthen us daily.

M.

Thursday, August 22, 2002 at 10:44 PM (CDT)

Things aren't any better today.

Caedan is still on the ventilator only now it is an oscillating ventilator. This means that instead of the oxygen going into his lungs full pressure (like on your hose nozzle set at JET) it is going in swirling and easier (like when your hose nozzle is set on SHOWER or SPRAY). The jet was putting too much pressure on his lungs and they are stiffening up from the pressue and infection. They need to give his lungs a break without cutting back on the oxygen.

We still don't know what kind of infection it is so they are treating it with all kinds of antibiotics to cover all bases. The X-rays are not showing any decrease. The Paed. Critical Care Unit (PCCU) doctor calls it Pulmonary Disease. Sounds too awful to me. I like lung infection better.

We are going hour by hour right now. Hoping to see any tiny kind of improvement. Scott and I are staying here and Janet is taking over with Cali. Please call or email home and I'll pick up messages from here. It's too hard to answer phone calls here right now.

I'm very tired. Going back to the unit (i'm up on 7-In Patients -- our second home) now for awhile and then I'll wake up Scott to take a shift.

More tomorrow.

M.

Wednesday, August 21, 2002 at 07:09 PM (CDT)

Things have gotten much worse very quickly. Caedan's breathing became increasingly worse through the night. He was struggling to breathe with 100% oxygen going into his mouth. When the doctors came in the morning, they were quite concerned by his fast deterioration. The chest X-ray from late last night showed "infiltration" (their word, not mine) of some sort. It didn't look fungal and he's on preventative meds for certain types of pnemonia so we don't think it's that. The CMV levels (it was a CMV-virus in his lungs that had him so sick all of May and June)taken on Monday were at "0" so they don't think it's that.

But it was the breathing that troubled them most urgently so they decided they wanted him in the Paediatric Critical Care Unit (PCCU) to watch him much more carefully. Also, if he fell into serious trouble, they could have everything they needed right there.

He went down around 11:00am. This afternoon they did a Bronchial scope to scrape away some cells from his lungs and find out what kind of infection is there. In order to do that, they had to intubate him. This is a long, wide straw-like tube that starts in an oxygen-type machine and goes into his lungs. That way he's getting the oxygen he needs without working so hard. He is heavily sedated with it and will remain sedated for a day or two. Hopefully then they will reduce the intubation's work and see how his lungs function. Right now he is sedated, comatose so that he remains comfortable and not in distress. We can talk to him but he is too "relaxed" to reply.

We have always known that kids that are Post BMT are at such a serious risk. Very bad things can happen very quickly and so the doctors are taking things very seriously.

I think it's safe to say that we can all start worrying now. I wouldn't really allow it before, but I think some serious praying is in order. I'm not worrying because I can't right now. My gosh, that kid is perceptive. He watches and feels my feelings like you wouldn't believe. So, I'll let the doctors worry and let all of you pray and we'll see what tomorrow brings.

Dina, I'm okay right now. I'll tell you to come when I'm not, Okay? I promise.

M.

Tuesday, August 20, 2002 at 03:29 PM (CDT)

Darn, Darn, Darn!

Caedan got admitted today. He was having trouble last night with shortness of breath and a really hard time sleeping. He started getting warm at about 3:00 and by 5:00am was 38.2 degrees. The cut-off before going in is 38.0 degrees. We had to go in for a clinic visit today to get teh med. that wasn't ordered yesterday (ARGH!) but we certainly weren't planning on all this.

He has been feeling rotten all day needing gravol and tylenol. Both of which have helped. We have drawn cultures from the line and from his arm as well as a urine sample to see if there are any bugs growing anywhere. Those will take 24-48hrs. He had a portable chest x-ray this morning that wasn't a good picture so they're going to give him a rest today and take him down to radiation tomorrow for a proper one.

He will have to be fever-free for at least 48hrs before there's any discussion of discharge.

How does he feel about all this? He's ticked off. Enough already.

More when I get a chance,
Maryla
p.s. If I need any help, I'll let you know but in the meantime if you're in the neighbourhood, please feel free to water my flowers and tomato garden. Thanks a bunch,
m.

Sunday, August 11, 2002 at 10:13 PM (CDT)

Our friend Dustin has his angels' wings and is watching over us from a better place.

He passed away in his family's arms leaving all his pain behind. We are so very devasted by the loss of such an amazing little fighter and friend.

As you can imagine, Caedan has been hit pretty badly by this loss and can't understand the unfairness of all of this.

I'll write more when I can.

The visitations are on Monday.
The funeral service will be on Tuesday at 11am at the J.L. Ford Funeral Home in Blenheim.

In lieu of flowers, donations can be made to Tyler's Educational Trust Fund or ChildCan.

Cards can be sent in care of the funeral home or to me and I will gladly pass them on to Judy.

M.

Friday, August 09, 2002 at 10:21 AM (CDT)

Our friend Dustin is not doing very well.

I was hoping that you could all join together and send your strength and love to Dustin and his mom, Judy. He's been in the Critical Care Unit for a few weeks now and he is fighting for his life. Seems his little body is growing tired of working so hard so he's needing Dialysis and intubation and much, much more.

If there has ever been a more supportive and loving group than our cyber (webpage) friends, I'd be surprised. You have an amazing power and I know Judy would appreciate all your prayers and support.

Judy wrote some details on Dustin's webpage and you can check that out for more information.
http://www.caringbridge.org/canada/dusinbmt/

Thanks everyone,
Maryla, Caedan and gang.

Saturday, August 03, 2002 at 04:57 PM (CDT)

Another week down and all is well.

Caedan's neutrophils were only 0.4 on Monday so we've been watching for a fever but so far, so good. He's also had some tummy troubles over the last week or so but the docs don't seem too concerned. We're just hoping it's not GVHD.

We go to clinic on Tuesday next week because Mon. is a Civic Holiday.

Today, we all took Cali to Springbank Park to play in the wading pool. After her initial shyness, she had a great time splashing and playing. Caedan sat off to the side in his wheelchair in the shade drinking LOTS of fluid. He still has to get a minimum of 1800 mls in (that's almost 2 quarts!)and more than that if he's out in the heat. It was as close as we could come to doing a little something that normal families do and it felt really good. I'm so glad Caedan felt up to coming. He said that if he didn't, he'd wind up playing video games and even he's getting a bit bored of that.

Maybe we can even find a way to go to the beach one day this w/end. I don't know how because Caedan couldn't use a public bathroom or go anywhere near other people or... oh heck, we'll see.

Enjoy this beautiful summer.
M.

Friday, July 26, 2002 at 09:28 PM (CDT)

Just learned a lesson: Don't ever hit CONTROL W in the middle of a journal entry, it erases the whole thing. UGH!

Okay, here I go again.

It seems that with things going so smoothly lately, I may only be updating once a week. That's okay, isn't it?

Monday's clinic was pretty good. Caedan was able to finish a craft project he's been working on for weeks. It is a birthday present for me. The frame of a fish aquarium with a funky fish hanging down in the middle. All made out of paper mache. He got the idea from the show, Art Attack but said this one seemed a bit more complicated than Neil's version! I was very impressed and will TRY to get my act together and get a picture of it on this webpage. Caedan and Lisa (ChildLife) were beginning to wonder if it was the Craft That Never Ends, It Just Goes On and On My Friend... But they perservered and I'm so glad they did. I just have to find somewhere to put it now.

The rest of this week went fine. Caedan went to the Drive-in to see Stuart Little 2 with Mike G. and last night had a sleepover at Janet's. It's the first one since before BMT and he was delighted. They have such a wonderful relationship and can just talk and keep each other company so perfectly. We have waited this long until he was strong enough to conquer her stairs everytime he went to the bathroom. Janet doesn't have a main floor bathroom and he has to climb about 12 to 15 stairs with a landing in the middle each time he goes up. He did just fine, though and I'm sure he'll be up for another sleepover soon.

I'll try to get more organized with his social life next week. I hate the thought of his days all running into the next with no change of scenery. We do, though try to go out for walks in the wheelchair either in the morning after homecare comes, or in the evening when the UV rays are lower. He loves it. It's a great distraction for him. I had our babysitter come over one day this week to sit with him while I went to the dentist. I brought Cali with me... oh, there's an experience but of course, I couldn't bring him. That worked out well. I should probably get her or someone to come over more often. Even to just push him outside for awhile and get him away from the t.v. We'll see.

I think that about covers all that's going on in this house. Cali still refuses to go to bed without a horrendous fight and continues to have more energy than the rest of us combined. God love her!

Hope you're having a happy summer,
m.

Friday, July 19, 2002 at 10:00 PM (CDT)

Another glorious summer birthday day. We ended it with a coffee downtown (with Cali) and a quick walk through the Home County Folk Festival. Caedan stayed at home with Mike and watched Rat Race for the billionth time. Great movie. Highly recommended by the Gallaghers!

Caedan's dentist app't today showed some wear on his teeth caused by grinding. No surprise to me, I've had to listen to him chomp and grind in his sleep for months as we shared a hospital room. It's stress-related, of course and has made most of his teeth super sensitive to cold. Even a bowl of Rice Krispies and milk hurts. So he's going to start with brushing with Sensodyne toothpaste and hopefully he won't have to get a night guard. I wear one for my clenching and hate it!!!

Caedan sent Scott on a Scavenger hunt to find his birthday present. He did a great job and hid all the clues himself. Scott's gift was an awesome t-shirt designed by Caedan on the computer and ironed on. It turned out great and Scott was delighted. He was also thrilled with his two ties and a shirt. He's so easy to please! We'll go out tomorrow and get him his matching Muskoka/Adirondack Chair. He gave me one on Tuesday.

love,
M.

Thursday, July 18, 2002 at 09:07 PM (CDT)

Everything is still just fine with Caedan.
He is becoming a bit more mobile all the time. He's still out of breath walking from the livingroom up to his bedroom but he's getting there.

We've been a bit busier this week with my niece, Paige here visiting. It has been a great diversion for Caedan to have someone else around during the day and Paige has been good company. The three of us went to see Lilo & Stitch at the drive-in last night. It was really nice to sit outside the van on lawn chairs, watch the movie and eat "real" popcorn (made on the stove). Of course, we were all pretty tired this morning when we had to get up at 7:00 (Caedan was up at 6) to go to the clinic for bloodwork.

Paige and Caedan have been working on Latch Hook projects and it's keeping them busy and... dare I say, quiet. It's a great craft to learn and they can do it anywhere. At the clinic, in the van, on the couch watching t.v. or listening to Cali's CD of Sing-along Songs (over and over and over). If you're in London, Lewiscraft in Westmount has a great selection of kits.

Tomorrow Caedan has to go to the dentist in the afternoon to see about some extremely sensitive teeth.

My birthday was a fabulous day. I had endless phone calls, cards and some great drop in visitors with wonderfully thoughtful gifts. My house is fragrant with flowers. (I don't think we're supposed to have real flowers in the house while Caedan is Post BMT, but I think I've gone long enough without them and I am loving them now!!!) Thank you everyone who helped make my day so complete. Including Cali who wished me Happy Birthday no less than 25 times during the day and "helped" me make my Birthday Carrot Cake.

Tomorrow is Scott's big day. He doesn't get nearly as excited as I do. Caedan and Cali are though! He hasn't decided what he wants for his birthday supper but he is getting a birthday pie this year. We hope to go out for supper on Saturday night so if you'd like to join the party, please call me on Friday and we'll make a plan!!!
M.

Saturday, July 13, 2002 at 09:43 PM (CDT)

The house is quiet. Everyone's asleep. Including Scott who I think has dozed off on Cali's floor trying to get her to sleep.

Our week has been nice and uneventful. Caedan's been eager to go for walks in his wheelchair. The confines of the house must be overwelming at times for him. So we try to head out in the evenings when the sun is safer. He and Mike went for a nice long walk last night to the ski hill. Mike got quite the workout when he pushed Caedan (100lbs) and the wheelchair up one of the hills. Better him than me!

He's had some friends coming for visits this week. Usually for an hour or two but long enough for him to have a little real discussion, instead of medical/adult conversation. We went for a swim and dinner at friends' today and it was marvelous for the soul. It felt so good to do such a "normal" thing...

The homecare nurse still comes every morning for about 1.5-2 hours and then Physio twice a week. Those mornings are busy but it's much better than being at the hospital.

Speaking of the hospital. Today in the van, Caedan and I were talking about a message that Cathie Crawford (one of Caedan's nurses) left on the guestbook. He said that as wonderful as it is to be home, he actually misses the nurses a lot. He said it's too bad you have to be sick and in-patient to spend time with them. What an incredible reflection that is on the angels of the In-Patients staff that Caedan can feel this way about them, even now. We are blessed.

Scott thinks I am shameless using this webpage as a bulletin board to "advertise" my birthday. He's just jealous because mine shadows his so much, even though his is only 3 days later. HA!

Smiles,
M.

Tuesday, July 09, 2002 at 09:31 PM (CDT)

Everything is just dandy here.

I keep meaning to update but one thing always leads into another!

Looks like our clinic visits are down to one day a week. The homecare nurses are coming the rest of the week. Clinic day, Monday is a long one, but we'll manage.

Sorry to be so brief, but I've got dishes to do.
Remember, no news is good news, so stop worrying!


M.
p.s.
Only 6 Shopping Days left...

Monday, July 01, 2002 at 09:42 PM (CDT)

Updated at the bottom on July 1st.

We did get to see the fireworks after all. Actually, we had a really good view from our driveway. We were going to drive down the street and stay in the van, but Caedan was just too tired. It's a good thing we didn't because Cali was NOT impressed by the noise. She was intrigued by the flashes but could have done without the bangs! I remember being a little girl and fighting the crowds with Pruitt and my parents to see the Detroit River fireworks. I also remember being terrified by the noise. I wonder if my Mom packed us up and left or just took me to the Batagello's house down the street to hide inside.

Speaking of Pruitt, he arrived yesterday with Paige and Paige's best friend, Katrina for a visit. They are heading to Niagara Falls in a motorhome. Even though it makes life a bit busier, its been a delight having the girls to add life to the house and entertain Cali Beth.

Caedan and I spent 8:30-5:00 at the hosp. while he got Gancyclovir, Amphoterisin, and Cytogam. The homecare nurse will come tomorrow for Gancy. and on Wed. we'll go to the clinic for Ampho. after the homecare does the Gancy. Mondays will be our long day as long as he is on Cytogam. He had a mouth swab today and we'll see if the fungal infection is gone and then maybe we can d/c the Ampho. Cross your fingers.

The steroids have been decreased somewhat. They help keep the Graft Vs. Host Disease skin rash from coming back but they have all sorts of nasty side effects. Fluid retention, bloated feeling and appearance, outrageous hunger, loss of bone mass and muscle strength, and more. When he first got the GVHD rash, he was getting 35mg of Prednisone twice a day. Now he gets 15mg, twice a day so you can see how it's decreasing. I'll be so happy when it's gone. He weighs 45.6 kg or 100.8 lbs. !!!

He still needs a wheelchair outside the house, but can walk around the house (with help) or crawl up or down the stairs. He still needs a bath everyday no matter how tired and rundown he is as his risk of infection is too high.

We try to keep busy during the day. Physio is coming twice a week plus we're at clinic so often. But still, we need some "fun" time, too. He can have friends over one at a time for short visits as long as everyone in their house is feeling fine. Some days I find he just wants to veg out, and other days he needs a diversion.

This has become one of my longer entries, hasn't it? But I have one more important thing to report on:

I apologize for not giving my usual 4-week warning but things have been busy to say the least. So instead, I give you a two-week notice.

Two weeks tomorrow is my birthday. I can only hope I've given you all enough notice to get those cards in the mail. It's not like me to leave this to the last minute like this! Again, I apologize.

Smiles,
Maryla
P.S. with all that chatting I forgot to tell you about the Blood Drive. We had 54 donations and the goal was 48 so it was quite a success! There were 10 deferrals which means they can come back on another day.

Caedan was able to come out with a mask on and sprayed the kids... I mean the cars for a little while before heading to the O/P clinic for meds. I had a great time seeing so many wonderful people. I got to meet a lot of the folks from Compass Foods (20 of them came in shuttle buses) who came out when they heard from Tracy Besterd about the blood drive.

We were most proud of Trudy who came out despite her anxieties and gave a full pint before getting sick and sadly, having to take her name off the donors list. I was so impressed that she came out and with her donation could have conceivably saved 4 lives. Pretty great, eh?

There was a pile of kids from Caedan's school who worked enthusiastically under the watchful eye of foreman Pat L. for the full four hours of car washing. Moms stood on the sidelines and helped to keep the 9-yr. old boys from getting run over by cars! What fun!

We are blessed to have so many wonderful friends!
M.

Monday, June 24, 2002 at 08:44 PM (CDT)

Things are going very well here at home. We go to the out patient clinic at the hospital Mon, Wed, and Fri. for I.V. meds and a homecare nurse comes to the house all the rest of the days.

We have to spend all day tomorrow, the Canada Day Holiday in hospital getting meds. Boo! But we should be home in time for the fireworks. Caedan can't be near crowds so we'll hope to see a few pop up over the trees from our driveway.

More on Monday,
M.

Sunday, June 23, 2002 at 08:53 PM (CDT)

Caedan slept at home last night. It was wonderful for everyone. He had to go back to hosp. this morning for Gancyclovir so he's not discharged yet. He's home now and we will all sleep at home again tonight. Then he and I have to be back in his room by 8:30am (Janet's coming to watch the curly-haired monkey) for his Cytogam and Gancyclovir. We'll probably be there for the better part of the day but then he's discharged!!!

Of course, nothing is simple with the Gallaghers. The van's brakes are shaking and failing. So we took it to the garage tonight to leave overnight so they have all day to work on it. (Juin from next door came to sit with the kids so we didn't have to lug them out in this heat in Scott's un-airconditioned car!) We'll have to take Janet's car to the hosp. and back and somehow get the *&#@ van back tomorrow night. Scott goes to Oakville on Wed. and Peterborough on Thurs. or something like that.

Caedan will go to outpatient clinic at LEAST twice a week for a long time. He'll need his counts watched closely and everything else.

Early morning tomorrow. We're off to bed.

M.

Thursday, June 20, 2002 at 04:12 PM (CDT)

A return home is looking much more promising. Probably Monday or Tuesday. It's such a relief, I can't describe it.

Feeling good here.

M.

Tuesday, June 18, 2002 at 09:43 PM (CDT)

Hi there,
Things are looking up for a return home.

Caedan had a great weekend with LOAs on both days. He also had another LOA today for a few hours. He was wiped out by the time we got back here at 7:00pm. Along with some time at home today we went shopping for sandals. We went to Factory Shoe Outlet and Caedan sat in the car while I ran in and picked out a few pairs to try. The sales person there was very understanding when I explained that my son cannot be in any public areas due to his lack of immune system. We found a pair of sandals, a pair of moccasins (slippers are a bit "sick patient-y") and a pair of sandals for Cali. A productive, if not original way to shop!

They are still trying to find home care nursing so we can get home.

It's late and I'm using the hospital computer. Better go!

M.

Thursday, June 13, 2002 at 07:07 PM (CDT)

Caedan came home again yesterday for a few hours. Cali was at daycare and then Karen Sanderson's so it was a bit more peaceful for him.

The fungal infection is still here. Still being treated aggressively. We're now trying for a way to give the 8:00am I.V. drug and the 4:30pm I.V. drug just after each other so we can come home and have Homecare nursing do the administering. Not as simple as it sounds. Homecare is not a great solution. Way to risky with passing on critical bugs. I'll let you know what comes of this.

May have another LOA on Sunday for Father's Day. Yay!

Scott got his Father's Day gift early this year. I had the rented hot tub set up yesterday and he has it until Wednesday. What do you get the man who has everything? Of course, we have to be SO careful with Caedan that we're not going to have any hot tub parties this time. Perhaps we'll have to rent it again sometime... London Hot Tubs is where I rented it from for any of our local readers!

ttfn,
M.

Sunday, June 09, 2002 at 02:27 PM (CDT)

LOA Today,
LOA Today,
LOA Today,
It's A Grand 'Ole Day, Today!

Caedan is home for 5 glorious hours. Cali is tiring him out completely, but as tired as he is, he sure looks content!

M.

Wednesday, June 05, 2002 at 08:09 PM (CDT)

Sorry for the delay. But fear not, all is fine here.

We hope you had a chance to see Caedan's quick spot on the telethon. I was so proud of him. It was taped about 10 days before the telethon and I can really see how improved his breathing is now!

Caedan took a few steps forward these last couple of weeks but one step back on Monday. He has developed a fungal infection. It's a yeast infection in his mouth. If you've never seen this, it looks like a coating of white flakes or sour milk lining his mouth and tongue. Apparently it feels like he's wearing a sock on his tongue. UGH! They've put him back on Amphotericin I.V. to clear it up and it has improved today. It reminds us once again, how susceptible he is to every little thing!

Today was fun day. This morning I made fresh bread in the bread maker that we keep here in his room. Then in the afternoon, Lisa from Childlife came in to make Peanut Butter cookies in the Toaster Oven (donated by ChildCan)with Caedan and Mike G. Needless to say, with those kind of aromas seeping under the door, we had a lot of company. It was a laughing kind of day.

No dates of discharge being discussed, but I think the doctors understand that Caedan needs to get out as soon as possible. Did you know that out of the LAST 157 days (over 5 months), Caedan has been out of the hospital only 32 days in total. And trust us, it feels like that, too.

M.

Friday, May 31, 2002 at 02:49 PM (CDT)

Caedan's T.V. spot for the telethon is slotted in to be broadcast at 7:37pm on Saturday. They suggested we should expect it anywhere between 7:15pm and 7:45pm to be safe. We can't wait.

Caedan had a special visitor today. Natalie McMaster came in and gave him his own personal fiddling performance. It was a terrific piece and had me in tears to watch him tapping his toes on the bed as she sat beside him in a chair. Natalie performs tonight at Centennial Hall as a kick off to the Celebration Weekend - Telethon.

We will have posters and flyers made for the Blood Drive in June by next week. We're going to incorporate a car wash during the day so we are looking for volunteers to wash donors' cars while they give blood.

Let me know if you're interested.

Have a good weekend.
M.

Wednesday, May 29, 2002 at 09:25 PM (CDT)

Home for the night. Going to bed in a minute.

Caedan is feeling better. Shortness of breath MUCH improved. The CMV must be moving out of his lungs. His steroid was cut back a bit and there is no sign of a GVHD rash flare up so that's good!

His counts dropped significantly in the last couple of days so he has begun GCSF shots. These are a kind of "fertilizer" for the marrow to help it kick into gear and improve the blood cell production. Remember I told you that the Gancyclovir is powerful on the CMV but damaging to the marrow. This is probably what's doing it.

Caedan has been working diligently on the 750-piece Star Wars puzzle. He's had some help from Uncle John and Aunt Christie who are here with Baby Noah for a visit. Mike has also joined the puzzle team and tonight it looked like they were more than 1/2 way done!

Hey! Mark Friday June 28th on your calendar. The London Branch of Canadian Blood Services is holding a Blood Donor Clinic in Caedan's name. We are going to try to really promote things between now and then with flyers and maybe I can get some media attention. We'll see. Blood donations tend to be slower during the summer months and with this being the kick off to the first Summer Long Weekend, it might be just the right thing to move donations along. I'll have more details soon!

Another big bit of news. Caedan recorded a spot for the local t.v. station, The New PL for this weekend's Children's Miracle Network Telethon. I'm hoping that by tomorrow I'll know approximately when his spot will be broadcast this w/end. I will let you know when I know!

Okay,
off to sleep in my own bed.
M.

Friday, May 24, 2002 at 08:30 PM (CDT)

That 500-piece puzzle Caedan started on Tuesday afternoon? It's done. Yesterday!!!

We started a Harry Potter 250-piece one this morning. DONE. Two hours later. I asked him if he wanted me to bring up the 750-double-sided Star Wars puzzle and he thought we could take a break first. He's eager to start on the model airplane he got this week. Needless to say, we're keeping busy.

CMV levels were taken again this week. Went from 34 to 18. That's better. Still has shortness of breath and stomach pain, but it's a step in the right direction.

Oh, and here's a cool thing. Because his platelets weren't staying up over 20 after a transfusion, we are now using HLA matched platelets. This means the Blood Services finds about 5 donors from our community who have registered to be platelet donors. These people must match Caedan's HLA type. Then, these people make the commitment to regularly donate platelets to Caedan. One donor's platelets can keep Caedan's up for a few days. Then the next person on the list donates, and so on. Apparently, platelet donations are much more involved than just blood. It is quite a time commitment. Like, the better part of the day!!! Isn't this incredible? Who are these people? We are so blessed!

M.

Wednesday, May 22, 2002 at 09:46 PM (CDT)

DAY +69

So, it's the 69th day after BMT. It's good to have come so far. Very good.

I know you're all wondering about this CMV and when Caedan will be rid of it. The way I understand it is this:

This virus hits Post BMT kids very hard. It can sit in different areas of the body and be extremely damaging. Right now we know it is in his lungs and possibly somewhere in his stomach. The shortness of breath would be from the lung infection and his terrible stomach pains from the CMV as well. The Infectious Disease Specialist (who is fabulous, by the way!) explains that they are monitoring the "amount" of CMV in Caedan's system. So last Friday it was at a level of 38. Yesterday it was 34. That's a very slight drop but a good one. She tells me that CMV moves out very slowly. If he started at close to 50 and is only at 34 with all the symptoms remaining, albeit lessened, it proves how slow this recovery is.

I'm not worried. I believe he is being treated with the best meds for this virus. I am thankful that the CMV levels are dropping and that we did not have to start on the alternative medication that is horribly toxic. I am so relieved to see some of the pain improved. I would like to see it all gone. I'd like to see his strength return. I'd like him to go home. I'm thankful not to be worried. I've had enough of that. I am painfully aware, though of how bad an infection can be to him. I know that the effect of CMV on his lungs could have been MUCH MUCH worse. I also know that a different infection could grasp him. I know he has no defenses from that right now. But, believe it or not, I'm not worried about that. I'm being cautious. I'm keeping informed. I'm watching everyone wash their hands. But I'm not worried. It's nice not to be worried right now.

A few months ago, before transplant, I tried to explain that this BMT was a life-saver for Caedan. But I don't know if I explained that it isn't the conclusion. It isn't the cure. When we first got back from Toronto after transplant, many people would say, "but the worst is over". Usually, I just assured them that it was. But there's so much more. The grafting took place. Thank God. Scott's marrow is working in Caedan. Yet, there's a long road ahead still. The near fatal dose of chemotherapy that he received plus the total body radiation may not have succeeded in killing every last leukemic cell. Those %$#* cells have proven to be pretty darn resistant to chemo. Only time will tell if the leukemia is gone for good.

These dreadful infections will be a fear for some time. Certainly until the post six months are over. There is still a lot to be worried about. I am convinced though, that if it comes down to will, none of that will matter. Caedan has a strength and will to conquer this disease that presides over all of that. A strength that helps us all carry on.

Okay, all that was a bit vivid, I know. And I have tried hard not to be so blunt on this forum, but this has become much more than a webpage for me. It has become an account of Caedan's climb and of my climb, as well. So with that comes a little more reality than we sometimes want. Don't worry though, this won't be a daily occurrence.

Oh, and Carol, whether he wants to know the "tough parts" or not, you can give Pruitt a copy of this, too. Reality!

M.

Tuesday, May 21, 2002 at 09:14 PM (CDT)

Caedan started a 500-piece puzzle today so I guess he understands that we may be here for awhile. Of course, knowing Caedan and his concentration, that puzzle may be done by the w/end. I'll keep you posted.


Caedan seemed to have less strength and energy today. Everything is such an effort. Sitting up in a chair, walking to the bathroom. But it's his will that keeps him moving. It's like he just won't allow himself be completely sick. It's all about will, isn't it? For all of us.

M.

Friday, May 17, 2002 at 07:45 PM (CDT)

Today the shortness of breath seems to have improved a bit. It doesn't seem quite so tiring for him.

Caedan's CMV levels have dropped which is VERY good news. If they hadn't, he would have had to start taking an extremely toxic drug that we did not want to think about. His counts are not too bad but he still looks like he'll need platelets every other day for awhile.

He spends his days doing a lot of drawing and colouring. His creativity is shining through and we have a lot of fun reading his stories and comics.

We're not planning on being at home at anytime soon. At least another couple of weeks.

That's all for now,
M.

Wednesday, May 15, 2002 at 09:55 PM (CDT)

First of all, a BIG thank you to all our Meal Angels! The fresh delivered meals were awesome and thanks to the Mangin Brigade and their Sunday visit, my freezer is stocked full of ready-to-thaw-and-eat meals. Plus, some yummy Crock Pot recipes and ingredients ready to go! Mangins, you'll be happy to know, I brought up fresh cantaloupe and banana bread for breakfast. It was great because today Caedan had to go for a CT scan early in the morning and I didn't have time for anything else. Just right!

So he had a Spiral CAT Scan of the chest to try to find the cause of his shortness of breath. Perhaps there were little embolisms (clots) that were effecting his lungs. Thank Goodness the scan showed no clots but it did find the CMV in his lungs. This could be the cause of the shortness of breath. Dr. Cairney spoke to Dr. Doyle at Sick Kids and she has added another drug to work with the Gancyclovir to clear up the CMV. I'm not convinced this is what is causing the shortness of breath. Caedan has had this problem since he was first admitted. Actually, he had it when he was admitted after we returned from Toronto and even when he was a Sick Kids Hosp. It seems to me that the docs are just now starting to show concern over this. NOW, it could just be me. I might not remember things quite right or be getting a bit cynical. Regardless, they are trying to understand it better now, so that's important.

On Sunday, Caedan started getting some nasty heartburn. He's been on different and effective I.V. antacid drugs but suddenly they don't seem to be working. Dr. Howard (Gastroentrologist) and his resident came in today and ordered Pantola I.V. for tonight. If this doesn't help, he will need to have a "scope" in the morning. You don't even want to know about that! In order to do the scope, though, his platelets can't be too low.

Speaking of platelets. His are being stubborn. The trend seems to be. Day one, less than 10. Transfusion. Day two, up to 30's or 40's. Day 3 back down to less than 20. Transfusion... and so on. Today they were 43 so I assume he'll be low tomorrow. We'll see.

I've been having some battles over the cleanliness or lack thereof of the unit. I will vent more later but the short story is that they don't seem to understand the sensitivities of Post BMT patients. At least not in the way that was drilled into us at Sick Kids. I had to express my strong disapproval, okay, I had a fit, over the fact that Caedan was to go down for CT scan yesterday with only one technician available and that tech admitted to having a cold. Why in God's name would they expect Caedan to traipse through the hosp. (mask or no mask) only to be looked after by someone with a cold. If he can get this sick with this CMV that can be virtually invisible to an "average" person, how would he be with Bronchitis or an upper respiratory infection? Am I getting a little loud up here on my soapbox? Maybe, but I'm also a bit raw with emotion over Caedan and Keeley and all these beautiful children with cancer. So, I'll stay up here on the soapbox and make sure that I police the people/staff who come into his room. Make sure they wash their hands, are healthy, and make sure that Caedan is protected as best I can. Because that's what Mama Bears do best.

M.

Sunday, May 12, 2002 at 07:07 PM (CDT)

Happy Mother's Day!

I am home this evening with Cali. I was getting overwhelmed with the hospital and thought it best to take a little break...

Scott and I went for dinner last night thanks to Janet and Carleen spelling us off for a few hours. Then, I stayed last night with Caedan so we could have Mother's Day Morning together. Scott came up noonish and he will stay until he leaves for work tomorrow. Janet will relieve him for the better part of the day until I go back up.

The last fever Caedan got was yesterday at 11:00pm so if he goes the rest of today w/o one that will be the first day in awhile! His counts are still shifting around quite a bit. Platelets were 43 this morning but he got a transfusion late last night so they could have dropped again by now. His Hemoglobin is only about 76 so that's not too high*. The platelets seem to be having a hard time staying up by themselves.

Sounds like the course of Gancyclovir is as long as two to three weeks. Now, I haven't heard this from Dr. Cairney yet so I'm not saying that's for sure. I think she's finally back on call on Tuesday and Scott and I can relax a bit more. Not that we don't love everyone up there, but it's with Dr. C. that we feel most comfortable.

Caedan is still very weak and tired. He only walks as far as the bathroom in his room and getting him into the tub down the hall every day is a big production. Even if we use the wheelchair, the tub is not very patient-friendly so it's a struggle to get in and out when he's so tired.

I'll try to update again on Tuesday or Wed. after Dr. C. returns or sooner if anything changes.

A very sweet 5 yr. old girl died with Neuroblastoma yesterday. She has been battling it since September but took a dreadful turn in April. It has been such a blow that sometimes I wonder where the strength comes to get up in the morning after such things.

M.

*Hemoglobin less than 70 usually needs a blood transfusion
Platelets less than 20 usually needs a tranfusion.

Wednesday, May 08, 2002 at 06:11 PM (CDT)

Good news.
We found the source of infection. Who would have thought that was good news? What I mean is that if we couldn't find the infection, we wouldn't be using the perfect antibiotic or worse, that there wasn't an infection and his counts were dropping for another reason.

So, he has tested CMV positive which is short for Cytomegalo Virus. It is very difficult to detect. In Toronto they have a test that will confirm whether this virus is present on the White Blood cells in a couple of days. In London, it takes a WEEK! He could have been treated with the correct med. a week ago. Charming, eh? One of our Residents who specializes in Infectious Disease has been lobbying for this machine (?) for London.

Okay so here's what's wrong with CMV. It's something that we can all have but in an immunosuppressent child, it can reactivate more than once! In fact, he had tested positive for CMV back before his transplant. It is very harmful to the graft. Meaning it could stop the transplanted marrow from successfully living and progressing in Caedan. It can also knock down the platelets (which we have seen happening in Caedan these last few days).

He got Blood and Platelets yesterday and his counts have risen a wee bit from that. Still, the fevers continue and lethargy remains.

Now that CMV is confirmed, he has started Gancyclovir I.V. which is the drug of choice for this virus. But alas, there are negative side effects to Gancyclovir. It can affect the White Blood Count, the functioning of the liver and is hard on the marrow. The nephrologist (Kidney specialist) believes that the benefits of Gancyclovir outweigh the risks to the Kidneys.

We will continue to monitor his Urea and Creatin levels to watch that his kidneys are okay.

The Potassium levels are better but still not perfect. He's getting Magnesium with his TPN (the I.V. nutrition) and continues to get lots of other meds including the good 'ole steroid.

Now that we've started the Gancyclovir, the fevers may cease within the next few days. The docs still want to keep a close eye. I'm expecting to be here for another week or so.

M.

Tuesday, May 07, 2002 at 10:26 AM (CDT)

Caedan is feeling better today. Still needs morphine once in awhile for cramping in his belly. He just told me to say he's bored out of his head.

Spiked a fever as recently as this morning so we won't be packing up to go home for a few more days yet. No source of infection found. The optometrist was in yesterday to look for any signs of fungal infection in his eyes. Also, Caedan went for an ultrasound of the abdomin to look for the same! Apparently, these are a couple of prime areas for fungal infections. So far, nothing has come up! This is good news, but we still don't know where these fevers are coming from and why the counts are dropping.

Yesterday, Caedan's platelets were less than 10 so he got a tranfusion in the morning. Then he got some whole blood because his hemoglobin was only 76. This has perked him up a bit.

We'll see how the rest of the week goes.

M.

Sunday, May 05, 2002 at 05:29 PM (CDT)

Caedan's pain seems to be more controlled now. He has been sitting up in the chair more today and was going to play video games with Mike G. (his Camp Trillium Buddy) this afternoon. With our fear of bugs and germs we've pretty much designated just 2 alternates to stay with Caedan if we can't. Mike and Janet. No visitors yet but we'll let you know when.

I'm concerned about his blood counts right now. His WBC have been mostly sitting at 6.0 or more. Today they are down to 3.0 and his hemoglobin is down to 86. His platelets have really dropped. Yesterday 36, today 26 and they usually transfuse at less than 20. His gums were bleeding when I brushed his teeth today so I hope they consider a transfusion soon.

Now, when he was on chemo we expected his counts to drop. That meant the chemo was doing its job. Now he's not getting chemo. Never will again. So why are his counts dropping? Is his marrow not working the way it should? Should we be worried? Oh, we're always worried. Should we be more worried? I'll try to get some answers from the Oncologist tomorrow.

I've probably said this before, but we still have a long, bumpy road ahead of us and I appreciate the continuing love and prayers.

Oh, and by the way, dear Jenn (the one who came from Vancouver to help) suggested I ask for a few single serving meals. I guess that's a good idea because the hosp. food is intolerable and man cannot live by Mr. Noodle alone.

Love,
M.

Thursday, May 02, 2002 at 08:27 PM (CDT)

Caedan's pain is not necessarily much better but a little more controlled. Caedan is now getting morphine I.V. and lots of gravol. All his meds are going in by I.V.
At home he was taking up to 42 pills a day and now that he can't keep anything down, they need to give it to him I.V. His Potassium and Magnesium levels are all wrong so he needs all sorts of adjustments to that.

His lungs sound clear and his O2 stats are good (getting the right amount of oxygen) but he has a real shortness of breath. One doc said it was from the pain. I didn't buy that one. He's been in pain before and been able to breathe fine. Dr. C. thinks it could be a fluid build up elsewhere and has ordered Albumin for tonight to see if that helps.

Last night, and again tonight he has lots of meds going into his lines. This means another night of continuous beeps from the I.V. pumps, followed by me calling the nurse with the call button, followed by adjustments to the I.V. Not much sleep. Fortunately, Caedan sleeps through most of it. Even getting his vitals taken, he doesn't really have to wake up.

I haven't really been going home for breaks this week as Caedan has been feeling so bad. Janet came in this afternoon and I scooted out for 3 hours. I grabbed some things from home, put away some clean laundry and went for a Pedicure. Yes, I know what you're thinking. But until you've had a pedicure at Essentials, you don't know what you're scoffing at! It is very relaxing and the whole "treatment" lasts almost 1.5 hours. Bliss. Anyway, Stacey gave me gift certificates for this little treat, so how can I refuse!

Time to settle Caedan in for bed and then I can get comfy and watch E.R. It's a new episode, tonight, you know!

M.

Wednesday, May 01, 2002 at 08:32 PM (CDT)

I can't write much. Caedan is here just moaning in pain. His stomach is really hurting. He's been like this since yesterday at about 5:00pm. Diarrhea, vomiting, and horrible gas/stomach pain. He's still getting fevers so we're not even counting down 48hrs. yet. He slept virtually all day and that's not like him at all!

Cultures are all coming back negative for bacterial anything. Could be a viral stomach bug. I don't know and the docs don't seem to either. He's getting Gravol and Codeine and lots of fluid in his I.V.

He looks terrible today and that's hard on me. I just want him to feel better.

Gotta go,
M.

Monday, April 29, 2002 at 01:07 PM (CDT)

I just called the hospital to report that Caedan has a temp of 38.9 degrees C. (102.0 degrees F). And so he has to be admitted. His temp. was 36.6 when we were there for bloodwork this morning) and his counts were good. But when the kids are post transplant, they have to be admitted automatically with a fever! He is REALLY sleepy today and that was a red flag to me that something was wrong. Even sleepier than usual and he slept as soon as we got back from the hosp. instead of immediately eating. Second red flag!

Cali has a sleepover at the Sanderson's so things are simpler that way.

Away we go again...

Tuesday, April 23, 2002 at 10:53 AM (CDT)

Caedan's getting sprung today!

Just found out the bug is sensitive to Cloxicillin (antibiotic) and he can go home on that orally!

Very Good news! We had just been told we'd be in another 4 days or so this was a pleasant surprise.

Caedan had a great birthday. Thanks for all the wonderful wishes!

M.

Sunday, April 21, 2002 at 03:33 PM (CDT)

Good news, bad news.
The bad news is Caedan has to stay in the hospital for a few more days. The good news is he can have a Leave of Absence tomorrow evening for a Birthday Celebration. THANKS LISA, RN !!!!

Right after his every-6hr. antibiotic is done running at about 3:30 he can come home for about 5 hours and then go back. Not bad, eh? We can do presents and supper and cake at that time!

His spirits are good today and that makes us all happy.

M.

Friday, April 19, 2002 at 03:14 PM (CDT)

Found the source of fever. A bladder infection... Now we will see if we can find the bug that's caused it and decide if he needs I.V. antibiotics or can go home and take oral antibiotics. Regardless, he needs to be fever-free for 48 hours. So far, it's been 32 hours fever-free! Then, when we hit 48 hrs we'll see where we're at.

I must say, even though we're stuck up here in the hospital, it feels good to be "home" in London. It's just so much easier for everyone.

Scott stays tonight and Cali and I will go birthday boy shopping. Tomorrow I'm going to get my haircut... a LOT ! First muggy, humid day and I'm reminded why I don't let my hair grow this long. Yikes! I'm bringing Cali along so wish me luck. Should be interesting for everyone!

M.

Wednesday, April 17, 2002 at 07:28 PM (CDT)

Well, it was fun while it lasted.

Caedan is back to the hospital tonight. His temp at 7:00pm (ETD) tonight was 39.7 C.

On Monday his WBC were up around 7.2 so it could be just something viral brewing. He was really sluggish today and couldn't keep alert from about 11:30 on. He's always tired, but this afternoon it was something different. He was frustrated by it too. He asked to go outside in the wheelchair hoping it would "perk" him up a bit. He really like being outside but afterwards went straight to bed.

Scott took him to Emergency (here in London) where he'll most definitely be admitted. He'll come home when they're settled and I'll go up for the night.

Cali is not pleased. Told him he HAD to come home tonight and sleep in his own bed. Her Ladyship speaks!

M.

Monday, April 15, 2002 at 08:47 PM (CDT)

Everything is just great.

We got home on Thursday at about 10:00 and had a lovely, quiet family weekend. Turned off the ringer on the phone, put a "do not disturb-type" greeting on the voicemail and just hung out. Cali hasn't taken her eyes off Caedan since he got home!

Today we went to the hospital for blood work to see what his Cyclosporine levels are. He takes this to help prevent GvHD. He still has no immune system and won't for some months to come. The levels are to make sure he is getting the right dose of Cyclosporine as this is a very important drug. Caedan received a king's greeting from everyone at the clinic. It was really nice for him and me!

Many of you are asking when he'll be able to have visitors. He is not in the kind of state he is when he returns from the hospital after chemo. He is still a very sick little boy and is very wiped out from all his body has been through. I can see why many of the kids are still in hospital at this point! We are being VERY cautious about germs and bugs. He can't go out to visit others for awhile yet and we're going to wait awhile before anyone but family sees him. He is still in a vulnerable state and we would hate for him to catch anything right now.

So, we are thrilled with well wishes and in a few days when Caedan feels better, I'm sure he'll love a few phone calls to keep him in touch with the outside world.

We go back to clinic tomorrow for some more blood work and then maybe not again until next Monday. Which, by the way is his birthday!!!

M.

Thursday, April 11, 2002 at 03:54 PM (CDT)

Poor Dina, she's been in agony these last two days waiting to hear that:

We're Coming Home ! ! !

In fact, we would be gone now, but it's rush hour in Toronto and we know better than to go anywhere at this time!

We'll eat supper and check out of Ronald McDonald House and head home.

Caedan is being very patient. We're coming home with more drugs than I ever thought possible. I've had more information sessions and lessons and orientations and... Well, I feel like I should have R.N. after my name!

I know that you have all been anxiously waiting for this news almost as much as we have! But no one as much as Cali. Imagine her delight!

Okay, I'll be happy to update you in the next day or two FROM HOME!

M.

Tuesday, April 09, 2002 at 09:32 PM (CDT)

DAY 26 (?!)

Another banner day! Caedan managed to drink the 1800mls of fluid. Mostly milk and Peach Kool-Aid today. He ate a few very small meals and didn't nap at all.

Physio. went just great. Lots of stretching and walking on his own. We went for a walk in the wheelchair and had supper in the Parents' Lounge for a change of scenery.

He's having some itchy fits on his legs and hands that I suspect is the GVHD flaring up now that the Prednisone (steroid) is cut back. We'll see how things are tomorrow.

Some very dear friends gathered at my house today (and a particular friend's Dad, yesterday) to Spring Clean the house. It can't be "sanitized", of course, but they ask that we give it a REALLY good cleaning before Caedan comes home. You know, those spots we skip over during the regular cleaning but finally get to once a year... or once every two years... or... Anyway, my light fixtures are cleaned. The pillows and bed covers are washed and the couch under the cushions has been vacuumed. Not bad, eh? I was thinking we had at least 2 weekends to tackle this and now suddenly we are down to a couple of days! But they managed it anyway! Thank you Troy, Kelly, Karen S., Jenn and Jenn's Dad, Mr. Brown. Your kindness is such a precious gift.

When Caedan comes home he will be on a six-month House Isolation. This means he cannot go to any indoor public places. No stores, malls, bowling alleys and sadly, no school. He just will not have the immune system to fight off any bugs or germs that we have no trouble warding off.

In a little while he'll be able to have a friend over for a visit as long as he/she is feeling well and no one in their family is sick. This will be difficult, of course, but it's a LOT better than being here.

We'll get a lot of Discharge information tomorrow so I'll try to update you tomorrow night with more details.

M.

Monday, April 08, 2002 at 06:44 PM (CDT)

DAY 25

GREAT NEWS ! ! ! ! !

There is a very good chance that Caedan may come home on Thursday!
WBC 6.1
Hgb 104
Plt 86
Nts 4.73

Not bad, eh?

They have taken him off all IV fluids, nutrition and meds (except 10 min. of steroid). His commitment with this is that he must drink 1800 mls in a 24 hr. period. Do you realize how much that is??? A LOT !

This morning he had a 10-minute inhalation treatment with Pentamidine. By breathing this drug directly, it should help fight off a type of pnemonia to which immuno-suppressent kids like Caedan are very suseptible.

They aren't as concerned about eating as much as drinking. He has started eating a bit more now so that's nice to see.

Today he spent almost 45 minutes down in the gym for physiotherapy. It was great to see him up for such activity. Right now he's working on his Kinder Surprise toys. Our friend Sue Sterner told the company Ferraro about Caedan and they immediately sent 25 Kinder eggs, sans chocolate for him to built and create. What a fantastic idea!!! Next he wants to dig into his K-Nex that Alexander brought up with his parents. Oh, and he also built and painted a Crayola Birdhouse this afternoon. Not a bad day, at all!

Along with the fluid intake, Caedan's discharge is reliant upon him remaining fever-free and able to take all his meds by mouth. The steroid is going to be tapered off and we'll hope that the GVHD rash does not return.

All of our fingers and toes are crossed for discharge but we'll believe it when we see it!

M.

Friday, April 05, 2002 at 10:04 AM (CST)

Good Morning,

Things are a bit smoother here today. Caedan is doing some school work as I update and feeling pretty good. Not enough energy to walk or play but still, he's improving!

His counts are bouncing around a bit.
WBC 3.0
neut 1.98
Hgb 95
plt 65

Which is, apparently, to be expected. No transfusions have been needed this week so that's good. His Potassium is quite low so we have cut back on his TPN (IV nutrition) to encourage him to eat some Potassium-rich foods. Yesterday he had a small bowl of Magix Cereal. It has Mickey Mouse on the front and the milk turns blue, but I don't care!!! As long as he eats something!

Scott comes tonight and I'll get home around 10:00 tonight.

Tuesday, April 02, 2002 at 02:50 PM (CST)

DAY 19

WBC- 5.6
Hgb - 100
plt - 36
neuts - 2.99

The counts have dropped slightly because the doctor has discontinued the GCSF. This is the drug that is used to help the Bone Marrow make new blood cells. Now that his marrow seems to be able to do it okay, they can stop the GCSF and allow his marrow to work alone.

Caedan spiked a fever 39.2 yesterday and is back on Tobramycin and Pipercillin. It still isn't back down to normal but not quite as high.

He's very tired and lethargic today so we're just taking it easy today.

Jennifer Friesen arrived yesterday to help me for the next 2 weeks (in from Vancouver) so my blood pressure is dropping back down to normal.

M

Sunday, March 31, 2002 at 09:39 AM (CST)

HAPPY EASTER !

DAY 17
WBC - 7.2
Hgb - 99
Plts - 36
Neuts - over 4.45

The great news is (if those counts weren't enough already), Caedan moved to a Step Down room yesterday!!!!!~

This is great news. No more isolation. Just a very clean private room with a little privacy, at last!

Karen Beck Sanderson reminded me that we thought he'd be in Isolation until Day 20, at the earliest, so I guess we're ahead of the game. Scott was finally able to sleep in the room with Caedan last night.

I'm going back tomorrow.

Thank you for all the prayers. They are being heard.

M.

Thursday, March 28, 2002 at 08:28 PM (CST)

Hi,
Quick note because I know you are all worrying. Today was a bit better.

Still hard on Caedan but some meds are starting to help.

I got out for lunch with Lisa M. while Colin sat in with Caedan. It was a life saver!

WBC - 0.7
neuts. - .38

VERY good sign. They are on the way up!!! Lori, you and Isobel must be doing the Neutrophil Dance back home!

M.

Wednesday, March 27, 2002 at 03:07 PM (CST)

Here is yesterday's news first (Tues.,Day 12)
WBC - 0.4
Hgb - 91
Plt - 22

Got a transfusion of platelets. Rash is much worse. Very itchy.
With WBC on the rise a bit it looks like this could be engraftmennt!
-Very long, tough day. Worst one ever, I'd say except for that Friday in December when I waited to see if he had definitely relapsed the 2nd time.
-I was very emotional; all day on the verge of tears. Caedan's on Prednisone now for the GVHD so he's a bit more emotional and clingy.
-Had a portable ECG/ECHO to make sure there isn't an infecion on his heart.
VERY high blood pressure. 140/100
-started on a med. to reduce the BP.
CT Scan done at 5:00pm. Very difficult. Had to be transported down to Imaging for this all covered in sheets and raced down on a wheelchair. The Porter even had to shout at people in the hallway to stay back so that he wasn't exposed to anyone!
-Lying on his back through CT Scan was very difficult as he had to cough so much.
Very long day. I didn't leave until 12:00 midnight.

Today, DAY 13

WBC - 0.5
Hgb - 84
plts - 58
Neutrophils 0.25 !!! YAY! We have neutrophils!!!!!!!!!!!!!!!!!

This is a definite sign of engraftment (meaning Caedan's body is making new cells with Scott's marrow!). When I told Scott this news he was so relieved. Said it was like seeing the steam rise from a slit in a hot pie.

Unfortunately, this has been another terrible day. Since early this morning Caedan has been extremely anxious. Almost out of control. And as you all know, Caedan is never out of control. The staff were all eager to give him Ativan for the anxiety but because he had horrendous hallucinations with it CHWO during his leg infection I have been adamently refusing it. The only other drug they would offer is Gravol. HEEELLLLLOOOOOO ??? That's like a drink of water. As is the Benadryl for his itching. I finally insisted on seeing the Pharmacist who came as soon as she could. Turns out they don't have anything else to use in Paediatrics and want to use a very small dose on him. I agree that he desperately needs something to settle him so they have given him .5ml I.V. and he is finally sleeping. I don't think its necessarily a good sleep but at least his body is resting. I'll watch him and so will the nurses for any signs of disorientation or hallucinations.

He still has assorted pains and much discomfort. Morphine is now running at 3.0ml, concentrated, with boluses throughout the day as needed.

He had a portable abdominal Ultrasound to rule out any infections there. He has not had a fever in 2 days so it isn't likely they'll find anything. Although the CT Scan showed Sinusitis. Dr.s from Infectious Disease were here today to check him out regarding this Sinus Infection and we'll see if we need to change his antibiotics at all.

I am emotionally drained. And yet, I can't be drained yet, can I? I need a reserve for awhile yet. The Marontate/Hills are stopping here on their way to Windsor tomorrow. God willing, I'll get out for a break with Lisa and Colin will sit in with Caedan. I think that will, perhaps fill my emotional cup a bit.

M.

Monday, March 25, 2002 at 03:11 PM (CST)

Day 11

WBC - 0.2
Hgb - 100
Plt - 44

These counts are much better than yesterday. His Plts were less than 20 and his hgb was only 68 so he needed a transfusion of platelets and whole blood. We will expect this for a while. Alternate days of transfusions and then a temporary rise in plts and hgb.

Please feel free to visit your local blood bank when you have a chance. Caedan is living proof of the need for blood... Everywhere.

I would say that today is his worst day so far. He's had a fever of over 38C for 5 days pretty much steady. He has tested positive for infection and is on Vencomycin, Pipercillon and Tobramycin for right now. He is very congested and coughing. The extra mucous could be from the mucocitis but we want to rule out any other infections. He had a portable chest X-ray today and will have a CT scan later today.

His body is covered in an ugly rash that Dr. Saunders isn't convinced is the GVHD yet. It looks like hundreds of tiny red pinpricks (No, Tina, I didn't count them! hee hee)all over. Could be a medication reaction, aggravated by the fever or something else. Dermatology is going to come in and have a look, as well.

He's mostly sleeping today which I know is good for him and his recovery, but is still heart-breaking to see.

Scott was here this weekend and I snuck home to Cali. Late Friday night until mid afternoon Sunday. No one knew and I just sat and played with her. No housework (thanks to Amanda and Janet), no cooking (thanks to so many of you), and almost no laundry! Just puzzles and colouring and reading and snuggling. It was decadent. (speaking of decadent, Lizzie, I seem to have run out of chocolate... rosebuds and ABC and PB things and Almond things, and... Might send Scott in to see you this week! It is Easter Time, after all!)

Just found out that we're going to switch from Vencomycin to Cloxocillon. A little less fierce on his kidneys. Also, his liver is showing some signs that its not happy so we're watching that.

I'll try to update tomorrow if we have any news or Wednesday.

M.

Friday, March 22, 2002 at 11:25 AM (CST)

Day 8

A little lesson on Blood Cells for you.

WBC - White Blood Cells are the ones that fight infection and provide protection (immunity) again diseases. The total WBC count includes polys (neutrophils), lymphocytes, monocytes, and a couple of others that I can't remember!

A normal WBC count would be 4.5-11.0

Polys are fighter white blood cells that help prevent bacterial and fungal infections.

A normal Poly count would be 1.5 - 7.8
When the WBC count is quite low, it is impossible to break them down into Polys, etc. so we often don't know what, if any his Poly count is.

(Plt) Platelets are blood cells that help clot blood to stop bleeding.

Normal Plt count: 150-400
When this dips down lower than approximately 20, then Caedan needs a plt transfusion.

(Hgb) Hemoglobin is a measure of the number of red blood cells that carry oxygen.

Normal Hgb count would be 120-140
When this goes down lower than around 75 or if its close to this but he has other symptoms, then he needs a blood transfusion.

Here are Caedan's counts today:
WBC 0.2
Plt 63
Hbg 82

Caedan has a nasty headache when he tries to stand up (for Physio) so perhaps he'll get a blood transfusion.

This wicked cough continues to get the best of him. It hurts his throat so much to cough but it seems we just have to wait for the cough to dissipate itself. His morphine was increased again today. Here's a description for our medical friends:

Yesterday he got 18mg in 50cc of Saline running at 3.5cc/hr.
Right now he has 36mg in 50cc of Saline but its running at 2.2/hr. So its more concentrated now in hopes that it will be more effective.

No school today. P.A. day. Ruth from Music Therapy came today, and Caedan really enjoyed that.

It's a sunny day here in Toronto but WAY COLD!

M.

Wednesday, March 20, 2002 at 11:31 AM (CST)

Rain is a completely different element depending on whether you are walking in it or not.

I have never had any use for umbrellas. I don’t like them. They are cumbersome and annoying. This being the case if I’m carrying one myself, or the person next to me is! When it’s the slightest bit windy, they swing inside out or pull frantically to escape. When it’s pouring out and you manage to cover yourself in the flight to your car, you can’t help getting soaked anyway as you collapse and store the darn thing in the seat beside you. Or, when you get home and it’s dripping wet, you have to find a suitable spot for it to dry. The front porch? No, it just blows away. The foyer? Very impractical. The bathtub? Ya, right and then when you mean to go out again, you have to traipse through the house to get it again.

No, the umbrella and I just don’t click. That is, at least, until I am without a car, it’s 12:00 midnight, and I’m walking from the hospital in downtown Toronto to the Ronald McDonald House in the freezing rain. At this point, I would give my first born for an umbrella (just kidding, Caedan). Now I take back all the nasty things I’ve said about them and wish only to have a wet, cumbersome, and windswept one in my hand!

But alas, I arrive safe and sound, albeit a bit damp to the R. McD. House and survive the following day of rain, as well. Today, Scott brings my umbrella with him when he visits and I will cherish it with a newfound respect. Move over Gene Kelly and Mary Poppins, I’m going to give this umbrella-thing another try.

Day 6

WBC – 0.1
Plts – 46
Hgb - 90

Caedan slept fine last night. His morphine infusion was raised to 3.0ml last night and that seems to have helped the sores in his mouth. He is still coughing a bit which causes quite a bit of discomfort in his throat. The morphine, as expected, is making him sleepy. He’s resting right now while I type away here in his room.

Today’s school session was cut short due to his sleepiness and we haven’t done any Physio Exercises yet, but he is diligent about his mouth rinses, so that’s good.

Scott has a Discovery to do in Milton (Just west of Toronto) this week. He will come into Toronto each evening and commute to Milton in the morning. Works out nicely as he’ll have a bit more visiting time with Caedan.

As for the weekend, we’re both planning to be here, as Caedan will probably need a lot of company as he continues to feel sick.

Hope all is well in your world.
M.

Tuesday, March 19, 2002 at 06:38 PM (CST)

Day 5

Caedan's Mucositis has begun. Another name for the mouth sores only they aren't restricted to just the mouth. He has them in his throat right now and an ugly one in his mouth. They've started him on Morphine and that seems to have helped but it hurts too much to eat and drink.

Caedan had a good sleep (FINALLY) last night and a little nap today. This morning was his first session with the hospital teacher and this afternoon he played Nintendo with the Childlife Specialist.

Tomorrow the Music Therapist is going to drop in and see if he feels like playing some music or whatever.

WBC - 0.1
Plts - 24
Hgb - 93

Caedan got a platelet transfusion today. The first of many, probably. No fever yet, but it's only a matter of time. Perhaps, tonight. When that happens, they will give him some Tylenol, start him on antibiotics and do some extra bloodwork.

It's quite full here so that may explain why we haven't seen any of our London friends who are awaiting BMT. We hope everything is okay with Josh, Keely, and Kent!

Maryla

Sunday, March 17, 2002 at 07:44 PM (CST)

Day 3

Yesterday went just fine. Caedan had Mom and Dad for company, sometimes, both at the same time. Yes, there were times when all three of us were in the same room! Imagine?!

At about 6:30pm I was getting ready to go home to Ronald McDonald House (RMH) to do laundry and just sit in for a quiet night and Scott was going to stay until Caedan went to sleep. The Clinical Nurse approached me and said that they had been offered 4 tickets to see the Lion King for any parents in the unit who might like to go. The catch was, it started at 8:00. I needed to make a decision immediately. Of course, my first thought was, no way! I can't do that while Caedan and Scott sit up here in the hosp. But then I thought that it was time to take one of those Look After Yourself Breaks. So, along with 3 other Mom's up here, I dashed off to see The Lion King. We had jeans and running shoes, no make-up and very Saturday-Afternoon-Hair but we didn't care. We were getting out!

We had Front Row seats. Very cool. How amazing to see the characters so close. We could see their eyes, make-up, facial expressions and yes, the odd muscle or two on the men. Hmmmm. Great seats!

It was a perfect break and will help to keep me refreshed through what we expect to be a tough week.

Caedan slept by himself again last night. When in isolation, the parents cannot sleep in the room. The staff assure us that the kids get used to it, and I hope they're right. I'll stay until he falls asleep and then walk home to RMH at about 11:00, 11:30pm. (It's only 2-1/2 blocks, and don't worry, Karen gave me a personal alarm to carry, just in case!) The plan is that I sleep until 7:30 or so and then head up to the hospital by 8:00 or so. Unfortunately, this morning, Caedan woke up at 4:00am and couldn't get back to sleep. By 6:30 he was so lonely he asked the nurse to call us. Scott came up while I got some much-needed sleep.

Today, I've talked to Caedan about how I'm going to need my sleep and if I stay as late as he needs me to, I won't be able to rush up here at the crack of dawn. I think he understands. We'll see.

The RMH is very nice. The room is like a hotel room w/ two double beds and a bathroom. There is a laundry room on each floor (3 floors)and a huge dining area with a full kitchen for each floor. Very home-like. There's a t.v. and vcr in each room although we're hardly ever there, it's nice to have. The cost is $20.00/day but the Canadian Cancer Society is helping with that cost. (Thanks again Daniel, for shaving your head last summer for CCS fundraising!)

Caedan remains fever-free for now, but it's only a matter of time before the chemo and radiation kick in and he gets pretty sick. But we're not worrying about that, right? Taking it one day at a time!

M.

Friday, March 15, 2002 at 02:48 PM (CST)

It's nearly 4:00 here (EST)and I wanted to get in an update before some of you leave work for the w/end. I know there are some who check in more from work than home so here's hoping I caught you!

Caedan's BMT went without a hitch. Scott had his marrow taken at about 8:00 and was back in his room by 10:00. I ran over to check on him (hospitals are only 1/2 block apart)and he was feeling fine. Making the nurses laugh and hounding the T.V. people to get the T.V hooked up so he could watch the College basketball playoff!

I then came back to Sick Kids Hosp. to find Caedan coping very well. He had his very thorough disinfectant bath and came over to his Isolation room at about 2:30pm. The marrow came from the blood bank at about 4:00. Scott gave about 500mls but then the blood bank "spun it off" and came up with 100mls of perfect marrow for Caedan. The procedure is not an operation. The marrow went into his I.V. line just like a blood transfusion. It took about 2 hours and Caedan had no adverse reaction. Even though Scott's blood type is different than Caedan's. Blood pressure never went up significantly, all was well. Scott was discharged at about 5:00 and came over... slowly... He could walk and sit, but forget about bending to tie his shoes! We stayed with Caedan until he fell asleep at about 11:00. Then, against all my mother instincts, I left him alone in the hospital while we went to RMcD. House to sleep. I dreamt of him all night. I kept dreaming that the nurse was phoning me and telling me to come to the hosp. right now! Everytime I awoke, I looked over at Scott who was sleeping in his own bed for more comfort and he was just resting away. Sleeping soundly, not a care in the world! Ah, fatherhood! Of course, I'm kidding. He had a very tough day and I'm amazed he lasted until 11:30 before collapsing.

I was up and back here as early as I could drag my tired self out of bed and into the shower. Caedan said he had a tough night but the nurse said he slept well. I think he was just restless because he knew he was sleeping by himself. Hopefully as days go by, he'll get more used to it all.

I haven't yet mentioned my small breakdown yesterday. I don't have them often, as you well know, but when I do, they come quite suddenly and strike whomever is closest. Mary Jo at CHWO knows about this Mama Bear and her son in pain!

Yesterday was going along like it was supposed to and the staff kept telling me it really wasn't a huge process. One even called it "anti-climatic". Now, I think she was talking about the physical process in that it really is just a transfusion of such. But the emotional impact caught me completely off guard. I got very very upset about something very small, but it was clearly because of what was happening to Caedan, what has happened to Caedan and what will still happen. I got some tender loving care from the Unit Clerk after that and pulled myself back together quite soon.

Now, I'm not saying I shouldn't have got upset. Don't worry, I know enough about this experience to never deny myself some mourning. I just thought I'd let you know everything that happened yesterday... All the emotions!

Today we're just hanging out. It's nice having Scott here to spell me off at times. It was tough being here all week 24hours a day without relief. Who knows, I may have to go shopping!!!

Okay, this has taken me 25 minutes to write with lots of interruptions so maybe you've all left work! Have a good weekend.

M.

Tuesday, March 12, 2002 at 08:34 PM (CST)

Not a bad day today.

Caedan decided that some ice cream was in order so we headed down "Main Street" (the main corridor in the hosp.) to the Ice Cream stand and bought a cone. Then he wanted another, so we got another and a frozen yogurt smoothie. Some went into the freezer for later, but it was nice to see him eat. Once he goes into isolation (Thurs.) he will be on a special diet for 6 months. This means no food prepared outside the home. No fast food. No McDonalds for 6 mts. Imagine! No outside hand-scooped ice cream, no fresh fruit or vegetables. The fresh fruit and veggies are at too much risk of containing bacteria that he just won't have the resistance to that we do. There are some other details that I'll describe as they come up. But in the meantime, I'm willing to load him up with all the junk food he may wish between now and Thursday afternoon.

Caedan was quite tired today and yesterday from the radiation but not exactly sleepy. So he doesn't feel like doing anything, but can't nap away the day either. BORING!

His last two radiation treatments are tomorrow. One at 9:30am and one at 3:30pm. The staff there are really special people who really know how to care for children. Very refreshing after our experiences at CHWO and the bone scan and MRI staff!

I'm going to turn the T.V. off now so Caedan will allow himself to sleep. It's early mornings here.

Being here 24 hours a day is starting to take it's toll on me. If Scott arrives early enough tomorrow evening, I may slip out for a couple of hours. I think I could use it.

Thanks for all the great messages.

M.

Sunday, March 10, 2002 at 08:32 PM (CST)

It's nearly bedtime here. Caedan has an early start to his day tomorrow. At about 8:30 we go to the "sister" hospital, Princess Margaret Hosp. (through a tunnel) where Caedan has his Total Body Irradiation. He gets it twice a day for 3 days then it will be time for transplant.

The weekend here in Toronto went smoothly with Scott and Caedan holding down the fort. With pee breaks every 1 hour or 1.5 hours, there's not much room for a good rest. Caedan's appetite is decreasing as was expected so he will probably start the nutrition supplement in his I.V. tomorrow. He had this TPN in London so it's not new.

I drove home to London late Friday night and spent a very quick 1.5 days with Cali only to leave at 2:00 today. I know you're all wondering how things are with Cali but I just can't talk about it right now. It was so much more difficult than I thought seeing her and then leaving her knowing I won't be back until Good Friday. I've never wished I could be in two places at once more than right now.

She spends her day with Janet tomorrow, then daycare on Tues. On Wednesday through Thursday she's with the Sandersons for a sleepover. Friday is Daycare, I think. God only knows what this little girl is thinking. Okay, that's enough for now.

Caedan has just fallen asleep beside me so I think I will take that as a sign that it's time for me to settle in, too.

Thanks Brenda and Debbie for the books! I won't start reading tonight or I'll never get to bed!

Thanks Charlotte for the package for Caedan. I forgot it on the table but I'll have Scott bring it up on Wednesday.

Lori, the Garfield Comic book was a smash!

My computer wasn't ready when I went home so I still won't be accessing my Rogers.com email account (at least until I figure out how to from here) so keep sending emaills to the hotmail.com address. But, I must decline any "forwarded" or three times forwarded and attached jokes or stories right now; this 'ole laptop is just too slow for that sort of thing. Thanks anyway!

Okay,
nighty night,
m.

Thursday, March 07, 2002 at 08:57 PM (CST)

FINALLY ! I am able to get on-line. First I had to find a computer then I had to work on getting the hosp. password and now we're set. I will be able to use the laptop in the next day or so, but for now I'm dependent upon the hospital system.

We are getting settled in. Caedan is feeling good and had his first dose of chemo (one hour) today. It's a very powerful dose of cyclophosphamide and after four days of the stuff, he'll probably start to feel the effects. So far (KOW - Knock on Wood), he has not been bothered by nausea.

Hair Update: Still here.

Caedan says the food here is a ten on a scale from 1 - 10. I hope he still feels that way after 3 weeks from now!

We are very excited tonight to have a VERY familiar face here. Krista, who was once a student nurse in London, is now a full-fledged nurse and our's for tonight. YAY! It's like having a bit of 7West right here with us. (Of course, it's strange to see her without Adelaide nearby).

Caedan and Scott went for a consult with Radiation today. Got the whole scoop on that. Monday, he starts. He'll get radiation twice a day for 3 days. Each session is about 4-1/2 minutes per side. Front and Back.

We had some wonderful visitors today. Tami Watchurst and Alexander and Jonathon came here after their clinic visit on the other wing. You all know Tami from the guestbook, but I've known her for almost 3 years now, (is that right, Tami?)and yet we've never met. We've been E-Mail buddies since meeting on a group for parents of children with A.L.L. Caedan was shocked at how well we got along for our first meeting. Thought we got along like Dina and I and as most of you know, Dina couldn't be closer if she were a sister so that's pretty amazing. Alexander is the same age as Caedan and had created a package of fabulous goodies for Caedan. Videos, games, crafts, the works! We've been having a great time all afternoon!

Scott is back in London until tomorrow evening when he returns for the w/end. I will drive to London when he gets here. I'll be home until Sunday afternoon. I CAN'T wait to see Cali!

More soon,
Love M.

Monday, March 04, 2002 at 09:02 PM (CST)

Whoooo - Wheeeee,
That was a tough one. Being without a computer since Friday! Okay, I'm using the Laptop at home and things are rolling again. Our comp. is getting an overhaul as we speak and should be as good as new by the weekend. I wish I could be!

For anyone sending me emails at our rogers.com account, I haven't figured out how to access it from a different computer so I apologize for not responding. I am including my hotmail.com account address at the bottom of this webpage so you can send me e-mails for the next few months and I'll get them at the hosp. on the laptop or at home when I'm here so fear not.

Caedan had an awesome weekend. Kept very busy with friends and with us. He had a bit of a temp. today and was feeling kind of yucky. Fortunately, the temp. never went past 38C. so we have been able to stay home so far. We'll see what the night brings.

His BMA and LP went just fine on Friday. He was a real trooper as always with no complaints! The marrow is still in remission so we are breathing easier.

Cali is definitely on the mend. Feeling so much better that she's not ready to sleep right now at 10:05 pm and working herself up into a coughing fit. Oh man!

I'd better go.

More tomorrow.
We leave on the train on Wed. morning.

goldribbon8@hotmail.com

Maryla

Wednesday, February 27, 2002 at 08:21 PM (CST)

I've had enough of today. It started at 5:00am with Cali crying and throwing up. Her temp. was high and she was very uncomfortable. With Scott downstairs, Caedan in our bed and Cali's crib a mess, she and I moved into Caedan's bed. That is until she threw up in there, too. Then I figured it must be time to move down to the livingroom. That was about 6:15am. The only thing that got me moving was knowing that Janet was coming at 11am to help. Scott went to work and returned at noon to go back to bed for the afternoon. Cali brightened up for about an hour in the morning, but otherwise felt pretty yucky. She had a temp. 38.5 Celcius and threw up again tonight but is at least asleep now for a bit, we hope.

Caedan on the otherhand is feeling great (quick, knock on some wood). He has an appetite and strength. His P.T. came today and was impressed with his mobility. He even started walking around the house without a walker. Slowly, but it's coming! The incisions are MUCH better and he didn't need any codeine today. Thank Goodness.

The van is now fixed and I made my Costco run this afternoon so I'm feeling on schedule a bit. I'm going to bed NOW, at 9:30pm which most of you know is extraordinary for me, but I have a feeling little Miss will be awake when the last dose of Tylenol wears off in 4 hours.

Oh, and one last thing. I think in a previous message I said that Scott would "give" his Bone Marrow next week. That's wrong.
March 6th - Caedan is admitted to Sick Kids Hosp.

March 7th - Scott has consultation with doctors about his transplant.

March 7th - Caedan begins his radiation and chemotherapy.

March 13th - Caedan completes chemotherapy.

March 14th Morning - Scott "gives" Bone Marrow.

March 14th Afternoon - Caedan gets Bone Marrow Transplant.

March 15th - The hard part begins.

M.

Tuesday, February 26, 2002 at 08:09 PM (CST)

Caedan is very sore today. He has three incisions in total and he is most upset. We had to go to the hosp. to have the dressing changed (and a look at the sites) and it was such an ordeal to get him up there. Into the walker to get him off the porch, then into the wheelchair to get him to the van. Then into the van... very slowly. Seatbelt on. Ouch! that hurts the neck incision. Every bump on the road hurt, too. Anyway, he was so worn out just from the transport to the hosp. that after the dressing change he had 30mg. of codeine and slept for 2.5 hours. Fortunately, the dose is now increased to 45mg. for tonight to help him sleep soundly. He's sleeping in my bed again and poor Scott is hacking away on the sofabed downstairs. Actually, right now he's on the floor in Cali's room. She's had a bit of a temp. all day and tonight was out of sorts so she "needed Daddy to be 'wif me" tonight. I'm going to bed right after this as I'm tired out again. I guess stress can make you tired, eh?

Tomorrow, the Physiotherapist comes at 10am to work on those leg muscles. Janet is coming around 11am to help me out with both kids and I'll try and get the van in for the ABS system which is blinking it's warning light at me. Oh joy.

Thursday Ursula from St. Catharines comes for a visit. It's been almost a year since I've seen her. I can't wait.

On Friday, Dina is coming. She'll come up to the hosp. as Caedan has a Lumbar Puncture and Bone Marrow Aspiration that day. This is to make sure the spinal fluid is still clear and that he is still in remission.

Hope to get some cooking and organizing done on the w/end. I'd rather have re-heated homemade meals than hosp. food any day!

Next week we plan to keep Monday and Tuesday just family days.

Talk to you soon,
M.

Monday, February 25, 2002 at 09:02 PM (CST)

Hello All,
I'm just writing a note to say I'm too tired to write an update! Long day at the hosp. today. There for 7:30am (middle of the night, to me) and surgery at 9:00 to 11:00am. Caedan had his Port removed and his Hickman inserted. He's very sore and uncomfortable with the three incisions. We didn't get home until after 6pm.

Scott is very sick with some kind of flu bug. So bad that I have him sleeping downstairs. Poor thing. Actually, he's lucky, it's quiet and dark.

Okay, I'm going to join Caedan in my bed right now as we're both pooched.

Hope to write more tomorrow.
m.

Thursday February 21, 2002 7:48 AM CST

I couldn't possibly write an update last night as we all went to bed as soon as Cali was asleep. I'm not saying we went to sleep, though. Our minds were churning. Caedan stayed home yesterday with Janet and Karen Schindler kept Cali. Scott and I took the train to Toronto and I'm so glad we did. Much less stressful.

The consultation with Sick Kids was not as startling as we feared. Partly because we have talked to so many people who have been there and partly because we have shared BMT experiences with a few of our friends. But mostly because our friend Lori Sashagyi brought over on Sunday the exact same information the hospital provides. Reading through that and the reading we have done from other resource info. kept us from being too shocked. But don't get me wrong. It was a lot of very bad and scary news. Dr. Saunders told us some terrifying odds. He believes that transplant is the only chance for Caedan and that his leukemia cells have become very resistant to chemotherapy. We must hope and pray that the incredible amount of chemo and radiation he gets in the first week at Sick Kids will be enough to destroy those resistant cells.

He's admitted on March 6th and he will start chemo and radiation almost immediately. He probably won't start to feel the real effects of the chemo until about the 15th or 16th. Then he'll probably have some yucky side effects of the chemo.

Scott will have his donated marrow removed on Mar. 7th and Caedan will get it on the 14th. I don't think I'll list all the possible complications right now. I'll just let you know if/when they happen at the time.

We came away yesterday reminded what a horrendous disease this is. Back in Aug. 1995 I looked a Leukemia to be a serious but recoverable disease. I now know that is can be fatal. On August 2, 1995 I began to look at life through a much more focused lens. A night sky rich with stars can hold my attention much longer than any episode of E.R. Watching Caedan sleep peacefully can consume my spirit and calm my soul. And when someone remarks on the vast support system of friends and family that show in places like this webpage, I don't just nod and agree. I feel a lift in my heart and think to myself, 'you are so right'. I am so lucky. Lucky to have all this, but also lucky to have it inside where it fills me with confidence and strength. It's that confidence and strength that I'll be needing to get through this experience. And it's what I'll need to help guide Caedan through it, too.

M.

Tuesday February 19, 2002 2:09 PM CST

The weekend progressed nicely. Lots of laughs and fun and little thought of hospital visits.

Today Caedan went to the clinic for bloodwork, and a check up. Scott took him as I spent the better part of the day with my dad at the London Cardiac Institute getting some on-going heart problems looked after. Dad leaves tonight and I'm sure he'll be happy to be back in his quiet home! Life is a bit busy here right now.

I have justheard back from Scott that Caedan's counts are low.

WBC 1.4
Hemoglobin 69
Platelets 42
neutrophils 0.3

With the Hgb being well under 75 he's getting a transfusion this afternoon. 4:00pm until 7:00pm. Ugh. He gets an ultrasound first to make sure all is well in the infected leg.

With those neuts so low, he'll be a good risk of infection so we'll have to stay out of busy places and watch him for fevers. If he gets one, we'll be right back in the hospital because with low counts like that it will probably mean an infection of some kind and we DON'T want that before transplant!

Scott and I are going to Sick Kids tomorrow. We have convinced the docs that with Caedan being in a wheelchair and all, it will be too hard on him to drag him to Toronto, especially now with low counts. We'll have a whole clearer picture of what to expect from the BMT in March. I imagine it will be a very long day and we'll be wiped out emotionally.

I'll try to update on Thursday with any further information.

Keep thinking high neutrophil thoughts for us!

M.

Friday February 15, 2002 9:12 PM CST

Yikes! So many hits to the webpage and all of you are looking for an update. I've been lax these last few days but only because I've been spending so much time enjoying life at home again.

Caedan's first night home was great. He's hooked up to a small I.V. pump that continues to give him his antibiotic to make sure we get rid of that nasty leg infection. The home care nurse comes in daily to check it.

Yesterday was a memorable Valentine's Day. Caedan and I went to his school and surprised his class with a quick visit. Mrs. Moynihan the Principal and Mrs. Vitols, the V.P. greeted Caedan like royalty and because he is in a wheelchair, summoned up the ramp for the stairs in the front hall. His classmates were just wonderful towards him. Asking questions and talking all at once. Travelling down the hallway he was able to say hi to his friends in the other Grade 3 class and anyone else who passed by. It really was such a special time. Later that day, Mrs. Inwood dropped off his Valentines from the class and some fun "work" from school to keep his mind off things.

That afternoon we went to the Out-Pt. clinic for bloodwork (his counts are dropping slowly but that's to be expected after the chemo last weekend) and a dental appointment to get his loose tooth pulled. (Can't have loose teeth or cavities before transplant).

Speaking of which, we have our appointment to meet with the staff at Sick Kids Hosp. on Wednesday. We have to be in Toronto at 9:45 for a day of information. Terrifying, I think.

Okay, it's time for some relaxation now that the kiddies are in bed.

More on the weekend,
M.

Wednesday February 13, 2002 3:02 PM CST

We're Home!!!

Monday February 11, 2002 8:46 PM CST

Finally got the Bone Marrow Transplant date!

March 6th is his admission date at Toronto Hospital for Sick Children (aka Sick Kids Hosp.).

I know we've been waiting and waiting for this date but now that we know it, I don't mind telling you that I'm terrified. I wish we could just fast forward to when it's all done. I know that we really can't afford to wait any longer, but I have never feared anything more. But enough of all that. There's no use worrying too much right now. Hopefully, Scott and I will get our consultation app't with the doctor in Toronto soon. Then we'll have a much better understanding of what's up.

Another major development is that it seems that they are going to let Caedan go home. His chemo is done, his I.V. antibiotic is almost done and can be finished with help from Home Care, and he's feeling much better. He'll continue to have Physiotherapy at home and I'll get some help from Occupational Therapy with things like using the walker on the stairs and getting in and out of the tub. I hesitated even adding this news on here because I won't believe it until we're actually at home. Things can change so quickly up here. Dr. Leaker said that now would be a good time to go home while he's feeling good and not neutropenic (with a fever). That way we have a bit of time at home before going to Toronto for 2 months.

With any luck I'll be able to write you an update tomorrow from home.

Thanks for all the jokes and notes on the guestbook. Lots of fun!
M.

Friday February 8, 2002 11:00 AM CST

Great morning so far. Caedan has just been having a wild time with Melissa from Childlife. They always adapt a typical game into their own format which usually results in lots of laughter and screeching!

He's sitting up and going for walks in the wheelchair. Just can't get any weight on his legs. That will come with Physiotherapy and time.

Be sure and tune into Q97.5 FM here in London today until Sunday because they're having the Q-Radiothon for the Children's Hosp. of Western Ontario (our hospital). I'll be on Saturday afternoon at 3:30 or so to tell our story and hopefully help raise money for the hosp. So listen in!

M.

Tuesday February 5, 2002 5:34 PM CST

Wow, was that fun!
I just logged onto the webpage and it was 10,000 hits to the site!

How about that? We've been at this webpage since December 2000 and that's a lot of visits.

Thanks guys,
Maryla
p.s. Oh, Caedan got into the wheelchair himself today and is on his way to getting a bit of an appetite. Here's hoping.
Had a surprise visit from Connor from school tonight and that made him smile brightly!

Monday February 4, 2002 2:35 PM CST

Shh, Caedan's sleeping.
He just fell asleep after getting a dose of gravol. The pain in his stomach is still grabbing at him and causing a lot of discomfort and pain. It's not as frequent but it still happens. The docs don't seem to know what's causing it exactly. Could be the antibiotics. It isn't nausea, but gravol seems to settle him enough to relax.

He had a "biopsy" done on his leg this morning. We went down to Ultrasound and the radiologist, Dr. Fortier, found the "pocket" of fluid or abscess. Then Dr. C. sedated him and Dr. F. inserted a needle and drew out the fluid. They'll send it to the lab to be checked but we're hoping that with that pressure relieved from his leg, he'll have more mobility and less pain. Here, here!

He sat up on the side of his bed today and then moved into a chair right beside it putting a little bit of weight on his "good" leg. He couldn't get comfortable in the chair so he got back into bed, but that movement itself was very encouraging.

Caedan had visitors on Friday and on the w/end and I think it did him a lot of good. As long as you call first, a visit would definitely break up the monotony up here!

We have been told that the doctor at Sick Kids Hosp. in Toronto will have a Transplant date for us sometime this week. Can you believe it?

Keep smiling,
M.

Wednesday January 30, 2002 5:31 PM CST

Caedan is better every day.

The pain in his leg is almost non-existent but there is still much tenderness and stiffness from being immobile for SO long.

He has a nasty tummy ache that keeps haunting him, though.

He got up in a wheelchair yesterday and went down to the Childlife room today in his bed.

He's playing more board games which is a good sign that his spirits are up!

I'm afraid he's going to miss Auntie Stacey as much as I am when she leaves early Friday morning. We've become VERY used to her company.

Happy Birthday Dr. Suess (on Saturday!)
M.

Friday January 25, 2002 8:57 PM CST

More Good News !

Caedan is in remission !

Can you believe it? My, how far we've come in just 4 days.

Dr. Cairney decided that since his counts were rising so well that there was a possibility that he could be in remission already. She did the Bone Marrow Aspiration this morning and by afternoon the results came back as no more blasts.

This means that the blasts (cancer cells) are either gone or too few in number to count in his marrow. Now, we just have to keep him in remission until his Bone Marrow Transplant. He will need some more of the Ara-C chemotherapy he had at the beginning of the month but only one treatment as opposed to the two he had. He'll be quite sick again (still) but we can't let those nasty cells back in!

Once the infections/bacteria are gone, and he's still in remission, we can go to Toronto for his BMT. Could be a matter of a couple of months instead of many.

We don't expect he'll be able to come home in the meantime but will hopefully feel well enough to get out of bed again and maybe even... catch up on schoolwork! Ack, did I say that?

I'm sleeping at home tonight and looking forward to waking in my own bed tomorrow morning.

M.

Thursday January 24, 2002 10:16 PM CST

I'm writing to you tonight from the hospital on a laptop that my dear friend Dahlia managed to rent for me free of charge and set up the internet access. Karen Schindler helped with delivery and here I am!

Caedan is sleeping right now. He has rather restless sleeps but at least its sleep. The inflamation in his calf has reduced dramatically and today there seems to be more pain in his foot than his calf. He is on LARGE doses of morphine to keep the pain in control but it does seem to be working. Of course, with the morphine and antibiotics to kill the dreadful infection in his leg, come nasty side effects. Stomach cramps, messed up bowels, NO appetite (he hasn't eaten in 2 weeks), and night sweats. He is getting nourishment with TPN which is fed through his IV. The night sweats are awful. Last night between 11:00pm and 9:00am I changed his bed 5 times. Each time the sheets were soaked through to the blanket on top. His P.J.s would have to be changed and pillow. Sometimes he's wake up freezing because the sweat had cooled off on his covers. But despite that, it was a pretty good night. Everything's relative. He is able to squeeze his pain pump when he needs to and give himself a dose of morphine so that way he can stay more comfortable when he is awakened through the night.

Today he did a craft with Lisa H. from Childlife and dressed up with a clown costume from the Humour Cart. He still can't get out of bed, but things are improving. I'm hoping that by next week he will even feel up to some visitors.

I rented three Mr. Bean Videotapes tonight for us to watch this weekend. The hospital has one video that we've watched several times today and it has made us both laugh!

It's 11:30 now so I'd best get ready for bed. After a long night up here it's hard to get going bright-eyed and bushy tailed when the doctors come by at dawn! (okay maybe it just feels like dawn!)

M.

Monday January 21, 2002 6:00 PM CST

MARVELOUS NEWS ! ! ! THE BEST NEWS ! ! !

UNBELIEVABLY SENSATIONAL NEWS ! ! !

Scott is a match! Scott is going to be Caedan's donor! He is a 5/6 match!

Can you believe it????
We are still in a state of shock.

The odds of this happening are so remote, I can't even begin to think about it! Scott is so happy he's floating. We all are.

Dr. Cairney came in this morning to tell me. Caedan was in incredible pain and as thrilled as I was with the news, I don't think I quite grasped it at first. I called Scott and asked him to come up for lunch. When he got there Caedan said, "Dad, have you ever saved someone's life? Or do you think you ever will?" and Scott said, "no, son, I don't know if I ever will." and Caedan said, " well, you're going to save my life, Dad. You're going to be my donor!"

This is truly the best thing that could ever happen to Scott. He has felt so helpless through all this and now he won't be.

We feared the search for an Unrelated Donor would be months and now that worry is over. ~ But please, please still consider joining the Bone Marrow Registry. There are kids in the hospital with us right now that are waiting for a donor match.

The pain that Caedan is in today is attributed to White Blood Cells finally recovering. Now that they are recovering, they are heading straight for the site of infection (his right calf) and engaging in a nasty battle of good and evil. During this battle, the leg becomes inflamed, burning hot and incredibly painful. His dose of morphine is very high and still doesn't seem to keep him comfortable so they have given him a PCA pump (patient controlled analgesic). He will be able to give himself doses of morphine with a limit to how much he gets per hour. Plus he will continue to get the morphine continually through his I.V. infusion. He will finally have some control over what's happening to him and that is SO important right now. Not to mention some proper pain control.

We still have a battle ahead of us getting Caedan well enough to go to Transplant, but at least we have some ammunition.

The prayers are being heard. Please continue.

Now, go get yourself a kleenex and smile!

Friday January 18, 2002 11:25 PM EST

How is it Friday already? The days at the hospital drag by but the weeks seem to fly by. Does that make sense?

Caedan is more comfortable today. There is still significant pain and discomfort but we are getting closer to a solution. I think a few more days should get the morphine adjustment in tune with the pain.

He had an ultrasound of his knee and calf yesterday to see if the infection has spread to the joints. Apparently it wasn't clear enough so they want an MRI done, as well. That will be on Monday or Tuesday.

Today he had a restful day and even had a long nap in the afternoon. One problem he's had is lack of sleep. He has been so uncomfortable that he's not able to sleep well at night or during the day. Plus, there are a lot of interruptions in his days and nights. Scott is there tonight and he fell asleep at 10:30 so that's good.

I think that's all for now. If I think of anything else, I'll write tomorrow.

M.

Tuesday January 15, 2002 ~ 8:01pm EST

The pain is MUCH better today. I can't believe the difference in Caedan now that he is not hurting so much. He's on a Morphine Infusion and can have boluses on demand for times when it gets really bad. Like the bone scans and things.

Had another trip down to Nuclear Medicine for further Bone Scans. And then went down in the afternoon for an Echocardiogram. Seems the infection MAY have settled in one of his heart valves so the Cardiologists are going to investigate further.

Caedan will have yet another bone scan tomorrow to verify exactly what kind of infection may be sitting in his leg.

Actually got a few hours of sleep last night.

Hopefully, the pain control will get better and better.

Thanks so much for all your words of support.

M.

Monday January 14, 2002 ~ 8:35pm EST.

Today was a day of scans.
The pain in Caedan's leg has not decreased. The swelling has come down a bit and allows him a bit more movement, but the pain is still excrutiating. Yesterday he had a portable X-ray of his chest as his breathing is extremely shallow and quick. It was a bit shady so they wanted to redo it.

This morning at 9:45am we went down to Radiology (and even though he was able to remain on his bed, the movement and transfer is very difficult for him) and had more chest X-rays, and X-rays of his right leg. Then we went to Nuclear Medicine where they inserted a dye into his bloodstream and took some preliminary bone scans. We didn't get back into the room until 1:30pm.

The initial bone scan results indicated that further scans were needed. We went down again at 3:45 until 5:30. He was at least sedated this time so the pain was more endurable. The scans show what could be a tissue infection and we'll know more tomorrow.

I'm so fed up with the lack of pain control that I could scream. Actually, have screamed in the van on the way home. FINALLY, the doctor has ordered much higher doses of morphine to get the pain in control. I can't understand why this wasn't done on Friday but I have been so exhausted and overwhelmed that I don't know if I'm pushing the medical staff hard enough. I'm getting there, though. I really don't know if they even understand the pain he's in...

Thank you so much for the food that has been coming in. The freezer is filling up and I'm able to bring something in from home to eat while I'm up there which is a big help. And at home I never have to worry about what to eat for supper.

I'll write more when I can.
M.

Saturday, January 12, 2002 at 01:42 PM (CST)

Hello my friends,
Things are not any better today, I'm afraid. Caedan's right leg pain is enormous. The morphine doesn't do a thing! We now understand he has a blood infection which is very serious but common in this situation. Meaning in kids who have NO white blood cells to fight off infections. They are treating him with fierce antibiotics and hopefully that will make a difference soon. He has very little energy. Not even enough to talk and you know that's a rare thing in Caedan. (and his mother, for that matter!)

My computer is back up and running (it was a virus...or four) and I feel like I have my link to information, too. Please feel free to send any emails directly to us at the email address below but don't stop signing the guestbook, either. As you can see, people sign in again and again and it's always nice to know they're reading the updates. The first thing I did when I got the computer back up was to check the guestbook. What wonderful notes. I will print them off and show Caedan. I don't know about the rest of you, but I'm very curious to see Mr. "A's" haircut! ha ha.

I'm going to do the night shift tonight and Scott will be home with Cali. Caedan really just wants Mommy right now and that's okay. As long as I have enough coffee... sigh.

I hope to have more regular updates now that the computer is back up.

love to all,
m.

Wednesday, January 09, 2002 at 10:25 PM (CST)

Hi there,
Just a quick note as I'm on a computer at the hospital and I don't want to leave Caedan for long.

Caedan finished the chemo on Monday but it is really hitting him hard now. I don't know how else to describe it but as really, really sick. He has very little strength (even needs help rolling over) and hasn't been able to eat. He has pain all over. Leg pain and stomach cramps and earaches. He's getting medicine to help him get comfortable but tonight it doesn't seem to be helping much. I'm just hoping he feels better tomorrow.

Thank you for all your prayers. I know they will work. Thank you for you wonderful notes in the guestbook and for the food that has already started flowing in.

One friend went to the Red Cross today and although they gladly took his blood, they explained that they couldn't sign him up for the Bone Marrow Registry just like that. First he has to read and fill out the consent form and then mail it to the address in Hamilton. THEN, the registry will contact him and tell him where to go in town to have a blood sample taken. It will all work out fine, just a few extra steps.

PLEASE consider joining the Bone Marrow Registry.

With love,
m.

Saturday, January 05, 2002 at 08:12 PM (CST)

Caedan's chemo started again today. It will run intermittently until Monday. By then, we anticipate him feeling really rotten. He was feeling good today and played some hardy card games with Carol and Kellie from Windsor.

Janet is doing the overnight shift tonight. I'll go up in the morning.

COMPUTER PROBLEMS !
I think my computer has a gremlin in it, or worse, a virus. As I've never had a virus I'm not sure how it would behave. But frankly, I can't see it being much worse. Please don't look for replies to email from us until I can get the thing in on Monday for repair. As well as updates to this webpage. Sorry!

m.

Wednesday, January 02, 2002 at 03:58 PM (CST)

Caedan was admitted last night because he was bordering on a bit of dehydration. He has been filled with IV hydration and will continue until Saturday when he will start more chemo. I think they're just going to keep him in until then.

Another tough day. The shock has not eased off in the least and the pain is still raw.

m.

Tuesday, January 01, 2002 at 05:02 PM (CST)

Caedan's feeling sick. Sleeping or lying down with total body aches. Hasn't had much to drink today and has a bad headache.

I called the doctor and she said bring him in. I asked Caedan before that if he wanted to go to the hosp. and he said yes.

So, he and I are leaving now and Scott will come up later and do the night shift.

more soon.
m.

Monday, December 31, 2001 at 04:23 PM (CST)

Further progresss in the last few days.

Caedan started more chemo on Saturday. He finished this morning but is pretty wiped out. They let him come home today but if he spikes a fever or doesn't keep hydrated or just seems sick, we'll have to go back in.

The protocol (roadmap for chemotherapies) has a MUCH stronger dose of chemo this time. He is on high dose Cytosine Arabinoside (or ARA-C) for 3 days then off for 4 days then start again on Saturday. He has had this med. in high dose before, but not this high! One serious side effect is the reaction to eyes with this high of a dose. He has to have ointment in his eyes every 3 hours around the clock and his white blood cell and platelets will decrease around the end of this week.

He is glad to be home and mostly napping today.

Everyone is asking how they can get involved in the Bone Marrow Registry. The way I understand it is this: In Canada, you can call the Canadian Blood Services at 1-877-366-6717, ext 6382 or go to the website at www.bloodservices.ca and click on the Join the Bone Marrow Registry link. This will give you information on how easy it is to become part of the unrelated bone marrow registry. The Website even has a link to download the information and consent forms and then you can just mail it in completed with signature.

Scott and I will be tested on Wednesday but chances are we will be more likely to find a closer match from the unrelated BM Registry.

That's all I've got time and energy for right now. Dina arrived today to hold my hand and wipe our tears and make us FOOD!

Thanks so much for all your encouragement and prayers. After sending out the email last Friday I felt so utterly drained but when I woke up the next morning to 20 new messages I felt like all 20 people were in the room with me holding my hand.

I'll try to update again soon,
M.

Friday, December 28, 2001 at 09:15 PM (CST)

I have some very bad news today.

Caedan has come out of remission and has relapsed. When we went into the hospital yesterday for his chemo everything was fine. They did the routine bloodwork and sent us to the in-patient side for admission. A couple of hours later, Dr. Cairney came to tell us that the lab had found some blasts in his blood. That could really only mean a relapse. She did the bone marrow aspiration (BMA - where a needle is inserted in his hip and marrow is removed. This is then tested to find out the percentage of blasts in the marrow. When he went into remission last November it was 4%) and a lumbar puncture today. The BMA showed as much as 80% blasts in the marrow. That’s the bad news. The good news is that the CNS (spinal fluid) is clear so he did not relapse in the Central Nervous System.

This is not a borderline relapse. Much more. He will have to have a Bone Marrow Transplant (BMT). His marrow just can’t seem to fight off the cancer. He was getting extreme amounts of chemotherapy and still the cancer came back. He will need to be in remission again before he can have the BMT. This could take at least 6 weeks of even more aggressive therapy. In the meantime the search is on for a matching Bone Marrow Donor. This part will be tough. Cali is only a 3/6 match. Scott and I will be tested on Wednesday. After that, Pruitt and Scott’s brothers may need to be tested. After that, the likelihood of any other relatives any further removed being a match are slim. It would be more likely that we would find an unrelated match. That’s where the Bone Marrow Registry comes in. Caedan and his specifics will be entered into a database and a search for a match within the registry will begin. As far as I know, this registry is worldwide. I’ll learn a lot more soon, I’m sure.

BMTs are not done in London. We will have to go to Sick Kids Hospital in Toronto but that is some time away. As soon as I learn more about registering to be a Bone Marrow Donor, I will post it on the webpage. In the meantime, please give me some time to understand it myself. I don’t want to give out the wrong information.

Caedan is home on a sort of LOA just for tonight. We’ll go back in tomorrow morning and then he will start his new chemotherapy protocol. When I understand more about the type and length of this protocol I will let you know.

And just to make you smile: Caedan got home tonight at 7:00pm and 30 minutes later he and Scott went skiing at Boler Mountain (our neighbourhood ski hill). How could I say no?

With love,
m.

Wednesday, December 26, 2001 at 05:58 PM (CST)

Quick note to let you know that Caedan goes in tomorrow for his last in-patient chemo stay. He is in from Thursday until Tuesday, January 1st. After this, he'll start Maintenance which still means chemo but less intense as an out-patient every 2 weeks or so. Now, if he gets a fever or gets sick, he'll still be admitted but that's different than going in for chemo. This Maintenance phase has 48 weeks. Just like his Intense phase, if any treatments are postponed, it all just get tacks on at the end. So, when I say 48 weeks, that doesn't necessarily mean 11 months, if you follow me...

Santa was very good to us this year and Caedan has trouble separating himself from his new N64, but I'm sure that will ease off eventually... I hope...

Cali's favourite gifts (today)seem to be the Spot Video and the Spot book she got. Easy to please at this age!

If I don't write again before Monday, Have a Happy New Year and all the best for 2002!

m.

Thursday, December 20, 2001 at 09:36 PM (CST)

Ho Ho Ho...Oh No!
Only 4 days left and, and... And what? So there's only 4 days left? Isn't that good? Aren't we supposed to look forward to Christmas? Anticipate it? Anxiously await its arrival? Sure we are. I know I do. I also know that I'd rather sit back and enjoy these last few days leading up to it than run around searching for "one more gift" and "one more stocking-stuffer". I'd rather snuggle on the couch and watch Charlie Brown Christmas with Caedan and Cali than throw the Christmas videos in, plant them on the floor in front and rush around the kitchen baking goodies that no one but Scott and I will eat! Our life has taken on a whole new meaning which means holidays and stress have too. More than anything, it's slower.

I'm not sure it's any less materialistic than past years, but there's a whole lot more gratitude mixed in there now. There's a lot more giving and a lot more thoughtfulness than ever before. And if we don't have coconut-free Nanaimo bars and my mother's traditional cherry bread on Christmas day, that's okay. Because this year at #67, we are all going to sleep in the same house on Christmas eve and get up together on Christmas day and that's all that really matters to me.

This Holiday Season I wish you and your's happiness and laughter in a HEALTHY, warm home.

M.

Monday, December 17, 2001 at 08:30 PM (CST)

I understand I have been remiss with these journal entries so here's a quick entry.

We are all doing just great. Counting the days till The Big Guy comes to visit and trying our darndest to be nice not naughty.

It appears that Caedan will be admitted on December 27th so he'll be home for Christmas but in for New Year's Eve. We plan to go to Windsor this weekend for a little Christmas visit. We'll spend Christmas here with Scott's Mom and it looks like she'll be spoiling us with another feast.

I hope to finally have some new pictures on the webpage this week so, check back on Friday.

m.

Sunday, December 02, 2001 at 06:34 PM (CST)

Caedan got home a bit later than usual on Saturday (12:30pm) thanks to some very disorganized staff, but the main thing is he's home. He slept most of yesterday and a bit of today. I knew he wasn't well when he got dressed and in the car because he insisted he was okay to go to the CHILDCAN Christmas party and then 1/2 way there he asked to turn around because he was just too tired.

We go to clinic tomorrow for chemo and again on Wednesday. Hopefully he'll feel up to going to school by Thursday.

I think we can be sure that he's not going to get the Chicken Pox this time.

I'm not exactly sure when his next admission will be but I'll let you know when I do.

M.
p.s. Scott and our neighbour, Tim used a Cherry Picker truck and decorated our big spruce tree (about 40 ft. tall) with red Christmas lights. They look sensational. Nine strings and it could have taken a lot more but we'd be blowing fuses all night! Ho ho ho.

Monday, November 26, 2001 at 12:23 PM (CST)

Caedan's next admission is Wednesday. He'll get a Lumbar Puncture and be in until Saturday morning for Chemo.

He's tired today and sometimes I think it's just a "tired" day and sometimes I think it's fourteen months of accumulated chemotherapy. Who knows?!

He still hasn't shown any Chicken Pox but I'm checking daily.

M.

Thursday, November 22, 2001 at 09:08 AM (CST)

Still no sign of chicken pox on Caedan. Cali is feeling much better with a few healing spots.

Our home e-mail address is changed to s.gallagher@rogers.com

It is included on this webpage close to the bottom.
M.

Saturday, November 10, 2001 at 10:19 PM (CST)

Sorry for the late entry; it's been a busy week.

Caedan got out on Tuesday morning. He was kind of upbeat that night but the next morning felt rotten. He had more chemo on Wed. and took it easy the rest of the day. On Thurs. afternoon he went to school and then again on Friday morning.

On Friday Cali broke out in Chicken Pox. We had been suspecting that she had them since Tues. but they became full blown on Friday. Caedan then had to go BACK to the hospital and get the "zig booster". This is an injection (two actually in the muscle of the legs)that should boost his immunity to chicken pox. When he is on chemo his immune system is next to nil. He cannot build up a resistance to chicken pox like most people so he is able to get them again and again and again. The booster will hopefully help him fight off the CP. We'll know in about 2 wks. if he's got them, though!

If he does get the CP he will immediately be admitted for 7-10 days of IV antibiotics as his body will not be able to fight properly and he could get the CP internally which obviously would be very bad.

When he went through treatment before he was exposed to CP and got the ZIG several times and only got the CP once so who knows, he may not get them this time!

Cali is feeling rotten but not itchy yet. I guess that will come soon.

I'm thinking about moving to Alaska.

love,
m.

Saturday, November 03, 2001 at 06:40 PM (CST)

Halloween night was just perfect. Lots of laughs and a LOT of energy. Caedan, Cali and I visited the neighbours on our cul de sac first so Cali could get her fill of trick or treating. Then Caedan carried on with his friends and the dads. Cali and I just sat on the porch eating and giving out treats. Wonderful time. I will post the pictures on the webpage as soon as I get them back.

Caedan is in the middle of this hospital stay. In a ward this time. Don't ask me why I'm paying all this money to our Insurance company just to get in a ward!!!

He's not feeling very well and likes to doze off a lot. Scott is taking the night shift today while I spend some quality time with Cali. Speaking of which, it's Tub Time.

Love,
m.

Monday, October 29, 2001 at 03:49 PM (CST)

Good news!
Caedan will be home for trick or treating!

Dr. Cairney has suggested he go in for bloodwork, examination, etc. on Wednesday morning and then leave. We'll go back in Thursday morning and he'll be directly admitted to start chemo then. It will mean that he won't get home until the following Tuesday (Nov. 6th) but it's worth it.

Caedan is dressing up as a Cheerios Box man and Cali will be a giraffe.

Here's hoping for warm, dry Haunting.

M.

Sunday, October 21, 2001 at 01:39 PM (CDT)

Home now.
Feeling good.
No fever.
Neutrophils at 0.1
Better than nothing.
School tomorrow?
We'll see.
m.

Friday, October 19, 2001 at 07:51 PM (CDT)

Caedan is much better today.
Temp. is much lower and spirits much higher.

We've been doing crafts and reading and he has a good appetite. All the things that are not so when he's in for chemo.

Scott's staying up there tonight. Who knows, maybe Caedan will be out by the end of the weekend.

m.

Wednesday, October 17, 2001 at 07:20 PM (CDT)

Hi Guys,
Caedan has not really improved much. He had a terrible earache this morning so we went to the E.R. this afternoon and got bloodwork done. His neutrophils are NONE !
0.0 to be exact. They are admitting him now and I'm just home with Cali to put her to bed while Scott sits with Caedan. Cali in the ER for 3 hours over the suppertime... Just imagine...

Caedan's wiped out and hurting so I'm hoping they get him upstairs soon and start the codeine for pain. He has a fever so he will probably be in for at least 3 days. We'll see.

More soon,
m.

Sunday, October 14, 2001 at 10:21 PM (CDT)

Just a quick report on Caedan. He has had a low-grade fever all weekend with a nasty cough that hurts. His spirits are good but he has little energy. He did go see a movie today with his friends so that's good but I'm a bit worried about him.

If his fever doesn't improve or increases we'll have to go for bloodwork. On Wednesday his neutrophils were 4.3 which is very good. They increase with the steroid and now that that round is done, the neuts. will start to decrease. Maybe this is just a viral thing but of course, I've got our bag packed, just in case.

I'll write more this week if things don't improve.

m.

Wednesday, October 03, 2001 at 05:26 PM (CDT)

Caedan was admitted today. Had his LP with no problems. Should get out on Sat. am.

Then back in just for the day on Monday and for the afternoon on Wednesday.

Happy Turkey Day!

m.

Thursday, September 27, 2001 at 09:04 PM (CDT)

Caedan's counts were ALMOST high enough for admission this week, but not quite.

That's okay, though because now he can go to his first basketball game on Sat. morning. He's really looking forward to that. As well, he's going to swimming lessons on Fridays with his buddy Dylan L. from school. It's wonderful seeing him do such "normal" things.

His hair's falling out again. Boo! I checked with Daniel, and his is growing in nicely so I don't think he's willing to shave it again. Even for the Canadian Cancer Society. Oh well, I can't blame him!

Next admission date is Wed. Oct. 3rd.

m.

Saturday, September 15, 2001 at 10:41 PM (CDT)

Two weeks ago today was the BBQ Party for Caedan's Wish. It was sensational. The planning and preparation that was involved in this day at the park must have been incredible and yet the day came out flawless.

There were clowns... I mean really good clowns who made terrific balloon creatures, kept the kids entertained, and even made my Dad smile!

There was a huge inflatable "caterpiller" or something (?!) that the kids could climb through and bounce around in and then come out and do it all over again.

There was face-painting, water balloon tossing, PINATAS, and an all afternoon soccer game with a child-sized inflatable soccer ball.

The firetruck came and spent almost the whole afternoon at the park with us. Kids were able to climb all over the truck, try on the mask and helmets and the firemen even sprayed the hose for the kids. A definite hit!

The raffle prizes were a BLAST. Apparently people were buying $40 worth of tickets to try to get the prizes of choice. The barbeque was a dream that everyone seemed to need... I mean want! (Couldn't anyone use a NEW bbq?)

The food was awesome. Endless food and pop and delicious cake from Angelos. Yum yum!

The organizers had a whole gang of volunteers who helped them keep things moving and exciting the whole day. There seemed to always be something to do!

We barely saw Caedan as he took over as host to all his friends and played and played and played. Had a quick bite to eat, and then back to play.

There were friends from all over. Caedan's school friends, our friends from Windsor, high school chums that we haven't seen in years. Neighbours from here and neighbours from Windsor. Some of my co-workers and kids from the hospital. Our friends Valerie and Cliff who donated the BBQ came from Ottawa with their two boys and Rita and Greg came with their guys from Toronto. In total we estimate about 250 people came to Caedan's Wish Day. Astounding.

At the end of the day we met with the friends who made it all possible so we could personally thank them for everything they had done for the last eight months or so. As I squeezed Sandy in a hug she whispered that it turned out exactly as she had hoped. I am so glad.

We are so lucky. We are so blessed. We are so loved. There's nothing more that I could hope for.

m.

Friday, September 07, 2001 at 08:32 PM (CDT)

Caedan is handling this admission okay. He's quite fatigued but not feeling too sick. Unfortunately, the floor is full so we are in a ward again. When I left tonight there was a screaming infant whose mom went home for the night. I doubt Caedan, Scott and the other roommates will get much sleep tonight. Sheesh!

I'm too tired to write tonight, but will have a nice long description soon of Caedan's Wish day.

Tuesday, September 04, 2001 at 12:50 PM (CDT)

I know you're all looking for a more recent update. I promise to write a LONG one soon. Caedan's Wish Day was above and beyond our wildest expectations. We didn't fully recover until 2 days later!

We'll have some pictures scanned in the "photo album" soon, too.

Caedan goes in for chemo tomorrow until Monday. He's at school today for his first day!

More soon,
M.

Wednesday, August 08, 2001 at 05:37 PM (CDT)

You MUST check out this webpage. Finally someone is meeting the challenge! And How!

http://www.shavedhead.homestead.com/

Don't forget to keep Caedan's Wish Day open on Saturday, September 1st. If you haven't heard about it yet, please feel free to e-mail one of the following people for more information.

Sandy Bolton: bolton@wincom.net

Tina Herzog: tina.herzog@sympatico.ca

Dina Kenkel: erabankers@aol.com

Todd Klingbyle: tklingbyle@home.com

Lore Wainwright: lore.wainwright@bell.ca

Tuesday, July 31, 2001 at 10:07 PM (CDT)

Today was Caedan's bloodwork day. Despite him feeling very good with lots of energy, his neutrophils are only 0.4 (the neutrophils don't dictate his energy level, but it seems strange to see him so good on the outside when inside his body is clearly not so good).

We'll have to wait another week for his next admission. It's nice to have the break and it means he can play in the soccer game tomorrow, but it is still very frustrating to know this just postpones the end of this Intensification phase.

Camp Trillium was 100 times more than we imagined. Rainbow Lake is beautiful. The cabins are only 3 yrs old so they are clean, and modern and wonderful. The food was awesome and I didn't do any dishes the whole time! The counsellors kept Caedan and the rest of us hopping. Caedan did wall climbing, high ropes, low ropes, archery, bb guns, kayaking, paddleboating, and swimming, swimming, swimming.

The parents were given daily activities to choose from as well as planned games and murder mystery evenings. We met some terrific families including one boy named Patrick. He is 14 yrs. old. He was first diagnosed with ALL when he was 20 mts old. He relapsed 1 year off treatment (I think) and had a similar protocol as Caedan has now except he also had to have radiation because of the CNS involvement. He is now 6 yrs off treatment and we saw for ourselves, a picture of health. It was so inspiring to hear such a positive story. I for one, really needed that right now. Having just heard about a dear little girl from our hospital relapsing for the 2nd time as well as the news of Arielle's passing 2 wks ago. Caedan met Patrick, too and I made sure he understood how well Patrick was doing now.

Anyway, enough of all that. I hope you're all enjoying your summer and that you have air conditioning that works!

M.
p.s. Caedan's guestbook has been kind of lonely lately.

Thursday, July 19, 2001 at 08:20 PM (CDT)

Is it me, or is this summer whizzing by?

Caedan did fine last week with his last round of chemo. He is all ready to go to Camp Trillium on Saturday.

This is a family camp (see link below) for kids with cancer. All four of us are going to Rainbow Lake about 1-1/2 hrs. from here.

It should be a nice little holiday. We'll tell you all about it when we get back.

Enjoy each day,
M.

Wednesday, July 11, 2001 at 07:49 PM (CDT)

Back from vacation already!
We had a glorious time and I think it really charged our batteries. I have added a picture of Caedan taken with dear friend, Rick's new digital camera. It is of Caedan on top of Mt. Douglas in Victoria, BC.

Caedan is in for another round of chemo. Ten out of 16. Unfortunately, the unit is full so we are in a 4-bed ward sharing with a 6-wk old baby and other pts.

We'll be in until Monday...
July 16th...
Is this ringing any bells???

My birthday, of course!!!
M.

Monday, June 25, 2001 at 09:14 AM (CDT)

VACATION NEWS ! ! !

Big news! Caedan and I are going on vacation. We leave for Vancouver on Wednesday and return on Friday, July 6th. Back in March when Scott went skiing we knew we could never manage to take a full family vacation out West, but we could break it up a bit and grab a seat sale when we could. So, that's what we've done.

We will get to see Baby Noah (John & Christie's new sunshine) in Vancouver. When we go to Victoria, we will get to see my two sisters and their kids. Some of whom Caedan has never met! There are many other relatives and friends we will visit, as well as some awesome sight-seeing.

Caedan's counts were not that high last week but he gets bloodwork done again tomorrow so we'll see. We will go to Children's Hospital of BC in Vancouver if we run into any problems. So that's our safety net.

Caedan will go in for his next round of chemo on July 11th.

Happy Canada Day next weekend,
Maryla

Saturday, June 16, 2001 at 09:41 PM (CDT)

Caedan was discharged this morning. He got home at about 11:00am and promptly fell asleep on the couch. When he woke up an hour or so later he decided he was well enough to go to his buddy Daniel's birthday party at Silver City Movie Theatre. We thought it was a decision he could make but just in case, I hung around the mall shopping with the Cellular phone on in case he needed to leave early. He was able to have a piece of cake (vanilla, Yay!) but then he was ready to go home. It was so much more important for him to go to the party and leave when he was ready, than to miss it altogether soley because of this cancer. He fell asleep on the couch tonight and is now resting away some of those nasty meds.

We won't get to Windsor tomorrow to see my Dad on Father's Day because that would just be too much for Caedan, I think. Maybe next weekend!

Monday morning Caedan has an MRI (at the University Hosp. campus)to try to find the reason for his leg pains. He has also started a new medication that takes a couple of weeks to kick in, but will hopefully help some. After the MRI we head up to Children's hosp. for out patient chemo. It'll be a long day.

With love,
M.

Tuesday, June 12, 2001 at 09:52 PM (CDT)

Unexpectedly, but happily, Caedan's counts are high enough for admission tomorrow (3 wks instead of 4wks). We were caught a little off guard since it has almost always taken 4 wks between admissions.

He'll get his bloodwork done again tomorrow morning to be sure but I think it's safe to say we'll be in until Saturday morning.

He gets a Lumbar puncture this time. BOO!

Rather inconveniently, we are a one-car family this week while the van gets some work done. Yikes. Tomorrow should be a whacko day!

Will update soon.

M.

Sunday June 3, 2001 (10:30 pm)

Caedan is feeling good these past few days.

He had out-patient chemo (Vincristine) on Wednesday, and then played at his soccer game that night! His counts were still very high on Wednesday (that's the steroid lifting them up) but we expect them to start descending through the week.

He has started taking some Ibuprophen for his bad leg pains. This tends to mess up Platelet counts but Dr. Cairney is watching closely and we'll only keep him on it if his plts are okay.

He had a bone scan 10 days ago which didn't show any problems to explain the pain. He is now booked in for an MRI to look a little closer. I'll let you know when the MRI gets booked.

I look forward to this week being uneventful and boring.

M.

Friday, May 25, 2001 at 10:18 PM (CDT)

The chemo's are kicking in now. Caedan is feeling tired and rotten.

I didn't get much sleep Wednesday or Thursday so I'm at home tonight and Scott is sleeping (use that term loosely) up there with Caedan tonight.

Carol from Windsor is here today and tomorrow helping out. She'll have this house in order in less than 24 hours! Thank goodness.

We plan on discharge day to be Monday.

M.

Tuesday, May 22, 2001 at 09:32 PM (CDT)

Caedan should be admitted tomorrow as planned. His neutrophils are just barely high enough so he'll get blood drawn again in the morning to be sure.

Tonight was a fundraiser for his school at the local McDonald's Restaurant. Great fun watching the teachers and principal help out behind the counter. Also, a thrill for most of the school's students to see each other AND eat at their favourite restaurant!

We are rejoicing here tonight because John (Scott's youngest brother) and Christie had a precious son yesterday. Noah was 10lbs, 11oz beating Caedan by 7oz. We are all giddy with happiness and joy and can't wait to meet the newest member of the family. Now, how the heck are we going to get to Vancouver???

More later this week,
M.

Tuesday, May 15, 2001 at 09:24 PM (CDT)

We'll be out of the hospital for the long weekend.

Caedan's neutrophils are only 0.2 so he will have to be admitted next Wednesday instead of tomorrow. He's not bothered. He'll get to play in his first soccer game tomorrow and that's his priority.

We're enjoying some beautiful spring weather here with crabapple trees blossoming and lilac bushes showering the backyard with perfume.

Hope all is flowering in your part of the world.

M.

Saturday, May 12, 2001 at 08:48 PM (CDT)

HAPPY MOTHER'S DAY ! ! !

Wednesday, May 09, 2001 at 09:10 PM (CDT)

Caedan is having a good week. He's been to school every day. His headaches are finally gone (must have been a result of the Lumbar Puncture) and his stomach is back to normal.

This week's great news is that he made it to his first two soccer practices this week. YAY ! He has practice every Monday and a game every Wednesday. He's hoping that his counts won't be high enough for admission on Wednesday so that he'll be able to go to his first game. We'll see.

M.

Tuesday, May 01, 2001 at 08:30 PM (CDT)

Caedan's feeling a bit better tonight. Sitting up more and even making jokes and cracking insults at Dad. That's a good sign.

He gets a Vincristine Injection tomorrow afternoon and then nothing for 2 weeks.

Hopefully he'll get back to school soon and have a bit of normalcy.

Thanks for all your concern.

M

Monday, April 30, 2001 at 08:50 PM (CDT)

Caedan is having a tough time this round. He was discharged on Saturday but has been pretty sick. Actually, he really hasn't been up since Wednesday. He had his Lumbar Puncture at that time, and it must have taken a lot out his system.

He had a couple of strong chemo drugs IV today at the clinic and will get one more on Wednesday. Then nothing for 2 - 3 weeks.

This is definitely not the usual bounce-back Caedan. I think this poison is starting to accumulate or it's working so well that it's harder for him to get up after getting knocked down each round of chemo. Or it's both. Or it's just a bad week.

He missed Pizza Day at school last week and Science club today and the Jump Rope for Heart and Stroke Foundation is this Friday. I don't know how he'll be up to that. This is not how we thought our 8-yr. old would be spending his days.

M

Tuesday, April 24, 2001 at 04:27 PM (CDT)

All's well at this end. Caedan's counts are fine for his 7th round of in-patient chemo tomorrow. (This doesn't include his in-patient stays for neutropenia.)

His birthday celebration was a roaring success and Scott and I survived the nine screeching 8-yr. old boys at the bowling centre.

If his Methotrexate levels return to normal on time, he should be discharged on Saturday. I will let you know if that isn't the case.

M

Wednesday, April 18, 2001 at 02:20 PM (CDT)

Caedan won't be admitted today. Since his neutrophils were so low last weekend there's no way they'd be high enough for chemo to start today.

This is great since his birthday is on Sunday and we want to have a Celebration Weekend for the BIG OH-8 ! ! !

We'll get his bloodwork done next Tuesday and see about admission on Apr. 25th

M.

Saturday, April 14, 2001 at 05:58 PM -- Easter Weekend

Caedan was discharged today. He has been fever-free for more than 48 hours and nothing showed on his blood cultures or chest X-ray.

His neutrophils are too low to count so I think that means they're zero! This just means he is very defenseless to bugs and viruses. We'll just have to make sure he's not too exposed to crowds for a few days. It's nice that it's a long weekend from school.

Cali is feeling back to her rambunctious self so we are settling in tonight and preparing for the fuzzy guy to visit tonight.

Thinking chocolatey thoughts for you all,
M

Thursday, April 12, 2001 at 12:51 PM (CDT)

Caedan was admitted yesterday.
He has had a fever on and off and doesn't feel well.

His neutrophils are too low to count and blood cultures have been done to see if we can find an infection anywhere.

Don't know how long we'll be in.

M.

Wednesday, April 11, 2001 at 09:51 AM (CDT)

Caedan's temp is 38.3 so we have to go in for bloodwork. He's getting some more sores (they look so raw) in his mouth and he feels yucky again today. He's got the chills so I wasn't surprised to see his temp rising.

Unfortunately, Cali has a temp today and is clearly sick with something. Wouldn't eat cereal this morning but is drinking juice. Obviously, we can't bring Cali to the clinic so I'm not sure what we're doing as Scott is really unavailable today.

Friday, April 06, 2001 at 09:07 PM (CDT)

Pokemon 3 is here! And yes, Caedan is delighted to report he was one of the first to see it. Thanks to Luke's Dad, Henry who took Luke, Caedan and Jake tonight. Brave man! Scott saw the first two and somehow isn't too upset that he has missed the third. I said, don't worry, I'm sure Caedan will want to see it again.

Caedan's spirits are high despite some nasty pains. He has a lot of pain in his throat from mouth sores (again) and his legs are very weak and sore tonight. A nagging cough makes me think he's got a bug of some sort. I packed our suitcase (which is always halfway packed, anyway) in case a fever arises in the night.

Cali was at daycare 2-1/2 days this week and of course, now has a cold. I'll be so happy when the spring weather is here to stay!

I'm doing okay. Extremely forgetful, though, which is irritating. I am always saying, "what am I forgetting?" to myself or out loud to whoever is close by. I'm thinking it must be chemo brain. That's a condition that parents of kids with cancer get. Nothing that a few years of normalcy won't cure!

Off to do Friday night laundry. Hope you're not doing the same,

M

Monday, April 02, 2001 at 11:17 AM (CDT)

We just got home this morning. Caedan is feeling tired, but not too bad. He'll probably be up to going to school tomorrow, even.

Wednesday is out-patient chemo and then we're done for a couple of weeks.

Last weekend went smoothly, with me up north with the college girls and Scott, his mom and our friends helping out here.

Thanks for checking in!

m

Tuesday, March 27, 2001 at 09:26 PM (CST)

Yes, Caedan is admitted tomorrow for 5-6 days of chemo. He usually starts to feel lousy by the 2nd or 3rd day which is to be expected.

I am still planning on going away for the weekend with my college pals. Feeling very guilty and not very organized, but I have made the commitment to the friends and to myself. I'll leave late Saturday morning and return late Sunday evening. Not sure what we're doing with Cali on Sunday so if you live in town and have a free afternoon...

Caedan is not thrilled with the idea of me being away, but has not said anything to make me feel worse. He's being very stoic and sweet. He is disappointed about missing out on a Camp Trillium Day Event on Sunday, though. We try to make the most of his time out of the hospital, but it seems lately, there is always something going on when he is admitted that he's missing. His birthday is in only 3 weeks and I'm not even considering an inpatient stay for that!!!

Okay, off to bed as this will be my last good night of sleep for awhile...

m

Tuesday, March 27, 2001 at 06:06 PM (CST)

Caedan's counts have soared! They have really come back in the last week so he will be admitted tomorrow until probably, Monday.

I'll write more later tonight. I just wanted you to know.

Tuesday, March 20, 2001 at 05:42 PM (CST)

Another disappointment. Caedan's neutrophils are only 0.2 so he can't be admitted tomorrow for his next round of chemo. He understands now that for every week delayed, it's a week tacked onto the end of this protocol. Frustrating for everyone. Well, everyone but Cali, she's so blissfully unaware of any disappointments and is just happy to be able to sit in Caedan's lap and read books! Aren't we blessed with both of our incredible kids?!

Scott returns from his ski holiday sometime late tonight. And not too soon, I might add. This single parenting is no easy ride! I've been going to bed by 10:00 every night which is 2-1/2 hrs earlier than usual. I must be tired.

More next week.
M

Monday, March 12, 2001 at 08:16 PM (CST)

MARCH BREAK IS HERE ALREADY ? !

There's still plenty of snow around here(although that's supposed to change this week with warmer temps), and it feels like we just took the Christmas tree down, but sure enough, it's March Break.

Caedan is delighted to be out of the hospital during this cherished holiday and I'm scrambling to keep him busy with playdates. We've even been lucky enough to get his new tutor here for a couple of hours this week to catch up on science experiments and cursive (longhand) writing. Caedan and Mrs. Summers had a great time tye-dying coffee filters today and learning about probability!

Last weekend was a double bonus. On Sunday morning we had a very quick but terrific visit with Uncle John who was passing through on business. The boys didn't get a chance to play snow soccer but Caedan did get to show off his Lego creations. We told Uncle John some juicy labour and delivery stories to keep him ready for anything when Aunt Christie has the baby in May. Hope we didn't scare you too much, Uncle John!

Caedan spent Sunday afternoon, with his Camp Trillium buddy, Mike. They played N64 games at Mike's and apparently shared some laughs and jokes. He was bubbling that evening talking about the great day he'd had and hopes to see Mike again this week or next.

Well, that's it for today's update. I've got to go help Scott pack for his ski trip. Yes, that's right, Ski trip! With much negotiating and compromising, Scott is going to Banff and Kicking Horse for a skiing bonanza. He'll fly into Calgary and ski with Marty then on Sunday he'll fly to Vancouver to see Uncle John & Aunt Christie.
It will be a busy 7 days but how much skiing can a 40-yr. old take, anyway?

I'll let you know on Tuesday if Caedan will be admitted on Wednesday.

M

Sunday, March 04, 2001 at 08:41 PM (CST)

I'm a little late in telling you, but Caedan got home yesterday morning. He's not as sick as he sometimes is but he is hungry and VERY tired.

We go to the out-patient clinic tomorrow (which, by the way is right in the hospital) for a 2-hour IV infusion of chemo and then again on Wednesday for an injection. I'm not sure if he'll feel up to going to school much at all this week. Hopefully we'll have a tutor arranged to come to the house and help fill in the gaps.

The whole family had a wonderful visit with Dina. It just seemed so short. She was VERY busy with cooking and laundry for a seven-month pregnant mother. I don't know where she is pulling that energy from but we definitely reaped the benefits.

M

Tuesday, February 27, 2001 at 03:58 PM (CST)

The counts are in. Caedan will be admitted tomorrow. His neutrophils are a whopping 1.1 so there's no problem on that score. Unfortunately he's going to miss two birthday parties this w/end and that's got him pretty disappointed.

Hopefully, he'll be out on Saturday and back to feeling better by Tuesday.

We have Dina coming from Michigan this weekend to help out so I don't have to get all stressed or anything.

I'll try to update this page on Friday to let you know where things are.

M

Tuesday, February 20, 2001 at 08:05 PM (CST)

Just as we suspected. Caedan's counts are too low to be admitted for Chemo tomorrow. His neutrophils are only 0.3 and as you probably remember, they have to be .75 or above.

This is nice as he,(oh heck, we all) need a break from the hospital. He'll get his counts done again next week and we'll see if he's ready to go in then.

Cali is still struggling with a nasty virus. She's been vomiting every day since Friday and had a bout of diarrhea on the w/end. I had her in Children's Emergency on Saturday but since she's still sick I wonder if I need to haul her into the doctor... AGAIN. She is 16mts old now and still doesn't have her 12-mt immunization because she's had ear infections, fevers, colds or flu bugs all winter. Poor little sweetie.

Anyway, Caedan is at school this week and is in great spirits. He might even go skiing with Scott this weekend. We'll see.

M

Friday, February 16, 2001 at 09:56 AM (CST)

We're Home!
Caedan was discharged this morning as he has been fever-free for more than 48 hours.

He seems pretty good. I think he looks pale but his hemoglobin is quite low so that might be what's causing that.

His counts are still quite low. We'll go in on Tues. after school to see if they are high enough to get his next round of chemo which is scheduled for Feb. 21st.

I'll let you know...
M

Wednesday, February 14, 2001 at 05:17 PM (CST)

Caedan is still in the hospital but his mouth sores are MUCH better. After being admitted for the pain of the sores, Caedan spiked a fever on Friday and it is finally coming down. His counts have all dropped dramatically which makes us think he is fighting off some kind of infection. Up until yesterday he was a pretty sick kid. Today he was out of bed the whole day doing school work, playing Jr. Monopoly with me, and even got to go down to the Childlife room where he played air hockey with his Childlife Worker, Melissa!

Because his counts are SO low, he is considered neutropenic. This means he is very susceptible to germs and infections. He is therefore restricted to his room at all times except when we reserve the childlife room just for him. This restriction was okay when he was feeling sick, but now that he's feeling better, he's getting a bit stir crazy.

Once he is fever-free for 48 hours he can come home. His last fever was last night at 8:00pm so our countdown is on. Fingers crossed.
Happy Valentine's Day!

I'll try to write more tomorrow.
M

Friday, February 09, 2001 at 09:04 PM (CST)

I'm sorry to report that Caedan was admitted today. He has had some extremely painful mouth sores that have prevented him from eating or even drinking. We were worried that the codeine we gave him at home wasn't helping the pain and he could be getting dehydrated so we went in today and he was hooked up to an IV.

His counts have dropped from Wed. and he had a fever today so they have started him on good powerful IV antibiotics to keep him from getting sick from an infection. Also they are giving him morphine through the IV to help ease the pain and allow him to finally eat something (in 32 hours all he had was 3/4 of a piece of toast)!

He was disappointed to be going back into the hospital so soon, but is not complaining. He had a chest X-ray tonight that didn't show pneumonia so the hacking cough that he has is hopefully just a viral thing and will go away soon.

Mouth sores are common yet painful side effects of some of the chemos that he is getting in high doses. They also occur down the whole gastrointestinal tract so the sore throat is from sores we can't even see.

Scott's up there tonight and I'll go take over tomorrow at noon or so. Looks like we'll be in for 3-4 days at least, but I don't know for sure. I will keep you updated.

m

Monday, February 05, 2001 at 10:10 PM (CST)

Caedan was discharged today and we are so happy to be home.

Friday was a particularly bad day for him with some improvement on Saturday. By Sunday he was getting antsy and ready to go home.

He's tired out so he was content to lie on the couch and watch movies and then play Legos tonight.

We'll all sleep well tonight.

Thursday, February 01, 2001 at 06:27 PM (CST)

Day 2 and Caedan is doing okay. Steroids have kicked in so he's quite hungry. A mother always likes to see her children eat.

We are in a private room now. They were packed full last night so we had to be in a ward (3 other kids and their parents) and I don't think I got more than 20 min. sleep at a time. With a total of maybe 2-1/2 hours. Yikes!

Caedan spiked a fever last night so to avoid any unnecessary germs, he's been moved into a private room now. We should sleep well tonight!

I'm heading back now after my 2-hour shift at home.

Love to all,
m

Tuesday, January 30, 2001 at 04:06 PM (CST)

All systems are a GO.

Caedan had his bloodwork done today and his counts are fine for admission tomorrow.

We go in at 10:00 in the morning until Sunday or Monday. -meals and cookies always welcome :0)

Cali still has both ear infections and the cough but is active and happy and able to go to daycare this week which will smooth things out a bit.

The February blahs are almost upon us... must be time for a vacation?!

Saturday, January 20, 2001 at 06:28 PM (CST)

Okay, no more colds or flus are allowed in this house! We have endured Cali and Mommy with the flu, then Cali with viral cough and double ear infection. Caedan is now getting over a rotten head cold that had him home from school on Friday. Imagine that! If it's not the chemo keeping him home, it's a common cold. But with Caedan, we can't just treat it like a simple cold, we have to take precautions and Mom has to fret for 48 hours straight. We are all feeling better and Caedan plans to go to school all next week. Here, here!

Next hospital admission is scheduled for January 31st for 5 days.

Friday, January 12, 2001 at 05:24 PM (EST)

We're Home.
Caedan was discharged yesterday at suppertime and he was thrilled to go home. We all slept happily through the night with Cali bringing it to an all too sudden halt at 6:08am calling "MOMMY" loud enough to wake us all!

Caedaan and I went back to the hospital this morning for scheduled chemo. Caedan had two different kinds of IV chemo infused over 2 hours so we were there until about 2:30. Right now he's sacked out on the recliner fighting a bit of nausea.

Speaking of nausea, despite my flu shot earlier this season, I managed to get a bout of the 24-hour bug on Tuesday. Must have got it from Cali who had it on Sunday and Monday. The flu just doesn't fit into hospitalized chemotherapy sessions and I do not care to repeat this week. EVER ! I'm watching Scott and Caedan for signs but it looks like they may be spared this particular strain.

My Tip of the Week: Be sure to have Gravol and Imodium in your house at all times. These are two items that when you need them, you DO NOT want to be without them.
< smiles >
M

Monday, January 08, 2001 at 06:54 PM (CST)

Caedan's counts were good today so he had his LP and is now admitted for his 4-5 days of chemo. I left at about 4:30 when Scott's Mom got there to relieve me and I'm heading back in a few minutes. His spirits are good and he's feeling okay so that helps us all.

Poor little Cali has a stomach flu of some kind that we're all trying to cope with. Scott's in the middle of a huge trial preparation so "our two Karens" came to the rescue today. She has a temp. of 37 degrees right now at bedtime and we're praying that it doesn't go higher. Don't know what we'll do tomorrow if she can't go to daycare. Sheesh. Never rains but it pours.

Will update when Caedan is discharged on Friday or Saturday.

Tuesday, January 02, 2001 at 12:43 PM (CST)

Another dry run.
We were all set to go into the hospital today for 5-6 days and got sent home instead.
We went to the clinic this morning and when his bloodwork came back it showed that his neutrophils were at 0.4. They have to be at least 0.75 for him to start the next round of chemo.

It's nice to be home, but I get discouraged when we have to put this off another week. Delays are inevitable, but still disappointing. Oh well, I guess now I have no excuse for not taking down the Christmas tree.

New Year's Eve was a fun time. My brother Pruitt and his daughter Paige came up from Windsor on Saturday and we had a good weekend. Paige and Caedan went tobaggoning on Monday and it was great to see him with the energy to go back up the hill over and over.

Right now he's glued to the T.V. watching Pokemon 2000 that Grampa sent. That one will get plenty of viewing, I'm sure.

So it looks like Caedan will be admitted next Monday for 4-6 days.

Take care,
Maryla

Tuesday, December 26, 2000 at 10:19 PM (CST)

Ho Ho Ho!
It's been a silent night or two on my email updates but I'm sure you've all been busy, too.

Caedan is doing remarkably well this week and last. After 5 nights in the hospital, he was discharged on Saturday December 16th. He had two slow days and then snapped back up again. For the week of December 18th, he went to school 3-1/2 out of 5 days. Not bad, eh?

We are currently enjoying a quiet week with Scott just working at home and Cali home all week from daycare.

Caedan has been out playing in the snow most days and until he pulls his hat off, you can't even tell he's sick.

Santa and his elves (you know who you are!) were very good to all of us this year. I can barely find a vacant spot to stand on the living room floor for toys, games, books and chocolate. ho ho ho.

Next Tuesday (January 2nd) Caedan is admitted again for chemo. This will probably be a 4-5 night stay. I'll try to update this page on Sunday to let you know if anything changes.

Wishing you all the joy of the season. And stop checking the mailbox for my annual newsletter. I've had to skip it this year and use the cyber world in it's place. But just for this year. E-mail will never be a substitute for Christmas cards and correspondence for me, I promise!

Tuesday, December 26, 2000 at 10:18 PM (CST)

Tuesday, December 26, 2000 at 08:52 PM (CST)

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