Journal History

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December 23, 2004 8:47 am

Hi Conor. Mommy asked me to update today because she hasn't felt much like doing it at all. So that means I get complete musical control BUT don't blame the spelling mistakes on me! Mom does have to edit after all!

So, do you remember this song? The old snowman that played this song broke remember? and then it got completely ruined in the flood we had in the basement this passed summer. So mommy was all giggly and silly when she came home last week with this new snow man!! I was so happy. First thing I did was run to the kitchen put in on the floor, turn it on and dance around! Mommy was pretty surprised at that, especially because that is where you always put it and we would dance around the the kitchen, with you holding my hands, or knocking me over or just shaking you butt! I sure miss you conor! can you believe mommy almost didn't buy the new snow man? she thought maybe she was buying it because you loved it and that she was trying to make me like what you did!? Ha! I always loved that snowman, dancing to that song with you and I remember it all. Everything about you conor. No matter what anyone says about me being too young and not being able to. I remember. Mommy thinks that sometimes you must come play with me because sometimes out of nowhere I will do or say something that only you used to do. At first mommy thought she was you know, going a little crazy but its pretty obvious that you are there with me all the time. You take such good care of me!

Conor I am so excited for christmas! The girls came by last night and brought me a present! Its a cool train that daddy has to help me put together. And cassie came by last week and brought me some very big blocks and while mommy went and did some silly mommy stuff like getting her nails done, cassie stayed and played with me! It was fun. I gave the girls a really nise picture of the five of us, remember the one Pop took? You are all acting silly and jumping aruond with your tongues out and I of course look the picture of the perfect boy! haha. I gave them something else pretty special too, but I can't tell you because I haven't given Cassie hers yet and its kinda the same and I don't want her to know!

Mommy and daddy are trying hard to get Christmas to come to our house this year. Its hard. One minute Momma is all excited and running around buying stuff ( you KNOW how good she is at that!) and calling santa and putting in last minute frantic orders for me. (she wanted santa to bring me the fully assembled train table in a moment of last minute panick, but Sanat said even his elves couldn't pull that one off just 3 days before christmas!, not that I need it, but I do like it and you always loved it too, and Mommy says she always talked herself out of buying it for you and now she's still doing it! Oh well, there's always my birthday :)) What was I saying? Oh yeah, momma has just been up and down and not really sure what to do. She sure knows that she misses you and wishes you were here and no matter what, no amount of presents or joy on christmas can make that better. Momma says she is just feeling so gosh darn mad that it seems nothing really will make up for that and just wants to run away from it all. But she loves me so much, and I am such a great help for her, I keep her laughing and smiling and bring her joy everyday, she is excited about bringing christmas to me and we have a tree up and everything! I didn't want to put the angel on, that was your job, so mommy and daddy did it. I put lots of other decorations on though.

I think I may go see brooklyn and baby ryan today. I love brooklyn so much conor. She is a really good friend to me, and you'd be happy to know that she takes good care of me, and looks after me just like you used too. She is like a big sister to me. Though, just between you and me, she is pretty cute and I am glad she's not my sister ;)...baby ryan is lots of fun too! He's getting so big and soon we can play trains together. I spoke to santa about that one a long time ago! That boy needs some THomas stuff ASAP! Hope santa comes through on that one!

Oh and Nana and Keith are coming for christmas. Isn't that cool. Maybe now, we'll get some turky cooked around here. Mommy said something about ordering pizza for christmas dinner, but looks like now we won't have to!

Oh boy Conor. I guess what I really really want for Christmas is it to be like last year. The four of us all cuddled in bed reading "the night before christmas" and waiting for santa. Tearing open presents, fighting over who gets what and with you showing me the ropes and telling me all about the big guy and what to leave him for a snack. I know you'll be here, in my heart, in all of our hearts, but that's just not the same is it? We love you and miss you very much Conor. We see you everywhere, in everything, but in seeing you, we see your absence. With every passing train, with every snowflake, with every silly christmas song, in every sparkle of laughter and in every tear. You are always there and always gone.

I don't know what the holidays will bring but we will find a way to hold on to you and each other and do the best we can.

Mommy and I are going to dance to the silly song now Conor...I love you.

Your little buddy,
Aidan, aka little Willy

Thursday, November 25, 2004 11:27 AM CST

Its not that I’ve forgotten things about Conor, I don’t think so anyway…I think its that I am clinging so tightly to the memories I have of him, the recent ones, that the others just get pushed to the back of my mind. Memories of before that awful day. Seems my life is divided into two categories, before diagnosis and after. At least it seems its how my mind has compartmentalized it.
In the before diagnosis mind I have memories of a beautiful energetic happy boy running circles around the house, no doubt in his mind he WAS a train. A little boy reaching his arms up to me asking me to be lofty so can be bob and go for a ride. He’d wrap his arms around my neck, his legs around my waist, clinging to my hip and say “ Let’s go Lofty!” A little boy who planted sunflowers to watch them grow bigger and taller than he. A little boy that spent hours digging in dirt and playing outside. All day, everyday.
A little boy just being a little boy, anxious and excited about being a big brother and happy and content to just sit holding his moms hand. A little boy dancing to the sound of his dad’s guitar, and making silly songs up in his head. Things were different then, before diagnosis. He was just a little boy, I was just his mom and we had a lifetime to do and to be. We were naive, we were innocent and I thought that loving him would be enough. That if I just loved him, he would have it all, he would be safe, secure and protected.
I don’t know if diagnosis changed conor all that much. He was still a loving, energetic, happy boy. But it changed me. It opened my eyes to horrors I had never imagined and it make me so very angry and afraid and sad. I clung to hope and denial and fought the way conor showed me how to do. I realized that it was conor that was teaching me, that was guiding me, and that I had more to learn from him than he could ever learn from me. He was wise in ways that no child should ever be. His gentle soft hand touching my face, wiping away my tears saying, “its ok mom, it’s going to be ok mom”. Looking back, and even at the time I knew, but couldn’t see, he did all he did for me. For us, his family. He endured that treatment and fought so hard for us. Not for himself. He knew. He always knew his time was short, and he knew he had to take care of us and show us how to let him go. Everything in those 18 months he did for us, so we could have him just a little bit longer. Nothing will erase the memory of a little boy, sitting on a hospital bed, telling me he wants to fight. We told him that he didn’t have to that, we could stop right now and he didn’t have to fight anymore. But he didn’t. He looked right at Darren and I and told us to keep fighting for him. So we did. It wasn’t long before he told us he couldn’t fight anymore, and it was time to let him go. It was me he told, and then he showed us, his body showed us, the machines showed us and it was clear. I don’t think he could’ve told us on his own, he wanted to fight for us so badly that I don’t think he knew how to tell us he couldn’t any more, so he let his body do it for him.
There are so many memories, so much is tucked away in my mind, I know it’s all there, but sometimes it’s just to hard to remember. Nothing brings those memories back like music. Without really trying there was always music in conor’s life. I bought a box set of Bon Jovi the other day. I hadn’t intended on buying it because I owned the entire collection anyway, and besides that, Bon Jovi has become a sound track for my life and sometimes the memories are just to painful when I hear a song. There are those songs that I hear and I can laugh now, at my naivety. Songs from when I was in my 20’s young carefree and feeling the weight of the world over a heartbreak or just out having fun with my roommates til 5am. Watching the sun come up over the harbour while lying on our backs singing over the speakers. Then there are the songs that took on new memories. Songs like runaway that became conor’s, not mine. Memories of a 2 year old boy, standing on a Rubbermaid container, or a chair or a block, singing “ooohhhhhh, she’s a little runaway” making sure he used the high pitched voice that Jon was using. Such times gave me a glimpse into the life that conor may have had. Darren and I used to joke that he’d cash in his college fund so he could tour the world with his rock band. And that would’ve been ok. Or there are songs that became an anthem for a little boy’s life. Songs like “its my life” that we danced to and laughed to and played to. Or simple memories of watching a concert on TV, while conor was just a year and a half cuddled on my lap, just watching. And songs, and entire CD that got me through the times I had to leave my son in hospital so I could go home to do things I had to do, and spend time with aidan. Songs that I would turn up and just drive. Whether I used them to transport myself to a simpler time, when none of the fear I was living in was even a possibility. Songs that took me away from it all or songs that made me feel it all, and helped me cry when I need to, but was too focused on being strong to do so. It seemed ok to cry over the lyrics of a song. There hasn’t been much music in my life lately. It’s hard to face those memories and those feelings. Believe it or not, its not just 80’s hair metal that evokes these memories. Its kids songs and TV show themes and the entire Thomas CD and songs that came and went that come on the radio and I associate it with a certain day, a time an event. Songs likes “jenny from the block” that conor would sing and giggle about. We had changed to lyrics to “Conor, conor from the rock” Or of course “bob the builder” that reminds me of a big brother singing to comfort his baby brother. Or Puff the magic dragon that I sang without fail in his ear every night. Or silly made up songs we had together. Songs we made up in the shower or driving in the car or about going for a walk. Music was always there some how. Even songs that conor never got to hear, that some how stop me in my tracks and make me think of him, that bring his face to my mind and his laughter to my heart. Songs that make me remember and hold him that much closer and give me hope that some how, I may hold his hand again.
So I was happy when I bought the new Bon Jovi box set and discovered it was a lot of unreleased songs. I was able to listen and be in the moment, and just for that moment I was able to not remember that my son was dead. Then came the song that is playing now, a song that made me think of conor, and of me and made me think that conor is with me, always with me and that maybe someday we will be together again. The beautiful thing about music is you take from it what you want and what you need, it may mean a million different things to a million different people, and none of them may be what the songwriter intended. For me, I hear this song and I think of conor and myself and I know we have been together before and we will be again.

We went the other night to see the Polar Express. I had thought, prior to going that I would be devastated by the movie, shattered by all that Conor missed. Instead I watched the awe in Aidan’s eyes. Instead of the jumping and screaming and back flips conor would’ve done, aidan sat in silent awe. But I felt that joy that conor would’ve felt. I felt him there with us. I could feel his energy. It is one train movie that I know conor would’ve loved. At the end of the movie, we were the only people in the theatre, Conor, Aidan, Darren and I. Aidan took our hands, and we danced. The four us, there, alone in the dark theatre, dancing as the credits rolled. I felt conor so close. Feeling him like that is as much a comfort as it is a gut-wrenching reminder that he is so very gone. I am just reading this back and see, that I wrote, conor and the four of us danced. That wasn’t intentional, and I haven’t lost my mind, he wasn’t physically there, but he was there. His presence was everywhere.

Kristy


“May your ship always sail
May your stars always shine
May your dreams all come true
With some one by your side
May your smile never fade
And your battles be won
May you stay young forever
And Never Give Up
Live Each day,
What more can I say?”
~ Jon Bon Jovi

Saturday, November 13, 2004 10:16 AM CST

Some of the most difficult things are things that never happened at all. Like finding a new Thomas collection DVD set of the entire first season of Thomas the tank engine. the one where it all began, the one where its all explained, who's who, how thomas got his own branch line, how james became the red engine, how thomas and bertie got to be such good friends...Conor never had a chance to see that, its new out this month, and seeing it sitting there on the shelf in the store was a painful reminder of all the things conor didn't get to do.
He got to do alot, he lived alot in his four years, but the more I think about, its more about what he's done for others that stands out. He did more for the people that knew him and knew of him, than he ever got to do for himself. Talking to a friend the other day, a friend I consider an amazing mom, one who seems to be able to do it all, and is and incredible loving mom and great friend. I was surprised when she said that conor taught her so much. that she looks at being a mom differnt now, that she doesn't take her children for granted. I thought wow. I mean, I always wanted to be more like her. And here she tells me I taught her something? that conor taught her something? It just never occured to me that the way I parented conor was unique, that it was differnt. but I am starting to see now just how true that was. He was my everything, my best friend, it never occured to me that I couldn't do things with him. We just did them, It never occured to me to get a sitter to go anywhere or do anything, I was just taken for granted that conor went everywhere with me. I recall now people thinking it was strange but at the time it all seemed so natural. That's the thing with conor it was all so natural. I remember being afriad I wouldn't know what to do, or how to be mother or how to nurse him or change him or love him, but it just was there. I remember working for a short time when conor was about 10 months old, being gone for 3 hours and coming home and darren and conor meeting me at the bus stop. Conor had a slight bump on his head. I was hysterical. why didn't darren call? who comforted him? i was devasted that I wasn't there hold him and make it all better. It felt so wrong...not that darren couldn't do those things but It was me that needed to be there every second. I couldn't bear to be apart from him, couldn't bear the idea of him being even in a little pain or discomfort for a second. I put him first and before eveyrone and everything...its hard to know what to do with all that now.
Reading julianna's site today, her dad talks of reason and purpose. I found myself nodding and agreeing with everything written there. Especially the part about figuring out what this is all about. I mean what purpose, what reason could ever be good enough for a child to suffer through cancer? For a child to die? what purpose, what reason?? What can be good enough for me to not have my son? I can't think of any.
Recently CBC has a program airing called the "Greatest Canadian" in it(http://www.cbc.ca/greatest/), they are chronicalling the lives of extraordinary canadians who've made this wonderful country who we are and who have done many differnt things. The one that hit me the hardest of course was TERRY FOX. If you are from Canada, and I imagine just about any other part of the world, you have heard of him. But here, his name is just known.
http://www.terryfoxrun.org
Terry died at the age of 22, while running across canada to raise money and awareness for cancer research. Today, the cancer that terry had (osteogenic sarcoma,bone cancer)
has an 80 percent cure rate as opposed to the 30dds Terry was given over 20 years ago. Terry never made it across canada, at least not physically, but terry reached every single person and place within canada with his message and his hope. And because of terry, incredible advances have been made in cancer research and in fact $360 million dollars has been raised to date, in terry's name for cancer research. There is a person who had a purpose, who made a differnce, who changed the world, who made it possible for thousands of people to beat cancer. But I don't think for a second it makes any more sense to terry's mother that her son is gone, than it does to me that my son is gone. I'd like to sit here and tell you that even if one person's life is made better by conor's being here, even for a short while, that its all been worth it, but that simply isn't true. Then I think, well if it wasn't for people like Terry, Conor may not have had any chance, he may not have had that 18 months with us after he was diagnosed, and I am so greatful, so thankful for that, and I am thankful for Terry's purpose just as others are thankful for conor's purpse, and some how, some where to some one it all makes sense...doesn't it?
I miss you billy...
Kristy

Wednesday, November 3, 2004 10:32 AM CST

A five-dollar bill tucked safely in the right pocket of a well-worn pair of carpenter jeans. Jeans that instead of getting smaller as conor got older, got bigger. The waist unable to stay up on his ever shrinking little body. One of my dearest memory pictures is of conor walking down the hall, pulling his pants up over his butt. “Pull up your drawers” I would say. And sometimes he’d laugh and show me his butt. Others he’d grin and say, “oh man” and pull up his pants. Always, through my smile and my laughter and joking I’d feel a tug in my heart, and sinking in my belly. “He’s not getting any better. Look how thin he is”..Such thoughts were pushed away. There was no room to be negative. I had to believe he would beat that awful disease. Perhaps that’s why now I still think he’ll walk into the room, pulling up his pants and grinning like only conor could.

A toonie sitting unspent, forgotten in the pocket of his warm down filled winter coat. Worn only a handful of times, simply because it was not needed by a boy that couldn’t play outside as much as he’d have loved too. A boy who used to wake up and run outside to play train on the patio or in the snow. A boy that just loved to be outside, doing anything. That spent most of his time indoors, without even a window. A toonie from rare nighttime walk in the snow. A clear cold night, as he ran from door to door, shovelling driveways for fun. A toonie for a job well done-never spent- still waiting for a little boy to fish it out and run to the store with it to buy candy or a chocolate egg.

A mom, a dad, a baby brother still waiting, still wanting just one more second. Still wondering why and still wanting it all to be so different.



Thank you to Julianna bananna's dad for the song. I had emailed him awhile ago after I heard it played on Julianna's site. I had wanted it to send to my Father in law, conor's grandpa because I knew he'd like it and it would remind him of conor. I never go around to sending it, and the other day, he sent me the same song I had intended to send to him and told me everytime he heard it, it made him think of conor.
Kristy

Sunday, October 24, 2004 6:15 PM CDT

When you drive as much as we used to back and forth to hospitals in differnt cities for treatment, you listen to alot of music. As much to keep you from thinking as to make you think and have a good cry or scream or just plain beat the crap out of the steering wheel with your drum solo (right darren?).
Anyway on one particular trip from calary to wetaskiwin we listened to the entire Kylie cd about 100 times. Conor in particular loved the La La song("can't get you out of my head")also known as 'the robot song' as was "fever". The " Robot Song" was coined after darren taught conor the robot dance, which was perfect for long trips and car dancing. And no one was a better car dancer, especially doing "the robot" than conor.
So enjoy the La La song....
kristy

Friday, October 22, 2004 9:51 AM CDT

Missing Conor never seems to go away. Some asked me yesterday if Aidan was my only child, in order to avoid the whole scene and explaination and inevitable comforting and reassuring of some one I said yes. First time I did that. Felt like crap to do it. I usually tell the truth. No, Aidan isn't my only child, he has a brother who died nine months ago...I won't make that amistake again, not telling the truth. It feels so wrong.
The finger that the ring is on that conor gave me is red and sore. I am not sure why, its silver, like my wedding ring that I have worn for 5 years, and its never bothered me. I think I'd let my finger fall off before I took that ring off.
Somedays he seems so far away, sometimes like was all a dream some one I never met. Others, its so real, he's so real, like he's outside playing and is going to run through that door any second. He loved playing in the snow. He'd be having fun now...it started snowing last friday and is still hanging around out there. As you can see by the picture in the photo album, it was snowing pretty hard on conor's birthday. I was surprised the balloons even went up at all! We all wrote messages and tied them to the balloons. It was wonderful to remember conor that way. I snuck out alone at 5:02 (with the time difference between here and NL it was his birth time)and sent my own message to conor. I always would take him aside on his birthday, have a seperate cake if possible and tell him about the day he was born and all my hopes and dreams for him. I couldn't do that this year, so I stood outside in the snow with a blue balloon and told him how i missed him.
I had planned the day to stay as busy as possible. with going to the hospital to drop off the presents. That was hard, being there. Conor had spent the last two of his birthdays in there.But it felt really good to bring all those toys in. I asked the nurses not to put them in the prize cuppord or in the toy room but to let each child choose something. I hope the kids enjoyed them. Conor's table was moved from the main playroom to the day ward playroom and I can tell its being well played with and well cared for. The nurses said even the older kids love it.
We had friends over for dinner and cake. I had made train shaped cake, but in my rush to icing it and decorate it, it looked awful, so fortunately the girls, cassie and katie came to the resuce, redecorating it and making it look great. I am sure they had great fun adding all that icing and sprinkles, though I think more icing was eaten that put on the cake!
Thank you to those of you who contributed to the toy fund or who made a donation to various places in memory of conor. It means so much to me to keep his memory alive. I can't bear to think he will some day be forgotten. Thank you for remembering him in whatever way you do, even if its just saying his name.
I added a new song. its from a cd conor and I used to listen too and sing in the van. This song is about chocolate chip cookies being so far away that they can't be reached, Conor had this really high pitched way of singing it. I can't seem to sing it without him. when I listen to it now, it takes on a whole new meaning....

Wednesday, October 20, 2004 10:14 am

Please check out the new pictures in the photo album. They are just a few of the many balloon release for conor to remember him on his birthday. As you can see in the guest book there were many more.

Monday, October 18, 2004

Conor took his time coming into this world. He was due to arrive on the 8th of October 1999, but instead made his arrival ten days late on October 18th. Once he decided it was time, he wasted none of it and arrived in just three short hours. It seems quite fitting now, looking back that his birth was that way, it’s how he lived his life in the four short years he had. He did things his own way, on his own time and lived life- his life- to the fullest, passing through our lives with the speed and thunder of one of his much loved trains.
Today October 18, 2004 would’ve been conor’s 5th birthday, and today, as every other day he will be missed by us, his family as well as everyone that had the opportunity to know him and love him.
Today, on conor’s special day we would like to thank each and every person that was there for us throughout conor’s life, especially during his fight with leukemia and his death. The support of our community, our family and friends as well as many others, enabled us to keep our family together and be together as a family every step of the way. There is no way to single out people - it’s just not possible. So many helped in so many ways, each just as important and as meaningful as the others. Conor was a generous and loving person with a spirit that drew people to him and I believe those same type of people were drawn to him and its why so many came together to help him when he needed it.
If one thing is to be remembered today, on conor’s birthday, let it be his spirit -his joy in the little things, his love of life, his ability to laugh in the hardest of times, his infectious smile, and mischievous grin. Conor loved life, his friends and his home. He kept close the things that were most important to him and held on to them with all he had. Conor never gave up on anything and he won his battle the only way he could. He will be always missed and always loved. So take a moment today to laugh a little more, put on your favourite song and dance, let a balloon go in the sky, wave to a train and share some of conor’s spirit with those around you. Celebrate the little things today.


*******************************************************

The above is something I wrote last week to put in our local paper. I thought I would put it here because I am short on words today. These past few weeks have been an emotional tornado. How that is differnt from any other day I am not so sure...Today is very difficult, and we have invited people close to Conor to come share today with us. We will remember him with balloons and some of his favorite things. Curry, ice cream, chicken nuggets and fries. Not that we don't remember him with every breath, every movement, everywhere we turn...we are also bringing some gifts I bought into the hosptital to drop off, because on thing conor loved was presents! especially while in hospital :).
Conor was born at 8:32 pm, on Monday October 18, 1999. It was a cold,wet, rainy day. And only someone from Newfoundland can appreciate what I mean by cold wet and rainy, but that night I am sure the sun began to shine, and there was a rainbow like I had never seen. At least there was in my heart, and in my arms.
There was so much I wanted for him, so much I dreamt his life would be, and I can't believe he will never be 5...

Friday, September 24, 2004 5:46 AM CDT

http://www.realtimecancer.org/index2.htm

Please check out the link above. There are some pictures from the climb! The climb itself was incredible with a pretty big turn out. Aidan had lots of fun being pushed and pulled up the hill in his stroller (in the rain!) and even more fun coming down the hill walking, running, on the bus and in mommies arms. I met some great people, heard alot of inspiring, bittersweet stories of loved ones, and alot of inspiring success stories too. I am very happy I got to be part of the walk this year. Thank you so much to each of you that donated and helped me to raise $266 in such a short time!

Have a wonderful day.
kristy

Thursday, September 16, 2004 6:21 AM CDT

I don't know if you remember but last year while we were in calgary I asked those of you living in NF to walk the realtime cancer signal hill climb in support of conor. Friends and family did just that while wearing pictures of conorto support him and his Never give up spirit. I just found out that I will be here in NF for the climb and I have set up a page on the realtime cancer site for pledges and support. I will be doing the climb on monday september 20th, with aidan in memory of conor.

****I'm climbing this year at the RealTime Cancer Climb. I'm collecting pledges to support RealTime Cancer... and awesome Cancer charity focused on young people!

If you want to sponsor me, you can do it online with a credit card... just click on this link: http://php.realtimecancer.org/climb/climber.php?climber=conorsmom

Help me help RealTime Cancer!*******

Monday, September 6, 2004 10:44 AM CDT

Thank you for all your wonderful emails and interest in how to make conor's birthday special and wanting to remember him and hounor him on that special day. I have a list of some funds and charities that are special to me or conor for various reasons. If its something you would like to do - a memorial donation in conor's name would be very much appreciated. As for gifts etc. Rather than have individual drop off at the hospital etc. I will collect whatever any one wishes to donate and bring them in. I am not sure if its something I will be able to do on his birthday, it all depends really on my state of mind that day. Please email me for my address if that is what you would like to do.
Thank you so very much.
Kristy

www.kidscancercare.ab.ca

www.kidswithcancer.com

www.abcentralrailway.com

www2.caringbridge.org/index.htm

www.childrenshospital.ab.ca/giving.asp

www.chf.ab.ca

city.wetaskiwin.ab.ca/library/community.html

www.bloodservices.ca

** Please copy and paste the link as I haven't yet braved the world of adding working links to the page, I am still celebrating the music thing!**

Saturday, September 4, 2004 9:55 AM CDT

I stopped by the hospital yesterday to drop off the name plate for the Thomas table that was donated by RC2 (THE Thomas people, the makers of the wonderful toys :) -thank you!!)with LOTS of help from ALL MY TOYS (thank you, thank you Jennifer and Ray!). I felt really nervous and kinda scared going in. At first I thought it was because it was the hospital and it was stirring up all kinds of memories etc., which is true, but once there I realized it was something else entirely. I was afriad they would have forgotten. That I'd get there and everyone would look at me and go "And who are you?" That'd they'd have forgotten conor and if they did remember look at me and say "yeah well, that's all over now, isn't it? run along now, you don't belong here any more". but that wasn't the case at all! I was welcomed with smiles and hugs and lots of genuine warmth. Its hard to explain how the hospital feels like another loss too. I've read this from other parents as well. From the day of diagnosis you want nothing more than to get he hell out of that building and never see those people again, but something happens. you grow to know the people, the nurses, the staff. They become kind of an extended family. perhapss its differnt for families whose kids survive, but I don't really think so. I know families that still stop in to say hi, 1, 2, 5 years down the road, after treatment. They stop by to say "look we are doing great!" "look at my child, he's still beating this!" or to introduce new children or to show how their kids are growing. For me,I spent so much time there, these people (well most of them! haha) were a constant source of support. there was always some one there if needed be. For conor, for darren, for aidan for me. For a question, for a reassuring pat on the back, they udnerstood, they KNEW. Its hard, now that conor is gone, to lose that. These people knew him, cared for him, and for months on end were the only people we saw and had contact with. its difficult not to have them to grieve with now. I conor had survived would I have felt this way? Most definately! He would've wanted to be there to say "Look at me now!" And aidan grew up in there! Its nice to bring him in and show him off and see how amazed everyone is at how he's grown. I miss hearing how the other children and families are. Yeah, I still really really wish I'd never stepped a foot in that place and never walked this road, but I have and its hard to leave it behind. Being there I also realized it makes me feel good to be there! I feel close to conor and I feel the need to do something.
Conor's birthday is coming up in October and I'll be posting a list of organiaztions that you can make a donation to in his memory. I'll also like it very much if gifts could be made in his memory to the children at the hospital. Please email me and I'll send you my contact info that and I'd like to gather what I can and bring them in at once on conor's birthday. No obligation. It's something I am doing anyway, so if you would like to be part of it, please email me.
Thank you to everyone for continued support and for remembernig conor. Thank you for participating in the runs and walks, for donating platelets, blood and joining the bone marrow registry. It means so much to me. Thank you.
I added music to conor's site. Its "Never, Never, Never Give Up" from thomas and friends. The song has come to be a very important part of the soundtrack of conor's life. It is so much of who he was and always will be. Now that i know how to add music I will change the songs often to play music that Conor loved.
Also check out the pictures page for a picture of the name plate on the table.
kristy

Wednesday, September 1, 2004 10:11 PM CDT

The start of the school year. You should be out there with your thomas back pack all ready to go, a big grin and new cloths. everything bright and shiny and new. You should be running off and making new friends and learning new things and I should be counting the hours til you come home so I can hear all about your day of letters and numbers and painting and friends and be getting reports from your teacher on how you are just so talkative, but you are so smart and bright and intelligant and you have an amazing vocabulary and you really should move up a grade....I should be wiping out your back pack because you stepped on it and burst open your juice box and cutting glue out of your hair and telling you not to wear your new school cloths outside. I had always dreaded thinking about school starting. I wanted to keep you home with me forever I couldn't bear the thought of you so far away from me for so long...school! without me?
but here I am. the beginning of the school year. without you. and you will never come running through that door with paste in your hair and grass stains on your cloths and a happy face for work well done...
Miss you baby.

Tuesday, August 31, 2004 11:42 PM CDT

Aidan did the strangest thing tonight. I was sitting at the computer with aidan and he happened to see a picture of conor that I had put on the shelf the day before. It is an old picture from when conor was just over a year old. Conor is standing in front of the house we rented for a short time in Edmonton and he is wearing his salt and pepper fisherman's knit sweater. He has on a black fleece squid style touque with a black fleee scarf. I remember the day so well. It was the day after darren had come home from work and we were going out though I don't remember where. conor and I were outside waiting for darren and we walked up and down the sidewalk crunching the new snow. It was our first winter here and I was amazed how cold and how dry it was. It took awhile to get used to the dry cold air, conor and Laughed becuase our nostrils would stick when we breathed in...I had started the car to warm it up (It needed a while!) and when we got back by the car, darren was ready to go. I had taken several pictures and had put my camera away, but decided to take a few more. Which is when I took this one. Conor is just standing there, his arm slightly raised, he's not smiling, he's not frowning or laughing or anything. He's just being Conor. The exauhst from the car is behind him and you can see the snow and trees in the background. there is nothing extraordinary about the picture but something always made it stand out to me. Perhaps because the moment itself was like a picture for me. It is something I have always remembered clearly. Just an ordinary day. So perfect. one that normaly gets filed away and forgotten. I never did...hmmm I wonder...perhaps it was the day I got my new stroller. the green baby trend jogger I'd wanted for so long! yes i think it was...I was excited that day. It was before I had my licsence and darren always took the car to work so I was left walking everywhere. Which I loved. Yes, even in -30 weather conor and I walked We walked to the mall nearly everyday. He was a shopper like me! we'd shop, do lunch, throw pennies in the fountain, go to the pet store. On the way home we'd often stop at the park. It was exhilerating being out in such cold. we always had so much fun. I needed the new all terrain stroller to get through all that snow and ice. Besides it was pretty cool looking :). Its amazing how I can sit here to type on specific paragraph and suddenly I am flooded with memories and moments that steal me away and beg to be told. Even if that day wasn't the stroller day, it was a very good day.
Anyway, on to the picture. Aidan noticed it me noticiing it. I was thinking how I loved the picture, i was remembering the day, and my mind began to wander a little, this was nearly 2 years BEFORE conor was diagnosed, but I was looking at the picture thinking he looked a little pale and my mind started turning...could he have been sick even then? Impossiple? I had always joked how pale conor was. I always said he got that from darren's side of the family! So maybe that's all it was. but this is what I was thinking. He looked pale, could he be sick? Aidan picked up the picture and looked at it. He turned it around a few times, showed it to me and said "baby snow!" I told him it was conor and he took a good long look at it and started talking about conor being in the snow. then he turned it around again so the picture was upside down and he kissed it. "kiss baby's head mom" I smiled, and told him that was very nice to do. then he turned the picture back around to show me and said "kiss conor's head, hurt" and he kissed the picture again. He then did the same thing, kissing the picture and saying "kiss head hurt, kiss hands hurt, kiss eyes hurt, kiss chin hurt..." I was completely unable to say anything. I really have no idea what he meant by it. It just seem so strange that he would out of no where kiss conor's hurts away. Aidan is so caring that way. He even kisses himself when he gets hurt! If we bump heads he'll kiss my head better and I'll kiss his. He is so remarkibly caring. I always knew, in my heart that conor was an old soul and we'd known each other for a long long time. I know that. And I had been a little unclear with Aidan. I knew he and I were fairly knew to each other but he and Conor weren't. Sometimes I think they share the same relationship conor and I did. It was their bond that brought darren and I together. Aidan and I are still getting to know one another, but its getting easier. I see him at moments like that today, and I know that i am not the only one with this connection and this loss in my heart. Sometimes I feel aidan is just as close to conor as he ever was. You know how when children sleep they take on that impossibly cute, oh so tiny and looking like a little baby again? with aidan, when he's asleep he seems to grow! He looks bigger, his face seems fuller and even with his eyes closed his face appears so deep in thought, so serious and so wise. He always appears to be deep in thought. and there are times when I wonder where he goes when he sleeps. His personality is emerging more and more and I am ever anxious to see what else it is he has to teach me.
Conor. We miss you. I remebered today about the time we went out for lunch one day when you were little. We went to a buffet at an Indian restuarnt. You I don't know why that had popped into my head, but I remebered you sitting in the highchair being so cute and charismatic, drawing everyone around you in. It got me thinking about how you loved curry and I remembered that curry was one of the first meals I had when I was first pregnant with you. It was my birthday and your daddy had to work that night. I went to dinner with my brother and his girlfriend and we ate lots and lots of yummy dishes. Not long after thought it was also my first aversion! a few days later i had a craving for it and I had someone pick up some yummy spinach chicken and all kinds of other stuff. Well, it was a big mistake! That was the start of my puking stage. I think you were a year old before I could even stand the smell of curry again. It was funny how I remembered craving it so much at first, and it turned out that you loved it so much later on...and raisin bread! you loved raisin toast. that was the first thing I wanted and ate when I was able to do so!! And it turned out you loved it too.

Sunday, August 29, 2004 10:54 PM CDT

Oddly enought the most difficult part of today had nothing to do with todoy's date being 2 years since Conor's diagnosis. It rather strange, but I am ambivilant this particular anniverary. I don't know what that means, but some things you just have to accept.
The hardest part about today was getting irritated with aidan for jumping on my head and trying to nurse while standing on his head with his feet in the air, as I lay with him at bedtime. I tried all the usual tricks to get him to calm down and settle down, but nothing was working. Finally told him that he'd have to go to sleep all on his own if he didn't settle. Of course, then I had to follow through with the threat! I was the only one that got punished tonight I think! I took him in his room (which is still very much conor's room, I haven't had the heart to change it yet) and I put him in bed. He settled in with a few books, and began to read to himself. I stood holding my breath for what seemed like days as I peered through a crack in the door. He cuddled in, read, and called to me a few times. He even, for good measure, to make me feel somewhat wanted, threw in a little whiney cry. But basically, he closed his book, rolled over, snuggled in and went to sleep ALL BY HIMSELF! In his own bed. WITHOUT ME! How am I supposed to deal with that? He's not 20 yet, I am not ready for him to be sleeping on his own, in a bed, alone! On the other hand, I did get my house clean, my laundry put away, and caught up on some reading. 8 o'clock bedtime nightly would be kinda nice, that way I wouldn't have to stay up til 2 am just to have some me time. But ALONE!!! he's sleeping. Alone. in a bed. without me! did I mention that?!

Conor,
I miss you baby. We had alot of fun today at the train museum. I thought of you the whole time. Aidan went up into the cab of the train with jason and tristen and felicity. He sat in the engineers seat where you once sat, and he even peered out the window like you once did. He really had fun today conor. It rained while we were there today conor. It always rains when we go there. It makes me think you are with us. I love you billy. I miss you billy. Two years ago I was filled with such fear at your diagnosis. But I was also filled with HOPE. Its hard not to have that Hope any more. I have hope for other things, but not to be able to have hope for you to be better...that's so very hard. You are in my heart baby. I love you billy. EVEN THOUGH YOU STINK!!
Hey did I tell you today? I LOVE YOU.
Aidan picked up your picture in the hallway the other day, as we were leaving the house. He stopped, picked it up and said "bye conor" and kissed it. Each time he has a balloon he askes to let it go. "balloon go sky. Conor" he learned alot from you....remember how you used to sit on aidan's head an not let him up? well he does that to brooklyn's baby brother now! Can you believe that? I guess he figures with brooklyn being such a pretty girl and having all those barbies and stuff some one has to show ryan all that secret boys tough stuff! poor ryan even has a scar to show for it. I remember you picking aidan up by the neck and dragging him across the room. thankfully he hasn't remembered THAT!
I sent a kiss to the moon for you tonight.

Thursday, August 26, 2004 10:33 PM CDT

How can I say its not all bad? It is. But at the same time there is this inate ablilty to LIVE with it, to coexist with thie pain and this grief and to some how just be. I've gotten alot of emails and guestbook entries over my last post and to be quite honest I am not sure how I feel about them. Its hard to explain really. The emails I've gotten from "people like me" differ so greatly from others that aren't. How can I say this right? without offending or coming across as ungreatful for the caring and thoughtfullness and love and friendship I know is behind each and every one?
Parents of a child that has died know there are no words. They know nothing that is said or done can make a differnce in what I am feeling and their words are simple and offer comfort merely in KNOWING that they KNOW. They don't offer that it will get better in time. They don't offer advice or suggestions on how to work past it or get through it or find courage or hope or anything other than a bridge of understanding.
I want to talk about this so you do understand and know that sometimes its best to follow the lead of the parent that has lost the child. Talk if they want to talk, listen if they want to be heard, laugh if they want to laugh, cry with us, just be a friend. Like you were before.
Its a strange thing because somedays the attention is like a weight that is smothering me, its like leave me alone! Stop being so damn nice to me so damn sympathetic and so freaking coddeling! Some days i feel like I could run out and knock off a bank only to be patted on the hand with a 'there there, i know, you lost your son, you have a shopping/retail therapy habit to support...its ok". Others I feel I could stand in the street, naked, and screaming and no one would see me. I could stand there, with a bullhorn yelling and crying "I lost my son! Don't you people care!? How can you just go on living?!" But you do, and I do, because its what is meant to be done.
Yes the last entry can be taken many ways. How was it intended? I really don't know. It was written on a day when I needed to get my thoughts out, to deal with them, to see them, to make them real, to get them out of my head, because sometimes, even i have no idea what I am feeling or going through until its out there. Its cathartic, its rejuvinating, its a release. For days, I was walking around with all the pent up emotions after the autopsy report, living through days and anniversarys of good times and bad times and my head was filled with visions I want to block but can't because even the awful horrid thoughts of the things I've seen...they are still memories of my son and they are all i have. I still close my eyes and see the wonderful giddy silly loving and precious ones, but I have no control over what comes when. Even when I try to conjure up the good, its inevitably followed by something that reaches in an punches me in the stomach knocking the wind from my lungs and leaving me gasping. Even the beautiful ones lead to that, because in the end, he's always laying in my arms, all that he was...gone.
Aidan has kept me sane. Aidan has kept me going. Aidan has shown me in many ways all I need to do to keep my head above water. The other day we went swimming. For an hour we laughed, we played, we were mother and son, together. I feel joy, I feel alot of joy. I feel love and tenderness and every emotion. I am not a basket case (well, maybe that is debateable!) but there are days when all I want to do is stay in my PJ's eat ice cream and FEEL miserable. The only way past this is THROUGH this. Its why I've refused to take medication to get me past the down days, its why i've made alot of decisons. I have to live this. I have to go with the ups and the downs and the gut wrenching screams and the anger and the frustrations and the whys and the what ifs. It has to be worked out and walked through and each moment and each emotion lived and experienced. The same way you savor every moment of somethig good? its what I need to do with this grief. Take it inside and let it work its way through me. other wise it will stay there, inside and destroy me.
After I wrote that last entry I felt I'd come through and out of a dark place I was in. but i had to be there then. Since then I've been able enjoy again. Those dark places will come again, and I will let myself go into them in order to be able to get through to the other side. you know how when something good happens? Like say, your engagement or that first kiss or the moment you have that positive pregnancy test in your hand and for a minute or week or month...you have the biggest secret in the world? you know that feeling? you'll be going about your day and WHAM! there it is. Its sneaks up on you! that good thing..and for a moment, for an hour you let your self go there and relive it, that feeling, all the emotions that go along with it because you just have to. You could be at work, in the dentist, in the car, in mid sentence and you stop and you go there and you live in that moment. Well grief is kind of like that. It sneaks up on you when you least expect and reminds you that you will always have it. And sometimes you need to take it and relive it. So like reliving that wonderful moment in your life, when it sneaks up on you. You can't spend the entire day in that moment, there are times when you force yourself to forget but even in doing so, you always find a moment to REMEMBER. Grief, is always there. Even when you are smiling and laughing and enjoying its there. Those times you don't hear it. But then you do. If you ignore it, it will drag you down, if you go willingly you can control it.
Please don't take any of this to mean that I want your support of any kind to stop. Quite the oppisite, I need it. Parents like me need it. I just want to somehow make you understand that you are powerless just a we are to make things better. I understand the need to, I feel the love and kindness it is offered with. Just be there. Offer what you can, take our lead, take iniative, just be a friend. sometimes just simple things, thoughts are what are needed. I know there are days where well intentioned words leave me pulling my hair out. But there are days when I long for those words. Bottom line, understand that I don't understand and I have no idea how anything will affect me from one moment to the next.
The list I have posted above says so much. There are so many truths in that. Take the time to really read it and know that even that barely scratches the surface. Each person is differnt. Each grief is differt. Each moment is differt.
I wouldn't keep this site here if all of that support wasn't so important to me, I just hope I can some how make you see what kind of support it is I need. I know you only see a glimpse, you are not here on a day to day basis, its impossible to know all that goes on. Please know that just because I don't sugar coat the bad days doesn't mean there aren't sugar coated days. Or moments in the bad days. There are. But really, when there are, why would I want to take myself out of them to write about it? I'd rather sit there and stay in that happy place. Joy doesn't need to be worked through.

*********************************************************

Today something really special happened. Being in this caringbridge world it so easy to equate wonderful, amazing children with those children that are ill.Its easy to forget that even everyday run of the mill kids are extrodinary too. Today I was sitting in a Mall food court hurridly eating and alternating with my brother chasing aidan while he played in one of those toy cars that you deposit money in and get bounced around for 20 seconds. I used my only loonie to buy me time to purchase my lunch, while my brother (who has a badly injured knee and could not chase aidan, so a wobbling car was a great idea) watched aidan. Well aidan kept running to that car, and the nearest vendor wouldn't give me change, so we had to just deal with the car as it was and hope that aidan would still enjoy playing with it. He was, but he clearly wanted that thing to move! Then a woman and young boy I hadn't even noticed, came over to us, and the woman asked if her grandson could put his loonie in the car so aidan could have a ride. She said he had a ride earlir and really enjoyed it and he saw aidan wanting a ride and wanted him to enjoy it too. I was so unbelievably touched. To avoid a scene I kept my watering eyes and blubbering in check, but my heart was ready to burst and I was so choked up I could barely thank the little boy. I asked him his name, its Travis, and he is 4 and he is a very special boy. Its times like that that make me think of conor, becuase honestly, its something he would do, but not only that, its like he's tapping me on the shoulder saying "see mom? I'm still looking out for little willy". And also it was a reminder that all children are incredible.

thank you Travis for being so special and for having and incredible impact on my day.

And thank you everyone for always being here.

Kristy

Saturday, August 21, 2004 9:49 PM CDT

Perspective is everything isn’t it? Two years ago, I had a little boy with bruises all over his legs, who asked to be carried a lot and who sometimes woke in the night crying and sweaty and needing to be comforted or needing a glass of water. Those things could be explained very rationally. He was 2 year old boy. It was summer, he played outside, he fell of his bike, he tripped on the curb, he slipped on the steps, he wrestled with daddy, he just wanted to be up and carried, it was hot, he had heavy pj’s on, he had bad dream….now I look back and it all seems so obvious, so clear that he was sick and I just didn’t know it. Could be the case, or it could just be all the other things I told myself at the time. I’ll never know.
I have a friend who called me one day upset because her (absolutely beautiful!) 5 month old baby boy had lots of small bruises on one of his legs. And all I can think is “please don’t ask me what I think” because I think “LEUKEMIA” “CANCER” it’s what I see everywhere now. I tried to reassure her (HA! Yeah right, I was so obviously envisioning the worst case scenario I was anything but reassuring) but all I could think of was he was sick. He wasn‘t. Thankfully, he wasn’t. He got the all ok from the doc. Just bruising from pressure on his leg. Another friend’s little boy had high fevers for days, nothing brought it down, my gut was screaming I was so scared. He too was fine. An infection, it was treated. He’s fine. Thankfully he’s fine. My mind goes there so fast it’s amazing. I see no other explanation other than what I lived through, what Conor didn’t live though. I want to scream at every mom whose child has a bruise or a symptom “GO NOW! Go to your doctor demand a blood test, don’t be put off!! Scream if you have to!” All these little bruises Aidan has seem so sinister now. If he gets a cough or a runny nose or fever….my heart sits in my throat wanting to rush him to the nearest er for a full blood work up, yet part of me wants to run and hide and never see another doctor again.
I still think back to that day, 2 years ago and wonder if I’d never answered the phone would be have ever known, maybe it would’ve all just gone away. You never know the single moment in time that is going to alter your life. That pivotal moment where time stops for must a milasecond and the whole world turns and stops just for you but goes on just the same for everyone else. Sometimes it can be a good thing, like the day you met your spouse or the day you both called in sick on a rainy day and it’s the day your child was conceived or the day you are late for work and you miss the 10 car pile up you would have been in if you had left on time, or your one in a million chance of anything is winning the lotto, not being the mother of the child who gets a rare form of leukemia two weeks after his baby brother is born, when your life is perfect, and dreamlike and the vision you saw in your head since you were a little girl. That picture perfect, happy hallmark moment, that all gets blown away by a single phone call… so instead of stroller shopping for the newest coolest ride for your bundle of joy you are dragging your family through the hospital holding your child down on a bed while a team of ever so well meaning doctors and nurses try to figure out what the hell is wrong with him. “who knows, it could just be infection, we do see that” “go home, its not leukemia, we’ll call you when we know more” man did we run outta there! Not leukemia! that’s all we needed to here. At that point, we could’ve been told it was anything and been happy. Anything that even a day before would’ve been earth shattering. Then again, its all relative, the parents whose child is killed suddenly may wish “if only I’d known” “ if only I’d had more time to say the things and do the things I wanted to”. There is no way to compare or judge or wonder is there? It’s where you are and what you live and what you tell yourself just so you will get up each day. Any mother, any parent faced with illness or anything that can or does bring harm to their child knows, not any one of it is better. Somehow they all end up being the short stick.
But we got leukemia, 18 months of it tied up neatly in the end with RSV and a ventilator and little boy that fought so hard to stay with his mom and dad and baby brother. But no amount of strength and spirit or love and determination could save him. There was only so much his little body could take. That’s what we got. And having that time was wonderful. Having the time that Aidan bought us by being Conor’s donor was wonderful. Having Conor gone is not. People always say that facing cancer or death makes them see more clearly what is important in life. Hell Conor as a four year old had that figured out for quite awhile. I did too; I held it in my arms everyday. So far the only ways that this has changed me are not for the better. It’s made me tired and sad and not the mother I was or want to be again. It’s taken my son and my dreams, and its left me here with more questions and pain and grief and I am supposed to just keep going. I will. I have too much wrapped up in my duvet snuggled with his teddies, and puppies and feather pillow not to. I see the world so much differently. I see the shadows now, but I could do without them. I see darkness that I could do with out. I don’t see anything good I didn’t see before, I don’t see a reason and I still need a reason. We went last week to get the autopsy report. I got my reason. RSV. Well. There you go. All makes sense now doesn’t it?
Well what about THE reason? How this whole leukemia started? Where did he get it? Why did he get it? Where did it come from, what went wrong, where did it go wrong, what did I do/he he do/we do? Why him, why anyone? How? How the hell are they supposed to find a cure if they don’t know the why and the how? Drugs, drugs, drugs, more drugs, more chemicals, more crap. Its stuff like that in our air and soil and food that causes our bodies to malfunction, and it’s the best we got to cure it…how sad is that? We tried at one point to follow a strict diet for Conor, for all of us, to bring Conor to optimum heath before went to second transplant. We damn near starved to death trying to avoid chemicals, and dyes and additives and preservatives and crap in our food. It was impossible. Short of moving to a far off place untouched by pollution and some how finding animals and vegetables untouched my genetic modifications to raise on our own with a pure untouched water supply in a home made from natural materials…is that in your neck of the woods??
I don’t know where I am going with this. I really don’t. I sat down and this is what came out. It’s after weeks of seeing kids battle this disease and lose and it hurts. The victories are sweet. And I celebrate along with each and everyone one of them. Hell I still dream of BEING them! But the ones that don’t…you’d think by now my heart would harden and I could put it all away with a nod, been there, done that kind of crap. HA! Hearing of another child dying just tears apart all that I have built up and leaves me laying there on the floor once again.
I try, I try, boy do I try to find Peace in all of this, to find a little bit of comfort in how the world is altered by these exceptional children. But more so I can’t help but think of the incredible, amazing place this world could become if these kids had a chance to work their magic just a little longer.

Wednesday, August 18, 2004 9:00 PM CDT

Please stop by Jordan's site and offer his family your support. Jordan died today at noon. My heart is so very heavy. It seems there is no end to what this monster JMML will do. So many kids lately, relapses, long term complications, deaths, it just makes me so damn mad. I was holding on to hope so desperatley for Jordan. I wanted him to make it. Perhaps because his spirit reminded me so much of conor's, perhaps it was his beautiful eyes and that smile of his. Whatever the reason, it just hurts. Its not fair and I cry now for his mom, his dad and his baby brother who loved him so. His brother was his donor, just as aidan was conor's. These brothers have such bonds its so sad that they won't grow up together and be best friends...
www.caringbridge.org/ia/jordangrosclaude

Monday, August 9, 2004 4:50 PM CDT

Last night was one of those nights I fully intended to go to bed early and stay there! Aidan hadn't napped, and spent most of the evening playing with the girls until about 8:30 or so and I knew he'd go to bed fast and easy, and he did. So I planned on going shortly after him. Well first, I had to paint my tonails, and while I was doing that I heard a loud noise from conor's/aidan's room. It was clearly the sound of a bucket of toys falling to the floor. It was. I peaked in the room (Aidan was asleep where he always is, right smack dab in the middle of my bed, and it was empty (of course) and the toys were on the floor. I left them there, spoke to Conor for a few minutes, and went back to my pedicure. Not two minutes later I could hear something coming from the room again. I turned down the tv and listened...it was music from one of toys in the closet. It stopped pretty much right away, and for a moment was a little confused. Just as I picked up my nailpolish I thought of conor and the night his fisher price cookie jar was doing its best to terrify me. It was when conor was about 18 months old and this shape sorter cookie jar (gift from his nan and pop for his 1st bday...hmmm incendtly the same grandparents who gave aidan the toy that was making music in the room last night!hmmm The same cookie jar that scared said grandparents while they stayed with us last fall!) anyway, this shape sorter was a cookie jar with a face (freakish enough as it was!)and when you put the shapes in it it said what the shape was or the color or other phrases like "mmm good" or "i love you" this one night 4 years ago the toy was in conors room inside his play tent. I was upstair in the computer room while conor slept in my bed, next to his room. I could hear "MMMM GOOOD" and "I LOVE YOU" in this dragged out eerie voice. Being alone in the house it scared the crap outta me! I crept down the stairs and peeked on conor who was sleeping and then went to Conor's room to see what was going on. (as I am writing this the music is going off again!) I looked in the room and the whole room was glowing red from the toy's nose and the fact that it was iniside a red tent. It took alot courage, but I made myself throw open the tent flap ready to face whatever was inside...nothing just the freakish cookie jar smily face shape sorter glowing red repeating "MMMMM GOOOOOOOOOD" . I told conor about it the next day and we laughed. It happened later after we'd moved here too, and Conor and I always made goulish faces and laughed about it. I think that toy has been burried somewhere, so imagine my surprise when last night, and even now I hear another toy making itself known!
After that last night I was wide awake and alternated between the computer, reading, watching tv, talking on the phone and generally just thinking. By 2 am I was exhuasted. I was randomly flicking the channels, I ended up on a PBS channel and immediately sat up in bed. It was a program on home funerals. I never knew there was such a thing. The woman that was being interviewed called herself a death midwife and I was enthralled. What they showed were families, mostly of elderly pallitive patients, but one child's story was also shown, whom died at home and whose families kept them there. I know, alot of you make think that is morbid, but unless you have held your child in your arms and watched his last breath and felt his last heart beat, and last flutter of his eyes, you can't understand. As we held conor that night, even hours before, there was an air of excitement in the room. I have spoken of it before, I have compared it to giving birth, and it is, it was. The precence of life and death, of the soul of a person is so heavy and thick in the air, it fills your every pore. the energy is the same. Only the emotions differ in their meaning. Fear, love, joy, excitement, pain, longing, the unknown, sadness, pleasure, adoration, they are all present. Darren and I took care of conor after he died, we held him, we spoke to him, people came to visit, it was intense, it we even laughed and smiled. The most painful part, the part where we both broke, was when they came to take him away. Some one else now had to care for his body when it was me, when it was us, who cared for him for nearly 5 years. suddlenly we were no longer needed. Those hours with conor made all the differnce. Those hours helped me see that all of who he was, who he is was encased in that beautiful body, that body that failed him, but that shell was not him. It helped me see so much to have that time. I had no idea that I could've had more. If I had known, if there was a way, I'd have kept him with me in our home and cared for him and celebrated his life with those we loved, who loved him. People could've had time with him, could've had a part in his death as they did his life. More so, seeing so often, he was not able to be with so many due to his illness. The program made so much sense. The families that told their stories, whose most difficult moments were capture on film, more often than not, you could hear laughter as they decorated caskets and told stories and were all together sharing in their loved ones journey. There was pain, there was intense grief, but more then anytything there was an air of love, of acceptance and an ease that came from not being afriad. There was no unknown. With unknown comes fear. I believe these families grief was softened by the knowing, by the caring of their loved ones by their own hands. It felt natural.

Sunday, August 8, 2004 8:13 PM CDT

I put a new picture in the photo section of conor with Mr. Teddy. Mr. Teddy was a gift to Conor from one of darren's co workers, during Conor's initial chemo stay. Mr. Teddy became his constant companion, had a broviac, submitted to numerous procedures, surgeries, bandage changes, been pooped on, puked on, thrown around, lost, found, kicked, taped up, wrapped in plastic wrap, dragged around, slept with, slept on, farted on, food covered, dust covered, cuddled, loved and cherished by conor. So Mr. Teddy had the honour of being with Conor forever. Mr. Teddy's journey began and ended with Conor's. I miss Mr. Teddy and often wish he was here to give me the comfort he so easily gave to conor. I've searched everywhere for him, had friends search and well...no other Mr. Teddy's. I don't know his *real* name. I think he's a GUND. But I am not sure. If anyone has any idea PLEASE let me know.

thanks.
Kristy

Wednesday, August 4, 2004 4:14 PM CDT

****PLEASE VISIT JORDAN'S SITE. WWW.CARINGBRIDGE.ORG/IA/JORDANGROSCLAUDE - JUST KEEP SWIMMING JUST KEEP SWIMMING ****



Six months today. Can you believe that? sometimes it seems like just last night, others like it was years ago and sometimes like he was a dream, a wonderful dream that ended in a nightmare...even as horrible as it ended, I wish for that same dream every night. I'd take anything now.
Sometimes I feel as if the whole world has forgotten him, and its my fault because I haven't done any of the things I promised myself I would. Not so much promised, but knew I would do. I wanted to DO, I wanted to ensure his memory lived forever and I wanted to make changes and help and held him leave his mark. But I got overwhelmed and insecure and confused and each day is just another day I've let him go unnoticed. I wanted to start a foundation for families, a support system, be a voice for the kids who aren't like conor and don't scream out loud what they want, who don't know that they can demand to be heard! I am surrouned by negativity lately and I put it there! Its so not me! Me, always seeing the silver lining, always hoping, always seeing the good, the best, knowing things will get better, be better. I see so little hope in my life.Isn't that sad? Poor little Aidan is such a nervous child, and I made him that way by being crazy and neurotic and not allowing him any freedoms. He couldn't go places, he couldn't play with other kids, he could be adventurous because conor couldn't. There were infections and germs and bruises and bleeding to worry about! Now aidan has to live with all that! I can't stop acting like the mom of a cancer kid. I stil get disgusted in public places, and nervous in large crowds and freaked out by runny nosed kids. I have no reason to be. Aidan will get sick and get over it.

Its raining again today. More thunder. More lightening. I love it. It feels more peaceful than the sunshine.

Yesterday was actually a very nice day. Aidan and I spent the afternoon at the West Edmonton Mall. For those of you that don't know, it is one of (if not THE) world's largest mall. Indoor beach, amusement park and every store imaginable...sometimes 2 of each. We went on a few rides, had lunch and really enjoyed the afternoon. Unfortunatley after lunch aidan fell asleep in the stroller and I was forced to shop for hours...really I must find something other than retail therapy. Though I am sure the GAP is suffering from my lack of partronage. The GAP was conor's store. Walk into any store and take a look a the young boys section, the manequins. The sloppy pants, and long sleeve T's under dress shirts or short t's. That's conor. His look. everytime I walk in, I gasp and get that punched in the gut feeling. I am sure I freaked more than one bubbly teenager out by standing the middle of the store staring at a manequin and crying! Oh well, what do they know? they think that pointy toed shoes and tighted legged jeans with leg warmers are all the rage! Ha! been there done that! I know how silly it'll looking 20 years :). Though I am thinking of bringing back my teased hair and rocker chic look! Blue eye shadow, lots of black eyeliner...could be fun. Conor would've been the first one to laugh. (BON JOVI FOREVER!!)

Really though, there must be some kind of support out there I am missing. I need to find it, need get working on something. There are camps for cancer kids, camps for families,camps for siblings...what about camps for bereaved families? I could sure benifit from a week away in the mountains with families who know my world...hmmm, perhaps that could be my project?

I'm babbling, I know. Rainy day, too much coffee, missing my son, aidan my beautiful, beautiful 2 year old boy is sleeping. My house is clean. My mind is a mess. I just feel so isolated. There are days the phone doesn't even ring. (ya I know, welcome to my pity party!) Well those damn student loan people call everyday, how nice of them huh? Wish they were as accurate with their paper work as they are with there demanding phone calls. But that's neither here or there. I need to do something, I guess I feel I am not working towards my purpose. My eyes are open. Somedays I just want to hide, but I know that isn't the way to go.

I read something on Julianna Banana's site today that really got me thinking (and using her guestbook as a therapy tool!). Her dad said he'd been talking to a friend about a few of the CaringBridge kids and his friend asked to change the topic b/c it was too depressing! TOPIC? DEPRESSING? crap. Try living it. It just made me think of all the people in my life that reached out to me. THANK YOU. And all of those that ran away or watched from the very distant sidelines. I know it was hard to watch Conor be sick, I know it was hard to watch him die...I know it may have been hard to watch my family go through all of this. But the fact that you weren't there, made it harder. I understand, but it still is very very hard to comprehend. I've grown so close to people and feel like some of my closest friends, I never even knew. Its something else that makes me sad. yes, a little sad for me, but sadder still because they missed out on knowing conor.

Kristy

Monday, August 2, 2004 6:45 PM CDT

I would like you all to please keep my family in your hearts right now. There's been so much going on. I'd ask if you could keep them all in your thoughts and prayers or what ever it is you do. It would mean so much to me.
My great aunt on my dad's side was hospitalized last week and could use lots of support.
My cousin's young son died this passed friday after a very long, very couragous battle with Juvinelle Rhuematoid Arthritis. Nicholas was an incredible boy, sadly I did not have the oppurtunity to know him, only through others but I know how great he was. I know how his parents must be feeling.
My great grandmother died today. She was 100, or pretty close! She always told my mom that when her time came not to mourn her because she'd lived a long life, and was ready to go where she belonged. I am happy she has found her peace. Its been a very long time since I last saw her, when conor was just 4weeks old. I am very glad Conor was able to meet her.
There has been alot of bad news lately, it seems to be everywhere. A few of the JMML kids are having difficult times, there a several family memebers I am worried for health wise and those who have lost their loved ones. Its hard to sit and watch it all from a distance.
I keep focusing on aidan. My little crazy willy will be 2 tomrrow. His birthday brings so many emotions, I am trying to concentrate on one, the joy I felt the day he was born. So much that followed his birth is a blur. It was only 2 weeks later Conor was diagnosed. Last year it was the day we celebrated conor's 100 day post transplant. This year it marks 6 months since conor died. Aidan deserves a wonderful fun filled day. A special day, and I plan on giving him one. A day a the amusement park or water park or just letting him do whatever he choses. He is after all a big boy of 2 now! Such a beautiful boy.
He counts to ten with very little help and to twenty with a lot of it :). He knows most of his colors and loves to paint his toes purple. he is very affectionate and loving and is the moodiest child I have ever met! (must get that from his dad!!haha) He's learning to do puzzles and loves to color and play trains and dinosaurs. He loves ice cream and frecch fries, red grapes and cheese. He loves girls and I don't think he has a single boy friend! all of his friends are older women. He a smart boy :). My heart aches that he dosen't have his brother to share his life with but he is surrounded by people that love him so much. Even if he does have an evil laugh and a mean right hook!
Happy birthday Aidan. we love you.

Sunday, August 1, 2004 2:12 AM CDT

I tried to write in my private journal but nothing would come. Here it comes so easily. Here I feel conor's spirit,I know he hears me.My tears tonight came in a wave so forceful the only thing that comes close to describing them is the waves of contractions in the last stages of labour. The uncontrolable urges. The waves of pain gripping me, my body doing what it needs to do...only then, only then I got to hold my beautiful boy to my breast. And now I am left sitting on the cold floor alone. My mouth opens to scream and no sound comes out, my stomach cramps and my eyes are blurred. I just want my son. I want aidan to have his brother. I so want aidan to have his brother. When we see a train pass, we sit and watch it, Aidan always waves and says "choo choo" "Hi train" "bye train" and "I Love you COnor" Its the only time aidan says I love you.
Why today, why is it so bad today? why is it not getting easier? why can't anything bring him back? why doesn't anything ease it?
In an interview alanis morrissette said some thing along the lines of "I am finally thriving. For a long time I was just surviving. Doing what I had to do to survive. But I am finally thriving. Survival mode sucks" I couldn't agree more. It does. I've been in survival mode for a very long time. I can't see it ever changing.I can't see getting to the thriving part. My usual response to the dreaded "how are you doing is exactly that. Surviving.
Went for a walk with aidan yesterday. We were at the school yard where conor loved to go. I asked aidan if he remembered being there with conor this past winter...aidan walked away from me and up the hill and sat down and began to slide...he remembered. He ran towards a tree and we played peekaboo. I could smell the bark and the sap of the spruce tree and I could smell conor. I'd forgotten that smell. We has our trees removed last year, but before that our yard and conor always smelled of spruce trees...
Conor, I can hear the wind chimes...
Aidan loves his new cranky very much and we've played dinosaurs lots. He loves dinosaurs "ROAR" and "CHOMP CHOMP" he says...he combes my hair and kisses my cheeks. He loves to have water fights with the girls.
He makes surviving seem like thriving.

Friday, July 23, 2004 8:19 AM CDT

Hey Conor!
We took aidan to see the DINOSAURS yesterday. It was fun! His favorite part was seeing the prehistoric ocean. The room was dark and the floor was glass and underneath was all kinds of sea creatures. The floor lit up underneath and we listend to stories about how the ocean creatures lived. When Aidan first walked in he was scared and was afriad to walk on the floor,but then it lit up and he could see all the creatures underfoot and he said very quietly, very amazed..."wow".
Later we drove around and we saw a suspension bridge, that was fun too. Aidan was sleeping in the van then so daddy and I took turns walking across it. It was kinda scary but cool. furuther up the road we stopped to see some rock formations called Hoo Doo's. I think you would've thought was was pretty funny. Aidan was sleeping then too! The name reminded me of that stupid (yes I always thought that was stupid!) show you watched on treehouse MEDOO. Ugh that ridiculous monster thing with the green hand that clapped and said "ME DO, YOU DO, WE DO." How you'd always mimic that ridiculous thing teasing me, clapping your hands acting silly saying "ME DO, YOU DO" So yesterday as I walked around the HOO DOO's all I could think of was you, running along beside me saying HOODOOMEEDOOYOUDOOWEEDOO....I could see you clapping your hands so excited. It was like all the times we were alone together and you'd get so excited and say "its just you and me right mom?" you loved our alone time together. So did I. I cherished every second of it.
Aidan and I are doing ok. We spend alot of times butting head lately. Boy oh BOY conor, that aidan sure is headstrong and strong willed and well a big old pain in the butt sometimes! Haha! But I am glad. So glad. Sometimes it all gets muddled in my head and I picture you as this perfect little boy, who was no trouble and was perfect and agreeable all the time! But you know what? YOU WEREN'T! I can remember you being the BIGGEST pain in the butt. LIke when I was first pregant on aidan, all I wanted to do was sleep. Puke and sleep. I'd lay in bed at 6 in the morning BEGGING you to go back to sleep. But no, you'd jump on me, pull my hair, dig your elbows in my face ( you taught aidan that one I know it!) and do what ever you could to get me up. I love you for that. Made me realize that I did feel somewhat better once I got up. Perhaps thats why, later when you were sick I did the same to you. sure you could lie in bed all day feeling miserable. but once you got up and showered and got dressed you always felt better and we were able to play. See, you taught me alot. you even taught me how to take care of you...
Aidan's party is soon. We are just having some friends over for a little party. I am really looking forward to it. Lots of goodies and fun. His real bday is on the third of august but we are having his party early. I'll do something special on his real birthday. Just the two of us. Like you and I used to do. I loved our time on your birthday when I gave you a cake and candles to blow out just the two of us, at the time you were born. How I'd tell you the story of you...I can't wait to do that with aidan. Last year in all the confusion it got rushed and pushed aside. this year, it will be a wonderful celebration.
Its not all bad, its not all good, it just is. Life just simply is. I long for carefree, niave days, but they will never be again. I long for you conor. I long to understand. I don't. I just miss you. I love you. I do smile. I do laugh, I do have fun. Aidan and I get pretty silly sometimes! I love that little Willy. He gives the best hugs. Just when I need them the most. And you know what? some days, he elbows me in the face to make sure I get out of bed...
Momma

Wednesday, July 21, 2004 8:12 PM CDT

It still hasn't gotten any easier. In fact sometimes I think it gets harder each day. Nothing seems to really matter or make sense any more. Its like every dream, every wish, every bit of hope has been ripped out of my life and I am stuck with reality. Reality, really sucks.
Aidan's birthday is coming up. Last year was a big celebration. Aidan turning one, having just been through so much, done so much. Our HERO. Still a HERO, still an amazing boy, but so much of that gets lost in my grief. Its so difficult to celebrate this year when things are so empty. Aidan deserves to be celebrated. He deserves this speical day, more than ever.
Conor, Mommy misses you.
I keep saying I am going to stop this site. That its pointless, that I hate the attention it puts on me. Before it was about conor my thoughts and feelings were just a part of that. Now it seems the focus has shifted to me and my feelings about conor and that makes it difficult to write anything at all. Then again most of the time I can't put any of this into words, or I don't want to, or I can't...but I don't stop because here I feel Conor. I see him, i know he's close. I come here countless times a day, sometimes I even shock myself to read he is gone...
I see a van sometimes, just like ours. I see it pass by. Darren used to joke that sometimes he'd think it was me driving and go to wave, realizing that he was driving our van, so it couldn't be me! we'd see it when we are driving together and wave to ourselves... I see it now, and I wonder, IS that us driving in it? fully intact as a family? On some other level, some other plane of existance? driving along, our lives untouched by all of this?? Our two boys buckled in the back, fighting over who is touching who and which movie to watch. Could that be us?
Kristy

Sunday, July 11, 2004 11:52 AM CDT

It was a year ago this weekend we came home from Calgary. Full of hope and excitement for the rest of our lives. Full of hope for Conor. We spent so much of that time trying to make everything here perfect for him that I am afraid we didn't spend enough time just being with him. We were so worried about him getting sick from being around people or digging in the dirt or just doing normal kid stuff that he didn't get to do much of anything or see many of his friends. At least he was home.
I keep staring in the mirror at myself trying to find some trace of me, of Conor. Trying to somehow see how it is all possible. Where he could've gone, why I couldn't keep him, or save him. Part of me created him, where is that part and why can't I see it? I can't even see me. I have no idea who this person staring back at me is. I stare into my eyes, sometimes talking to Conor, hoping some how he is there, still part of me and can hear me. He was such a part of me that I feel incomplete without him. The air around me is thick with his absence. The emptiness is palpable.

Thursday, July 8, 2004 9:07 PM CDT

Today was beyond wonderful. I don't even know where to begin to thank everyone for making today possible. Jennifer and Ray from All My Toys, the people at RC2 (The thomas people), childlife at the stollery, all the kids for coming out and playing and having fun! It was amazing. It was so bittersweet to have everything conor loved right there...no one would of enjoyed today more than he. I could just see the look in his eyes, the sparkle, the joy. He would've clapped his hands and made that ridiculous tongue hanging out panting face, while chanting "Thomas" and "YEAH YEAH"...
I can't think of a better way to honour his memory and spirit than what took place today, and seeing that playtable all set up in the playroom with kids gathered around it, was truley seeing conor's spirit.

here is the link for the pictures from today.

http://f1.pg.photos.yahoo.com/ph/kristydarren/my_photos

Enjoy :). I'll update more when Aidan winds down from the overdose of chocolate from today!

Kristy

Tuesday, July 6, 2004 10:52 PM CDT

From the moment Conor saw Thomas the tank engine he was hooked. I keep trying to remember how it all started, what was the moment, the first Thomas book or video or train, what sparked it. What I remember is getting the Thomas book “Thomas and the school trip” with a collection of other books when Conor was an infant. We read it often along with several other books that he loved. “Are you my mother” and “peter rabbit” and “the going to bed book” and the “oops” book. He loved the Thomas book where Thomas stopped for Bertie and took the children home. He always laughed when the cows were on the line and when he could see the driver’s hat blowing away. So it started there with that book. I remember him being in awe of the train at a museum in Ottawa. I have pictures of me holding him next to an old steam engine; he wasn’t even as tall as the wheel. That same day we sat on the grass and watched a train go by. He laughed and clapped…A few months later when we moved to Edmonton I bought him a plastic train at the dollar store on one of our many mall trips. It was yellow with a red smoke stack and red wheels. It pulled 3 other cars with different shapes in them. He quickly built up a large collection of them. He would play with those trains for hours. He had so many toys and his favorite was a $1 train. One day in April we were yet again at the mall, hanging out, playing with the puppies and having lunch. He loved to shop with me. We were like a couple of teenage girls. Our favorite place to hang out was the mall. We were in Wal-Mart, I was dropping off some film. I remember the day, I can see him lounging in his stroller, full of cookie or ice cream. He was smiling and taking off his shoes yet again. “train, train” he said as he sat up in his stroller and started reaching for a video on the shelf. It was Thomas. “track side tunes” . He held the video all the way home looking at the cover. I put it on and he sat enthralled. The video is made up mainly of songs and the first one is “ Donald’s Duck” all the videos have the lyrics on the bottom of the screen and a little white cloud that bounces on top of each word as it is sung. He stood in front of the TV and danced, and all the while his head bounced up and down with the little cloud. Soon there were more videos, trains, the figure 8 set for his birthday and his love for all things Thomas kept growing. My living room floor became an obstacle course of track, trains, buildings and a little boy laying on his side chugging along.
Thomas wasn’t just a toy. Thomas was everything to him. Its how he learned his colours. Thomas is blue. Percy is green, James is red…his numbers Thomas is number 1, James is number five, diesel 10.…It encouraged him to read, to sing, to dance, to discover. He learned about magnets and polarity, he learned to figure out how to connect tracks and make layouts and how to make storms and crashes and derailments. Through the stories he learned about friendships and helping and the importance of listening. He learned life lessons without realizing it. He learned that little engines could do big things. He learned to never give up. He learned that things go bump in the night, and he learned that things aren’t always what they seem. He learned to roll his eyes and to say ‘bust my buffers’. He learned as he played and he had a friend in Thomas when he needed a friend. He took those trains with him everywhere. It was because of those trains we learned he was sick. He carried them in his backpack which caused bruising which led us to take him to the doctor. All the while in the hospital Thomas was his comfort and his distraction. I learned how to phrase things in a way he could understand often using lines from the movies to encourage him and explain things. Thomas was there with him everyday in the hospital in one way or another. He had the trains, his track his books, his video, his suitcase, his bedding, always. He loved the troublesome trucks and Toby and Percy and James. He often used his trains to act out what he was feeling and it helped us to help him. One of my favorite memories is of Conor and I driving in the van, listening to his new (at the time) Thomas CD. We listened to James the splendid red engine and car dancing. Later we played that CD during his bath time in the hospital. I would turn it up, he would play in the bath and we’d sing along. I remember lots of water fights to that CD. I remember us encouraging each other when times were tough by singing “when something seems impossible, answers hard to find, no matter how improbable you never know until you try, so never never never give up!”
Thomas meant so very much to Conor. He passed that love on to his little brother. And so it means a lot to me. Not long ago I contacted a toy store near us (All My Toys, in Beaumont) that I took Conor to when he was able to be out. One of our first big outings last year summer was to there. I asked them if they could help me buy a train table for the Stollery Hospital in Conor’s memory. What I got was so much more than that. The store contacted the makers of Thomas, RC2, and they were so moved by a little boys love for Thomas that they donated the entire play table, play board and two boxes of trains. All the track and buildings are included and assembled on the board. This will be donated in Conor’s memory for the playroom on the oncology ward. What is even more exciting is the store also has a BIG Thomas. I actually have a picture of conor in it from last year when the same BIG Thomas was on display in a store in Calgary. We are having a “Thomas the tank engine day” for all the kids in the stollery on Thursday. There are colouring sheets, and Thomas pictures being taken, train tracks to build, and lots of trains to play with. I am so very grateful and so very excited that Conor’s memory and Conor’s spirit will be remembered this way. Thursday is going to be a fun day, its also going to be an emotional day for me, but one that will no doubt leave me smiling. THANK YOU to everyone who made this possible.
There is so much of Conor in Thomas. I see his facial expressions and his favorite sayings when I watch the videos now with Aidan. Thomas was so much more than just a toy; Thomas was the best friend to a little boy who needed one more than anything.
Kristy

Tuesday, June 29, 2004 7:47 PM CDT

I remember how Thunder storms would always make me happy.How I would run outside and put my face to sky and enjoy the rain. I loved the lightening and the louder the thunder the better. I remember watching the most amazing thunder storm in Newfoundland from the window of my apartment that over looked the harbour. the lightening seemed to dance on top of the ocean. I remember Conor and darren and I getting caught in a huge storm on our bikes and conor throwing his hands and his face to the sky laughing at the rain and clapping his hands at the thunder and lightening.
I remember being 9 months pregnant with aidan and having lightening storm for what seemed like hours. There was no rain and no thunder we could hear but the lightening lit up the sky in the most extraordinary way. I remember conor, darren, myself and conor's nanna watching that storm. I remember reading "storm in coming" over and over because conor loved it so much. I remember last summer rushing out to the van to drive somewhere to watch a storm. we drove around a few differnt places in the hardest rains I have ever seen and conor just laughed and clapped. He wanted to get out and run around in it. I remember driving home from the hospital and stopping to watch lightening in the distance. It used to always make me happy. The rain would make me feel alive. Now it just makes me want to sit an cry. I feel conor's absence and I feel his presence in the storms. I makes me miss him...
Kristy

Friday, June 25, 2004 0:32 AM CDT

Conor,
Aidan and I were driving home from Brooklyn's tonight and I turned the wrong way coming home and we had to cross the train track to come to our street. I'd been listening to the radio and thinking of you and missing you and remembering you. I was thinking of how lucky I was to have been you mother and how lucky I was to have loved you and to be loved by you. I was thinking of how sad I was missing you. As I changed lanes to make the turn to cross the train tracks I heard a train coming. I had time to not change lanes and go straight and turn further up and avoid waiting for the train to pass. But I didn't. I turned, and we sat in front of the tracks as the train passed slowly by. There were 2 engines, and lots of freight cars and tankers but no caboose. It was a long train and I remembered how you and I would sit on the corner and count frieght cars. So we did. Aidan even counted to 10 with me. Its how you learned to count too. Sometimes I find myself not doing some stuff with Aidan, because it was stuff I did with you, but we did so much fun stuff that I'd hate for Aidan to miss out on all that fun. We always think of you, always laugh for you and sometimes cry for you.
As we watched the train pass and as we counted the cars I could see so many other people turning around and taking different routes so they wouldn't have to wait for the train to pass. I couldn't help but think of what they were missing.
I love you Billy.
Momma
P.S. did I tell you today??? I LOVE YOU


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Please take a moment to remember Caitlyn. www.caringbridge.org/il/caitlynbussie
I find it so difficult to find any words to convey my sadness. I can offer her family no comfort, because there is none. Please stop by her webpage to offer her family support and keep them all in your thoughts and prayers.
Kristy

Sunday, June 20, 2004 10:53 PM CDT

Happy Father's Day Darren. Please know that today, like every day I love you and your boys love you. I remember when we met, and when we got married, I thought then I couldn't love you more. Then I saw you holding our son in your arms. I saw that look of pure joy and pure terror in your eyes. I loved you so much then. Even despite your taking a break to eat a hamburger during my labour! I remember every second of the moments you first held conor in your arms. Your obvious love for him and your fear you wouldn't live up to your expectations of yourself for him. But it was easier than you thought...all you had to do was love him and he would teach you the rest. I remember so clearly you looking at me, holding conor not long after he was born and saying "I don't think I can do this". Well you did. You did it. You did it so well. You became an extrodinary father, a daddy that your boys loved to be with and laugh with and be crazy brothers with. You always come up with the best games and the funnest things to do. Things that leave me shaking my head. Like the time you tucked conor's feet into the back of his underwear and decided to leave him lying there. He laughed and screamed and cried and wanted to get out so desperately, but you were laughing too hard to help him. So I got upset and helped him get his feet out, ready to comfort my baby. but instead he ran to you and said "more daddy" lauging and playing...

When Aidan came along I watched you grow again. I watched you become even more of a father, and a caregiver. For all my times with conor in the hospital you and aidan had so much one on one time and it shows. It shows in the bond you have. you did things for him I could never do. Like get him to sleep for the night. You were there for so much more of his days than I was. You slept tangled in his arms and legs. You took over his needs where I could not. The way aidan runs to you and hugs you, holding you tight...its so real

You are an incredible father darren. I don't know why things happened the way they did. I don't know why we had to lose conor. I don't know why. I can't explain any of it. I know there was so much time when Conor was young that you were away, had to be away working. But the past two years, you were here. You were here every moment for Conor and for Aidan. You were a dad to them, and a friend. Who else would stand in front of the swing and get kicked in the butt over and over? who else would eat paper cups and plastic cups so his son would take medicine? who else would teach his 3 year old son to drive a car? Who else would take his infant son and walk the hall all night because he didn't understand where his mommy and brother were? who else would've came up with the crazy drink and a million ways to make his boys laugh and smile.

Conor loved you with all his heart, and that love will be within your heart always. Aidan's hugs and his smiles when you are near say it all, he loves his daddy so very much. I hope you know how proud i am to be the mother of your chidren.

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Today was an another great day. The family walk and run was so much fun, and even more money was raised for the Cross Cancer Institute. A BIG BIG thank you to everyone that donated to suppor the Short Cut to the Cure and the Short Cut through The Park. I was able to raise nearly $600 and I so greatful to those of you that helped me do that. And not this those of you that donated to me directly in memory of conor, but to EVERYONE that took part and raised such an incredible amount to support such a great cause. Every dollar raised is matched by $8 in grants!! and that is ALOT of money to be raised for one event. I was so proud that I was there to take part in such an incredible event, and that today was dedicated to my wonderful son. He may not have been able to beat his cancer, but he did give it a good butt kicking and hopefully one day through such continued support cancer WILL BE KICKED IN THE BUTT for good.

At the end of the walk, there was a balloon release. Everyone was given a balloon and got to write a special message to conor or to another loved one they wanted to remember. I sent special balloons to conor and other angels we have met on this journey. I also sent a special balloon asking all those angels to help a few very special kids that need all the support and love and prayers the can get right now to help them fight this disease. Conor was remembered today, but so were so many others.

Kristy

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Conor. I missed you so much this weekend. Everywhere I saw you, everywhere I missed you. Last year your smile and laughter lit up the stage as you shaved heads, this year your spirit was there in all of us, but baby, it still didn't make me miss you any less.

Momma

Saturday, June 19, 2004 3:41 PM CDT

********** 50 THOUSAND DOLLARS***************
That's how much was raised today at the SHORT CUT TO THE CURE. that is so awsome. The event was so great, with alot of young kids involved shaving their heads or donating hair. Carolyn surprised me by calling me up on stage and presenting me with a beautiful picture of the water tower with a plaque that says "coming home" because conor always knew he was home when he saw that water tower. I wasn't able to voice any words, but I am so touched to have been given something so thoughtful. SOmething that represents so much to me. There was also a video tribute to conor played, and carolyn was presented with picture of Carolyn, Brendan, and conor with balloons and...gosh, I can't even begin to describe how beautiful this picture is. Its a pencil drawing and has to be seen to be appreciated!
We has so much fun in the parade today. Aidan pulled the wagon full of candy while other kids ran around with large scissors (cardboard!) and pretended to cut hair. Unfortunately we ran out of candy way too soon, but we all had fun anyway. Conor's pick up truck was driven in the parade and everyone of us wore our conor ford picture buttons and short cut to the cure t shirts.
The family walk/run is tomrrow which I am looking forward to! After the walk there will be a balloon release as well.
More tomrrow...
Kristy

Thursday, June 17, 2004 8:29 PM CDT

You don’t have to be special or exceptional to get cancer, that is true. But it takes some one special and extraordinary to take that cancer and fight it with everything you have. To live every moment and to celebrate each day. It takes some one special and extraordinary to create a legacy from their cancer.
Conor was one of those people. He was a young boy but a very old soul that had a lot to offer the world.
In the body of a little boy but in the spirit of a hero, he fought his cancer and let his voice be heard. He wanted what all little boys want, to play, to laugh, to dream, to simply be…nothing was able to take that from him. Not even cancer. He still found time to smile each day and to laugh. But more importantly, he found time to make others smile, laugh and feel loved.
Through Conor the world was made just a little bit smaller and people from all over the globe gathered on his little piece of the web to help him on his journey. His community rallied, and supported his family. His friends and family as well as strangers all took part in his life, his journey by reading it day after day. Each person grew to love my spitfire of a little boy with the mischievous grin and their hearts opened to him. Through him, people became aware. Aware of their own lives, of their own children. Aware of love and celebration of joy. Through him people learned to take just a little more time. Just another minute to say things that had gone unsaid or hug a child just a little longer. People learned to play a little more often and to live the life they have.
Conor was just an ordinary little boy, from the outside. But once you opened your eyes and your heart to him you could see he was so much more than that.
No, you don’t have to be special or extraordinary to get cancer. It can happen to anyone. It just takes some one like Conor to make you see that.

Tuesday, June 8, 2004 9:35 AM CDT

Oh my wheels and coupling rods!
Bust my buffers!
Make the most of tonnight twinkle toes, because you won't like tomrrow!
Mr. Kahuna!
On On Faster Faster!!
Little engines CAN do the biggest things!
Peep Peep!
Bouncing Buffers!

Conor, do you know that Thomas has quickly become Aidan's favorite? Last night we watched "thomas and the magic railroad" for the first time. He loved it! He ran downstairs and got disel 10 and started chasing thomas with pinchy! Remember the christmas you were 2? you opened lady first and you were sooooo excited! shortly after (well after about 100 other gifts) you opened Disel 10. you looked so afraid! You jumped up, ran to your new play kitchen, picked up the phone and yelled into it for thomas to save lady from disel 10!! Oh how cute you were so concerned for lady! Then that very same day we lost lady at christmas lunch. you were so sad when we couldn't find her anywhere. Everyone searched for her. aunty rosie, fred, cathy, and everyone else at dinner that day! No lady. Eventualy we were able to get you another lady and you played magic rail road all the time. your favorite thing to do was push disel over the via ducts! "oh nooooooooooooooo" you'd say. You always laughed so hard at the "make the most of tonight twinkle toes because you won't like tomrrow!" and gasped for fear for lady when disel showed up.
Aidan really likes watching Thomas christmas too! He loves the one where the frieght cars pull on the coupling chain, braking it and causing an avalanch! He laughs so hard when they uncover skarloy and his driver drinking hot coaco!! He always gasps when the frieght cars go over the edge in the snow. Those troublesome frieght cars! Remember how you played that one over adn over and over again? And our livingroom was covered in 'snow'? at first you empty everyone's sock drawers to use the socks for snow! then I bought you the cotton balls so we could all have socks to wear.

aidan loves percy's chocolate crunch too! we read it alot!
Oh baby. We miss you! I am glad you taught me so well how to build all the cool track layouts, now I can teach aidan. I wish it was you though. How I wish it was you...

I framed some of the pictures you drew. I know alot of them were of trains and some of your self portriats. you always drew yourself like a train. same big smiling eyes and grin to light up the world! you always drew happy smiling colorful pictures.Rainbows, trains and flowers. And your family the things that made you happy.

All your trains are so well worn and well played with. Some of them hardly have any paint left on them. It just proves how much you loved them and how much aidan loves them now too. I feel like that somedays. That my edges have been worn, my paint is peeled and chipping, and I look like I have seen better days. all worn and tired and not so shiney new any more. But I know that I was well loved by you and by aidan too, so none of that really matters. I was loved by you, and got to love you back.

I found that small tape recorder yesterday. The one I bought in calgary! oh the silly songs we sang and all the silly stuff you said. Your voice, so impossibly cute and squeaky. So wise. At one point on the very first recording you said something I recall gave me a chill at the time,but I'd forgotten about til I heard it again. YOu were making up a silly song about daddy driving the van. And mommy driving the van and you said "I wish I could grow up and drive the van, I wish aidan will drive the van WHEN he grows up". It was how you said it. How you phrased it. "I wish I could grow up" and "when aidan grows up" like you knew...back then though we thought all was well. We'd just gotten out of the hospital. We were waiting for your donor percentage and shortly after we found out you were 100 dian's cells. How could you have known? but I think you always did conor.Its why you lived to love and loved to live.Every second. When it was time to go you let us know. In nearly every recording you make some reference to wetaskiwin and at one point you say you wish you could pick up the road we were driving on and turn it around, mix it and drive us back to wetaskiwin, because wetaskiwin was your home. I am sorry you didn't get back here conor. But you are here with us now, you did come home to say good bye and no one here will every forget the beautiful little boy who reached out and touched everyone. No one will forget the little boy that ran down the street laughing and jumping. The boy who threw up in the restuant because he ate a hand full of salt thinking it was sugar. The little boy who ran to the tracks each time he heard a train whislte. The little boy who loved the library and the books and the computer games there. The little boy who had a part time job as a receptionist at the chiropratic clinic while mommy got a massage, and the little boy who loved to shop and go to the muffin store and music class. The little boy who loved all the parks and jumped in every puddle. The little boy who turned every head when he proudly drove down the street in his pick up truck? who could forget such a little boy? the little boy that laughed and clapped his hands whenever he saw the water tower because he knew he was coming home. The little boy that will forever being sitting on the side walk across the street from the train yard, watching the trains go by...
We love you billy.

momma

Sunday, June 6, 2004 7:59 PM CDT

The day started out terribly with waking to Aidan's barking gaspig cough. I threw on the first cloths I found for both of us and took him to the hospital. At times like this I always think I am over reacting and everyone is goign to roll their eyes when they see me walking into the ER or doctor's office yet again. But I do. I will not take any chances with the health of my children. Yes I said children. I always do. I always will. Aidan had another coughing fit in the car and I was so worried for him. At the hospital we were greated by nurses we've known from our many trips with Conor, and as they did with Conor, they took great care of aidan, and me. I didn't feel at all like I was being overly protective of aidan. He was seen by the doctor and given a liguid steriod and an inhaled medicine. He cried and screamed the whole time as we held him to get the medicine in as he spit it out. He is very crafty when it comes to not swallowing medicine. He hates hospitals and doctors and nurses. He just doesn't like being there. I can't blame him. He watched his brother fight for 2 years and no matter how amazing conor was and no matter how hard he fought and no matter how great all the nurses and doctors that treated him were, the outcome was so very sad that I think some where that is what aidan remembers. Getting aidan to use the mask to inhale the medicine was so hard. I am not sure he even got any. But pretty soon his cough was better and he was up running around, being cute and pestering the nurses for stickers. Aidan was fine after that. He has croup and hopefuly the worst is over. The rest of the day he didn't cough at all.
I hated being at the hospital. I hated forcing meds on him and hearing his screams and his crying. I was bothered by it more than I realized and when we came home, I felt really sad for most of the day. So feeling sad I naturally craved a tub of Haagan Daz and put aidan in the van to go to the grocery store. Instead I made a left and not a right turn and before I knew it we were heading towards the Train Museum. We got there and it was open! Last summer conor adn I made the drive there so many times to find it closed or the train shut down for repairs. But today it was open to a new completed track, new train cars and a longer ride. Aidan was very excited and not sure what to think of it all. We sat in a new car that is in the proces of being renovated to its originas 1920's splendor and watched the rain and lightening as we went round the 2 mile track. It was beautiful for so many reasons. The joy and wonder in aidan's eyes. The laughter and choo choo sounds he made when the whistle blew and his excitement at just being there. It also made me feel so close to conor. I remembered our first visit there where he got to drive the train and wear the conductors hat. I remembered hiim running along the walk way flapping his hands saying 'chugga chugga' and spending a fortune at the gift shop. The last time we were there it was full of people for railway days and we coudn't take him in. He was so sad, but understood. So aidan and I rode the train for him today. Oh, conor would've been so very excited to see the new freight cars and oil cars and cabooses. He would've been filled with questions and run in and out of each one with wide eyes and a beautiful smile. He would've talked about the steam engines and sleeping bunks and been amazed at the snowplow car. I think he was sitting quietly next to us today as we rode along the track. I saw him in the pouring rain and heard him in the thunder. I saw his brilliance in the flash of lightening and his beauty in the trees and grass around us. But mostly I saw Conor in the wonder in his brother's eyes.
If you like you can see the museum online. They have a program where you can pay $25 and buy a railway tie to support the museum and place your name on the tie. I am going to do that in memory of conor.

http://www.abcentralrailway.com/

There is much more to say and I will continue another day. I just learned that baby daniel won't be able to undergo a bone marrow transplant after all and the main focus now is to keep him comfortable and surrond him with love. Please visit his site and keep his family close.

www.caringbridge.org/canada/daneilbradley

Also Jordan is having difficult time with his thrid bone marrow transplant. Pleas visit his site to offer his family support.

www.caringbridge.org/ia/jordangrosclaude

Kristy

Sunday, June 6, 2004 7:59 PM CDT

The day started out terribly with waking to Aidan's barking gaspig cough. I threw on the first cloths I found for both of us and took him to the hospital. At times like this I always think I am over reacting and everyone is goign to roll their eyes when they see me walking into the ER or doctor's office yet again. But I do. I will not take any chances with the health of my children. Yes I said children. I always do. I always will. Aidan had another coughing fit in the car and I was so worried for him. At the hospital we were greated by nurses we've known from our many trips with Conor, and as they did with Conor, they took great care of aidan, and me. I didn't feel at all like I was being overly protective of aidan. He was seen by the doctor and given a liguid steriod and an inhaled medicine. He cried and screamed the whole time as we held him to get the medicine in as he spit it out. He is very crafty when it comes to not swallowing medicine. He hates hospitals and doctors and nurses. He just doesn't like being there. I can't blame him. He watched his brother fight for 2 years and no matter how amazing conor was and no matter how hard he fought and no matter how great all the nurses and doctors that treated him were, the outcome was so very sad that I think some where that is what aidan remembers. Getting aidan to use the mask to inhale the medicine was so hard. I am not sure he even got any. But pretty soon his cough was better and he was up running around, being cute and pestering the nurses for stickers.
I hated being there. I hated forcing meds on him and hearing his screams and his crying. I was bothered by it more than I realized and when we came home, I felt really sad for most of the day. So feeling sad I naturally craved a tub of Haagan Daz and put aidan in the van to go to the grocery store. Instead I made a left and not a right turn and before I knew it we were heading towards the Train Museum. We got there and it was open! Last summer conor adn I made the drive there so many times to find it closed or the train shut down for repairs. But today it was open to a new completed track, new train cars and a longer ride. Aidan was very excited and not sure what to think of it all. We sat in a new car that is in the proces of being renovated to its originas 1920's splendor and watched the rain and lightening as we went round the 2 mile track. It was beautiful for so many reasons. The joy and wonder in aidan's eyes. The laughter and choo choo sounds he made when the whistle blew and his excitement at just being there. It also made me feel so close to conor. I remembered our first visit there where he got to drive the train and wear the conductors hat. I remembered hiim running along the walk way flapping his hands saying 'chugga chugga' and spending a fortune at the gift shop. The last time we were there it was full of people for railway days and we coudn't take him in. He was so sad, but understood. So aidan and I rode the train for him today. Oh, conor would've been so very excited to see the new freight cars and oil cars and cabooses. He would've been filled with questions and run in and out of each one with wide eyes and a beautiful smile. He would've talked about the steam engines and sleeping bunks and been amazed at the snowplow car. I think he was sitting quietly next to us today as we rode along the track. I saw him in the pouring rain and heard him in the thunder. I saw his brilliance in the flash of lightening and his beauty in the trees and grass around us. But mostly I saw Conor in the wonder in his brother's eyes.
If you like you can see the museum online. They have a program where you can pay $25 and buy a railway tie to support the museum and place your name on the tie. I am going to do that in memory of conor.

http://www.abcentralrailway.com/

There is much more to say and I will continue another day. I just learned that baby daniel won't be able to undergo a bone marrow transplant after all and the main focus now is to keep him comfortable and surrond him with love. Please visit his site and keep his family close.

www.caringbridge.org/canada/daneilbradley

Also Jordan is having difficult time with his thrid bone marrow transplant. Pleas visit his site to offer his family support.

www.caringbridge.org/ia/jordangrosclaude

Kristy

Tuesday, June 1, 2004 2:34 PM CDT

Did you ever notice how sometimes it is easier to feel things for others that you would never allow yourself to feel for yourself? I just recently learned of child that is battling AML. I know the dad of this little boy through a mutal friend. The beautiful little boy is Daniel:

www.caringbridge.org/canada/danielbradley

When I first learned of Daniel,and went to his site, it was all I could do to hold myself together. I kept asking "WHY?" why, him, why his parents why aml? why so young? why now? why relapse? "WHY?". And it really hit me that I never let myself fall apart like that and really FEEL those things for myself, for Conor, for my family. Then I did, and it was good to be mad. Because I am MAD. At all of this. I try to hard to accept and understand, and beleive in a reason and a purpose and a path. But still deep down, the mother in me, the woman that carried my son beneath my heart, the woman that cradled his little head at my breast, the woman that held his hand every day. The mother that spent every moment of every day just hoping and praying and wishing and dreaming that her instincts were wrong that her son would live. That woman, that mother just simply wants to lay down and cry and scream and give in to the "WHY" and yell it from the moutain tops for all the world to hear. To scream, to let the world hear my pain and anger and confusion. Somedays I feel if I only knew WHY I could make some sense of it all and some how, some day smile again and mean it.

Please visit Daniel's site. Please donate platelets. Please donate blood. PLEASE get your ass(or at least your arm) down to the nearest blood services and REGISTER to be a bone marrow donor. SAVE A LIFE. Bring more meaning and purpose to yours. Everyone searches for purpose and meaning in their lives. Perhaps yours right now, is to read this, be moved by it, register to be a donor and end up saving a life. How will you ever know if you don't go do it?

Kristy


P.S. I see the counter rise by hundreds everyday. Speak up! Introduce yourself. I like to know who still checks in on us. Thanks :).

Thursday, May 27, 2004 10:14 PM CDT

Conor,
I wanted to thank you for the wonderful dream I had last night. All day I have been seeing it, and feeling and and reliving it. You see, I don't think it was a dream at all. But 'dream' is the only word I have to discribe it. Thank you for showing me, for teaching me, for reaching me and letting me know that what I believe is what IS. I feel changed today. Aware, alive, in tune. I woke this morning anxious to sit down and write about what I'd dreamt so I would not forget any of it. I did write it out, but somehow it reduced what it was. It is not something that can easily be discribed with mere words. I want to share it with everyone so they will know and they will feel what I feel but its not for me to decide or for me to share. I feel like I know an incredible secret. I am not scared, nor am I worried for you any longer. I feel so much Peace and joy for you. I am incredibley greatful to be part of all of this.
After waking before I wrote out the dream I turned and looked at aidan sleeping so perfect and so alive in the bed next to me. I fell in love with him like it was the first time I saw him. He is part of me, as you are part of me, and I am part of you and I am part of him. We are all connected. Each member of our family is an extention of each other and you made me see that so clearly. Aidan and I cuddled and snuggled and played tonight before bed. He hugged me and kissed me and we giggled and he feel asleep on my shoulder. He is more than just my son conor. He is my friend. I, in my anguish of losing you failed to see that. He is my friend and my son and my teacher too. Its incredible what I have learned from him and from you.

I sat and watched as a family celebrated the life of their son today. you never me him. I hadn't either. Kaelan was his name. You may remember him though, I do. I remember seeing him as he made his first trips to the hospital, you were pretty isolated then. You'd had your spleenectomy that week. You were going for transplant soon. We didnt allow you out of your room to play with other kids. I remember him though. Full of energy and fun and laughter running through the halls and taking in all he could. He reminded me of you and I remember wishing you could play with him.
Today I watched his life in pictures and in the pain and sorrow in the eyes of his parents and in all those that gathered to celebrate his life. I know you would've been fast friends. He liked so much of what you did. And he had that same michevious grin and sparkle in his eye. He lived and he loved and he touched so many and lives were changed because of him. How can I miss some one I never knew?

I miss you conor. I love you. Thank you for being my son, my friend, my guide and for remaining a part of me, always with me.

Love you. I whisper good night to you each night. I stare at the stars and the moon and tell them to send you my love. Just as you used to do each night on the way to bed. remember how you'd tell the man in the moon to tell your daddy goodnight while he was away at work? I do the same. Only for you.

Tuesday, May 25, 2004 11:22 AM CDT

My head is in so many places now, I find it very hard to write anything. Sometimes I have too much to say, others not enough and nothing gets written. I feel like I say the same things over and over and why the hell does any one want to hear it anyway? I know you care, that's why you come here, so i feel like i should say something, then I feel obligated to post something great and wonderful and profound and that i should be feeling happy because I had an amazing son who touched so many people who changed so many people and that that should be enough. Honestly I could care less if any one had ever heard the name Conor Ford and he was just some snotty nosed kid that lived in wetaskiwin that no one ever heard of. That would make me happy. Instead of this he had a purpose and changed me, and the world and he loved life and he did this and he did that, I mean really who gives a crap. I'd trade it all to have my stinky butt pain in the ass goofy grin sticky finger dirty face I love thomas let me do what I want when I want to I love you mommy and daddy and aidan go to the library stay home a play trains and bake cookies son here with me. I miss him. I need him. He was my best friend. He was my son. He was a big part of who i was and i feel so damned lost without him.
Other than that. I am fine.
kristy

Sunday, May 23, 2004 11:25 AM CDT

Sunday, May 23, 2004 11:09 AM CDT

Come sit with me and watch the cars go by Dad.OOOH,that was a prety color Dad,what kind of a car was it Dad?
It was a Ford F-150 Conor.
But that's a truck right Dad?
Yeah,Conor it was a truck.
When am I going to get better Dad?
Soon,Conor,soon.We just have to keep fighting and visit the hospital alittle more,but it will be all over soon,I promise.
Never give up right Dad.
Never give up,that's right.
Holy smokin' rollies!Look at that car Dad it was a pretty red one Dad!I miss the blue car Dad.The white one is not as fun as the big blue car Dad.
Do you want to drive it around the back alley buddy?You can drive,I'll use the gas!
OK DAD!LET'S GO.YEAH,YEAH,YEAHHHHH!
We almost took the fence out that day.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hey Billy. Mommy misses you. I love you. Aidan said to tell you he loves you "TO INFINITY AND BEYOND!!!!!!!!"

Sunday, May 23, 2004 11:09 AM CDT

Come sit with me and watch the cars go by Dad.OOOH,that was a prety color Dad,what kind of a car was it Dad?
It was a Ford F-150 Conor.
But that's a truck right Dad?
Yeah,Conor it was a truck.
When am I going to get better Dad?
Soon,Conor,soon.We just have to keep fighting and visit the hospital alittle more,but it will be all over soon,I promise.
Never give up right Dad.
Never give up,that's right.
Holy smokin' rollies!Look at that car Dad it was a pretty red one Dad!I miss the blue car Dad.The white one is not as fun as the big blue car Dad.
Do you want to drive it around the back alley buddy?You can drive,I'll use the gas!
OK DAD!LET'S GO.YEAH,YEAH,YEAHHHHH!
We almost took the fence out that day.

Tuesday, May 18, 2004 7:35 AM CDT

Working in the yard, hanging out aroung the house. Doing stuff at home. Visitig with friends when we can. Starting a joint vegetable garden with friends. Just doing day to day stuff. Missing Conor.
I see him in everything that is beautiful. I see his smile in the sunshine and in the laughter in Aidan's eyes. I see his spirit in everything good and in the faces of all his friends. I see Conor in the hearts of everyone who was able to know him or know of him. He still inspires me and so many others.
I still can't make any sense of any of this, but I know I am not supposed to. Its not supposed to make sense. Having it make sense won't make me feel any better so I've given up trying to do that.
I am looking forward to the summer. To Aidan's second birthday and to playing with him as much as possible. He is such a joy. He has an incredible vocabulary! He can tell you what he wants by using one word sentences one after the other. He is working on putting them together, but he really doesn't need to! He repeats each new word he hears and tries it a few times til he's got it down. He's quite a smartie that boy. He is so loving. The other day I was missing Conor's I love you's and all the wonderful things he'd say to me. Then out of no where Aidan climbs into my lap and starts to caress my face and smother me in kisses. He always wants to be by my side which can be hard, not having any time to myself, but its also incredible to have be loved so much.
Today is Brooklyn's birthday!! HAPPY BIRTHDAY BROOKLYN! We love you!! Being 5 is going to BE SO COOL. Do girls say that?? HaHa. Being 5 is so gosh, I guess, I don't know any girl talk! Brooklyn you'll have to teach me! Happy Birthday Brookie. Remember your party where you painted the fence and then we had to put all you kids in the pool!! And you had that pretty butterfly cake? And the year you had the dinasour hunt? Didn't conor get hit in the head with the HUGE stick your mom thought was appropriate for kids to swing at a pinata? (sorry gina, had to get that in there :)!)And you all made binoculars and decorated them. COnor had so much fun that day. He always had fun with you. You were his best friend. We are looking forward to your party tomrrow. I still don't know what aidan will dress up as! Is a surprise!! Can't wait to have some cake.
Five. trying not to let that number linger in my head to long. Five. Happy Day Brooklyn!
Have a great day everyone. Its gonna be hot and sunny hear today. I better enjoy it before the snow starts again!
Kristy

Thursday, May 13, 2004 10:44 AM CDT

Hi all. The Short Cut to a Cure head shave and family walk/run is coming up on June 19 and 20th. We are all doing the walk and Darren is doing the head shave. this is an event very close to us, as it is run by Carolyn who has been very supportive and without her we never would've gotten through these last two years. The headshave was first starting in honour of Brendan, Carolyn's son who did a major butt kicking on cancer and is a 5 year survivor of leukemia. This year the event is DEDICATED to Conor. At last year's event Conor shaved heads...this year he will be there in our hearts.
All the proceeds from the event go to a P.E.T scanner for the Cross Cancer Institute. As I said, this event is very close to our hearts and it is dedicated to the memory of my amazing boy. Please if you are able we would appreciate your support in raising money. I told Carolyn I would tell everyone that she threatened to hit me with a (very big!)stick if I didn't raise $500...not that she actually said that...but you don't know that! I am really looking forward to the event and to raising money for this wonderful cause in my son's memory.
Pledges can be sent to our home or via our paypal account. You can email me for further details. Donations will be issued a tax reciept.
Thank you!!

Monday, May 10, 2004 5:13 PM CDT

Thank you everyone for the mother's day wishes. The day was hard. No matter what I did or didn't do, or what present I recieved or didn't recieved, none of it really mattered because what I really wanted was there and never could be. I enjoyed my day, with aidan, with darren. I took joy where I could, but it was so hard not to have conor there.
And I didn't think really about the impact it would have on Darren. Not having conor to run off to the store with, to shop with. I kept thinking of me, of my day and it was only later that I realized that it not only brought up alot of sorrow for me, but it did for darren to.
Aidan didn't really see it as any other day, but he enjoyed his lunch and his tea, and enjoyed our special story time together when we snuggled and read lots and lots of stories. He was excited about bringing me a card with his handprint on it and excited about giving me a flower at the restuant.
We had a nice lunch, I got to do a little shopping and now I get to do some returning...I am such an impulse mood modiavted shopper! No bother I'll just return it, keeps me busy and returning is sometimes just as fun as shopping.
I went through some of conor's cloths this morning looking for a coat for adian. He needs a spring jacket and I knew Conor had a nice one that would look great on aidan. When I found it, I couldn't do it. I couldn't give it to aidan to wear. Aidan is outgrowing all of his cloths, I have so much of Conor's and I just can't do it. I have been shopping for stuff for aidan, but there doesn't seem to be anything for his size. Everything I see seems like it would fit conor and look so good on conor and I can't seem to find a thing that's right for aidan or that would fit him! I'm sure I will. He's not running around naked or anything (well he does, but by choice, not neccesity!)so I have some time!
Kristy

Saturday, May 8, 2004 9:38 AM CDT

Part of me is looking forward to tomrrow, to see what silly stuff Aidan (and his daddy!) come up with. That part of me is excited to spend the day with Aidan and Darren just hanging out doing something simple and normal. A picnic, a walk, working in the yard or going to the park. Just being a mom, being a family celebrating that.
And there is part of me that is so very sad that I won't be woken up by left over curry for breakfast or crafts made by Conor with cotton balls and paint and glitter and glue and stickers and popsicle sticks and sponge bob stickers and being pinned to the floor and have my nose pinched and my face licked. That part of me just wants to lay in bed and think of what I will be missing. My lunch date partner COnor and I loved to 'do lunch'. We were so much alike that way. We loved to go to resturants and hang out together. He was a little gentleman when we went together. Ordering his meal ( ususally ribs if we went to swiss chalet!) and placing his napkin on his lap. Lots of times we just went out together for tea, or a muffin. We'd share a pot of tea and talk about stuff like trains and iloveyousomuch....that part of me is going to miss Conor running to the store with darren and buying me a bag of cookies or a pretty necklace and running into the room with it, so excited that he is ripping the paper off before he even gives it to me. That part of me just wants to be sad and miss what I don't have.
Then there is the part of me that says I should get of this damn computer and go play with aidan who is tugging on my hand and celebrate what I have right in front of me instead of thinking of what I don't have. I have so much. I have lost so much, but I still have so very very much.
I was given the chance to be the mother of the most extraordinary little boy for four and a half years, and I will always be his mom. And I am the mother to an equally as wonderful little boy who reminds me each day to stay in the moment and focus on what is really important. Being his mom.
Every part of me is very happy to call myself the mother of Conor and Aidan Ford. I will celebrate them tomrrow and perhaps even celebrate me a little!

HAPPY MOTHER'S DAY. Celebrate you. Celebrate your children.

Kristy

Tuesday, May 4, 2004 3:18 PM

Three months ago today...hard to belive. I try not to watch time, moniter the passing of each moment without Conor, but it seems to just be there. My body remembers when my mind won't allow me to think it. I've been up, I've been down, I've been so very very sad. Everyone said after three months it would start to get 'worse' because it will become more permanent, more real. Well,the numbness, shock and disbelief is starting to wear off and life is settling back to normal routines and the hours, days, weeks, months pass and still my son is still dead. Its not harder. Its not easier, it still just IS. And that is so painfuly true.
It still has a surreal quiality to it. A dream like haze that perhaps it really isn't real. Its so incomprehensible. I mean - he's simply just not here.

When I was pregnant on Conor, his great grandmother gave him a Big Bird toy at my shower. It was the most annoyingly loud toy that played an instrumental ‘twinkle twinkle little star’. I used to keep it hung on the handle of his car seat. The toy never failed to make him happy. It drove me crazy! Later as he got older, I couldn’t bring myself to throw it out, and it always ended up in various places around the house playing its annoying tune at the slightest of movements. I’d take it and put it else where and eventually it would turn up somewhere again. Conor found it when Aidan was a baby and loved to play it for his brother. Aidan loved it just as much. Finally about a year ago I hung it on a curtain hook in the living room. There was no way the button could be accidentally hit nor could Conor reach it. I was safe from its annoying sound. It was forgotten about. A few weeks ago Aidan spilled my coffee on the curtains and they needed to be taken down and washed. In the process Aidan got the big bird toy and the song played. I thought of Conor and smiled. Then, when Aidan wasn’t looking I put the toy in a junk basket on the counter. It played once after and then, one day I threw something on top of it and it didn’t play. After nearly 5 years, the toy no longer plays. I couldn’t help but think of the significance of the timing.


I've been trying for a long time to sit down and write out my thank you cards for everyone. It just doesn't happen. I don't know what to say or how to say it. I am afraid I will leave some one out or say somethig wrong.There are an incredible number of people who have touched our lives throughout this whole ordeal. People that continue to do so. I've made lists, only to have to make more lists and more. I am often left sitting overwhelmed at where to start. How can I ever say thank you? How can I ever repay? I know the love and support recieved was not for recongition, just as many who signed cards did not. I have seen the goodness in people and I will not forget.

Having said that, I want to share what comes to mind when I sit to write those thank you cards that never get written.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


The last words Conor spoke were “Thank You”. The moment was a blur; the room was filled with people. Doctor’s were scrambling to intubate Conor so he could breathe. He was scared. He was terrified. He was so brave. He looked at me, clutched my hand so tight. He was most afraid, I think, of my tears, of Darren’s tears. He’d not often seen us cry. He’d not often seen such fear in my eyes. I always tried to hide it from him so he wouldn’t be scared. There was no hiding it then. I knew I would never hear his sweet squeaky voice again. I wanted so desperately to scream at all the people in that room. Lash out at them, throw them from the room, one by one. I wanted to pick up my baby. Hold him, rock him, and love him. I wanted to somehow breathe life back into him. Take him into me, rebirth him, make him well. Instead I stood helplessly by and allowed strangers to pump him full of medicine, pin him to the bed, grasp his throat and place a tube in it. My heart stopped beating, my breath stopped. I felt part of him go from here that very moment. He was leaving. He was waiting for something to leave us entirely but he was leaving. Just before the doctor’s sedated him, they prepped the room and the bed by laying it flat and getting all their stuff ready and near by. There was about 10 people in the room and everyone kept ‘asking’ us, ‘suggesting’ to us that it would be best if we left. It would be hard to watch, it wasn’t good for us to witness what they were going to do. I would not leave my child. His father would not leave his side. I had seen many horrors, in the passed 18 months, all of them I stood by Conor’s side and all of them I held his hand. This wasn’t going to be an exception. I held his hand, his dad was next to me, touching him, stroking him, we were kissing him. “I love you Conor” over and over. I kept telling him not to be scared, we would put a tube in his throat to help him breath. He’d be ok. It was for a little while. He’d be ok. He needed to rest. He needed some help breathing and we were going to do that for him. Get him some help, so he could rest, so his body could get better. I knew I was lying. I wanted to believe my words, I wanted him to rest and get better, but in my heart I knew what was really happening. The doctor’s were all ready, the just needed Conor to move up on the bed. Lay down, they said, before all this he’d been sitting up in bed yelling at people to leave him alone. We’d been talking. We’d been laughing. He’d be trying so hard to be strong, to fight. It took everything he had in him just to be able to breathe. At times he appeared asleep, in reality, he had energy only to breathe. It was all his body could do was take every ounce of everything it had to breathe…we lay him down on the bed. He held on tight, I didn’t close my eyes for a moment I watched every step of that nightmare of my baby being taken from me…I watched as they grasped him under his arms, by now the drugs to sedate him flowing in his viens. I watched as they lifted him and slid him higher on the bed so the doctors could reach him more readily, easier…I watched him turn his head toward me, struggling to open his eyes. I saw his little mouth, his sweet little mouth that once used to so hungrily feed from my breast, his mouth that had kissed my lips, that had formed the words “I love you” a million times the mouth that spoke my name “mommy” mom mom” “mama” ‘trwisty” over and over. His little mouth that I saw while he was still in my belly trying to suck his thumb, drinking his life fluid. His little mouth, his voice sounding tiny, and scared, and at the same time wise beyond this life. His voice, his precious voice. As they moved him, it was as though he thought we were making him more comfortable. He believed we were helping him. He said “thank you”. With a tiny smile on his mouth, and real gratitude in his voice. He said “thank you”. My son. He’d been through a lifetime in 4 a half years. He reached out and touched the world. He taught anyone that knew him what it was to be alive, what it was to laugh, to smile, to take each day and celebrate it for simply being today. He gave, and gave and gave. He Loved. He inspired love and he fought so hard to stay with me. My son. Who changed me. Who created me. Who made our family. My son who loved his brother. Who loved his little brother so very much. My son, who accomplished so much in such a short time, who filled a room with light and love. My son, my miracle said thank you to us. To everyone. When it was I who needed to thank him. For simply being. There wasn’t a day of his life that I didn’t thank him for being my boy. “thanks for being my son Conor” thank you for being you Conor” “thank you for letting me be your mom Conor” “thank you. Thank you thank you.” I don’t know how I got to be so lucky to be your mom. But thank you for choosing me… I hope he knew, I hope he KNOWS what his words meant.
My beautiful boy. My son. My Conor. His very last words spoken were thank you. Thank you. Not just to us, his dad, his brother and I. But to everyone. Everyone that gave of themselves to be here for him, for us. Everyone that helped in someway to help him be strong, by allowing us to all be together as a family through it all. Everyone. The doctors and nurses that treated him. Everyone involved in every aspect of his care. His friends, our friends, our families, for always supporting us. A community that reached out to us. A community that reached beyond our cities and borders that branched out into the world. Everyone that ever spoke his name, saw his face, heard his voice, touched his life. Thank you.



Kristy, Darren, Conor and Aidan

Saturday, May 1, 2004 0:41 AM CDT

Conor, mommy and I had yellow soup for lunch. Yeah. I love it too! I haven’t had it in a long time though. Neither has mommy. Sometimes Mommy doesn’t do some stuff because it reminds her too much of you. That makes her sad. Some things make her laugh. Some stuff makes her cry. Mommy is strange that way!
We went to the hospital last night! I saw all the stars on the walk way I reached up and tried to grab one like we always did. Remember how we used to do that? It was sure strange to be there without you. I tried to ride the car and the tractor and run around, but mommy told me I had to leave! It was pretty late, and all the kids were sleeping, but we wanted to say a quick hello to the nurses that were working and then go home. As soon as we went in there, I ran to the fridge and helped myself to some cheese! Haha. I still remember where the cheese is. Yummy! Mommy and Daddy could feel you there. Mommy thinks you were there with us, keeping close to some of your special friends and making sure they are doing ok and helping them play tricks and stuff on the nurses…I wonder if anyone else wants to do the pee trick? Haha I think that one was ALL yours though! It was nice to see some of your nurses and they all thought I looked just like you! Wow. I am getting big, but I have brown eyes, yours were blue. Other than that, we do look so much alike. Mommy says your were chubbier though, and I am pretty skinny. Hmm, not sure what to do about that. I eat LOTS of chocolate!
We went to the hospital for a memorial service last night. We went to be with some other parents and families whose boys and girls have died too. It made everyone pretty sad to be there. But I did my best to cheer everyone up Conor.
I sang, and clapped my hands and ran around the room. Once, right at the beginning, mommy was crying and I put my hands on her face and wiped away her tears. I held her face in my hands and put my forehead on hers and looked into her eyes. I wanted to tell her I loved her, and since I just don’t know all those words together yet, I figured that was the best way to do it. I hugged her tight and patted her back. I was able to make her smile! And daddy too. And lots of other people. Just by being my adorable, loving self. Pretty cool huh?
And the flowers Conor! They had pretty yellow roses and your name was on one! And some of your friends too. Isabella and Morgan were two of them and Mommy was sad again, so I had to cheer her up by running up in front of the room and pointing to your picture and saying your name. I did! Then I sat down on a chair in the very front all by myself for a bit. After that I went to where all the roses were kept and got daddy to pick me up so I could smell them. I brought mommy a leaf from one of them and gave it to her. I thought it would make her smile… it did, but the I saw tears again. She’s pretty sneaky, Mommy is, she hides them awfully quick, but I see them…
And you know what else Conor? Mommy made me a special t shirt with your picture on it! I wore it last night and showed it off to everyone that I saw. I wouldn’t take if off last night for bed, and today I wouldn’t take it off either! Mommy had to wait til I was asleep and take it off. I hope she washes it tonight so I can wear it tomorrow. I am so proud to be the brother of such a brave boy. Mommy says I am brave and that I am a hero too. Just like you. I guess its because I gave that blood and stuff to you and because of that we got a lot more time together than we would’ve other wise. That leukemia really sucks conor. I hope someday, some one finds a way to get rid of it FOREVER. Maybe someday soon, cancer will get the butt kicking it deserves and no one will ever see it again!
The memorial was really nice with lots of songs and poems and everyone remembering the kids they loved. Carolyn and Craig came with us too! They really miss you I can tell. So many people love you Conor!
And guess what else? We went to that secret place! You know the one you and mommy (and sometimes daddy and I and even Susan..) would go to? Sometimes at night? In the spooky scary dark and sometimes during the day, but ALWAYS to raid the vending machines. Remember how you and I would play with the curtains and pretend to do plays and magic shows? And how we would chug around the trees? And the time Daddy sang that silly song on the piano that is there. That was silly since daddy a) can’t sing b) didn’t know the words c) can’t play the piano and d) really embarrassed mommy because there were people there? Daddy is pretty funny. We play knock over and crazy boy all the time. I miss playing knock over daddy and crazy brothers with you!
And today, I played with Brooklyn! We had so much fun. She did a really great job looking after me. I liked playing with her lots. I can’t wait til her baby brother Ryan is bigger so I can play with him too. Brooklyn is fun, but she just doesn’t get this boy stuff, like knock over. Boy, I scare her every time with that one! She sure is pretty though. She talks about you a lot. Mommy and I like that! We laughed a lot today. I cant wait to play with her again.
Well Conor, it was sure nice to write in your journal and give mommy a break. I will do it a lot more now that I know how! I love you. I’ll always be your little buddy.

Love Aidan Silly Willy Ford

Wednesday, April 28, 2004 2:22 PM CDT

I just burned batch of cookies! I hate it when that happens. The first batch turned out fabulous, but while the second one was in, the phone rang and next thing I know I'm smelling the unmistakable smell of burnt chocolate! Not so good! Isn't it amazing how smells can bring you instantly to somewhere else? Trigger memories you would neve recall otherwise? Burnt chocolate to me reminds me of my easy bake oven when I was young. I cooked everything except the little packages of mixes you were supposed to cook! One of my favorites was melting chocolate chips in the easy bake oven. THat and brown sugar. Mmmm when the melted sugar hardened it was like canday. At least that's what I remember!
lavander makes me think of conor. I used to give him baths in lavander scented bath to help him calm down enough to sleep. Never worked, and he ended up with a nasty diaper rash/infection because of it! Poor little guy...it also reminds me of being pregnant with aidan. The doula I was going to use (aidan decided to come too fast and was not waiting on any doula to arrive!) gave me a lavander pillow for my neck. It also reminds me of the first few trips to the hospital with conor, when I took the pillow to help relax him. My suitcase always smelled of lavander. A friend dropped by last week and we had a nice visit and she brought me a beautiful throw blanket and a lavander candle.It was the first time in a long time I smelt lavander. I was instantly flooded with memories. It took awhile for them to surface, not until later when I was alone. But it was nice to go back there. The clearest memory was of Conor playing in the yard with his friends while I met with the doula. It was a warm early summer night. The air was alive like it had just rained or was going to rain, but at that moment everything was lush, and alive and smelled of life and hope. It was just weeks before conor was diagnosed.
Coffee and garlic, (often what darren smells of!)brings me back to being newly pregnant on Conor and not being able to stand the smell of either, and there fore not being able to stand the smell of darren! I used to make him change his work cloths outside our house (he worked in a restuarnt then) and shower before he came near me! 3 years later when I got pregnant with aidan. I didn't need a test, I woke up one morning and couldn't even go downstairs where the coffee was brewing. It was pretty obvious then.
Cumin, which I used to make supper last night makes me think of living with my girlfriends in our apartment downtown st. john's with the large patio overlooking the harbour...ahh the innoccent days! Gosh that apartment! Late nights, too much beer, too many ciggarrettes (no I haven't smoked in 6 years! I was young then!) good friends, 2 cats, lots of parites. Broken freezer, swinging the pole..long story (remember that one tara and michelle??). Enough of that. Those were days when marriage and kids were something that existed for others, out there, never for me. I thought I was happy THEN?! Little did I know what joy, happiness, fullfillment I would feel. Meeting Darren. Having Conor, then Aidan. Family is my happiness. Oh Conor...Mommy misses you...How lucky I am to be your mom. I will always be your mom!
I smelt conor the other day. I thought his smell was gone. His cloths had all been washed, but I opened a container I thought Held toys, but it was conor's cloths inside. I smelled him before I saw the cloths. I spend a long time with my face burried in his cloths. His undershirts, his socks, his favorite jammies, even his undies! It was wonderful to smell him. It wasn't the conor fresh from the bath smelling of soap and fresh jammies and camomille tea that I loved. Nor the conor of dirt and grass and sunshine and bugs, nor the conor of curry and rice. But the conor I last knew and held. the conor sitting in hospital smelling of disinfectant soaps and warm blankets and gingerale. Of playdough and medicine and oxygen. Of puke and poop and huggies pullups. But it was conor's smell. One all his own. And it made me think of him. It made me for a moment think I had to hurry up, rush back to the hospital so I could snuggle with him. Made me for a moment forget. Not forget about Conor, I never forget about Conor. The times I forget, I forget that is gone. I forget that he is dead, that he isn't just waiting for me ten minutes away. I forget he is gone. And when I remember its so fresh and so raw all over again. those smells comfort me. They let me believe for moment he is still here.
Conor sent his Nana a little surprise this week. I stopped at the store last week and decided to pick up some mother's day cards for my mom and darren's mom.I was looking and picked up one in particular and then put it back thinking It was too early to and I'd come back when I had more time and look some more. Something made me turn around and pick up the card for his Nana again. It was an ordinary Happy Mother's day card, but inside was a packet of forget me not flower seeds. Cute. I sent them off with my other cards later that week. My mom got it on Monday and was amazed to find the seeds. It turns out that she had been looking for forget me not seeds everywhere to plant in her garden for conor. He knew. No one else did. And he made sure she got them. He always did like to make everyone smile with surprises.
I see little signs of Conor each day and it makes me smile to know he is still here, still part of my days. I see it him in Aidan and I see him all around me and within me.
I am so glad darren posted in the guest book the other night. I worry for him. I worry that people only see me, and what I go through as Conor's mom. My thoughts, my feelings, and what I go through. Its not really my place to speak of darren and his grief so I don't. Grief is a very private thing. As honest as I am here, I still hold back so much. I saw his entry on his Monkey Tree and it was so wonderful to see him speak so openly to Conor, to everyone about his love for Conor. I don't want people to just see me in this and forget that there is a dad here too, going through just as much.
And aidan. Everyone always thinks of aidan. That warms my heart. he still gets cards and letters from Bears who Care. Thank you for not forgetting him. Even Conor's friends come to visit and play with aidan. I think it helps everyone to heal. To be together, to play. Aidan loves his visits from all the girls (and the boys too!).
Darren has started back at work and that leaves my days quite a lot differnt than they had been. I spent nearly two years with in and out of hospital, my days filled with that routine of non routine of hospital life and being a cancer mom. Now its the day to day routine of being home with my son. A job I adore. I wouldn't want to be anywhere else. I did want it to be so differnt. Conor getting ready to start shcool, perhaps playing soccor, riding his bike, aidan trailing along behind him. but its not. Now I have to remember how to be a mom of a normal kid. That is hard! i am so very thankful for aidan. his health, his life, his laughter. but our days are missing so much too. I bake cookies. we play sand box, he wathces too much tv while I write on the computer, we read, he naps, I try to clean my house. I come across something that reminds me of conor, I cry...aidan hugs me. We work in the garden, we play on the swing and slide. We blow bubbles. We try to go to the libaray. All the normal stuff. I keep doing and doing to fill our days, to make aidan's days fun. I hope they are. I hope I am not too distracted or too lost in my head thinking of what is missing. I hope I manage to be there for aidan as much as I was for Conor. I hope for Aidan I am the mother I was to conor, the mom conor thought I was. All too often aidan takes my hand, tugs at it, reminding me I am distracted, that I need to focus again on him. I try. I stop what I am doing and I hold him, play with him. I try. I am not perfect. I appreciate my son. My sons. I didn't need the stinking cancer or my son's death to appreciate what I had and what I have. In some ways its made it more difficult now, for me, for aidan because my feeling of what I've lost sometimes clouds what I have right in front of me. I try a little more each day to be the best mommy I can to Aidan.

Thank you to everyone for your continued caring. For not forgetting Conor. For remembering him by celebrating your own kids. By laughing and by singing at the top of your lungs whenever you get the chance!

Kristy

Tuesday, April 20, 2004 2:03 PM CDT

How did I not notice or remember that Conor scuffed his feet when walked?? I just took some of his old shoes from the basement for Aidan to wear, and as I turned them over to check the size I could see it right away. The wear pattern on his shoes. The outside soles of his shoes were scuffed, worn down on just the outside edge. Clearly he scuffed his feet and had poor walking habits. I’d forgotten or never noticed. I couldn’t bring myself to put those shoes on Aidan. He’ll walk differently. Change the wear pattern and any trace of Conor will be gone. He made those his. Like his little jeans with the bleach stains and his undershirts full of pin holes and chocolate milk stains, and paint. Like his socks covered in paint on the bottoms from painting the windows in hospital. He always ‘accidentally’ walked in the paint and made foot prints on the floor. Like the stickers on the TV tray. Or the ones stuck on my living room floors. Pieces of him, of who he was.

I can hear his voice today. In my head. I hear him often. Darren finished painting my room upstairs last week and the first time I walked in the room, I could hear, not imagine, but HEAR Conor “Look MOM! Look at your pretty room, its red, just like James!” he’d have been all excited and want to stay and play and move his stuff in there too! I loved that room. The energy in there is so comforting. Conor and I used to sleep there on the futon. I never slept so well. The room faces east, guess I feel the pull of the ocean way across the country, to Newfoundland that I miss so much but I don‘t think I can bear to return to without Conor…or it could be the shape of the walls, the curved ceiling keeping me safe. Or the triangle windows letting light in from the north and the south…there is always light in there. Even the light from the west comes through the hallway. I’d never realized before that the room is open to all directions. It’s peaceful there. We once watched fire works from there. Our first Canada Day in this house. We could see them over the tree tops.

Once when he was 2 I took him to the Christmas parade. It was so, so cold that night. I bundled him in his stroller, all but his eyes uncovered. We were freezing as we walked there and waited for the parade. It was one of those nights were it was too cold to snow, but the air is thick with ice crystals. On the way home he cried and cried that he was cold. I couldn’t get home fast enough. His little toes and his little hands were freezing. I tried everything to calm him, to warm him. He was so upset. I was at a loss for what to do. I cried with him. Normally for comfort I would nurse him but I was newly pregnant with Aidan, and Conor had been weaned for weeks. So I held him. I tucked his toes between my legs and his hand under my arms and I rocked him and sang to him. He was calmed and warmed.

Conor and I usually showered together. We’d always fight over the stream of water. I’d claim it first as he busied himself on the tub floor playing, then I’d let him in while I shampooed my hair. It was always a battle to get back under the water. “but it’s my turn” I’d say. “just a minute mom, I’m not done” he’d say. “Conor come on, I’m getting cold” “just a second mom, jeez by, its my turn” “ok Conor that’s enough just let me in for a second and I’ll rinse my hair and get out” “ok” “thanks Conor” “Mom, hurry up, its MY turn….” “mom you’re taking up all the space” “mom, mom? Where’d you go?”

I remember once watching a thunderstorm from the upstairs window. It was raining so hard, it was so windy. Our neighbour’s tent blew out of the yard and into the street. He laughed and laughed. Clapping his hands. He LOVED thunder storms and rain. Once, just last summer the thunder and lightening was awesome. We drove around in the summer rain storm, Darren, Aidan, Conor and I. It was late, after ten. We parked in different places to watch the lightening. He loved it, wanted to touch the lightening. Laughed at the thunder and wanted to run in the rain. He was scared of nothing. Except being alone. He never wanted to be alone. But thunder, lightening, spooky movies, cancer. Didn’t scare him a bit. He was always looking for adventure.

He wrote me a song while in hospital. Told me to get a pen and write it down, he was going to sing me a song (jan.05/04)

Mommy loves me
Mommy loves me
Mommy loves me
I’ll never let her go
Mommy loves me
I’ll never let her leave home
Mommy loves me
And I LOVE YOU MOMMYYYYYYYYYYY

I remember so clearly, walking with Conor. I was 9 months pregnant. It was July. It was hot. VERY hot. We had gone for a short walk. I didn’t take the stroller. He wanted to walk. I had picked up some stuff at the store and was carrying two bags. On the way there it was hard to keep up with Conor he was going so fast! On the way home I was weighed down by the heat, by the bags and Conor was walking soooo slow, as only a 2 year old can. He was stopping and exploring and I was very irritated and hot and achy from carrying the bags. One block from home he asked me to carry him. I told him I couldn’t I had the bags, a big belly and I just couldn’t do it. Please mom, please mom…Conor I can’t…but mom my knees hurt! Conor, don’t say that just so I’ll carry you…they do mom! They do…so I carried him. How I have no idea. Mom, higher mom, higher!! You’re going to drop me! Once we were home. It was thanks mom! And off he ran to play, running around the yard, around the house. Later that night…mom up mom, wanting to be carried upstairs, in the morning wanting to be carried downstairs. In the night waking crying for me. Sweaty, asking for water. Bruises on his back, on his legs. They came and went. I had no idea what it all added up to. All little boys get bruises. Looking back it seems so obvious. At the time it all could be explained as something else. Each time I pass that corner where he asked to be carried. Where I heard the words for the first time “but my KNEES HURT” I can’t help but remember his little face, his arms stretched up to me.


I miss Conor today. I miss him everyday. Tomorrow will be one year from the date of his first transplant. It is the day we thought would save his life. Instead we were given more time. We had hoped for a cure. We were given nearly a year. Aidan gave his brother time. My kids will always be my heroes. Hope I can someday grow up and be like them.

Kristy

Sunday, April 18, 2004 10:47 PM CDT

I dreamt of Conor last night. The first dream I have had where I saw him. I held him. The very end I was sitting on the grass with him in my lap, holding him, rocking him. He had all his curls.All his beautiful curls and his chubby cheeks and freckled nose. His eyes were clear and bright and he was telling me he was ok as I was telling him I was sorry, so sorry, and he kept saying it was ok. Then I kept saying it was all ok.
I stroked his hair away from his face, I smoothed his curls, he looked up at me and I could see his eyes so clearly. I could feel his arms around me. His body in my arms. He was warm. He was warm and soft and smelled like sunshine and dirt and summer grass.
The dream leading up to that point was a mish mash of pieces of the past weeks, things that made no real sense, but kind of fit together. Things that happened. Things that i read, things I saw, things in my head, things that I did with aidan. they were all brought together in a strange serious of events. I had saw conor in a dangerous situation. I left him in it thinking that to go back would and fix it would only give power to the fear and make what I fear happen. So I left him for a moment to do what I had to do. When I returned instead of seeing the horrible outcome I had envisioned, he was tackling and amazing feat and making his way safely to me. (the scene of the dream was set on a blimp type ballon that my house was being built on top of, and we had been on the 'roof' planting a tomato garden...) Conor had been tied off with a safety rope and as I lept into the air with my parachute to land on the ground I saw conor playing with his rope, untying the knot. I thought I should go fix it. I asked darren what to do, we agreed he'd be ok, just to hurry and get back to him. I was being overly protective, He would be fine. I pictured him untying the knot, falling to his death on the ground and me finding him in a heap at the bottom. Instead, I saw him climbing down the ladder I hadn't seen. A ladder at the bottom of the blimp, that he had no access to from the top. How he made it from the top of the blimp to the ladder and safely down was amazing. He had to slide around the curve of the blimp without falling off.
He found his way safely and lay in may arms, warm and smelling of sunshine. I could feel his soft body and his breath on my neck. I could see his freckles. hear his sqeaky voice. I held his hand. It was so beautiful. I can't wait to see him again. I can see him now. I had trouble seeing him,remembering him. I could remember things but his face, the details were distant. In the dream they were real. Now everything is clear when I remember him.
THe dream sounds kinda crazy and I left out most of the crazy parts! Its made up of stories taken from books I have read, and bits and pieces of everything thrown together. Aidan and I planted seeds and tranferred tomato and pumpkin plants to larger pots last week...I think that it was conor's way of letting me know he is here with me. He is part of me, and although i don't always know it, he IS with me, in me and always will be. those seemingly unrelated bits thrown together, thoughts and experiences, he wanted to show me, prove to me. He was younger in the dream. It was before we knew he was sick. He was conor. As I needed to remember conor...

Wow, I had just intended to write I dreamt of Conor and the rest came flooding out! I remembered parts of the dream that I had left out when I told darren this morning. It was almost as if I went back into the dream again for a moment. My son has found me. Or I have found him...at last.

I lay with aidan as he went to sleep tonight. He still nurses to sleep every night. I was hurrying him, reading my book, anxious to get back downstairs, anxious to have some time for me, with darren. Aidan had other plans. He made me stop and notice what was right in front of me. A perfect boy. My son. As he nursed he squirmed and fussed, and stood on his head, but then he settled, tracing his little finger along my hand, down my arm and back again. He would stop and cuddle into me and then kiss my cheek. He was so warm and cuddly and loving. His little feet, so perfect and kissable. His eyes were wide full of wonder and love as he snuggled in, bundled his teddies, his toy story dolls and stuck his little bum in the air and closed his eyes. "mommy" His arm reaching out for my neck and pulling me in. What had seemed like a long dragged out hour became a flash of time to be held on to forever. I have always adored those moments before sleep with my sons. They are precious. Almost as precious as waking in the middle of the night to feel a hand reaching, a foot seeking and a cheek to kiss.

Conor Aidan chugged like a train today! A little differnlty than you used to. He crouched really low and put his arms out straight pointing towards the ground and chugged. Once he put his arm up and flapped his hand, like you used to do. I felt a tug in my heart. I knew you were there playing with him. We sure do miss you. I know your friends do to. You were so loved, simply by giving so much love. Thank you for chosing me. For chosing us. I feel so lucky to be your mom. To be aidan's mom. I love you billy.

Saturday, April 17, 2004 7:53 PM CDT

This is for the person that saw fit to steal my bank card, some how obtain my PIN number and proceed to clean out my bank account. I hope you really needed the money. I hope it was because it was your child's birthday and you couldn't afford a present, you were desperate and did something crazy. I hope it was to pay your bills or by some medicine for you child or to buy groceries for your family. I hope you needed it for selfless reasons and that you did it out of love even though it was total disregard for MY Life.
Perhaps you saw me and thought I looked like I could afford it...little do you know...appearances can be decieving. I CAN'T! My husband hasn't worked in nearly 2 years. My son was sick. He died. We've spent the past few months in a state of severe grief. Perhaps when you saw me, I looked happy and carefree, some one out for a saturday afternoon shopping, not a care in the world. Well i do have cares, and troubles and I needed that money too. I just hope right now you needed it more and that it wasn't for drugs or alchol or something else pointless and self destructive. I really hope you needed it, really needed, and I hoped it helped you.
You know of course, this is NOT what I want to say to the miserable creatin that stole my money but I figure, if I say it out loud it will make it somehow true and perhaps a child that has gone without will get the best birtday ever or a fridge filled with food like they have never seen. I hope the rent gets paid and they have a home for one more month...I choose to believe that. I refuse to believe it was a heartless, cold person just stealing for fun or for no good or for trouble. Either way I am sad, and upset and feel so stupid and violated and ticked off. I guess I'd feel better if it was done out of love than out of malice.
I have to now go through the trouble of a frozen account until monday, file a report and HOPE to somehow get the money back in the next week or two...
Hide your PIN numbers people...it CAN happen to you....
Kristy

Friday, April 16, 2004 10:13 AM CDT

There was a program on TV last night that mesmorized me. I was totally enthralled by it. A little boy, who at the age of 2 started to recall details of a past life. He started by having this incredible knowledge of fighter planes from WWII, and then began having night mares. At first his parents dimissed it as TV, or things he heard people talking about, but it soon became clear that he was remembering! It was incredible. It made me think of conor and his instant love of trains. It seems from the moment he saw one he was transfixed. He not only loved toy trains, but I used to read him trian encyclopdia's at the library and he loved to watch train documentries. I admit that I encouraged him toward the kids trains and never really thought to have him elaborate on stuff that came out of nowhere. there were times he mentioned names of people I didn't know as his friends, and his knowledge and familiarity of trains was just so real and inate. It gave me so much comfort. It gave me so much hope that all I have been feeling is REAL that we have been together before and we will again. He had a purpose here and will return to continue working on that, of that I am sure. It just wasn't the time.
I know I may sound like the desperate,grieving mother, but everyone's beliefs are differnt and these are mine. I have always believed in the existance of past and future lives and I always will. My relationship with conor proved that. I knew him immediately. We were connected, we still are. Just like I always knew he'd be sick, the way i fought and fought trying to prove myself wrong, that my instincts were wrong, trying to make him have a chance to LIVE, knowing full well in my gut that that was never to be...Just think of all the things in your life that your are passionate about, that you excell at with out trying, unexplained fears, thing that intrigue you. Think of kids that wake up one morning and play the piano, or start to read...I believe these are things that are rooted in the past and come to surface little by little. Our lives begin to be layered on top of each other to make us who we are. As kids we don't have the ability to know what we see is not part of the now, we believe what we dream and know is real, we haven't been taught to ignore it, to discredit it. Children have the ability to see all things clearly until they are taught otherwise, we should pay more attention to them and learn from them...
Last night after seeing that show, I dreamed! Real dreams. Not about conor, but they were vivid. I have been closed to so much lately, that seeing that opened me a little. I know I am getting close to him and soon he will come to me in my dreams. I feel it. He's still trying to learn how. As am I.

I miss him so much.

Tuesday, April 13, 2004 2:23 PM CDT

Face cloths, pajamas, ankle socks and suitcases...what do these things have in common? They are things that made me think of Conor today.
Face cloths because for some reason I have an abundance of hospital face cloths. (Please don't tell anyone though, I'd hate to be charged with theft...)they turn up in the oddest places. In my sock drawer, in the coat closet. Maybe I took them while packing up from one of our many hospital stays, maybe conor used them to wrap his toys after his bath and didn't think to take them off. Who knows. But I have lots.
Pajamas...I have so many PJ's! One thing I had lots of in the hospital. May sound strange, but when I stayed with conor in hospital I had to be on call 24/7 and proper bedtime attire was a must! I'll never forget the night I saw a woman, whose child was an off patient (appendectomy I think) walk up to the nurses station at 2 am in her pretty (very short!ack!) nighty to inquire about something for her child. Us cancer parents know how to dress for bedtimes. PJ pants or comfy sweats were a must. Impromtu trips to the vending machines and midnight runs for popsicles and hot blankets - I was always prepared! Plus nice PJ's always gave the illusion of a slumber party. Conor hardly ever wore hospital PJ's, he mostly wore his own. He had lots too. Glow in the dark eyes, glow in the dark skeletons, Bob the builder, Toy story, Thomas, plaid, it was nice to see him dressed while in hospital. It made a horrid amount of laundry, but he liked his PJ's. He had lots of comfy pants he like to wear with his favorite T's. Made him look like a little teenager. Usually he would change into his jammies after his night time bath, we would have a snack. I put mine on then too and we would settle in for the night with our snacks, and movies and make the most of it. Chemo nights were not so party like, he always needed gravol and that always knocked him out early. But he liked his jammies. and so did I. I put on a pair of pink flannel last night. I remembered that I had bought them the day after conor died. My birthday. My cousin, my girlfried and I went for a drive and ended up at the GAP outlet. How insane is that? My son is dead barely dead 24 hours and I was shopping. I remember having to get out of the apartment and we just went for a drive. We ended up there. Everyone handles things differently and I guess retail therapy has always been one way for me. I bought the PJ's out of habit more than anything.I guess I forgot I wouldn't need them ike I had before...
Akle socks. I have tons of those, as does darren and Conor did as well. When conor was in hospital, we never wore outside shoes in his room. We spent alot of time on the bed with conor and so ankle socks were the perfect solution. We'd enter the room, take off our shoes and put on a clean pair of socks. Sounds a little nuts I mean, all the staff wore their outside shoes, but I always cleaned the floor several times a day, so that was ok. I hate ankle socks!! Conor had some cool colored pairs.I still find them everywhere. He had these really cool black and grey...actually he had alot of cool socks. His socks always make me cry. I have no idea why that would be. I guess because they were so him. He took his favoirte pair with him. His orange/grey/black strip ones. They were his favoirte because they didn' really match anything and it he liked to drive me crazy by getting dressed and going out with cloths tha didn't match. He'd sing the part from "Jimmy Neutron" - "I'm out in public and my cloths don't match" and find it very funny. That and he' pee in the shower...soemthing else he got from Jimmy Neutron...Ankle socks. Like the PJ's served a purpose now don't seem so useful any more.
Suitcase. Hmm. Dragged one upstairs today to store winter cloths in. Made me think of all the hospital trips, all the stuff we dragged with us. The one we used mostly had a flat spot on the wheel and you could hear it being pulled through the hospital from miles away. Conor always knew darren was on his way by the sound of that suitcase. He'd jump up and down laughing, clapping his hands saying "daddy's here, daddy's here!" or "da da, da da"(like aidan).He'd do this crazy thing where he'd stick his tongue out and kinda pant like a dog and say "yeah yeah". He had some pretty strange ways of expressing himself!! He knew that sound and knew his daddy was on his way, bringing aidan and a suitcase full of his trains or favorite shirt or his thomas blanket, little bits of home.

It was a year ago today he was admitted for transplant. That day we went outside to jump in puddles. It was a cold miserable wet day, much like today. Conor fell face first into a puddle minutes after we went outside. And I, being the fantastic mother I am took pictures of it. He looked so cute in his too big rain boots (he insisted on Red, like James and the only ones I coul find were 2 sizes too big). I think he had fun. He always did.

Today is also my dad's birthday. Happy birthday Dad. Happy Birthday "Tops".

Kristy

Sunday, April 11, 2004 9:53 AM CDT

Conor's first easter he was only 6 months old,so it was pretty uneventful. However some one had to eat all the goodeis the bunny left and that fell to me...it was tough but I managed. I remember it was a few days before we moved from Newfoundland and Darren, Conor and I had brunch with my dad, brothers and my niece at a Hotel. Conor has so much fun making a mess, catching the eye and stealing the hearts of all the other diners. I have pictures of him from that day, a chubby cheeck baby, sitting up in a high chair for the first time and playing with spoons. Beautiful boy. Not long after we moved from NF to Ottawa and our next easter found us here in Alberta..

His second easter a was a little more exciting for him. By then he had grasped the whole "chocolate" thing and was very excited hunting for eggs and really loved his new bunny and trains he got in his basket. His first trains were these cheap plastics ones from the dollar store that pulled frieght cars with shapes in them. He'd play with those for hours. I still have some of them. That was a really fun day as well. I remember Brooklyn gave him a stuffed bunny that was riding in a train. The toy played "down by the station" I believe it was a few days after easter that he got that. Boy did he love that toy (much to my dismay I might add!!) that thing is the LOUDEST, most ANNOYING toy! Its something my Mother in Law would send him (Just kidding helen!!)I have hid that toy a thousand times and it always comes back. It has a mind of its own. But conor loved it and that's what mattered.

Conor's third easter was spent here at our house. He was old enough to be excited and write the easter bunny a letter, left him some carrott and went off to bed. He woke to goodies on his bed and a train of goodies down the stairs and hidden all over. He was so excited to see that the easter bunny had eaten most of the carrots..mmmm. It snowed that day and we went for a short drive and had to come home bacause it was actually stormy. I have pictures of that day of conor and I. He is holding my very pregnant belly and smiling. Conor loved the chocolate more than anything.We had to hide it away upstairs because all he wanted to do was sit around and eat chocolate. One day shortly after easter the house got very quiet. Conor had been playing in his room and darren and I were downstairs. I noticed the silence and immediately knew something was up. I quikly ran upstairs, but didnn't see any sign of conor. Then I heard a rustling from the closet...there he was, sitting in the closest with ALL his goodies as well ans mine and darren's. He was coveered in chocolate. There were wrappers everywhere. When he saw me he panicked and started grabbing at the chocolates with two hands trying to save all he could. All I could do was laugh!

Last year for easter Conor was in the hospital. He was on his last day of Chemo for his transplant. The following day was the big day. The easter bunny stopped by for a visit and brought lots of goodies for conor. He even found aidan at home and brought him a basket of goodies and a winnie the pooh ball. Conor hadn't felt like too much chocolate that day, but I believe he made an effort. We were all excited and anxious about the following day.

This year, I missed that goofy grin. His excitement. Aidan was thrilled to see choclate at the top of the stairs and a trail leading down. But he was a little confused I think. He couldn't believe he was able to get outta bed and eat chocolate! HE found lots of eggs and ate as many as we would let him. I will hide them better this time!
It was a our first holiday without conor. Its difficult, and makes celebrating a bit of an effort, thankfully aidan is too young to really know much about it right now. We tried to make it as fun as we could for him. We had a great supper with friends last night, and today we are having lunch with family. It helps to be around people. Especially those that knew and loved conor.
Have a Happy Easter.
Kristy

Friday, April 9, 2004 11:02pm

Not really sure what I want to say. I've been feeling pretty up and down lately. lots of waves of emotions, but you know what? I've been feeling very peaceful when i think of conor. I miss him like hell, it hurts just the same, but I seem to have gone back to that peaceful, powerful feeling i felt after conor died. I can feel something new inside me and I am getting excited about lots of ideas i have to keep conor's memory and his spirit alive. Like he's giving me a kick in the butt to get moving. Lots more on that later when I have it all worked out.

I went an assembly at a local school on tuesday for 'the short cure for the cure'. if you remember last year conor was shaving heads at the head shave. this year the event is dedicated to conor! the organizers of the event are going to schools talking to kids about cancer awareness and fitness and getting them involved in the event with fundraising. All the proceeds go to the Cross Cancer Institute for a P.E.T scanner. I'll post more soon about the date, times and how to sign up. there is also a 5 km fun run and 1km family walk. i really enjoyed seeing all the kids get involved, and excited about doing something. some of the girls talked about cutting their hair to donate for wigs - i won't even do that!

Please stop by Justin's page. Justin is a pretty cool kid (can I call a teenager a kid? man that makes me feel old!) that just finished his LAST CHEMO EVER for AML. Go Justin!!! He's kicked some cancer butt and it was due for a good butt kickin! (Right Conor??)
www.caringbridge.org/mi/ireland

My garden has pretty purple flowers in amoungst all the weeds. i have no idea what they are, but it is nice to see new life springing up in my yard. Aidan has been picking them for me and yesterday he copied me when i put the flower in my hair. He stood there with the silliest of smiles, so happy...one goal i have is to make a garden this year. A couple. i have already started pumpkin and tomato seeds and Aidan and i are working on getting the flower gardens ready. conor loved to be in the garden and loved flowers. this will be for him. Aidan had lots of fun weeding and raking in the dirt. we have alot of work ahead of us, and i look forward to it!


Tomrrow is the one year anniversary of the date we left for calgary. We left here with our hearts full of hope, sure that our son would be one to make it...I love you Conor. I love you. I miss you.

Monday, April 5, 2004 11:02 PM CDT (NEW PICTURES ADDED APRIL 8th)

My dearest Conor!
Thank you!! Thank you for whispering in my ear for telling me I needed to do something to bring a smile to my face. I got your message while flipped through the grocery flyer that came with the paper. I saw the flowers. I heard you say, "look at the pretty flowers mom". So I took aidan and we bought some. Oh so pretty Tiger lily's. Just like I had at my wedding. Thank you. I even spoiled myself (after all, it was your idea! you always did spoil me :) ) and bought a lucky bamboo tree and some other flowers and two pretty vases. Aidan and I picked out some balloons for you. To say thank you for being such a wonderful son and the best big brother ever. Aidan kisses your picture all the time and throughs his hands in the air saying "gone?" and sometimes he goes to the window and points. He says "walk" still thinking you are just a short walk away. When we stopped a the hospital a few weeks ago, I know he was looking for you. He seemed so confused that you weren't in any of the rooms..or sitting at the nurses station! He misses you.
We took the balloons to the O'Callaghan's (yeah I know, I should know how to spell their name!)and we all wrote messages to you craig and Brendan wrote "you rock conor" while us girls said sappy I love yous and I miss you's. But I am sure I saw the boys write an I love you too! Aidan told me to tell you "you stink" so I did! Did you like the balloons? there were ten of them...pretty pink and yellow and blue. You can share them with your friends if you like. Tell Colby to keep the yellow one this time :).
I'm off to bed baby. I'd like you to come see me in my dreams. Its easy. Just find me. Hold my hand and I'll see you. I'd love to hear you say " your so pretty mommy" or " I love you so much..." I'd even like to hear you fart ;). Stinky boy I love you.
Thanks for the flowers and for chosing me to be your mom. You are in my heart.
Oh my wheels and coupling rods! I sure do miss you.
Mamma
xoxo
Hey do you remember the time we got caught in ther rain on our bikes? you mommy and daddy in ottawa? It rained so hard. there was thunder and lightening and lots of rain. You just threw you face to the sky and your hand in the air and laughed and laughed. Oh conor how you loved...

Monday, April 5, 2004 2:19 pm MT

No one told me the simple things like the fact that I’ll wake up one day and realize all my bills are three months behind and that they need to be paid. No one told that time would become meaningless and the minutes hours and days just bleed into one and but life still goes on. Babies will be born. Snow melts, seasons change. Kids get diagnosed with cancer, children relapse, children die. But hey, my yard still needs to be raked and my floors still need to be cleaned and life just goes on. The world did not stop. It should’ve. It should’ve frozen in time at 10:15pm on February 4, 2004. So I could still be holding my baby. So I could still be feeling his hand in mine.
Things still need to be taken care of. Conor’s education savings plan needs to be transferred to Aidan. His stuff needs to be packed away…then what? Do I keep it forever or do I give it away? Do we stay here in our home or move and start over. I shouldn’t have to worry about life getting in my way of dealing with my son’s death. I never understood the value of life insurance. Why profit from some one’s death? Now I do? I wish I’d had it for Conor so I could run away with my family and just be with my family and not ever have to deal with day to day crap again. I could pretend. Isn’t that a crazy thought? Wishing I’d planned more for my son’s death? SO I could afford to wallow in it? We talk now about going back to work and making a living and getting by and getting on with our lives. I don’t want to. I want to go back. Back to August 29th, 2002 and never answer that phone…
This is so not what I came here for today. I came to thank you for continuing to show your love and support. To continue to remember Conor and to keep him alive in your hearts. Thank you for that. Crap. I so don’t feel like doing this now. I don’t want to be thanking you for remembering my dead son. I want instead to tell you it was all a lie. That he is right now outside playing in the mud, chasing Aidan around the house, looking for lady bugs and playing trains. But he’s not. He’s in a box on a shelf in my dining room.

Sunday, April 3, 2004 11:10 pm MT

No one says his name any more. I feel like the whole world has forgotten him. I feel like Conor’s been erased. Like I’m erasing him. Everything I do, I feel like its just one more step in erasing him. All his cloths have been washed, there is no trace of him there. Yesterday I cleaned the van, as I was cleaning the carpets and the windows I cried…I felt like I was wiping away every trace of him. Things he touched, his fingerprints, part of him was being wiped away. Food ground in the carpert, stickers on the window (every time he had blood work done in wetaskiwin they’d run behind the nurses station and help himself to lots of stickers..they all ended up on my van windows!)little traces of Conor all slowly being erased, wiped away. Some one else’s foot prints now cover his in the yard, the snow and the rain have removed all trace of him from the swing set and his toys. Last winter he played in the snow and his bob the builder toys got burried and lost in the snow. I told him it was ok, we’d find them in the spring. I found them the other day. I wanted to tell him to come look what I had found - only he wasn’t around. His cloths are all packed away, I can’t bring myself to put them on Aidan. They were conor’s cloths. Some of them I kept for Aidan, but conor had his own style that is so unlike Aidan’s that his cloths really reflect that, and to give them to Aidan to wear, seems so very wrong. Its strange how early conor let his personality show and expressed it through what he wore. Aidan is doing that now too. I bought a shirt for Conor when he was just a baby. He wore it only once. It is a orange flower print cowboy style shirt. It just didn’t suit conor. He looked uncomfortable in it. I found it the other day and Aidan loved it. I put it on him and it was clear it was made for him! But so much of Conor’s cloths, was that -conor’s…He was so strong in who he was.
I just want to hear his name, hear people say it. Hear people talk about him. I know it makes people uncomfortable. It must be so hard to know what the hell to say to me, to darren, to Aidan. I don’t even know what it is I want. I just am so afraid he is being erased. I feel he will live forever if I keep saying his name and I hear it on the lips of others.
I want to do something to keep his memory alive. I have to . I have all kinds of thoughts and ideas I just have to find a way to make them happen. I am going to find a way to keep conor alive in the hearts and minds of everyone. I see his smile, his sparkle and his spirit. I see the challenge in his personality and his desire to fight and to change and to stand up and to never back down. He made his voice be heard. I want to make sure I keep doing that. Tomrrow is 2 months since conor died. Help me remember him by turning up your Bon Jovi and singing REAL loud! Call your radio stations…get them to play its my life and sing in the kitchen, in the shower, in your car, with your kids, with you dog…do something silly. Just for the sake of seeing some one smile. Conor used to love to show people his butt, but if you shy you could try something else. Do something nice for some one you know. Tell your kids you love them. Give them ice cream for supper. Make Chicken curry. Play trains. Ride a train. If you are a nurse or a doctor - don’t lay anything on your patients bed (just hear conor yelling “NOTHING ON MY BED!”. If you are a patient, hug your nurses and your doctors! They deserve it. You can even make them a silly hat and ask them to wear it all day. Just think of Conor. Say his name, yell it out load.
I miss him.I Just miss him so much. Nothing anyone can say or do will make it better or change it. I want to see him, to hold him. I want to be with him. I want him with me. I feel like I didn’t teach him enough about death, that I didn’t teach him how to find me that it will take forever for him to learn how to find me. I prepared him to fight, not to die, what if he didn’t know how? I feel he hears me when I write here. it’s the only reason I haven’t stopped the site. It come here so he can see that I love him. It was so easy to write here when it was about conor. Now the focus has shifted from him to me, and its not so easy to write. I see the counter numbers go up by hundreds a day I wonder what the hell everyone is coming here to read. What could possibly be so interesting? What are you hoping to find? Why do you need this? Why do I need this?
Conor, conor, Conor. I miss you. I love you. Remember the night we went for a walk in the spooky scary dark, in the snow? We jumped in snow banks and I pushed and pulled you on the shovel? Remember we saw the pretty lights and all the houses decorated? Remember someone was having a party and we could see inside? It was so cold out, the sky was so dark, but the stars made everything so bright. Remember? I do. I remember everything.
I hear trains in the distance every night. Remember how you used to run to watch the trains go by? You would hear the whistle and your mouth would form an “O” and you’d gasp, your eyes would go wide and full of excitement. We’d run and sit on the corner and watch the train go by.
Remember how you’d rub my back? How can you possibly be gone??

Saturday, March 27, 2004 5:01 PM CST

I was in the store today with aidan and a little girl about his age came up to him started talking to him. I immediately froze. My first thought was "she could make him sick, and he could pass it on to conor..." then I realized what I had thought and then felt horrible that even now, my first thought was conor and not aidan then I felt horrible for thinking that way. while all this was going on in my head the poor child that approached aidan reached out to touch the chocolate he was eating. i scared to heck out of her when I all but screamed, "don't touch!" I feel so bloodly abnormal.
Then again I hate it when some one tells me all this is normal, that my pain is "NORMAL" how the hell can any of this be normal?
I feel so vunerable, so weak and so closed. I can't seem to talk about anything to any one, yet its all I want to do.Is talk about conor. I always enjoy talking about him and telling conor stories, then it hit me that there aren't going to be any new ones. None. Just the same ones over and over again for the rest of my life. I cherish those memories and those stories, but I want to share new ones! I had a hard time taking pictures after conor died as well. I love taking pictures and I am so greatful for that because I have thousands of pictures of conor at every stage of his life. Except the very end. I didn't take a single picture of him in ICU. I just couldn't do it. The last picture I took was one of him the day before he went to ICU. He looks so sick, so weak, so sad so broken. His abdomen is so distended. I had no idea he was that sick until I looked at that picture. I couldn't see what was right in front of me...I hate that its the last record of what I have of who he was. The pictures in my mind are so much better. I wish I could capture those for you too see. The peacefulness that was on his face as he lay in my arms long after he died. I thought of taking a picture, but realized it was more the feeling of peace that I wanted to capture, not the moment. No picture could've caught that moment. So of all the thousands of pictures I have, the one in my head is my favorite. I so wish I could take a million more pictures of him....
And aidan. Oh aidan. My silly willy without his silly billy. I saw him the other day pick up a teddy bear and pretend to cry into it, then look to me for a hug...I wonder where he got that from? I've been trying to do more with him. It hurts but I keep trying. He has so much fun when we go out and just walk around the block or pull the wagon. He loves playing with playdough and is still quite enthralled with Toy Story. He wants to watch thomas more and more and play trains more. That is so hard...I try to focus on his love for playing and not my memoires of conor. I imagine a little voice whispering in his ear of where each piece of track should go and which train to put where. Aidan is getting quite skilled putting trian track together. He learns new words each day and is so loving, so caring and just the light of my days. He has the cutest giggle and a quirky smile that makes me laugh. He wears a cowboy hat whenever we go out, and I think I may just have to get him a pair of cowboy boots! I've been calling him cowboy willy lately. He seens to like it.
We are still planning on getting him a dog. Still researching and trying to find just the right one. We both love German Sheppards...but we'll see.

Kristy

Wednesday, March 24, 2004 9:45pm MT

I haven’t stopped thinking about what I wrote earlier and I had to come back and read it and try to figure out where my head was when I wrote it. When I come here, I just open the page and write. I don’t plan, I don’t organize, I don’t edit. I forget sometimes that there are others reading it. I just empty my head through my fingers and have no control over what comes out. I do stop myself sometimes from writing too much from saying too much, from writing too much of the reality of this life. Those of you that admire my honestly have no idea how many truths I omit. Simply to spare you the horror of my reality. There is no way to shield you from it other than to leave it out. There is no way to write about it without falling into a dark place myself. There is no way to really make you understand, and to be truthful, I don’t want you to. Why would you want to understand the pain of losing a child? Why? It is something you should never never even have to think about. I come here now because for some reason it helps. I also write on my own, elsewhere, the things I dare not say here, But here, I feel Conor. I sense him. I feel like he can see these words, read then, Know I am missing him thinking of him. it’s the same when I talk to him. More and more I talk to him out loud and not in my head because I fear he will not hear me.
I am happy he got to do the things he wanted to do in his short life. I wanted much more for him. I wanted years, decades with him. I wanted soccor games and grade school, and hockey and plays and skating and band rehearsals and wild hair and crazy music and skateboards and giggling girls on the phone. I wanted fights about curfews and homework. I wanted driver’s licence and graduations and college and careers - a musician, and comedian, an doctor, a garbage man and train conductor, a pilot, a chef, a carpet cleaner a car salesmen, a teacher, a father… I wanted grandchildren and I wanted him holding my hand when I died. I wanted time. I wished for time. He wanted so much more, but was able to appreciate what he had when he had it. He made HIS dreams come true in the time he could. He wished for more that he got, but he was took what he was given and made so much out of it. He loved. He loved and he loved. He once woke in the middle of the night to find me standing on the bed screaming hysterically. He was 2, I was 7 months pregnant. There was a BAT in my room. He hugged me and told me not to worry he would take care of me. He would SAVE ME. He did. Not just that night as we lay hiding in the room under the covers giggling while Darren chased a bat through the house with a broom. But from the minute he was conceived. He saved me. He created me. He was my parent. He taught me more than I could’ve ever taught him. Why do we forget who we were as children? Why do we change and grow into these people that forget what the truths are and what it is like to just give and give and give just to see some one smile? Why do we forget the beauty of our imagination and the innocence that makes us speak our hearts, unedited, unpredicted, just as it is? Why do we become so wrapped up in becoming instead of just being who we are? He loved who he was. He loved who I was. He loved everyone. I still get emails from some of his nurses that say it was a challenge, it was fun, it was a contest to win Conor over. To be invited, to be asked, to be accepted by him - to be one of the chosen few! He gave so many are hard time, but he did it with a sly grin knowing full well he was wrapping them around his finger, drawing them in, making them want to be with him because he wanted to be with them. On his terms. He knew how to get what he wanted. He wanted everyone to be his friend. Because that is how he saw everyone else. I wanted more for him, I still do. I want him back, I want it all back. Cancer and all if it means him. That is the irrational crazy desperate side. I wanted nothing more than his pain to be gone and him to be free of it all and he is. I am at peace with that. And that feels just as irrational and crazy as wanting him back so he can suffer. Ideally I’ll take him back 2 years ago, healthy, happy. Eating butter from the fridge because I am too pregnant, too sick to feed him anything else. He took care of me. He was a pain in the butt with his constant demands for my affection my love and my attention. He wanted my every moment. Perhaps he knew and wanted to soak it all up. I too felt the same way with him. I wouldn’t leave him alone with anyone, I felt panicked to be away from him for an hour. This was always even before he was sick. I just needed his every breath to be in tune with mine.
I’ll keep on ‘holding on’ and ‘surviving’ and ‘getting by’ and ‘getting through’ and ‘doing ok’ and ‘hanging in there’ and ‘doing what I can’. I’ll keep doing that just so I can see this life through to the other side to some how hold his hand again.
I smiled today, I laughed out loud, I ran, I played, I giggled with Aidan. I had fun. I held him, we went for a walk, we jumped on the stairs (TO INFINITY AND BEYOND….). We played trains. I felt happy. I felt sad. I felt every emotion as it came. I missed Conor, I ached for him but I stayed in the moment for Aidan. My day is a serious of those moments. Staying in the moment just to make it to the next. I love Aidan. He has picked up where Conor left off taking care of me, keeping me in line. Making me take care of me, so I can take care of him. He’s a smart one that Aidan…he has a pretty good coach whispering in his ear.
So I will keep making moments, I will keep trying to make tomorrows and I will make the most of each day. And by that I mean if there is one moment in that day that I accomplish some thing then that is a good day. Even if each day that something is just getting out of bed.
Strength and courage are what keep me going. I keep thinking that tomorrow is the day I will find both.
Kristy

Dearest Conor:
I believe you are in me
I believe you are around me
I believe you touch the lives of all those who knew you
- those who love you
I believe you are a spirit, an energy
I believe you are reaching beyond where you now are
- to draw us near, to keep us close
I believe I always knew you
I believe I always will
I believe I will someday know you again
-feel the touch of your hand, the warmth of your breath
I believe you are my well of courage and strength
I believe you are in me


All my love,
Mom (I miss the way you used to say my name Kwisty...xoxoxo)
P.S can you stop taking the shark from me when I sleep? Evey moring he's not where he should be he's somewhere differnt. Stink.

Please keep Savannah close...
www.caringbridge.org/ar/savannah

Wednesday, March 24, 2004 5:52 PM CST

I have been thinking a lot lately about the things Conor DID’T get go to. How he didn’t even get a chance to go on a wish trip. I kept thinking that we were too strict, too careful, too over protective over him. I saddened me that he didn’t get to be a normal kid. Then I realized he did get everything he wished for. The trip to Disney was more our wish for him. Our wish for our family. Conor most likely would’ve gotten bored and overwhelmed by it all and spent most of the time in the hotel room on the floor playing trains.
He got his wishes. He wished for trains. He got them. Daily or at least weekly! He wanted to be home and he was when ever he could be. The simple things are what he wished for. Time with his family, trains on the floor, the newest Scooby doo movie, his brother. Sure he wanted to swim with sharks, but even if he’d lived till 100 I wouldn’t have let him do that!! He did all the things he wanted to do. He was always the kind of kid that wanted just to go for a train ride or learn to skate or play in the dirt. He did all that when he was able. I wanted so much more for him. I wanted him to do so much more, but that was for me, not for him. I only wish I could’ve found a way to make all of our ultimate wish come true, for Conor to be better, for our family to be whole, for cancer to be cured, for no child or family to go through this, but sadly that didn’t happen. I have to be happy knowing he lived the life he wanted and got the things he wished for simple little joys each day. He didn’t let a little thing like cancer stand in the way. He adapted and was able to make the best of a really crappy situation.
I’ve been trying to do that in little ways. Just figuring out things that I want to do and do them. I have pretty much all I’ve ever wanted. Little things, like my home and my family. I could happily leave out that part where my son gets cancer and dies, but I am trying to come to terms with that, trying to hold on to Conor and trying to get through each day and some how create tomorrows. I am trying to pursue my interests more and just concentrate on appreciating what I do have. Each day I grieve, I mourn, I allow myself to fall into it, and that helps me get through it. I have to really experience each emotion in order to deal with it. I still have a lot of work to do. I am going to try and do more and experience more. It’s made me not keep putting off the things I want to do. I haven’t figured them all out yet, but as they come to me, I will try and make them happen. I am like Conor that way. A tub of Haagan Daz ice cream and good book (with time to read it!) is sometimes just the right thing. Enjoying that with my son asleep on my lap only makes it better.
Aidan and I are having a night on our own tonight. I surprised Darren by finding some last minute Metallica tickets this evenings show. One minute he was getting ready to drywall, the next he was leaving for the concert. When the tickets when on sale a few months ago, he didn’t buy any because we didn’t know where we would be or what our situation would be with Conor and I know he was disappointed but it wasn’t a huge deal in light of what we were (and are) going through. When I checked today and saw there were tickets available, I figured it was a good way to make him smile. I know I’d love to be sitting at a bon jovi concert now! I hope he has an incredible time and I can’t wait to hear all about it when he gets home tonight!
I forgot to mention my “Conor moment” in the last update - one of them anyway. I’ve had lots. On Saturday as we were driving into the hospital I had turned to Darren and asked him if he was sure that he wanted to go there. At that moment a song came on the radio. It’s a Creed song and it came on EVERY time we drove to the hospital in Edmonton. EVERY time. There were few times that Conor wasn’t scheduled to go in the hospital and I’d hear that song and sure enough later that day we’d be on our way in with fever…When we heard that song, we just looked at each other and cried. He was with us. It’s what made it such a wonderful visit.
I love you Billy.

Tuesday, March 23, 2004 3:44 PM CST

Since my last update, I have gotten alot of emails from people with their favorite Conor memories and my girlfriends sent me some of their favorite "conor moments" little pieces of Conor that keep us all smiling...SO I would love it everyone could do this for me. Just email them to me and I am going to put them all together and put them on the page.

Saturday Darren, Aidan and I did something I have been wanting to do for awhile. We made a visit into the hospital in Edmonton. I had picked up some toys for the prize cubbord and have been meaning to get in there for a while. I was sick since coming back from Bermuda and had to wait and make sure it was all clear. I didn't want to bring anything with me! We picked up lot of coffees and donuts and off we went. It was SO WONDERFUL to be there. I thought I may feel upset or sad or scared or something, but I really felt good to do it. We spent some time talking with the nurses,and some of the parents. Some kids were hareder to see than others, but even now, I still have such a sense of HOPE for all kids that it actually made me feel good to be there. One boy in particular, really tugged at my heart. He was a special friend of Conor's - whenever they could they would ride bikes or the tractor together. They were close in age and alot alike. I just found out when we went in on Saturday that he had relapsed. That is such a horrid word! But he is fighting hard, he is a strong boy and there is ALWAYS HOPE. He was laying in bed watching scooby doo and demanding his mom get a popsicle when I stopped in.

Yesterday we took aidan to the amusement park at the west edmonton mall. Darren had the most fun I think, riding a Roller Coaster for the first time! But aidan had fun too! He got on two rides with us, and really enjoyed the kiddie train ride throught the spooky tunnels. We took aidan to play in the toy store and it was a little hard. He played with the thomas train table and I had time to notice all the new thomas stuff out that I didn't have to buy. It was very emotional to say the least. There was this new bendy track that conor would've went crazy for, a new, improved cranky and a limited edition Gordon (A better view for gorden) that conor would've loved! it was one of his favorite thomas stories. There was so much more, some new thomas friends and even a Gold Dust percy...I can't wait to dicover what aidan loves. His personality is starting to emerg and I am so anxious to see what he will be interested in and what his passions are. He loves thomas and trains. But he also likes Toy Story and Puppies and Airplanes. We may even get him a Puppy...
I have been thinking of getting a train table and train set to donate to in conor's memory to the hospital. I 've got lots of ideas and plans and so many things I want to do to keep conor's memory alive. If anyone is interested in Helping in anyway, please let me know.
I see little signs of conor everywhere...do you?
kristy

Friday, March 19, 2004 10:44 PM CST

It hasn’t gotten more painful. I don’t believe that’s possible. It’s just become more REAL. My son is dead. How can that be? I gave birth to him! I carried him in my body, fed him with my body and he’s gone? How can that be?
I have memories. I have pictures, I have videos, I have voice clips on my computer. I even have stretch marks to prove he was here. How can he just not be here any more?
I made him a bracelet when he was in ICU. I used 4 different colors of string. I cut the string when the bracelet was the right length. I tied the remaining string to my computer bag intending to make myself a matching one. He was wearing the bracelet when he died. It was never taken off of him. I look at the end of that string that I have now and I wonder - if that string is the same string that made his bracelet and the bracelet was cremated with him…then isn’t he still some way connected to that string? How can it just not exist anymore ? Just because its cut, is it no longer connected?
I carried him in my belly. He was connected to me. Is part of him still with me??
It only makes it harder to understand.
A lot of people say it’s the nights that are hard. For me, now it’s the mornings. The early days. I miss him all the time, but the morning is when it hits hardest for some reason.
I feel hollow.

You know he loved to eat curry. But did you know he loved yellow soup and ice tea. He loved to drink out of a fancy glass (wine glass) like his mom. He loved tea. Especially camomile or whatever I was drinking. One of his favourite things to do with mommy was watch “my” shows. We always watched a baby story together. He always loved the moment the baby was born. He even played pretend with me where he was the doctor and he would ‘deliver’ my baby. He always laid it on my breast and told me the baby was here, that baby needs some milk.
I had him convinced him that Law and Order, Third Watch, Friends, ER and trading spaces were the best shows and he loved to watch them with me. Not always, but often if he was flicking through the channels and saw one of those shows (usually friends reruns or trading spaces) he would stop and say “its your shows mom, come here and watch with me” Sometimes I’d lay my head in his lap and he’d stroke me hair. Other nights he’d force me to watch “crazy quilt” or “max and ruby” or “home alone” or “Thomas” over and over again…if he was feeling really silly he’d force me to watch barney purely because he knew I hated it and he’d laugh and tease me saying “barney love you, barney loves you” ..And throw a stuffed Barney at me!
AT nigh we’d have tea and cookies. Some of my best hospital memories are raiding the vending machines and eating lots of junk food. Even long after he was asleep, I’d keep eating, watching TV or reading and loving just being near.
He was self taught on the computer and he is the one who taught Darren how to print on the computer!
He planted sunflowers with me, from seeds and they grew over 10 feet, reaching high up on our house. He learned to ride a bike with his friend Brooklyn. He loved going to the mall to go to the pet store and see the animals. He loved to shop with his mom.
He loved music and I know he would’ve been a great piano player if he’d ever learned to play!
He loved his brother from the moment he was born, if not long before. While I was pregnant he loved to massage my belly and my legs. He’d place his hands on my belly and sing songs. I really wanted a home birth so Conor could be there to see his brother being born. That didn’t happen but Conor was the first one in the room, bearing flowers and broccoli soup!
Conor loved to put ketchup on everything. He’d eat just about anything dipped in ketchup…but he hated tomatoes!
Some of our best, most in-depth, intimate, profound conversations took place while he was sitting on the toilet. He loved to talk.
He loved to play chase around the house and knock over daddy and later - crazy brothers with Aidan and daddy.
He helped build the patio
He helped paint the den and his room
He never backed down, gave up or gave in
He used to drive the car in the back drive with his daddy
We slept together every night. Except the night I had Aidan. And the night Aidan had his Aphaeresis and I stayed in hospital with Aidan.
He hated bananas but loved banana bread
He loved marshmallows, and hot chocolate with lots of them in it, smothered in whipped cream and a bowl full of marshmallows on the side.
He LOVED chocolate chip cookies and cinnamon buns
He used to pin me to the floor and smother me with kisses
He talked in his sleep.
He had cold feet and warm hands.
He had freckles on his nose and only on one side of his neck.
The bottom of his feet were just as soft as they were when he was a baby
He was born at 8:32 pm. After only 3.5 hours of labour. He was ten days past his due date!
He gave me fudgeeo’s on my 29th birthday
He always found a way to make himself be heard and demanded to be listened to
He used words like ‘actually’ and ‘concur’
He had the greatest smell.
He changed me, he changed everyone that knew him.
He is amazing.

One of Conor’s favourite books was “Are You My Mother?” I can’t help but picture him now, lost, wandering, looking for me, trying to come back to me. Asking anyone he meets “are you my mother?”.

Monday, March 15, 2004 11:30 PM CST

Really. What the hell is the matter with people? Yesterday, driving home we had stop in the middle of the road, as did cars coming in the opposite direction because three children, all under the age of four where literally playing in traffic. They were taking turns pushing one another on a bike, INTO the traffic. They were running back and forth between the cars, one child even pushed another into the street. No hat, no mitts, no warm boots. Its March in Alberta. Its cold. No parents, no adult, no babysitter or caregiver - hell not even a dog to watch over them was present. WHERE THE HELL WERE THEIR PARENTS? WHY THE HELL DIDN’T THEY CARE?
I did what I could. We waited, as did other drivers of other cars. Told the kids to stay off the road, which b they did but I was fearful for how long they would do that.
I came home and called the Police and asked them to go and take those kids home. I pray they did.
Today as every other day I saw countless kids in countless cars or vans or trucks. No seat belt, no car seat…WHY?
I may not be a perfect mother, who is? But come on! A car seat? A seat belt? Not letting your kids play in traffic? Simple things.
Today I was out walking with Aidan, splashing in puddles, searching for ‘fish’ in rain puddles, waving to dogs. A car came up my street so fast that it barely had time to register at all. Thankfully we were well off the road. We were near the stop sign, so I actually got to look at the driver as he barely slowed, let alone stopped before speeding away again…I shrugged my shoulders, held up my hands in the air yelled “WHY? WHYDO YOU HAVE TO GO SO FAST??” SLOW DOWN!” He laughed at me. Looked confused, like I was the crazy one. I don’t understand why anyone would take any risk in any way with the life of a child.
If nothing else, protecting them should be our main job because there are things we can’t protect them from. We should do our best with the things we can.

Its getting harder. I miss conor with every breath. I miss him so much I feel disoriented. Do you know he’s not hiding in the garage or under the patio or in the fridge? Trust me, I looked there. He’s not there. I keep hearing this low moan, this gutteral wail wherever I go. I realized it was me. The sound just comes out, I have no control over it. Its like my body is grieving for him before my mind has a chance to catch up. I can still smell him.
Do you know he made me a birthday card? A long time ago he was painting. He made some pictures and birthday signs for Aidan. He made one for me. I told him my birthday was a long way away. Yet he still wanted to make one for me. He told me to let it dry, but not to look at it and to hide it so I could have it on my birthday. Of course I did just that and forgot about it. I found it today, hidden under a thousand other papers on my cork board. My birthday card. Did he know he wouldn’t be here for it? Did he know he would die the day before? How? My son was amazing. Did I ever mention that?
Did you know he loved to bake? He made the best sweet potato biscuits…he loved to make muffins and loved to create his own recipes! Darren was the taste tester for those.
Do you know he once snuck up behind me while I was washing the dishes and bit me on the butt so hard, scared me, startled me so much I almost sent him flying across the room, but caught myself just in time realizing what had happened and what he’d done? I yelled at him at the time more outta of guilt for almost hitting him for him having startled me and and biting me! But later we laughed . I still laugh thinking of it. What the heck makes a two year old sneak up on his mom and bite her butt? Pure sillyness I guess!
We used to get a bath together every night when I was pregnant on Aidan, and he’d lay on my belly singing songs to Aidan. Until one day he told me that I was too big, that I made all the water go away and I had to get out so he could play. He said my belly was to fat!
I miss his laughter.
Kristy

Sunday, March 14, 2004 9:20 AM CST

I had an oppurtunity yesterday to thank some one involved in conor's life and I didn't take it. I felt odd approaching some one I hardly knew so I didn't. Way back in August of 2002 when conor was first diagnosed, and was going in for his surgery for his first bone marrow aspiration or his broviac (they were two weeks apart and I can't remember which one it was!), we were admitted the night before. We were obviously a wreck, numb and in a fog so everything just kinda happened out of our control and we had no idea we could stand up and say no, or stop or even wait! Anyway, they had need a IV start for conor, to keep a line open for surgery etc. No one could get one. Various doctors tried and conor screamed fought, and we all held him down. Two doctors were there. I believe they were ther pediactric residents, as it was the weekend. They both tried to no avial. One of them spied conor conor's bowl of bouncy balls... and the fun began. He spun those balls around the bowl and played with conor. He thought it was incredibly funny that conor threw them all on the floor, and made everyone pick them up. They took conor into the part of the room where both doors closed and created a small room, and threw the balls around and just played. He gained conor's trust, took a minute to get to know him and made friends. Then they blew it all by trying to get a line in again! Haha. They never did get that line in that night. In fact this doctor suggested waiting until morning in surgery and doing it once he was under the anesthetic. So we did. But the doctor still took a few more minutes to play and talk to conor. Other people there that night were with conor throughout his entire treatment, nurses (susan, and kim) but this particular doctor was not specific the the oncology ward so we only saw him one other time. It was in the ER about a year later. We had gone in for a fever and were going through all the usual crap that they make you go through despite knowing that you are going to be admitted and despite knowing that they can't do anything in the ER...anyway, it was 2 or 10 hours into waiting and we had seen every doctor and nurse in the place. We even endured shift change! By now we were a little more savvy and could tell the nurses what to do and how to do, and tell them all what a broviac was and, no you didn't need to do an IV line...any way I'm getting off track. We were all fed up and tired and just wanted to get up the unit. We thought we had covered it all when in walked a fresh faced, bubbly eager to please first year med student. I was poliete for about 5 minutes, but then it just got a little ridiculous. She looked at me and started doing a case history on conor. I mean right from my pregnacy. And she wanted to examine conor. Who at that point was having no part of cooperating with yet someone else. at that point I broke, I was fed up with the whole situation and being put through the systemm for their benifit, not conor's. I know everyone has to learn some where, but not on my kid, not after 5 hours in waiting in ER. When I told her no, she was shocked and didn't know what to do. She said she had to get her supervisor. And went to get him. It was the docotor we had met the before conor's first night in. He walked in, immediately saw Conor and remembered him.He was great with him. Soon we were on our way to our room. Darren and I both commented on what a great doctor he was. As we saw so many, so often, we often had nick names for doctors and nurses etc. (most I will not share!!) but we called him Dr. Bouncy Ball. I must admit I have no idea what his name is to this day...
That was the last time I think we saw him until this past Decemeber. Conor was inpatient for fever and running aroud the hospital on a tractor, causing a commontion on other wards. He was laughing, having fun when a group of doctors walked hurridly by. One of them was dr. bouncy ball. He saw Conor and smiled. He didn't stop, didn't say anything to us, but we over heard him talking to his colleauges. He said "that's the bouncy ball kid!" and launched into the story of conor and his boucny balls. He remembered conor. Conor had stuck with him.
That is why I wanted to thank him. For caring, for remembering, for making a differnce. I even had a bouncy ball I wanted to give him... but I did't.
We were in the parking lot of a CD store yesterday getting ready to leave, when Dr. Bouncy Ball walked out of the store and got into the car next to ours. I was holding a bouncy ball at the time that I had found in the car. I wanted to get out, to tell him who I was, to give him the bouncy ball and thank him, but I didn't.
Next time I have the oppurtunity to thank some one I will take it.
Kristy

Friday, March 12, 2004 10:30 PM CST

For some reason music seems to be the hardest for me. I can listen to it, I can't play if for aidan and I can't sing to aidan.
toight though we were driving in the car and I put on a cd that we used to play alot. Its all fun kids songs by sandra boynton. We all sang and car danced. Aidan loved it so much. It was hard. I felt that ache in my belly and that big gapping hole in my soul, but I kept on singing. Eventually it just became fun and not so bittersweet. But then it all came flooding back.
I miss him so much. I am not so strong or brave or amazing anymore. Some one told me the other day that i looked great. Man can appearances be decieving! Our Bermuda pictures look amazing. A happy family on vacation have the time of their lives. What a shitty way to get a vacation. It was a great vacation. A great break from reality, but what now?
Mostly I am doing good. If hanging onto denail is good.
I've been reading about all kinds of stuff. About what differnt cultures believe about death. About life after death, about life. About meaning. I have ten diffent books open at once.
I am facinated by what people believe and what gets them through times like these and why some people feel the need to make their beliefs mine. Believe. Love. Live. What else can anyone do?
I feel conor's spirit. I feel it. I have it next to me. But its not enough. I want his silly grin. His goofy laugh, his stinky butt, his curry breath, his never ending demands, his curly hair, his impish eyes, his infectious laughter, his hand in mine...his squeaky voice, his cold feet, his hand on my face saying "your so pretty mom". That's all. That's all I want.
Kristy

Wednesday, March 10, 2004 9:09 AM CST

Sorry to be such a stranger. We took off for a few weeks for a much needed rest. We purposely left the computer home so that we could concentrate on ourselves and our family. We spent two wonderful weeks in Bermuda. Thank you from the bottom of our hearts to Bina for helping make it possible! For giving us a place to stay and for all those wonderful meals!!

It was an emotional trip, but wonderful all the same. The first week was hard. The first few days really. It was like "what the hell were we thinking?? what are we doing here??" it was the impact of everything new,nothing to remind us of conor where ever we looked. But you know what? he was THERE! Right there with us the whole time. Playing on the beach, throwing sand, chasing lizards, looking for pirate ships...even though he had never been there or seen the things we were seeing it was easy to see the things through his eyes, like he was pionting everything out to us. Aidan had a particularly good time, and immediately showed the same attachment to the ocean as I have. When we were landing, as soon as he got a view of the ocean below us, he stood up on my lap, held onto the window and was awestruck, saying over and over "water, water". He was absolutley drawn to it! It actually took us a few days to get to a beach we had to work up our nerve to brave the buses and walking on the streets-plus it rained the first few days! aidan acutally learned the word 'rain' in bermuda-how crazy is that?. Anyway, it was almost like I didn't even need to see the ocean. I felt it the moment we got of the plane. I could breath it, smell that wonderful, damp, salty air and feel every pore soak it up! It was incredible. I felt so much more connected being close the the ocean. And when I finally got to jump in it, it was incredible! We had the beach to ourselves and looked every part the crazy tourists swimming in 'winter'. Hell, 25 degrees is summer to me!


We met up with some friends who joined us from Atlanta. I met allison when Conor was an infant on my October moms online group. Her son Benjamin's birthday is close to Conors. It was so incredible to meet them! Aidan fell in love with Ben Ben right away ( benjamin knew his name was a little hard for aidan to say so right away he said "my name is benjamin, but you can call me ben!) His little brother was there too, Harrison who aidan referred to as Baybee. At first I thought it would be really difficult to meet and spend time with Benjamin, because he and conor were so much alike. Not just in how they looked, Benjamin has wild curley hair, but in their energy and spirit. It was a little hard to see benjamin doing all things that I know conor would being doing were he with us, but then I just enjoyed him for him and loved watching him just dive into everything, soak up every bit of knowledge he could and talk the ear off everyone who would listen! I wish Conor had got to meet him. Though I am not sure how it would've went. That much energy colliding in one place may have been destructive!

We spent our days hanging out and doing family stuff and our nights by the pool just chatting. Twice the kids feel asleep outside and we put aidan and baybee in the strollers to sleep and benben on a lounge chair and sat in the hot tub and talked and laughed. Although never having met allison and bill before it was like hanging out with old friends. Which they are!

It is so permanent, this missing conor. So raw. Its amazing that one can live through this kind of pain, let alone function and exist 'normally'. I am sure there is no normal way to do this. And I, we have our good days and bad days, but it never goes away. I had honestly thought that if anything happened to Conor I would curl up and die too. But amazingly that did't happen. And I think that it was the same kind of concious choice I made when conor got sick. I could do that, I could sink into that pit, and never return. That blissful nothingness...but where would that leave aidan? I realized I have made the same committment to aidan I made to conor when he got sick. I promised Conor I would always be there for him, and I was. Now I have taken that same energy and turned it into being there for aidan. That doesn't mean I dont' have moments, hours or days of agony and longing for Conor, it just means I have found this purpose and committed to it and its what is going to get me through. I have to make my love and committment to aidan equal my pain and longing for Conor...Aidan is so much of my inspiration for my days now. He has blossomed in the past few weeks, talking more, exploring branching out. I thought maybe that it was because I hadn't had the time to really see aidan in the past two years, but I don't think that is really true. I honestly feel that aidan was content to sit quietly while we did what we all had to do for conor and now he feels its ok to be more demanding and be more noticed. His energy has changed and I notice that people notice him more, speak to him more and want to be near him. He has had some difficultly adjusting to missing conor. For awhile he wouldn't let darren and I be in differnt rooms, he always seemed afriad. And I think the trip was good for that, because we all got to stick together and aidan seems much more secure now.

Right now we are just going to try and settle in some kind of life. Find who we have become and concentrate on our home and family. Our house has been ignored for the past two years, and we had been in the process of renovating and decorating when conor got sick. So we'll start all that again.(where is the extreme makeover home crew when you need them???) I am turning the extra bedroom into MY room. Someplace I can go read, or write or just hang out. Some where to put my stuff, light some candles and just BE. I really need that. We are also going to redecorate the boys room. The plan was they would share a room, but that room is uniquely conor's we are faced with the task of redecorating that to Aidan's space. I have a new quilt for him, with puppies that he loves and we'll go from there. We'll keep most of the toys, as those trains need to be played with, but put away the stuff that was special to conor. Hopefully soon we can get a new bedroom set for aidan and make the room truly his. Not that either of my boys ever slept anywhere but our bed, but they still need their own space! Conor always slept with us, but loved his room. I think aidan is going to be the same way. We thought about moving, but right now it just feels right to be here. Especially when I saw aidan's face when we pulled up to hour house after coming home from Bermuda. Pure joy. Conor loved this house, loved being here and coming home to it. So do we all. It represents our family. We brought Conor,(I really have no idea what word to use....) home yesterday. We have yet to get the special train urn we are hoping to find, but we needed him here with us. darren especially I think. He had alot of trouble sleeping and since slept much better last night, knowing conor was with us I think. It feels good to have him home.

This morning Aidan and I went out to put out some bird feeders and seed. After I took him to play on the swing set for a bit. Despite there being no wind and neither of us near the second (conor's) swing, it swung back and forth from the moment we got there until well after we left. I know Conor was there laughing along with his brother. And you know, in every picture we have taken, it is so very clear to see where conor is. He's right there between darren and I, a little to the left of me, with darren's hand on his shoulder. You can see him, you don't even have to look that hard...

That's it. where we've been, what we are doing. Just living our lives, missing conor, loving conor and keeping each other close. Thanks for sticking around and for all your love and support.

Kristy

Sunday, February 22, 2004 1:19 AM CST

Where are you?
Where did you go…
How come I can’t find you?
Why won’t you come to me…
Find me Billy,
Find me…hold my hand while I sleep
See me in my dreams

Where are you?
Why can’t I see you…
Where did that light in your eyes go?
Where did your laughter go?
Your excitement, your joy…

Where are you?
Who will hold me up
Who will keep me strong
Who will give me hope??

Billy Billy Billy
Where are you?

Your trains are here,
Your cloths and your books
Where are you now
That you don’t need those?

Are you somewhere better…
Do those things not compare to the joy you find now?
Are you safe
Are you free
Are you happy
Do you miss me?
I hope you don’t…

I hope I am the only one missing something
I hope it is only I that miss you
I hope you are free from such emotions

I want to know you see me
I want to know you are ok
Come to me, tell me, show me
Let me know you don’t miss me
Let me know that you don’t need to
Let me know I am the only one that is searching, that is missing

Give me your strength,
Give me your love
Give me your spirit
Show me in my dreams

Where are you???
Come to me, tell me
Be with me always…
Don’t wander far
Hold on to my hand
Be with me

Where are you….

Saturday, February 21, 2004 12:05 AM CST

Yesterday I heard the most amazing song. It is a song calld "HOPE" by Paul Brandt. It was written for and all proceeds from the song go to the Alberta Children's Hospital Founation. The song isn't availble on any album by only by download at :

http://www.paulbrandt.com/mainnew.htm

One line in the song really struck me - "I get all my strenth from you". I have always said that about Conor that he was the source of my strength and my HOPE. People have always said to me ( and still do! ) "you are so strong", "I don't know how you do it" and "you are amazing". I have never felt strong, nor do I now. It was Conor that lead me, that taught me, that gave me the strength to go on, to be there for him, to fight for him. It was him who gave me the hope to keep being strong for him.
I had a bad day yesterday, full of memories and missing conor. Then we ran into of his nurses from Edmonton. In talking with her we soon starting laughing and sharing stories about Conor. She told us that there isn't a day that goes by that somehow, some one or something reminds them of Conor and he is talked about remembered. As I 've said before it doesn't make any of this any easier, but it softens it just a little to know that he still bringing smiles to the faces of all that knew him. It was a little easier to go on with my day after that.
Then it occured to me that he STILL is my source of strength. He is gone but he is finding little ways to show me how to gather strength and go on. He has taught me how to take that strength from him and from all those around me. But most importantly he has shown me how to take the strength I need from aidan -who is a source of courage, strength and love for all of us. Conor may be gone from my arms, but his courage, his strength and his HOPE are still very much alive.
So please if you are able, visit the link above and download the song, (it is $.99). Not only will you get a beautiful song, but you will also be helping an amazing hospital become an even better one.
Kristy

Thursday, February 19, 2004 3:58 PM CST

Just spent an afternoon out walking and having lunch with Darren and Aidan. From the outside, it looked as if we were just a family out having a day together, enjoying each other. Having fun. All that is true, but there is that big gaping hole right in the middle of us. Everywhere, everything is a reminder. Be it a happy memory, or something that jolted us into a painful memory like the funeral home or the doctor’s office, either way it was met with a feeling of despair.

On the restaurant menu there are the things that Conor would have loved to order. Or in the store there are the things that would’ve brought a smile to his face, eased the boredom of the hospital stays and bought me five minutes to myself. On the street outside our house are the huge puddles of water that Conor would spend all day jumping in. Laughing, getting wet and just having fun. He’s everywhere.

No matter how I think of him or what reminds me of him or the joy I get from seeing Aidan be a little boy, it still hurts. There’s that dull ache inside me that says he’s gone. There’s that constant reminder that he will never do those things again. Things that every kid should do. Things that Aidan does or will do. It doesn’t stop my pleasure in seeing Aidan love life. It heightens it. But it does so because of the pain that is there, because of that ache. I would’ve appreciated those moments just as much with Aidan without having gone through the hell with Conor. I loved my moments with Conor. I took joy from his joy and his wonder. I didn’t need cancer or dead son to give me that insight. I saw the beauty in my kids even before all this.
From the outside, I look normal. My hair is combed, my cloths match, hell - my teeth are probably even brushed! I function. I eat, I sleep, I laugh, I go through my days as I always have. Except there is something missing that will always be missing.

I may know there was nothing more to do for Conor. I may know that he is at peace, that he is now finally free. I may know he touched everyone who knew him. I may know he left this world a better place than he found it. I know all that. But I don’t give a damn about that really. Its how I FEEL that matters now.

Birthing my sons was the most incredible, life altering, profound events in my life. With both boys I had natural births and the knowledge I gained from those experiences I will carry with me forever. It changed me and defined me. With Conor I knew the birth I feared, but I had no idea what I wanted. I quickly learned though, that the pain of childbirth could be used to power that birth. I harnessed it and used it to bring my son into the world. With Aidan I knew how to do that. His birth was more peaceful, more relaxed and a lot faster. I took the pain I felt, turned it inward used it to my advantage. It was empowering. I want to somehow find a way to harness the pain I am feeling now and turn it into something more powerful and somehow, grow from it.
The mind is an incredible tool. I need to find a way to take what I can from all this, to put my mind to work at using this pain, and empower myself to move forward. However that sounds a hell of a lot easier that it will be I sure…
Kristy

Thursday, February 19, 2004 3:58 PM CST

Just spent an afternoon out walking and having lunch with Darren and Aidan. From the outside, it looked as if we were just a family out having a day together, enjoying each other. Having fun. All that is true, but there is that big gaping hole right in the middle of us. Everywhere, everything is a reminder. Be it a happy memory, or something that jolted us into a painful memory like the funeral home or the doctor’s office, either way it was met with a feeling of despair.

On the restaurant menu there are the things that Conor would have loved to order. Or in the store there are the things that would’ve brought a smile to his face, eased the boredom of the hospital stays and bought me five minutes to myself. On the street outside our house are the huge puddles of water that Conor would spend all day jumping in. Laughing, getting wet and just having fun. He’s everywhere.

No matter how I think of him or what reminds me of him or the joy I get from seeing Aidan be a little boy, it still hurts. There’s that dull ache inside me that says he’s gone. There’s that constant reminder that he will never do those things again. Things that every kid should do. Things that Aidan does or will do. It doesn’t stop my pleasure in seeing Aidan love life. It heightens it. But it does so because of the pain that is there, because of that ache. I would’ve appreciated those moments just as much with Aidan without having gone through the hell with Conor. I loved my moments with Conor. I took joy from his joy and his wonder. I didn’t need cancer or dead son to give me that insight. I saw the beauty in my kids even before all this.
From the outside, I look normal. My hair is combed, my cloths match, hell - my teeth are probably even brushed! I function. I eat, I sleep, I laugh, I go through my days as I always have. Except there is something missing that will always be missing.

I may know there was nothing more to do for Conor. I may know that he is at peace, that he is now finally free. I may know he touched everyone who knew him. I may know he left this world a better place than he found it. I know all that. But I don’t give a damn about that really. Its how I FEEL that matters now.

Birthing my sons was the most incredible, life altering, profound events in my life. With both boys I had natural births and the knowledge I gained from those experiences I will carry with me forever. It changed me and defined me. With Conor I knew the birth I feared, but I had no idea what I wanted. I quickly learned though, that the pain of childbirth could be used to power that birth. I harnessed it and used it to bring my son into the world. With Aidan I knew how to do that. His birth was more peaceful, more relaxed and a lot faster. I took the pain I felt, turned it inward used it to my advantage. It was empowering. I want to somehow find a way to harness the pain I am feeling now and turn it into something more powerful and somehow, grow from it.
The mind is an incredible tool. I need to find a way to take what I can from all this, to put my mind to work at using this pain, and empower myself to move forward. However that sounds a hell of a lot easier that it will be I sure…
Kristy

Tuesday, February 17, 2004 9:55 PM CST

Sometimes is hard to tell which hurts more. Having him gone or realizing that I am still able to function and survive without him...
How can that be? How can I still just go on? I miss him indescribly, yet I still get up and go on with my day. I am aidan's mother, I am darren's wife. I am the still conor's mother am I not?
I see him everywhere, yet I can't see him at all. I feel him everywhere, I feel him in me. yet i still yearn to hold his hand while I sleep or have him pin me on the floor and lick my face.

I miss his smell. When he was an infant I loved the smell of his poops, and his sweet milky breath. Later I didn't love the smell of his poops so much, but I loved the smell of his garlic curry breath.

I know I will survive. I will be forever changed, but I will survive. I have to fullfill my purpose, what ever that may be, so I can one day be with him again. when conor was born, I was sure that my purpose in life became clear. I was to be his mother. Now I realize it is so much more than that. Yes I was to be his mother, to bring him into this world so he could fullfill his purpose.. but what is mine? I know I have to contine doing what conor has done, reach out to others, teach others, help others. Some how, some way I hope I can accomplish a fraction of what he has.

I miss him today. I see him in Aidan. In his eyes, in his laugh. I see him in Darren. They have the same beautiful eyes. When I miss conor I look at darren and I see a little piece of the physical being that Conor was. When I miss conor I wrap my arms around aidan and he kisses my cheek. It eases the ache, but dosen't cure it.
I hope I always feel that ache. Perhaps that ache is Conor letting me know he is with me.
Kristy

Monday, February 16, 2004 1:20 AM CST

It occurred to me today that I hadn’t updated in quite awhile. I guess I’ve been trying to figure it all out in my head, and perhaps that is not what I need. Perhaps I need to write it all out, to see it, to believe it. I may even be repeating myself, but I don't really care.
I have read and reread my journal entries of the last few weeks of Conor’s life trying to figure out where it all changed, where it all went wrong. What did I miss? How did it happen? What could we have done differently? And you know what I found? That the signs were there for a long long time. That Conor KNEW what was happening, that I KNEW what was happening that we were preparing ourselves for what was to come. Sounds pretty crazy doesn’t it?
I remember so clearly the day of Conor’s LP, lung wash and nasal aspiration. I asked him what he dreamt about when he was sleeping. He told me he dreamt of flowers. Immediately I pictured his funeral. I saw him watching it. Lots of flowers…You see why I feel crazy? The steps that we took on Conor’s journey gave me an incredible sense of de ja vu. I often felt I was following a plan, that no matter what I did, the outcome would be the same. Remember when I wrote about the rocking chair? I firmly believe that had we not chose to go the transplant route, then yes, Conor would’ve died in my arms, at home, in that chair. I saw that, and I moved forward, fighting to change that. We went to Calgary for transplant and discovered WOW, his cancer had changed and changed treatments. We fought some more. And where did it get us? To the same ending, only I was laying in a bed in the hospital and not home in a rocking chair when Conor died. I believe that no matter what I did, no matter how hard I fought, that that was his destiny. To die at age four. To touch people, the change people, to be here for just a short while. WHY? I may never know. He was lucky enough to know his purpose in life; he fulfilled it and moved on. How many of us live decades beyond him and still never know that purpose? He knew. He always knew that his time was short. He told me in little ways. The ring, the goodbyes, his love. I believe he fought so hard, not for him, but for us, for all of us that loved him. He knew we weren’t ready.
I am rambling. I know. I have a licence to be crazy though. My son died…
I see him everywhere. I feel him everywhere, yet I miss him terribly. If only I could dream. If only I could dream of him. I dreamt last night for the first time since his death. He was in the dream and spoke to me, but yet I didn’t feel it was him. I know it was me wanting to dream of him, and not him coming to me in my dreams.
I look for him everywhere. I can’t find him. He’s not upstairs playing trains where I thought he’d be when we came home. He’s not hiding in his closet. He’s not outside on his swing or playing in the dirt. He’s not here. Physically. I feel him. I need to see him.
Aidan looks for him. He can’t understand. He looks out the window or at Conor’s picture and asks to go for a walk. He remembers walking to the hospital to see Conor. I guess he figures that’s all he has to do to see him. Is going for a walk. Aidan and Conor had such an incredible bond that Aidan feels something very deep in Conor’s absence. He has been clingy and scared, waking at night just looking around. He can’t understand why all of a sudden everyone is home, but Conor isn’t. Why is it that he can watch what he wants on TV and play with any toy he wants without a fight. He likes it, and then realizes that it may be good but something just isn’t right. You can see his little face wishing it were different. Wanting to be hit over the head with a train and have the toy he is playing with taken from him and the show on TV changed to something else. To something Conor wanted to see. You can tell aidan would like it any other way. So instead he spends his time comforting us, hugging us, kissing us, climbing in our laps and wiping our tears away. If only his touch could wipe away the pain.
I feel Conor’s absence not in my heart, not the ache there I thought I would feel. But I feel in deep in my belly. I feel hollow. Like he was ripped from inside me. I feel his absence in the place inside me where he lived for nine months. Or more accurately nine months and ten days! He took his time coming into this world. Perhaps he knew his time with me would be short and wanted to stay with me as long as he could. I am so glad he did that.
His memorial was beautiful. Incredible. It was uplifting and fun. There were balloons and flowers and songs. There were trains that Aidan played with, and a piano that Aidan played too. Sir Thompham hat officiated, and a very handsome conductor helped out. His favourite stories were read, his favourite songs were sung, and everyone had to tell a knock knock joke. Conor LOVED knock knock jokes. And thanks to Lyn and her wonderful tribute to Conor I will never hear another one again without thinking of Conor, knocking on my heart and knocking on my soul. Filling me with love.
It was an odd feeling to see Conor lying in the casket. Odd because, it was his shell and not him. It was so obvious then that CONOR was his SPIRIT. He was the light in his eyes, the squeak in his voice. The heart in his laughter and the sparkle in his being. I couldn’t see the person lying there as him. Conor left me long before that. Conor left me long before his body stopped breathing. I felt Conor leave in little ways long before that. But mostly I Felt Conor leave that Sunday we intubated. Not right away, but later that night when we were alone. I felt an electricity, a spark, a change in the air and I knew he was going. It took a few more days for him to leave completely. For him to remove his spirit from that body, but I know he said his goodbye to me then.
I waited; we waited for a sign that he was going to come back to us. But the only signs we saw were the ones that told us there was absolutely no way we could bring him back to us. His lungs were filled with fluid. The machine was breathing for him. There was nowhere left to go. He wanted us to release him.
That Wednesday, so many people came to see him. It got crazy. That morning had been so incredibly beautiful. I spent hours massaging him to his favourite music. Anyone that came in to see him, touched him, held him, massaged him. The day wore on, we had meetings with the doctors and it was clear to us all that there was nothing we could do for him. I remember thinking that everyone had to go now. That the time was soon, that I needed to be with him. I told everyone to leave. I lay on the bed with Conor and I held his hand. I spoke to him, the way I always have- heart to heart, mind to mind. Without saying a word. I asked Darren to get our room ready down the hall just in case. He thought we had more time. I could feel the change in the air, it was thick with something. Darren couldn’t feel it like I could. He said he wasn’t ready. I thought that maybe it was me, feeling scared. I left the room and walked around the hospital. I thought that if I did that I could figure out if it was me causing those feelings or if it was Conor. Outside the room, those feeling changed. But when I came back into the room, it was there again. It was clear. Not only by my feelings, but by the monitors as well. He wasn’t holding his oxygen. When they suctioned him, it was worse each time and there was more and more blood… I knew if we didn’t move him soon that he would die there, in the ICU full of machines and tubes and lines. We asked for the doctor and within minutes we were getting ready to move. We unhooked him, and took him to our room. We lay on the bed and everyone left. We were told he wouldn’t try to breath. He did try. He was trying to keep his promise to always fight. It was hard, so very hard but held him and told him to let go. We helped him. And he did. We held him some more. We held him for a long long time.
The feeling of peace mixed with our agony was like nothing I could ever begin to describe. He looked like he was asleep. All those times when he was a baby when I would wake up at night and see him sleeping so peacefully I would fear he had died in his sleep, when I would panic and shake him just end up pissing him off and have him cry and scream and turn to me to nurse to go back to sleep…that’s what he looked like. I wanted so bad to shake him awake, to know that he was just sleeping. He wasn’t. He was completely gone.
We kept him wrapped in his quilt and held him, rocked him, sang to him. His doctor came in with us for a while. He spoke to us about all the things he had to. But more than that he shared himself with us. He spoke of Conor, of what he meant to him, of who he was to him and he laughed with us. Conor loved dr. Lewis. He would always ask me to get him when something was wrong and tell me that he was the only person allowed to help him. They shared a special bond and were a lot alike. So much so it was hard to tell which one was the four year old when they were together! It meant so much to us to have him with us to share those memories of Conor with us at that time. We were also able to have Wendy with us and some of the nurses from Q that looked after Conor over the past year. It was so great to be able to share him with others that knew him and loved him. Finally after everyone left, Darren and I bathed Conor together. We were afraid of that at first, but then it just felt right. We held our child, we bathed him and we wrapped him his quilt and said our goodbyes. As he was carried from the room the peaceful calm left us and we clung to each other and cried. I felt as if someone had torn my very being from inside me. I felt raw and empty. Darren and I often wondered how parents do it, how they leave the hospital after their child had died. How do you do it? How do you just leave? How do you just drive away? Well it’s just that that you do. Suddenly we couldn’t get out of there fast enough. We packed our stuff and ran. I think I thought I would find Conor back at the apartment. He wasn’t there. I am still searching for him.
I remember going into the apartment, waking my mom and Glenda and telling them. I remember just holding Aidan, and falling into a dreamless sleep. I remember waking to Aidan full of wonder and surprise at Darren and I both being with him and the look of confusion when he realized we were both there. Aidan had said his goodbyes to Conor the day before and after that would not go near the room and would become very agitated and upset if we tried to bring him in. Aidan had gone to our parent room and picked up the ‘brothers’ figurine from the table, walked down the hall and into the ICU. He placed it on Conor’s bed and left. After that, was when he wouldn’t go near Conor again. He knew, he said goodbye and that was it. But that morning was still hard. He wanted Conor. He missed and continues to miss his brother. He may not understand it, but hell - who really does?
We are trying to get by the best we can. We think of conor with a smile and with a laughter. Its who he was. I always want to honour that part of him. We grieved for Conor for a long time. For the child he would never be, for the life he wouldn’t have. We grieved for him, for us in little ways over the past two years that it was incredibly comforting to Celebrate him and his incredible spirit.
None of that makes it any easier. None of that changes that for the rest of my life in any moment of happiness I will feel sadness that conor isn’t there to share in it. It won’t take away the ache and the longing to have just one more moment with him. Amazingly, none of this is real to me yet. I am so afraid what will happen when it does become real.
I have said it before, Conor is my hero. I took all my strength from him. He guided me, he told me all the steps to take on his journey. He taught me more than I could’ve ever taught him. He showed me how to listen to what is inside, and to follow that voice.

Kristy

Friday, February 13, 2004 10:53 PM CST

Hi everyone. Please don't acknowledge the ridiculous posts in the guestbook. Obviously some one is very lonely, very sad, very much in need of help. Conor drew people to him with his light and his beauty. Obviously there is one person in the world who isn't lucky enough to see that. And for that I feel very sorry...Let's not waste another second on such insignifigant things. There is so much more to focus on.

Kristy

Thursday, February 12, 2004 9:02 AM CST

Good morning. I have removed the said guestbook entry and I will continue to remove any such entries immediately. I am sorry I even acknowledged it. Its probibily exactly what she was looking for! Enough said.
Our day was filled with beautiful memories of my son, I don't want anything to take away from that.
kristy

Wednesday, February 11, 2004 11:24 PM CST

Ok, I came to update about the beautiful memomrial for conor and all who came to celebrate and love him. Then I find ANOTHER negative, self centred post from some one who should be anywhere other than on my child's site. HOW DARE YOU, YOU COWARD! Email me, post things in MY CHILD's guestbook using obviously false names, as this is the second such cowardly selfish entry and email. As I said to you last night. I have not, nor will I ever belittle your pain over not being able to have children. Please don't belittle mine over losing my son. I love my son, both my sons. I will feel sorrow for the rest of my life. How dare you presume you can tell me not to feel that. I wish you find the peace you need to be a better person and not go around being hurtful to those who already have suffered more hurt than I pray you never feel.
To everyone that has come here to offer your love and support, I will update tomrrow about the amazing service. Conor's love touched the world and today was a celebration of that. Thank you for sharing in it with us.
kristy

Wednesday, February 11, 2004 0:57 AM CST

***Please take a moment to remember Dylan. http://www.caringbridge.org/mi/dylan/
Dylan died this morning from complications of JMML and transplant. Our hearts are with you Sarah, Dylan and family...***


The past week has been a haze of emotions of drifting in and out of reality. Right now, I have been comforted by the out pouring of love for Conor from around the world. The lives he has touched, the people he has changed has touched me so deeply, that the burden of my grief is softened. Nothing will ease the pain of not having my son to hold but knowing he lived more in his four short years than most in people do in 80 allows me to see that he lived his life to the fullest and he lived the best life he could. He had a purpose, he had brought love and laughter and light to all who knew him.
I have laughed more than I have cried in the past two days. Anyone who comes to visit us or who calls us or who writes to me, does so with a smile on their face when conor's name is spoken. People are remembering his SPIRIT, his LIFE, his ESSENCE, with laughter. I am so grateful for that. It will never be easy for those of us left behind. but i feel him, I see him, I know he is happy. I feel so much peace for him.
I love you conor. Listen and watch closely tomrrow as people around the world take a moment to celebrate your amazing life. I am honored to be your mother.I am so very happy you chose me to hold your hand on your life's journey.

To all you nurses out there reading this, I ask one thing for tomrrow in conor's memory. Please declare tomrrow "NOTHING ON MY BED" day and do whatever you can to keep everything off your patients bed. Respect the only place they have to make their own. Respect one of the only things they can control. And please, take an extra moment to play...and kids out there in hospital, don't forget to fill those syringes with water and salute Conor by soaking your favorite nurse!

All our love,
Kristy Darren Conor and Aidan

Saturday, February 7, 2004 3:59 AM CST

I keep waking up thinking Aidan is Conor and I am so confused because there are no tubes or lines attached to him. Then I realize that it is Aidan in my arms, not conor and I look for him, only to be reminded that he is not here. I hug Aidan closer and my heart aches. Then again I am numb...
The Sunday Conor was brought to ICU I woke with a start from my fitful broken sleep, from a dream of Conor. I can't remember all the details, but the most vivid part is of the last seconds of the dream where Dr. Lewis is sitting in a meeting with us and others, writng something on a peice of paper and later outside standing in the cold telling us that there is nothing more he can do for conor. That was sometime in the early early morning of sunday. I woke up with a start to Sarah, Conor's nurse taking Conor's blood pressure and seeing that it was way, way too low. It was then I knew for certain the path the next few days would take. Everthing snowballed from that moment until that dream became real.
The ICU was where I felt Conor's spirit break, where any control he may have had was taken from him. It was horrible to see him so broken, so passive, trying so hard to keep fighting when it was clear he could not do so. I felt part of Conor leave Sunday night as I lay with my head on his bed holding his hand. I felt an electricity and I knew he was starting to go. He'd been gently preparing me for awhile,Saying good bye in little ways in the weeks before. The fact that he held on for three more days to keep showing his stregth and to say good bye was astounding. He knew we weren't ready to let go.
I keep thinking of him somewhere else. Alone. Without me. He's never been without me, without one of us with him. I think of him everywhere, all around me touching the hearts and lives of everyone who knew him.
Nothing comforts, nothing makes it real, nothing takes away the agony of him not being in my arms. They feel so empty. Aidan keeps filling them for me, reminding me that his love can help heal those wounds. It is Aidan that holds the key to getting through this. Our family seems so small now. Darren and Aidan and I. Its so raw to see the gap where Conor should be.
I held him when he died, I craddled him in my arms for hours after, looking more peaceful than I had seen him in almost two years. I bathed him with my husband and wrapped him in his quilt. I saw him be carried away and yet I keep waiting to hear the sound of his squeaky voice behind me, or to feel his warm hand on my face reaching out to me in his sleep. Sleep is the hardest, it is when we were the closest.
I am so very happy he has been released from his pain. THat he is freed from all of his fighting and he can be the carefree boy he always was. I am so very sad and I suffer for him now. Through all of the past year and a half I kept saying I would do anything for him to not to have to go through what he was. That I would gladly take his pain and suffering on as my own. Now I have. He is free and I am left here with all the fear and pain and suffering. At least now he is finally free of all that hurt.
Conor can you hear me? Did I tell you today? YOU STINK! Hey Conor did I tell you today? I LOVE YOU....even though you stink! Hey Conor did I tell you today??? I LOVE YOU.

Thursday, February 5, 2004 2:47 AM CST

Its the most unnatural thing in the world to hold your child in your arms and not feel the beating of his heart or the rise and fall his chest and the warmth of his breath.
Conor was finally able to let go tonight and died in my arms while we were in his daddy's embrace.
We were able to be together and conor was holding our hands. We had to give him permission to let go, he was waiting for it. It was almost like he was trying so hard to keep his promise to me and always fight. I had to tell him it was time to let go, darren and I told him over and over just to relax, not to be afraid, and let go. THat we loved him, no matter where he was, and we will always love him.
When I was in labor with Conor I pictured every moment of his birth and I helped him into this world by envisioning his every move. Tonight I did the same thing only I held his hand, closed my eyes and showed him how to let go to finally be free of all this. I helped him out of this life the same way I brought him in. With all our love.
Thank you for sharing in his journey.
All our love,
Kristy Darren Conor and Aidan

Wednesday, February 4, 2004 11:11 AM CST

There is really no change today, his chest xray is pretty much the same and he is getting lots of (for lack of a better word) yuck up when they suction his lungs. So we are still stable. Which is good. We haven't given up, we have just made a plan if things look like they will not get any better. We love Conor and want him with us forever, but if its clear that isn't possible we want it to be as peaceful for him as possible
For the past two hours I have been massaging him and playing his favorite music. Bon Jovi and a leg/foot massage have had the best response. His heart rate has come down and his Oxygen saturation has come up. He has been on 100% oxygen most of the night, so hopefully we can bring that down.
When I was massaging Conor and listening to the music I was thinking so much about him and who he is and how he lives his life. Then the song "It's my life" came on and I know how much conor alwasys loved it. I can still see him and Brooklyn dancing in the kitchen to it! He loved to stand on a chair sing it real loud and even screamed the chourus at me a few times! So today I want you all to do that for me. Call your radio station, break out your cd's. Play the song for conor, stand on a chair, sing in the supermarket, yell it at the top of your lungs. Think of Conor, sing for Conor and above all DANCE!! Any Bon Jovi song will do, but his favorites are "ITs my life" and "runaway". He's also a big Kylie magnogue fan (the la la song!)So where ever you are, whatever you are doing, call in to a radio station, request a song for conor and get everyone you know up singing and dancing.
Thank you for all your wonderful support.
Kristy

Tuesday, February 3, 2004 6:03 PM CST

Conor is clearly showing us that he is tired. So very tired of his fight. It is getting to a point where we are adding and adding things and not taking any way. His lungs are quite filled with fluid and he is starting to show us that his other oragn systems are being affected. I hear him in my head and I hear him in my heart asking me to let him let go. He is done this battle, his work here is done.
I have a sense of peace within me that I have never felt. It feels right, it feels like finally everything is going the way it should be. I am not fighting agaist what any of us wants. We brought conor to the ICU because he asked us to, he asked us to fight for him and we did, we still are. But I hear him, he is asking us to stop. No decisions have been made, nothing is being done at this time, we are just making it clear that we are done adding to his burden. It is so painfully obvious that he can't overcome this , and the more we do, the harder it will be on him and the more he will suffer. We are in no way giving up, we are still fighting our goals have simply change.
Not too long ago Conor told me he bought me my ring so that I would have it forever and ever. We were talking about his dreaming of being an angel and that he didn't much like it because he didn't have any chicken nuggets and he was alway hungry and other than that it was good. So I had asked him if he thought alot about being an angel and he said yes, that that is why he bought me my ring so I would have it forever and ever when he became an angel. I have never taken that ring off, and I know as I know he has always known that we were fighting to win this, and we all fought for him wiht all we had, but in our hearts we always knew where we would be. I have seen this picture in my head for a long time. The past few days have felt so so very wrong and finally we have made a decision that feels right.
I will continue to update you all, and keep you all close to us in the coming days. Right now we are letting Conor lead us, and are waiting for a clear sign from his body and from him that what we are doing is the right thing. When the time comes, we will move to another room, to Q or some where more comfortable if possible so we can all be togther and we will remove the breathing tube. But right now we are spending our time with him, at his side and just loving one another.
We appreciate your love, prayers and support. I thank you all for being with us on our journey and for givng us all the strength to fight this. Its just time to let him stop fighting so hard.
Kristy

Monday, February 2, 2004 2:26 AM CST

Conor was brought to the ICU this evening around 7:30. He spent the entire day fighting for breath. He felt better mid afternoon, enough to get up and dance and play with me, but he clearly wasn't himself. He kept fighting harder and harder until it was evident he needed help, to have his body rest and heal. So he was taken in at 7:30 and about an hour later was intubated so a machine can do all his breathing for him. I won't give you the details. It is a horror no one should know. He's finally resting, and not fighting the machine as much. His BP is still low and they are trying to get it under control. Right now he is laying there with a tube in his mouth dreaming of better days because it clearly looks like he did when I used to nurse him. I hope he is dreaming just that. His lips are making suckling motions and even his toungue is pushing at the roof of his mouth. He is so strong, so brave, so very much fighting.
His lungs are filled with fluid and near callapse when we took him over. His bowel is infected and has stopped moving stuff through, his lungs are filled with the RSV. I think some one used the word septic in regards to his blood. I have to sit down tomrrow and figure out all that is going on.
We debated not going. But when we asked him, he told us he wanted to fight, not give up, and asked us to keep fighting for him. We are.
I have't slept since god knows when and I am off to try and do just that. Conor has never slept alone, so darre is with him. I cant remember the last time I slept alone and I can't bear the thoughts of doing so. Who is going to reach for me at night to hold my hand or kick me in the head....
I am not sure how you can reach us. Through the ICU or try the cell or apartment.
Keep him close. Very close.
Kristy

Sunday, February 1, 2004 10:03 AM CST

Yeah! Conor's fever is 36.8!! After 2 days of continuous feavers, they are down. He's been pretty much febrile since we came in a month ago(OMG, a month ago? time does fly when you are having fun!) but they were up and down and he had a fews days where he was afebrile but for the past 2 days it wasn't coming down at all. Today we did a couple of doses of the advil and tylenol. I asked the doctor because we had to do something. They don't give advil because it eats up platelets. Well so does fevers. I'd rather give him some platelets, give him some advil and break the fevers. Either way he loses platelets at least my way he is afrebrile to boot. So we did. I don't know if it worked, but something finally is and his fever broke.
He looks so peaceful for the first time in days and his breathing rate, heart rate are all down (that's a good thing) as well.
My head is so muddled lately, the lack of sleep, the rushing back and forth from home to hospital, constantly being torn in a million differnt directions. I know our main focus is conor right now, and it hurts so much that I can't spend more time with Aidan. Last night I wanted so bad to stay home with Aidan. He wasn't feeling well, he just wanted and needed his mommy (well at least part of my anatomy anyway) and I had to leave. It took everything I had in me to leave him sleeping and come back to the hospital. I almost didn't. Then I couldn't bear to be apart from conor either. Not when we was so sick. who needed me more? Who did I need more? I called home a few times, wanting to go, but darren said aidan was ok, settled and feeling good. So I stayed. I didn't get home as early as I wanted because Aidan acutally slept in, then when darren did get here we waited to talk to the doctor. I got home around noon and aidan was already napping. I crawled into bed with him and tried to wake him but he didn't stir. I tried everthing and finally I tickled his chin and he opened his eyes, all blurry eyed, groggy and sleepy saw me and immediately said "mama!" and starting nursing right away. I pretty much stayed in bed with him the entire after noon for about 3 hours. After I had left I called home and he was back to himself. Feeling much better coughing less and playing more. I am so glad I got to spend that time with him. I needed it as much as he did. I just wish now I could do the same for conor. Some times I wish for the days when I could take him in my arms, cuddle him in bed, let him tuck his little feet between my knees and nurse til all his hurts and sickness were gone. I wish it were that simple for now for him. I feel so helpless, so powerless to help him get better. It was always the one thing I could do to make him feel better.

The above was written last night. I knew as I was typing it, I should keep my mouth shut, or my fingers still as the case may be. Conor had a really rough night waking at 2 with coughing, and a fever. it was 38.5 and quickly went up to 41.3. He spent the night in a fitful sleep having diarreah, and coughing fits. At one point the coughing seemed to help and his sats went up to 100 and his heart rate was good, BP good. Then at around 4 everthing change. Fever was way up, BP way down and he was shivering. The doctor came in to look at him, was happy that conor was alert and fighting. I wasn't because he wasn't anywhere near his stubborn, fiesty self. They got worried with the drop in Bp that he may be getting septic and quickly gave him fluids to bring his BP up along with some albumin to help keep the fluid from seeping out into places it shouldn't be. It worked, bringing his BP up to normal for awhile,but now it is back down again. Wait, latest one just in-up a little. He was 78/34 at one point last night. When he went up it was closer to norm at 110/64 and now he is 110/44. its kinda all over the place. He's still having a very restless sleep, very light it seems,he's talking and moaning and feeling some pain.
They are also watching his abdoman closely. He seems somewhat distended and his measurement has increased from 21 inches to 23 and 1/2 in the past 12 hours. He seems to be gaurding his belly with his hands as well.
His Oxygen is holding with the nose tubes at 92-96, but without them he drops down to the low 80s. His breathing is pretty fast at about 60+ per minute. And is really shallow and it looks like he is working really hard at it.
He promised me he's going to keep fighting, he's not giving up as long as I leave him alone and stop asking him questions! he wants to be left alone. I can't hold him or sit near him or hug him or cuddle him. He just wants to be alone right now. which is why I am sitting here in the dark, on the computer while he sleeps fitfully dreaming strange dreams by the sounds of it and trying to make himself feel better by tuning everything and everyone out.
He's so strong. He is doing what he has to do to get himself through this. I am so proud of him for that. It is so hard on me to stay even this far from him. I am close enough to touch the bed with my shoulder and it still feels so far, not being able to touch him.
Please keep him closer today than you ever have.
kristy

Saturday, January 31, 2004 7:49 PM CST

Well, one of the tests came back positive- Conor has RSV. Respiratory Syncytial Virus. Basically a cause of common colds but can cause problems for immune suppressed kids, premature babies, etc. The is only symptomatic treatment with oxygen and tylenol for fevers. So far he is handling the nose prongs well and we go back and forth from those to just a blow by Oxygen.
Everyone has to glove, gown etc to come into the room (except us) and his contact is limited. We are not able to leave his room to go into the main area of the unit.
I'll update more later, conor isn't feeling too great, we can't get his fevers down. He hasn't gone lower than 39 all day.
Kristy

Saturday, January 31, 2004 9:46 AM CST

Hey there! this is Conor again. I feel like crap, I really do. This whole AML treatment thing really sucks. I thought after a year of chemo for JMML, a bone marrow transplant, and a relapse and more chemo that I could sail through this one too! Boy was I wrong. My fevers won't go down, nothing is showing up on any of my tests, which is GOOD, don't get me wrong, but I would like to know why I feel like doggy poop that was stepped on, scraped off and stepped on again! My breathing is pretty fast, and it hurts sometimes to breathe, but I can't tell my mom just where, cause I don't really know. I just kinda hurt all over and some times other places hurt more than others. The stuff in my blood that I take in when I breath - oxygen is a little low and i have to keep these really noisey hoses that spit oxygen at me (and water!) next to me all the time. Its not too bad, my level is usually in the low 90s but they want me about 92 percent and I keep dipping down in to the 80s from time to time. Boy my mommy sure doesn't like that! Last night it did that,went down to 84 and my heart rate jumped up to 180 and my fever was 40.6.I felt YUCKY!
I need blood and platelets again today maybe some of that will make me feel a little better. Cuase I could sure use a boost right now. i am sleeping lots, but not very well. I can't seem to settle enough for a good sleep. Yesterday in the OR, I dreamed of Flowers...I love flowers. Haven't been able to have any or pick them for my moms since I got sick because of germs and fungus, but when I am all better I am going to fill my house with flowrs for my mom (am me!).
Don't get me wrong, I do have my moments of feeling only like I have been stepped on once, and then I play a little. yesterday, dr. lewis was suruprised to see me up and playing playdough after such a tough day of tests. Hey, I am still a kid, and that is my job though, to do what no one expects me to do. I will keep surprising them and keeping them all on their toes. I think when I am doing napping this morning I will get up and do something fun. Like get another bath or even play trains!
I have been giving everyone a hard time again, especially my mom and dad. they keep wanting to touch me and hug me and kiss me and cuddle me and slobber all over me,but mostly I just want them to stop picking at me and asking me questions. Boy do people around here like to ask lots of questions.
I miss my brother lots and hope I get to see him soon. He has a cold and I can't play with him now. but soon, I hope! I did see him yesterday for a minute when he came up and waved through my window! I sure do miss that little poopy head, silly willy.
Thanks everyone for all the cool emails and stuff, it sure is fun to read them.I gotta go rest and get ready for my day!
Love, Conor

Friday, January 30, 2004 11:54 AM CST

****2:20 pm CONOR IS OUT OF THE O.R AND DOING WELL. He is resting now, things went great, we should have some answers by later tonight. thanks for checking in, and for all your positive energy sent this way!****



Conor went into surgury about a half hour ago. He was very much himself while in the OR waiting to be sedated. He was asking questions and pointing at stuff. He is still pretty groggy and tired most of the time.Its easy to see he's in pain somewhere. He's really irritable and gets annoyed easily. But still finds moments to let his sunnyside show through!
He had a pretty good night only waking a few times and needing tylenol for fevers, and needing platelets twice! They wanted his about 80 for the surgery and he didn't get a very good rise from the ones he got yesterday or early a.m today, so he needed more just before he went to the OR.
He should be back within the hour, hopefully not feeling too sick.
Please keep him in your thoughts, I think it will be a hard day for him.
kristy

Thursday, January 29, 2004 7:16 PM CST

Ack! I gave the wrong address for our apartment when I posted it a few days ago. Its actually apartment 303, NOT 305. If anyone has send anything there, please let me know. I will leave a note by the mail box as well just in case.
Let's see, nothing really has changed...or has it? Um, Conor's skin boipsy has come back negative for fungus, and the other tests still haven't come back. Everyone seems a littel puzzled because apparently the sample looks normal!? Weird. We should know more on that tomrrow when the other tests for infection come back.
Good news, the bacteria in his blood has not shown up in 2 days! That means the antibiotics are the right ones. Fevers still persist though.
Tomrrow there will be a bronchoscopy to take a look at the inside of his lungs and do 'wash' and take a sample for testing. They will also do a LP then to do the intrathecal chemo (into the CSF) and a nasal sinus aspirate to test whats going on in there.
His potassium dropped pretty low pretty fast today and that scared me quite a bit, but we were able to get it up just by adding more potassium to his line. It was another up all night kind of night and we were awoken by the doc coming in to do an ECG due to his potassium level. That was fine. too much or too littel potassium can cause heart arythmias.
He is still getting platelets every other day, and blood at least once a week. He'll get both tomrrow before surgery. Which hopefullly will be in the EARLY a.m and he won't have to wait all day to be fit into the OR schedule. Trying coordinate an OR, and ENT doc, an oncologist, and the lund doc, and an anethisitist (???) all for the same time on short notice is not exactly easy.
He had a pretty good day today despite being in obvious pain. He was up more today, coloring, watching movies and even had a bath in a 50 liter rubbermaid container I bought. It took 3 of us to fill it and a pretty long time to drain it bit by bit! But worth it for a clean boy, who enjoyed his bath. He didn't stay in that long, but it was nice to see him up and doing something!
Ali - I keep meaning to tell you how much conor LOVES his lullaby cd you sent us a long time ago! It means so much to us, its gotten conor (and me!) through some of the roughest days and nights. Whenever he goes to sleep he asks to put on his pretty songs and I also use it to massage him, and just to help relax him when he's feeling upset or sick. It is really beautiful!
That's about all my muddle head can think of right now. I'll try to update sometime tomrrow if I am able.
Have a good night.
Kristy

Tuesday, January 27, 2004 8:40 PM CST

I'll make this quick because I am pretty much exhausted and I am only home for a short while. Aidan went to sleep right after I got here so I have a few extra minutes before heading back to the hospital. COnor has been asleep pretty much all day, despite our day starting off with a start when the doc showed up at 8am to do a full exam, turning on the main overhead light and scaring the crap outta me! Conor had a echo at 8:15 that they neglected tell us about. Fortunatley darrren showed up at 8:10 with coffee, so didn't behead anyone!
Ummm, the echo went well, then back to the room for a few hours rest. He was feeling pretty crappy, feverish and coughing lots. At 9:30 they showed up with contrast dye for the ct. He had to drink 300 mls in an hour. That was a challenge. Then they called for him early and we weren't prepared and he was miserable. Made for a very difficult attempt at a CT, which he normally does well with and dosent' need sedation. It ended with both of us crying and upset, him to go home to wetaskiwin and me wishing it were so much differnt for him. We calmed down somewhat, found some tissues and tape and made some soccor playing ghosts. He then promised to stay still for the CT, but it was too late and we had to sedate him, it was too important a test to get. That pretty much knocked him out for the day.
I left for a few hours to come home, feed aidan, shower etc and when I got back my heart jumped because neither he or darren was in the room. Wendy the SW showed up just as I did and came with me to find out they had gone to xray. We started to go find them and met them coming back.
COnor was feeling lots of pain, feverish and miseagble. We kept up with morphine, and tylenol and then tried to settle him. He evetually fell asleep in the most awkward postion in my arms and I couldn't move for near an hour, because he'd wake crying for me not to move.
Soon, he was solid and Dr. Lewis showed up to tell us about the CT. It clealy showed something in the lung and his sinuses were full as well. They are most concerned about the lungs. It looks fungal, but may also be the same infection that is in his blood. Which, btw,we do have a name for, but I forget. SO the the lung doc came in, and the Infectious disease doc, and apparently the CT showed the same type of nodules on his lungs as appear to be on his skin. SO we will do a biopsy of his spots tomrrow and see what that tells us. If it inconclusive we will do a lung scope and wash and see what that reveals. THe biopsy of the skin is much less invasive and less risky to do, so if we can aviod the bronchoscopy, we will. Sigh..what else? He is still sleeping after getting alubumin(?) and lots of meds. THe alubumin is a blood product that will help stop fluids from leaking into places they shouldn't be. His is low and we don't want fluid where it shouldn't be. He's pretty much slept all day and clearly needs to. He is in alot of pain and very uncomfortable. But inbetween during his feeling good moments, he's loving, affectionate and funny. When he's feeling crappy he's demanding and definatly the BOSS. He wants what he wants and thats it. His oxygen is still fine, his cough seems wetteer and he is having more coughing attacks, but still not needing any help. He still manages between coughs to yell demands and spy a piece of tape laid on his bed by a nurse, so although his cough is bad, its not affecting his breathing and that is good. It is somewhat funny to see him coughing uncontrolably only to stop to yell at his nurse to get "EVERYTHING OFF MY BED" then continue coughing. Conor, Conor, Conor. You are my hero. Your strenght is astounding. Once he woke up just for a few minuts and attempted to talk and play. He clearly felt miserable so I told him to go back to sleep so his body can rest and heal. He asked why so I explianed all the ways his body works and sleepign helps rest and heal, if he's not using up energy to do other stuff. I told him it would help him get better. TO which he relpied "Oh, man, how long am I goign to have to sleep?" then drifted off again.
So much for quick! Haha.
Biopsy is in the early a.m. I'll update more as I know it.
Tracey from BWC yes on the container! I haven't had time to get out. If you can get me a big one and drop it by, I'd really appreciate it. I'll settle up with you when you come by. Call the hospital if are still able to pick one up for me. It may intice him outta bed for a few hours! GOt the ear plugs! LOL thanks :). If I dont use them I'll give them to our neighbours who complained our kids were too noisey! Ha! SPend an hour when I spend my days and you'll have a whole differnt view on the sounds of a childs squealing and laughter!
Keep those positive vibes and prayers coming this way.
kristy

Monday, January 26, 2004 10:47 PM CST

Hi again. They have changed conor's IV antibiotics to something differnt. The concern is that he developed this infection while on two very strong antibiotics, so it may be something resistant. He has been put on 1 very strong gram negative anitbiotic, and one broad spectrum gram negative antibiotic. He also has to take 2 oral anitbiotics. They will most likely do a arm poke for a blood test to rule out line infection. His fevers are still pretty high and hard to get down. He got blood and platelets today so he was given ibuprophin again. He will get platelets again tomrrow before his LP of the chemo injection and test for CNS involvement.
Hmmm what else? Diahrrea has slowed somewhat, and he is feeling more comfortable with his new PCA morphine pump. I believe the gcsf along with everything else is causing him some muscle and bone pain. He managed to get a bath in a baby bath tub on the bathroom floor. THAT was an experience! He barely fit and he cried through most if it because he didn't fit, he was cold and he couldn't get enough hot water. But he got clean and it couldn't have been too bad, he stayed in there for half an hour. I think I will run out tomrrow and look for the largest rubbermaid container I can find and use that as a bath tub. Either that or I may try and find and inflatable pool. Wrong season for that though! Today was -30! Not exactly pool weather.
I told you earlier about the hard night we had last night, but I forgot in my sleepless haze the really funny part of the night. At one point when I was trying to get him to take his med, out of now where Conor suddenly says " i am waiting for you to dance" I was sure I didn't here him correctly and I asked again and he told me that he wanted me to dance and then he would take his med. So there I was ( after I asked the nurse to leave - I do have some pride!) at 3 am (or was it 4?) dancing around the room to his instrumental lullaby CD with his care bear. After about 5 minutes he said I could stop, took his med,cuddled in and went to sleep.
I am happy to see him continue to keep his sense of humor even if it is at my expense!
Kristy

Monday, January 26, 2004 2:27 PM CST

Conor is feeling somewhat better today,the fevers continue and his diahrrea has gotten worse. One of the bloold cultures have come back positive, but it is unclear for what, the docs will make changes in his antibiotics depending on what it is. It looks like a bacterial infection in his intestines. So we have to stay in this room with reverse isolation for a while. Which is hard because there is no bath. That is conor's one time of day he looks forward to, where he can be alone and play. We are looking for huge basin or something to bring into the room for him to bath in. I refuse to take him to the communal 'tub room' ugh. bad enough I have to shower with the germs of many, my immune suppressed kid shouldn't have too. Plus, if conor has this infection and can go in there, how many other contagious kids use the tub? Doesn't make much sense to me.
Conor has a CT schueled for tomrrow moring to look at everything again. No report yet on the chest xray, or what it may show. So we wait some more!
It was a crazy night last night with conor waking repeatedly in pain or with fevers and shaking. At one point, we couldn't get a BP on him he was shaking so hard. He got all worked up and upset which made it all worse. The reading we did get was 134 over 90 or something crazy like that. His heart rate read almost 200 and his temp was 40.5. Nothing was working, so his nurse left and I worked on calming him down. I sat behind him and started to rock him and rub his back and arms. He was burning up and shivering like nothing I've ever seen. At first, he freaked out and wouldn't let me do anything to help him, but eventually he calmed down and we rocked and sang and rocked...once he was calmer I got him to take a few sips of gingerale and his tylenol, which he did without a fight, and then I was able to get his BP and sats. everything was normal. but wow, was it crazy in here for about an hour. He was so miserable and just crying and screaming and coughing, nothing would settle him. He was taking so much out on me, screaming demands and hitting me. I tried everything and felt like shit for the stuff I was saying to him. finally, I took a deep breath and walked away for a minute and that is when I came back and just rocked him. Sometimes its so easy to just get caught up in the fighting and forget that this kid is really sick and just needs comfort. As important as the vitals are, it was more important to calm him to get them accurate than to get ones that are completely out of wack. I always tell conor to chose his battles, and I have to remember to do that myself sometimes. Getting him to cooperate became a battle that I couldn't win so I had to change stratagies. I am so thank ful that his nurse recognized this too, and stepped back allowing me the time to calm him. After it was all over, he refused to let his nurse leave the room! He wanted her to stay and keep us company, even asked her to sleep here! He is such a different boy when he sees that people are listening to him. I have to try and always remember to be his mom first, I get so caught up in being his caregiver, that I don't see he just needs him mommy more. I know how important his vitals etc are, but he doesn't. All that matters to him is comfort when he is sick and scared. He was screaming "I'm sick, I'm cold, I cant stop shaking! I can't get warm, I'm too hot, I can't calm down.."
He is doing amazing under the circumstances. I am always in awe of his strength and his stubborness not to let this beat him. As hard as it is, I wouldn't want it any other way.

Thanks for all your support regarding the computer disaster. I am using it now, but the situation is not resolved. Both darren and I both spoke with the regional manager who told a completely different story than the store manager,but says that is what the store manager told him. Completely differnt from what the store manager told us. So we don't know what to do. A new model of this make can take up to two weeks to get. We can keep this used one, which I don't want to do, I mean why would we pay full price for something USED? I have no idea what is wrong with it! or we can get a refund which doesn't help us because we bought it on store credit, money we can't spend anywhere else. None of those options make me happy. I want a new one-NOW. If they have to courier it overnight at their expense, they should. They lied, they messed up. I want an apology and I want them to know the effect their incomptence and outright lying had on us. I know all this seems so trival in light of everything else, and truth be told, I feel petty and small complaining about it but it keeps coming up whenever I write because it upsets me so much. I just want every other area of my life outside of this hospital and conor's illness to be easy since quite honestly the rest of it is so hard.
thanks for listening - if indeed you still are!
Must go watch scooby again...
kristy

Sunday, January 25, 2004 10:03 PM CST

Quick note, its NOT chicken pox. What it is, ID (infectious diseases) is not sure. We will wait it out. His fevers continue to spike into the 40's. Today reached an all time hight of 41.0!! He got Ibuprophen last night that worked magic, but they don't normally give it because it along with the fever and chemo equal NO PLATELETS. NOt that he has any, but less than none is pretty bad! He got a good rise from his platelets last night, so hopefully he'll hang onto them til tormmow. He is pretty up and down today. Mostly depending on his fevers. His lungs are still clear, his sats good, and his breathing fine. We will keep doing what we are doing and wait.
I may not be able to update as much. Our computer fiasco is continuing. I went in today to pick up our 'new' laptop. HA! All the software etc was unopened but the box was opened (to make sure it was ok, said the manager) but when I got it back to the hospital, the computer had a DVD in the disk drive!! And some of the settings had been personalized etc. I was more sad than anything. I am devasted that we tried so hard to get this computer for so long and we've had nothing but trouble with it. Darren went back and the manager lied to his face about it being new. How the heck can it be new? I doubt all new laptops come with the Entrapment DVD in the drive (that had been viewed on the 19th of janurary according to the computer). So now we make complaints to the head office etc. ITs probibly a perfectly good computer, but we were lied to outright. So I will wait until we know what is happening before I install anything or use the laptop. It meant so much to me to have that to update, to download my pictures and to write. I am so upset I don't even want to bother with the silly thing any more.
Conor sends his love to all and says thanks to everyone who has sent him emails. We read some this morning and he really enjoyed it. Keep them coming!!
Have a nice night,
Kristy

Saturday, January 24, 2004 7:00 PM CST (check for quick update at bottom!)

Two entries in one day! Aren't you all lucky? I just wanted to update and let everyone know that we have changed rooms. We are now in Q14. Conor's cough has gotten worse and his chest xray showed something in one of his right lobes, but we aren't sure what yet. All his cultures are still negative, but the fevers are getting pretty high. 40.7 today.
The reason for the room change is that he had devolped some 'spots' last night that haven't really changed much, but he did get more today. Infectious diseases are worried it may be chicken pox! They look nothing like chicken pox but apparently they look differnt in immune suppressed kids. So they have sent of tests for that, and have changed his antiviral med dose from the low dose to the higher dose,just in case. If it is chicken pox, he needs the new room because it is negative airflow and germs can't get out.
Other than that, things are pretty boring. Haha. Boring would be such a refreshing change.
That's all for now. I'll update as I know more. Prayers, thoughts and positive energy all are welcome!!
Kristy

******************************
Conor is feeling much better now that we have his fever down. We eventually gave him Ibuphrophin and it did the trick. Its down to 37.5 . I spoke some more with the bedside doctor who was speaking with the oncologist and the xray does look suspicious in the right middle lobe, but the radiologist didn't think it was an emergancy and didn't come in to look at the films and may do so tomorrow if an emergancy arises and she's here anyway. Ugh. I think its emergency, but who am I? I get the point, but I still want to know. The thing is that knowing what/if it is wouldn't change his meds he's on all the right meds now to cover every infection, but I would still feel better knowing for certain what is or isn't there. Apparently the border of the heart is a landmark for the right lobe and the heart border is not clearly visable which is what is leadign the doc to think there is an infection there. But its not distinct either way. Which is where the radiologsit would know more certainly what it was. Hopefully we'll know more tomrrow. he just got platelets because they were low again. They had suggested waited til tomrrow for a CBC to check his levels, but I asked for one this evening. Good thing because they were 9.
Darren made it back safetly last night after a long snowy drive. He got delayed because the weather was bad, and our tires were too! Before he even left wetaskiwin he had to stop and by snow tires. Apparenlty our tires were completly bald on front and only at 50n the back. Or something like that. We were told just last month they were fine - but darren found out the hard way when he slid into the intersection on his way out of town. Apparently we have a ball joint (??) that needs fixing too. Its been snowy and blowy here the past two days. Very pretty but scary (for me!) to drive in. He made it here safely though, and thats all that matters.
I will go to bed now, I will go to bed now....I really need sleep!
K

Saturday, January 24, 2004 10:56 AM CST

As you all know, my mom usually does this, but today I said, Hey! Its my page elephant butt - move over and let me say some stuff! (elephant butt is just one of the very affectionate names I have for my mom!)

I am doing ok today. Well as ok as having too many poops and runny eyes and runny nose and a cough that makes me puke. But I have discovered Scooby Doo and it Rocks! My nurse yeseterday brought in 3 videos and I have watched them back to back all night and morning. I really like the haunted pirates one!! Scary and funny-what more could a kid want?

I love all my guest book entries, and mail that I get! Did you know that I have my very own email address? Its at the bottom of the page, when you click on it, you get my mom's too, but if you just want to send my an email its conorthomasfan@yahoo.com . I LOVE getting emails, well mail of all kinds. Thank you to everyone at Bears Who Care for that. Mommy says thanks to Aunty Glenda for the package and the cool idea for me to put stickers on my mommy's butt! That was fun. Its easy to get bored in here so I am always looking for new ways to entertain myself.Oh and I got some mail from Dickens the doggy yesterday along with some pictures of his cat friends. Wow. Who knew a dog could send mail?

I've met lots of special people lately through here. It sure makes me feel special. Mom always told me I was special, but hey-she's my mom, she HAS to say that! Its nice to know it is true. Did you know that Cassadra included me in her Run for the leukemia society (bum knee and all!)and she and her class of students sent me and my brother THE GREATEST box of christmas presents? The post office was REALLY SLOW and it got here late, so I had christmas all over again. That was cool. My mom gets so overwhelmed sometimes with everything and sometimes just dosen't know where to start with thanking people. Do you know she keeps every envelope and name so that one day (when I am all better and she has some time on her hands because in here she pretty much just looks after me and helps me do all the stuff I won't let anyone else do!) she is going to reply each person individually? I am going to help her by making pictures and writing letters too! there is no way Mom would've kept her sanity without all of your support and we want you to know that!

I've got friends from all over the world thanks to my mommy's online group OctMoms. They have been great too. Everyone of them has kids born in Oct99 just like me. Someday, I am going to travel around the world and I won't have to worry about a place to stay. The best part is, I have friends I have known from birth that I have never even met- how cool is that?!

I really miss my friends in Wetaskiwin. Like Cassey and Nicholas and Katie, Ali and Kayla and Brendan and Heather and my other friends Brooklyn and Whitney, Bethany and Lauren! Hey I got way more girlfriends than boy friends -must be because I am so cute and such a big flirt! I really miss you all and I can't wait until I am all better so we can play again.

Ok, so I'll try and do this more often, there is so much more I want to say, but right now I have to go because my fever is back and I am shivering and my eyes hurt too. I am feeling pretty yuck today, but hopefully when I get my blood transfusion I will feel better. I have to get my mommy away from the computer for awhile too - I want her to watch Scooby Doo with me!!

Love,
Conor

Thursday, January 22, 2004 11:31 PM CST

The meeting went very well today with all my conerns addressed and everyone really doing everything they can to make Conor feel as comfortable as possible. The nursing issues were brought up, and the whole "nothing on my bed" issue wasn't even an issue really with the charge nurse who agreed that if conor didn't want stuff on his bed, it shouldn't be there. We have a table set up in conor's room that will be for nursing stuff only and every will be made aware of his rules and will be asked to HEAR him. Already his nurse today made a sign for the bathroom door that reads "please don't turn on the light in here unless the door is closed" Conor usully likes the lights low or off until he fully awake and up and about (the ara-c bothers his eyes mostly first thing in the morning) and nurses have a habit of going into the bathroom to weigh pullups and measure 'outs' and turning on the light. Not a big deal really,but it was something she noticed he didn't like and was a good way to show him that he is being taken seriously and what he wants does matter. Now if he would only ask them to turn of his IV machine alarms so he ( I )could get some sleep! haha.
Conor is going to make his own sign for his door with his 'rules' posted on it so that everyone will know
what they are.
We are doing primary nursing again so that he gets the same 8-10 nurses all the time. It sounds like alot, but when you consider shifts, days off etc, its acutally quite few. I am going to ask him for his input and who he would like and Darren and I also notice the nurses he works best with and will make sure they are on the list. There is only one that I absolutly don't want and will specifically request NOT to have. I don't ever want to hear my child tell me that he is afriad of someone or that they were being mean to him again. Not when I can prevent it. Enough said about all that. Its amazing how one bad experience can snowball into so much.
Anyway...he had a great day today. The childlife volunteer came in to play and have school time. He really enjoyed that time. Which worked out well for me to go to the meeting. Finally around 2 I was able to sneak away to the dungeaon down the hall for a shower. Ugh. Bad as it was, I felt better after though. I wrote a long paragraph here on the horrors of my shower experience but erased it, holding myself to my promise that I would stop bitching so much. It'll be hard, I mean a girl does need a hobby and there ain't alot too choose from or alot of time to have one in here. Bitching is so much fun, its free, and its easy and a great stress reliever...but I am maturing. Hey - I'll be 31 next month.
Crap. 31. That's getting up there!
Ok before I got off track there I was saying how child life came in to play with conor. That will be a regular thing. His 'school' time. We are also planning on giving him soome out of the cage time. Perhaps to the playroom for a half hour or so each day. We'll close it off to other kids and he can spend time in there. We will try to rotate toys so he doen't get bored and maybe even get to do some baking! Which he loves to do.
I was very pleased how it all went today. It didn't feel like a battle at all to have conors needs met. I walked away feeling much more confidant in his care. There are lots of plans and ideas that we will be working on to make sure he is happy that his time here is the best it can be. We learned pretty quick last transplant that conor does not fit the norm and we need to be prepared to have him active. As he is now. As was pointed out today at the meeting its easy to forget sometimes just how sick a boy conor is, because he is so active and full of energy. Its mostly by his mood and behaviour that you can judge how he is feeling.
He's sleeping now after a hour long battle with meds, that although in the end he did take, it was one of those knock down drag it out I'm gonna win this if it kills me battles. He was tired, and feeling crappy, fever of 38.8 adn just want to fight. So he did. I had a time out, he banished me to the hall where I was comforted by the sound of other kids yelling at other moms and realized that I wasn't the only mom of a kid who was fed up and had no one else to take it out on but the one they knew loved them and would be that verbal punching bag. Apparently teenagers are no easier than four year olds! Odd thing to be comforted by, I know, but I live in a starnge world.
I wish you could see him now. All tucked into his thomas blanket, snuggled in his new lavendar and lemon grass down filled pillow, arms curled under his chin, head resting on his Bruce the shark looking perfecly beautiful, perfeclty normal, perfectly healthy. there is nothing like the sight of a sleepy child. Especially your own. Makes me miss Aidan so much. One of my favorite things to see is the two of my boys cuddled in bed together. And here we all are scattered across alberta! Darren in Wetaskiwin, conor and I here and aidan at home with his nana.
Aidan is so much fun. Today when I was giving conor his bath aidan was trying desperately to get in with him. Somehow he managed to climb over my legs adn dive head first fully dressed into the bath with conor! He was so pleased with himself! He was quite happy to stay in there fully dressed too.
Its late, I'm rambling. Thanks for checking in. Thanks for caring. Goodnight.
kristy

Thursday, January 22, 2004 10:56 AM CST

Never any end to the excitement around here. Darren had to leave and go home on tuesday night. He is sick and it seemed best that he not be around any of us, so he's gone back to wetaskiwin for a few days. Hopefully, he'll get well soon and won't have to stay away for too long. Its so hard having him gone! Any longer and I'll have to rent a car, I don't think walking back and forth each day is in my best intersests. Haha. Our apartment is only a 45 minute walk from here. Getting there is no problem but coming here is-its all uphill. My butt is killing me today.
Mainly though, its just too long to be away, it takes me 3 hours to go home and shower. The plus side is I get to enjoy the walk with Aidan and some alone time at home with him. It seems I've hardly seen him in days.I miss him so much. I just may try and convince conor to let me stay home one night next week when darren is back. I really need some time with aidan. I really enjoyed being able to go home each night and spend some time with him, having our bath and nursing him. If this goes on for much longer, he may wean and I'm not ready for that! He did spend some time here yesterday playing with conor but when conor isn't feeling well, he wants no one around and then it gets pretty tough with both of them in the room. hopefully today will be a little easier.
Conor is still sleeping. He had a pretty good evening. He had alot of fun with the nurses last night. Being mr. socialable and inviting 3 or 4 differnt nurses in to visit. He even asked one to change his pullup and sit on the bed! It is incredible how very much the nurses can influence conor and his behavior. Since I last wrote about the fiasco with his nurse and his 'rules' I had one or two other run ins with the same nurse I was so upset by it. Yesterday I spoke with our social worker and we are all meeting today. Nursing, childlife, social work etc. I not letting any of this go on any longer. Not only that, he needs more outlets because dispite all this he is still a high energy kid and needs to let off steam. We need to come up with new plans and ideas to keep him busy and happy. After those few instances with his nurse and the arguing and the bickering I had reached the end of my rope. On Tuesday when darren had to leave I had gone home to shower and just had time to do so when he called to say he wasn't feeling well and should leave, and I rushed back. I hadn't eaten at all and didn't get a chance to do so until Mom came by with Aidan at 7. I didn't even so much as leave the room for a minute. I was actually afriad to leave him alone with the nurse he had,afraid she might attempt to do something when I was gone and he'd fight with her, and end up pinned to the bed by a team of nurses or tied down in restraints! I know, that is a little far fetched and not likely to happen, but I was angry and very upset and I did not feel comfortable leaving him alone. I should not be worried about my son's treatment. I should't have to hear him awake crying "mommy why doesn't anyone listen to me? why won't they hear me? why won't anyone hear my words? its my bed mommy, these are my rules!" He was sobbing so hard yesterday morning that i broke down with him. He screamed for me to get some paper to make a sign to hang on his door,and when I wasn't writing fast enough for him (yes, he is very demanding!) he grabbed teh paper and started writing himself. When I asked what it was he was writing, he said "why won't anyone listen to me? you have to HEAR my words!" that's when I called Wendy, the social worker because I needed something done. All this because of one nurse really. Most everyone else is understanding and accomadating. Last night and the night before, he had some of his regular nurses and I swear I almost jumped up and hugged them! It was such a relief not to have to worry about him that way. knowing that HE was being cared for and cared about. To see him laugh and play with his nurses. Once that relationship is established his rule relax and he is such a differnt child. He is not a hard to handle crazy out of control kid. He needs to be heard and he needs to be respected. Hell if it was me in that bed and I said not to put anything on my bed do you think I would be ignored? I don't think so.
I know alot Conor's nurse's (past and present)read this jouranl and I want you to know that I appreciate you ALL for your caring and genuine caring about conor. For always going that extra and being his friend and seeing him for a person. I know I don't say it much, that I usually just bitch about the stuff that goes wrong, but I really want you to know that All of us, Conor, myself, Darren and Aidan have all benifited from the care and concern you have shown our son and our family. You make a differnce with your caring, and I am sorry that it takes one nurse that doesn't do that to really make me see the many that do. Thank you for everything. Thank you for not only caring for him, but for our family. I hope that with all the crap going on with the Government and your contracts that everyone is able to see how valuble you are to the profession and how that being specialized to one area does more for patient care than the medicines and orders you carry out. Its not just about the job you are doing, its about what you put into it, your knowledge, your experience and mostly - your heart. Thank you.

Conor finished his last chemo this morning at 7 am. He is feeling kinda crappy right now, but I am sure that once he is awake for awhile he'll perk up. He had high fevers again last night (reaching 40!) and still has diarreah (some day I will learn how to spell that!). Suprisingly he still has his hair (though I may regret writing that...). They have started anitbiotics again, and he is still on the antifungal med. He is due for gcsf starting today until his counts recover. Maybe in the next few days he will get out on a pass for a few hours. That will make us all feel much better. His lumbar puncture is scheduled for tuesday and other than that, we are just hanging and waiting.

Thank you to everyone for your emails, guestbook entries and mail that you are sending conor. As always, please know your continued support is what gets us all through this. I hope your day is a good one.
Kristy

Monday, January 19, 2004 11:40 PM CST

Conor had a wonderful day at home today. We got to home home this morning at around 11 and because his chemo wasn't due until 2 or so, we had a few hours at home. It is so nice just to be there. To hear the sounds of the kids playing (read:fighting) together and just hanging out. Conor had alot fun building train tracks and Aidan had just as much fun going behing him and destroying them. We were all even able to get out for a short walk this afternoon before it was time to come back. When we left to come back to the hospital we discovered the parking garage door was broken and we couoldn't get out! So I decided to put conor in the stroller and walk up. It was such a wonderful day, and I was so happy we decided to walk to the hospital. Well, happy that we had too! It was a long up hill walk, but very much needed by me, and Conor loved being outside. We even stopped to pick up hair dye for Conor hair. He decided he wanted rainbow hair, and $60 later, we left the store.
Once we got back to the hospital we started dying, but we really needed to bleach his hair first and the color didn't stay :(. I was so disappointed and he was too, but we'll try again tomorrow he said. Darren attempted to dye his purple, but most all that got colored was his face when the dye ran while he rinsed it out. Now that was fun to see. We now also have a purple bathtub in conor's room. I have no idea how I am going to explain that one...
Conor is so much himself these past few days, it is wonderful to see, especially since I know he's going to start feeling like crap in the next few days. He is so full of energy and laughter. He is so silly and fun to be around. Last night on our way back to the hospital we walking from the elevator to the parking garage. There is a door that leads from the hallway off the elevators to the garage. On the door, there is a sign and an arrow pointing to the left indicating the direction of the lower parking level once you exit. Conor, being Conor read the sign and turned to the left purposefuly walking into the wall. He laughed and said "what? who put that wall there? the sign says, left? I went left- what's up with that??". His facical expressions and his hand gestures are just priceless. He loves to make people laugh. He'll do things like put his socks on his hands and his underwear on his head and pretend that nothing is amiss and ask " have you seen my socks?" or "what, where'd my underwear go?".
He is so full of love and humor that he makes being here bareable, not just for him, but for me too.
I have become even more protective of him than I have been. My mother bear insticnts are in full swing and I have little patience for anyone making him sad or upset. Sometimes I feel like the biggest ##### on the planet, and mostly I don't care. I got pretty upset with one of his nurses this evening because she was pretty much ignoring conor and what he wanted. You see, conor has a few 'rules' in here, rules he's had for quite a while that he made to gain control over his environment. I help him enforce those rule, because I agree, being here sucks, he has no control over most of his life and if he wants to create harmless rules to gain some control I do what I can to help him do that. His rules are simple 1. No green sterile towels allowed in the room. He hates them. I don't know why or how it came about, but we work around it. Usually if something has to be sterile I'll hold his lines with sterile guaze or the nurses will work around it. 2. which proablly should have been listed as #1 - NOTHING ON THE BED! this is NOT a new one. used to be nothing on the thomas blanket now it emcompasses the whole bed. Again, we work around it. Its on the info card about conor, I tell all the nurses,conor is very vocal about this, and everyone knows and does what they can to accomadate him. Nothing on the bed. If something gets put on the bed, it gets kicked or thrown off. I don't agree with or encourage this behaviour, and I will correct it if he does it, but point is be forwarned...I have sat with tray on my lap so that lines or syringes don't touch the bed, I've helped hold stuff in the air, and juggled trays and balanced things on my head to make sure that the nurses are able to get what they need and do their jobs. 3. Mommy ( or daddy if mommy isn't around ) does the vitals, BP, tempature etc. I've been doing it for 2 years. I know what I am doing. I always make sure that a nurse is watching and things are placed correctly. 4. Mommy does the taping on the lines. this is to ensure they don't come apart. Mommy pins the lines, mommy fixes twisted lines and mommy well, does all that Mommy is able to do! (insert daddy where mommy is, when mommy is not in the room or a 5 mile radius!). 5. No procedures/meds while conor is in the bath, its his safe zone. We always check to see when we have a large enough window for him to get a long bath so that he can be left in peace..As I said, these are conor's rules. They work for him, they are his way of gaining some control over his out of control, crazy, no kid should go through this crap life. Most eveyone is accomadating, most everyone does what they can to make him comfortable. Why upset him needlessly. And you know what. WHen the 'rules'are followed, chances are he is more likely to let some of the rules slide once he's established that some one is willing to listen to him. (I should also note here that although I agree with his rules, if at any point, there is a problem or it is urgent something be done, we are the first ones to stand back and let the nurses and doctors take over. We aren't crazy, conor's health is more important than anything else.) Anyway, every once in awhile some one won't know what he likes or forgets and he gets very upset. Today his nurse heard him, and I told her what he was saying and why he was upset, but I guess she wanted to be the one to control the situation, ignoring him and continually trying to do what he was asking, in a very upset way, that I do. I had to get upset myself and point out it was tape were talking about. TAPE. I could tape his lines. It wasn't an emergancy situation that required attention. he wanted me to tape his lines. Let it go! I told her that it was all in the file, it was all ok with everyone, that it was not worth upsetting him over. It was tape. I was very upset, especially since earlier she had argued with him when he told her not to put anything on his bed. I had to move what she laid there...But I said what I had to say, and after that, things changed. Why it had to come to that, I don't know, it was only tape!
Rant over.

He had a great weekend. We all did. Now the real hard part begins. His counts are at 0 and he started chemo at 5 pm today. Here comes the rough part of all this. He's down and they are blasting him again. He's getting 3 hours of Ara-c every 12 hours for 3 days. He's sleeping now, but I can tell already it is getting to him, he's restless and tossing and turing. He's had gravol, ondansotron, and benadryl to control nausea and to prevent a reaction to his antifungal med. His diarreah is back, and he has some cramping. I only hope this all doesn't hit him too hard. I have learned not to expect conor to follow what is expected, but I do anticpate him being sick, just how sick is unclear. He's done remarkibly well so far and I really want him to continue that way.

one more thing before I go. I added new pictures, so please check them out. One of them, you can see the parital painting on his window. the window behind him is his window, the one he did all by himself. The one you can't see is my artwork! However, even my artwork was mostly dictated by him. He painted flowers and rainbows and trains. He asked me to paint sunshines and flowers to go with my ocean, island, palm tree, and pirate. It is remarkable to me that a child that has been put through all he has been put through, that has spent nearly 2 years in hopital draws sunshines, rainbows, flowers and all the things he loves when he draws and paints. He draws only the things that make him happy. even when he asked to dye his hair, it wasnt one color, he wanted a rainbow. I think that is incredible.

kristy

Sunday, January 18, 2004 10:23 AM CST (New Pictures Added Today!)

Conor is sleeping in again, so it gives me some time to update. He had a wonderful day yesterday getting to go back to the apartment for a few hours. It was so beautiful to see Aidan's reaction when we all walked in together! When Darren or I come home its usually alone and Aidan will run to the door with his arms out yelling "MOMMA!" or "DADDA!" Yesterday when the three of us walked in, Aidan ran for the door and stopped short,looking rather confused! He held out his arms to me "MOMMA!" gave me an big hug, and then squirmed to get down. He then ran to darren - "DADDA!" and did the same. Aidan then ran to Conor "CON NA!" and wrapped his arms around conor, laid his head on conor's chest and hugged him, longer than he did either of us. Conor hugged aidan back, and when they released, they hugged all over again. They were so happy to see each other.
After supper they played together with Aidan crawling on conor's back and conor crawling around the house with aidan riding on his back. It was pure chaos trying to get out of the house to get back here on time. The boys had gotten a bath together and trying to dress them, play with them and get ready to leave was a little nuts. Conor wanted to play squish ( his new game where he lays on the bed and you have to put a pillow on either side of him and squish him like garbage at the dump! where he got that from I have no idea!!) and aidan wanted to play peek from under the same covers that conor was laying on, plus he wanted to nurse while standing on his head reading stories. Needless to say it was a very fun filled evening in the Ford house last night.
aidan got a little upset when we left to come back.Darren drove conor and I up so he could have the van this morning and as we were leaving aidan kept running for the door saying "walk, walk" he wanted to come too. I guess he had a hard time understanding why we were all going and he was staying. He did walk to the elevator with us (with help from his nana) and that seemed to make him happier. I hate always leaving him behind...Darren did tell me that Aidan was fine when he got back to the apartment and that they played trains together for a long time and had alot of fun. Aidan played so long that he wore himself out, getting up, taking darren by the hand and leading him to the bedroom. He put himself to bed and was asleep in seconds.
Conor fell asleep pretty much right away when we got back here. Despite having gotten blood yesterday, he wore himself out on the pass with all his playing, running, crawling and just the excitement of being home. I went out to make myself some tea and ended talking to one of the nurses for about ten minutes. All of a sudden I heard conor screaming MOM! I ran into his room and he was sitting up looking scared and alone "mommy I called you, where were you?". He had thrown up all over his legs and my bed. I hugged him, and cried because I was so upset I wasn't there, and he ended up comforting me. He told me I couldn't leave any more though. Oddly enough I had been talking to his nurse about how inconvient it is for parents to leave their child's room to shower or go to the bathroom, and how conor gets upset when i do have to leave. I was saying how I hate leaving him, especially when he is really sick and I worry that something may happen when I am gone. Conor perked up soon after and was laughing about not getting any puke on his bed, just mine and kept on pretending that he was going to puke again on my clean bed. Little stinker.
He spent a few minutes laughing and playing with his nurses. Then he decided he was tired and went to sleep. He had a great night and I can tell he's been dreaming lots as he is talking in his sleep lots. Just a few minutes ago, he muttered "you stink" in his sleep.
He has been needing platelets more and more. He got platelets Friday in the wee hours of the morning, and needed them again by yesterday morning. They had gone from 118 to 8 in less than 24 hours. He got platelets late yesterday afternoon and this morning they are 7. They will transfuse him again this afternoon. We are looking at why he is not hanging on to them. Finally he will be getting single donor platelets and mahybe even HLA matched platelets to ensure he can hang on to them. We will be doing his platelet levels 2x a day to make sure he is keeping a safe level and if need be transfuse more often. It will be pretty hard for him if he needs them daily between now and transplant. Our tentative date for transplant is the 12th of february. Aidan is admitted on the 11th for his surgury on the 12th - day 0.

Thank you everyone for the Anniversary wishes, it was a great day. Pizza, (non alcoholic) beer, silly movie and Roses (thanks b-w-c, what a nice surprise!!).

We are looking forward to getting out for a few hours again today.
kristy

Saturday, January 17, 2004 9:00 PM CST

Conor is finally starting to settle in and warm up to the doctors and nurses again. As you can see by the picture! He made a special hat for himself and dr. lewis today.
We are home on a short pass and are on our way back to the hospital soon. Conor is feeling great.
kristy

Friday, January 16, 2004 10:11 AM CST

Today is our 5th Wedding Anniversary. The one we had all our big plans for. We got married pretty quick (within 7 months of meeting!)and we didn't have any money so there wasn't a honeymoon but all along we planned to go some where on our 5th anniversary. And here we are! Vacationing at our city home in Calgary.
Looking back I know I had pictured so many things for our lives, our marriage and our family. This wan't one of them. Before we got married, we talked of having children and planned to do so after 5 years or so! Conor was a wedding night surprise and the greatest of gifts I have ever been given, so my anniversary is special to me for that reason too.
Its so strange in that I never dreamt our lives would take this path,I may have feared it, I may have always known certain things, but even then, I never could've seen the depths of what we are living now. No matter what I may have seen in my mind, I was never prepared for this. But in all of it, now can't imagine it any other way. We are here, our family is strong, my son is showing us a strength that I had no idea existed - especially not in a child.
Darren and I have certainly grown and our relationship has been tested and here we are. I can't imagine going through this without Darren. Through all of this I have come to see just how important our differnces are. Where I am weak, he is strong and where he is weak I am strong. We seem to take turns with our strength and in dealing with this. We hold each other up and let each other fall when need be. Our differnces used to make me crazy, sometimes I wondered just what the hell we had in common any way, but I have really come to see that it is the differnces, that bind us, that give us strength, that keep us close and enable us to be here for conor. Our love for each other and our amazing boys is all the common ground we really need. We are a reflection of each other and together we have been able to hold on to what really matters. Our family.
So today we may not have a fancy night out in an expensive resturant, with wine and roses and an expensive hotel. We'll have pizza and a silly movie with soda water with our kids in a cramped hospital room and we will celebrate our wedding anniversary as being the start of our lives together and the beginning of our family.

Kristy

Thursday, January 15, 2004 7:26 PM CST

Sorry I've taken forever to post the address, but here it is:

Apartment
Dunhill Estates Apartment 305
1414 5th Street SW
Calgary Alberta
(not sure of the postal code, but you can look it up on Canadapost.ca I haven't had a chance)

The hospital address is
Alberta Children's Hospital
Room Q4
1820 Richmond Rd. SW
Calgary Alberta
Canada (ditto on the postal code...)


Mail can also be sent to our home address.
Conor is doing great today. Thanks for checking in!

Kristy

Wednesday, January 14, 2004 2:39 PM CST

Well Conor has surprised us all once again! He slept til noon yesterday and woke full of energy. He spent the day playing computer games and coloring and just having fun. His pain seems to be under control and he is needing less morphine. He was up until midnight last night and slept until noon again. Right now he is again playing computer games and being himself.
Despite having started TPN and being hydrated he is eating and drinking a little which is great to see.
We are not sure exactly what is working for him. His wbc is .8 and his blasts are 0. His counts look great from a 'we just blasted the crap outta him with chemo (and will continue to do so)' kinda way. He has 2 full days of the 24hour Ara-C left, and he will finish on Friday and have 2 days off! We are hoping to take him out for few hours for a pass. Like I said we are not sure what is working, if it was the change in antibiotics that worked on something and got rid of the fevers, or if it was the disease causing the fevers or the Arc C, or if it was something fungal and the amphoteracin (sp?) worked on that, but in anycase the fevers have lessened and its been over 48 hours since he last had a fever. Infectious diseases and conor's doctors are trying to decide what to do, what meds to cut back or stop. We don't want to leave him unprotected, but we don't want to medicate him needlessly either, its a hard call.
bingo is starting now, so I will finish this later.......
kristy

------------------------------------
Anyway,as I was saying we will figure out what to do in regards to meds and probibly cut back or eliminate some, depending on how things go. They are pretty heavy duty meds he is one for anitbiotic and antifungal protection so keeping him on them if not really neccessary is not a good idea, but at the same time, we don't want to leave him vunerable to something if there is something in his system waiting to go wild.
Dr. Lewis dropped by this afternoon to let us know that the results from the lumbar puncture were back. Initial tests on friday did show some white cells and some red cells in the spinal fluid. It was very little and it was unclear whether the sample was contaiminated from conor's high cell count at the time and maybe the cells were just pushed in while the LP happened. In any case we will repeat the spinal chemo on day 15 - next thursday and retest then as well. Apparenlty he falls into the official "maybe" catagory with the cell number they found. It is higher than normal but not within definate disease range in the CNS so, we will be aggressive and treat it just in case. we don't need any further problems!
Conor had fun playing bingo and as per usual stopped as soon as he won a prize. He won some modeling clay that comes with sticks and a puppet stage which was great fun to do. He is again back to playing computer games. We got a computer from childlife for a few days since ours was spazzing and we weren't sure what was wrong with it. It works great, that way we don't fight over the laptop!
As for the computer saga from yesterday, it just got worse. Darren and I brought the laptop back to the store to see what they could do for us, and they said no problem, they would replace it. The salesman said he would transfer my fils, format the hard drive of my computer than transfer my files to a new one and come back in an hour. Well 3 hours later I left the store with a new laptop that I discovered didn't have my files on it, not all of them anyway, AND it was scratched! So we took the damaged one with the promise of a new one being brought into the store and we would get a replacement. This time I want to see it come out of the factory sealed box! what waste of a day and a waste of everyone's time. I almost left with the damage one, because I was so fed up with dealing with it, but when I thought about it, i was more mad that he wasted my day and tried to give me a crappy laptop. All that aside I did get to spend the entire day with aidan, so all was not wasted :). Darren brought aidan home supper time and Conor and I painted his windows ( I will put up the pics soon!) and we had great fun doing that. He managed to cover the floor and walls, but at least i didn't have to clean that up! His rooom looks much more cheery now. The plan was for darren to go home early with aidan but I just couldn't spend the night away from him and ran home once conor was settled to put aidan to bed. it worked out great, as conor is such a night owl and he was still up when I got back.
We are falling into somewhat of a routine that seems to be working for all of us,I am not getting too used to it though, as it will probibly change tomrrow, but that's part of the routine too-never knowing what the next day will bring.
Kristy

Tuesday, January 13, 2004 10:07 AM CST

Excuse me while I put on a different hat this morning and be completely negative and bitch about things for awhile. Perhaps then all this negative energy that is in me and hovering around our lives will be released and get the hell outta here.
Things just seem to be piling up. All the little things that normally I shrug off are building. Little things like finally finding the stuffed pull string Woody Doll for Aidan. It was the last one in the store, and he went crazy when he saw it. It didn't work when I pulled the string, but the lady that worked there assured me it would when I replaced the batteries. Well, IT DIDN'T! So I had to pry the favorite toy from my son's hands so I can return it to the store where there are none left. Its not just the fact that the toy didn't work, or that I had to take it away from aidan either that in it self is enough to piss me off these days, but it also means another afternoon away from Conor. I hate leaving him. It doesn't even matter that it is a mall I have to go to and shop...even that feels empty these days. I could wander around the largest mall in the world for days and not find anything I want or need or anything that would make me happy. Used to be a time when the perfect jeans or the right shade of black boots made everything ok. Hell, used to be finding a sale on pens made my day, just because it was a sale.
Then on top of that, the laptop, yes the NEW one is not working properly. It was all bad enought the first week we had it, it got a virus because the salesman told us it was factory ready, everything was installed and up to date...well, not the antivirus! Took me a while to fix that, but it did get fixed. But again it took up so much of my time that I just didn't want to spend staring at a computer screen, holding with tech support and spending time away from my kids. Now the damn DVD player isn't worker properly on it. DVD's skip and are choppy and it is really making me mad. I think the store will replace the computer or fix it, it is new, it is under warrenty, but it again involves time finding a store near by that carries this model, then i have to remove all my personal stuff of it, possibly lossing stuff in the process because I can't burn things to CD to save them. Then when we get a new one, I have to reinstall everything....Or if they fix the DVD player I again have to do without the computer for God knows how long while it is being fixed. Conor spends so much time on here playing internet games. The other day it was the only thing that brought smile to his face adn he stayed on here for hours. He also loves to shop for thomas stuff, filling his cart and asking for a credit card! (Wait, I'm supposed to be bitching and complaining, thinking of conor shopping online and attempting to purchase items made me smile and laugh out loud. Damn it! I want to be miserable for a while!) Anyway, he enjoys it as much as I do, and to be without it for days is just an invonvience I don't want.
I am sure there is more, ahh, yes, I knew there was. I had my first encounter with the hosptial shower the other day. GROSS! For some reason I am not allowed to shower in conors room. I have yet to understand that. Apparently it is better for parent to leave their sick child, go 10 minutes down the hall to the ONLY parent shower in the building, wait in line to use the disguisting shower that 100's of others have used that day. I bring gloves, I wear sandles, I clean the shower, I stand dead centre scared I will touch something and some how manage to shower. Honestly, I would feel cleaner rolling around in a puddle out side! there are tiles falling off, there is grim on the shower curtain...how that can be could for a parent going back to an immune spressed childs room is beyond my comprehension. So I won't do it agian. Instead I sit in my wrinkled cloths, with my stinky breath and smelly pits waiting for darren to get here so I can leave my very sick child and drive home to shower. Makes no sense to me. I don't want to leave him. Even a 10 minute drive is too far away to be from my child. Besides a shower just may make me feel human and I could think clearly. Maybe that is part of the plan? keep the parents in a constant fog, less questions, less annoying the staff trying to understand your childs illness and treatment because you find it hard to form a thought, let alone a complete sentence.
I am getting no sleep here. I function well. I do manage to function well with very little sleep. I have been doing it for so long. but when you get machines beeping off all night as soon as your head hits the pillow, its so hard to feel rested. Between that and Conor waking up every half hour to use the bathroom its not a very consistant sleep. I feel so bad for him. Last night was a complete disaster. More so on my part than anything. After falling asleep and being woken at least 5 times in 2 hours, needless to say I was not very agreeable. And neither was conor. He doens't like to be woken either. Picture me trying to unplug 4 machines, unclamp his lines from the bed, unhook the pulse ox machine and lift conor and drag top heavy IV pole to the bathroom. All the while with conor (and me) half asleep and conor yelling "hurry mom, I'm gonna poop in my pants-hurry mom you're gonna make me pee on the floor- hurry mom, hurry, you're not going fast enough - my knees hurt, pick me up. My knees hurt put me down, hurry mom - why won't you listen to me? don't you hear me? mom, hurry don't you understand me??" Then the control monster rears its ugly head and both of us dig in our heals trying to gain control over an uncontrolable situtation. I tell him to chose his battles all the while forgetting to chose my own and we are at a stand off next to the bed over where to put on the pull up or what to use to wipe his butt or which sink to use to wash his hands. Its crazy really. Obsured when I think about. I feel so small fighting with him over such things. Its constant battle for everything. I love his fight and determination, his spirit. But at 3 am when there is no sleep and poop involved...it just wears me thin.
He fights so hard, so very hard. I try to tell him to save that energy. Save that fight. Fight what is important. Fight cancer, not mom or dad or the nurses. but he is so mad. Its hard to discipline him, but I can't let him run wild... thought i'd like to, and I'd like to join him. I have always been there for him to lean on or to take his aggressions out on, its just getting harder to be his punching bag. today I will try harder.
I feel much better after getting all this out of my head. You can all go back to your regularly scheduled day now and appreciate the little things that make a difference. Now that I have written all this out my head is starting to fill with all the wonderful things of the past few days, and I am starting to smile. Like yesterday finding a HUGE stuffed dog on sale (haha, guess I still got it!) for aidan. I brought it home expecting him to go crazy over the dog, but instead he pushed passed it and yelled "MA MA" and hugged me. That made my day. Or when Conor tells me to lay my head in his lap so he can play with my pretty hair.
Its not all bad.
Kristy


**************************************
Holy crap! Was that all about me or what? What a complete waste of energy wasting my time complaining. Really what the hell do I have to complain about? Its Conor that is in pain, its conor that feels like crap, its conor fighting for his life, its conor that has no control over anything in his life. How dare I complain about me? My poor baby is miserable and it is unbearable so I focus on other things so I don't have to see just how bad it is. Maybe one day it will sink in he even has cancer.
He is resting,sleeping very solidly. The morphine PCA is helping him immensly. He is in less pain. Though he does get a little stoned, but I imagine thats a good thing for him right now. I hope he continues to rest for the rest of the day. He needs heal. All his PO meds are stopped and he doesn't have to be woken for anything. He has started TPN, so we don't even have to worry about him needing to eat. Please continue to keep him in your thoughts and prayers. He may be an amazing strong boy but he can still use lots of support and some positive energy sent his way.

Sunday, January 11, 2004 7:13 PM CST

I know, time for an update! Conor is doing as well as can be expected under the circumstances. He is having alot of pain and we can't quite isolate where or why...it may be related to his fevers, but we can't quite figure those out either! He is pretty up and down based on how he is feeling and I can actually see when his pain med and tylenol kick in and wear off! He transforms before my eyes.
He seems to have an infection in his throat, he has been complaining it being sore for a few days and today was the first day that I got a good look (the doc did look on friday when she did his LP and saw nothing) and I did see some white spots and some redness. He is on the strongest antibiotics he can be since they just changed them 2 days ago in case he wasn't responding so he is covered there. Today they started a pretty strong antifungal med.in case there is something of that nature going on that we haven't found yet. That just started about a half hour ago and runs for 4 hours.
He is on alot of different meds. There is one chemo drug running 24 hours, one that he gets for 1/2hour 1x a day that he got for three days (he got the last one this aft) there is another chemo he takes orally that he'll get for 7 days along with the 24 hour chemo. Then he'll get a 2 day break and start up chemo again - one every 12 hours and then the once a day one again. He is getting tylenol, codine, benadryl as need as well as 2 anti biotics and an antifungal.Along with the regular meds he was taking before! Phew...its quite a list!
When I said he is handling it as good as can be expected it may have sounded a little negative. You have to remember this is conor we are talking about and anything less than running around and playing all day is not normal. So it is very hard to see in him in obvious pain and not be able to do much for him. But when he is feeling good, it is amazing to see. Pretty much each after noon he feels great and is able to be up playing and laughing. He actually kicked me out for few hours today! Saying he was having so much fun with dad, that I should go. He couldn't wait to get rid of me, but when I returned 3 hours later he was whiney and clingy and asked me never to leave again.
I am trying to get out more to spend more time with aidan. I miss him so much. Last night I went home for a few hours after supper so I could be with him. We had a nice long bath together playing and splashing around. And an even longer, nicer cuddle in the tub, with aidan laying totally submurged in the warm water, his head on my lap as he nursed quite contently. It was so beautiful to share that time with him. I needed that reconnection with Aidan. Sometimes I feel like a drive through milk stop for him but last night was surely five star dining! I miss him terribly all day. It feels wrong to not have my boys together with me. Hell, it IS wrong. I know aidan is happy and content spending time with his Nana, but I wish it could be so differnt.
Conor has been enjoying playing all the wonderful toys that were sent to him from Rio Grande Highschool in New Mexico! Thank you!! for the wonderful,thoughtful gifts. Conor loved them so much, he had us up til midnight making sand art...
conor's counts have responded well. His wbc and blasts are down dramatically. His platelets have been hit hard and he needs transfusions every other day. His blood work looks much better. Now we just have to wait for it to hit rock bottom and deal with all the issues that come with that.
I am dealing with all this the best I can. I don't want to do this to him. Not at all. but I have to help him, have to give him every oppurtunity to fight and to beat this. Its hard to put him through so much, but there isn't much of a choice. I am confidant he will respond very well to this treatment and recover fully. Its the next two to three weeks that will be the roughest on him. Just like transplant all over again we are told. Except his counts may be down longer due to the fact we are not giving him new marrow.
I have a running list of things in my head that need to be said but I am having a hard time seperating them all. So I will leave it at this for now. Please know he is doing well, and still manages to be a big source of strength for all of us. I am so impressed by his strength and his courage. No matter how much he hates all of this, he continues to do what is asked of him and for that, I couldn't be prouder.
Kristy

Saturday, January 10, 2004 1:00 AM CST

Its after midnight and conor is still up! I am pretty tired so this hopefully will be a short update. there is lots to say, but I don't have the energy right now I need sleep!
It is AML. More specifically AMML type M4. What does that mean? Not much differnt actually. JMML is a chronic or slow moving leukemia that doesn't respond to chemo and needs a BMT to cure and relapse rates are high and prognosis poor even with BMT. AML is an acute fast moving leukemia that requires intensive chemo, and BMT or 6 months of continued chemo. Cure rates are higher than JMML BUT conor's case is still considered a relapse and in any leukemia that is not good, especially following transplant. So is this better? Who knows...I think it is. But what do I know?
I laughed when dr. lewis came in and told us it was no longer JMML. I said that I have been waiting for almost two years to hear my son didn't have JMML, that I was just waiting for someone to walk in the door and tell me that Conor didn't have JMML - guess I need to be more careful what I wish for or at least be alot more specific about it.
Any way, I am started to ramble, I am too tired to ramble. COnor is doing well. His chemo started today with a lumbar puncture and chemo into the spinal fluid. A one time thing unless it is confirmed that there are cancer cells in the fluid then the chemo will be repepated. He gets one drug via IV for 24 hours and two others pretty much for 13 days straight. Then wait for his counts to cover, do a bone marrow aspiration, confirm remission, recover and move to transplant.
Looks like calgary will be our home for a long time! at least 5 months! not that we will see the outside of the hospital much.
Conor loves to get mail. So please post cards, pictures anything, he loves it. I'll post the hospital address soon so that mail can be sent to him. He is in room Q4 if I haven't already mentioned that.
Briefly when talks of another cancer all started, I got scared and weak and tired and thought that if it was a secondary cancer that I would say enough. I am so far beyond giving in now. He is well. He is fighting. I have to too. Giving in is NOT AN OPTION. Pallitive care was brought up by his doctor because as he said, he wouldn't be doing his job if he didn't. BUT his recommendation is treatment but we could walk away or stop at any point. We agreed. stopping now when conor is clearly able to fight is not an option. His energy is amazing...
We are all tired and beat down by this, but I am getting my second wind ( at least I am sure I will once I get a good solid 3 consecutive hours of sleep! Haha!) and round 2 will be a knock out! We have got some serious ass to kick and as the nurses and doctors here will tell you, conor is very very good at kicking!
more tomorrow...
Kristy

Wednesday, January 7, 2004 9:59 PM CST

How's this for a kick in the ass? Conor's leukemia has Changed. We are not sure yet as to what but Dr. Lewis is almost certain it is AML. Flow cytomatry tests were done today that clearly showed his cells behaving differntly than JMML and now they just have to figure out if it is the JMML that has changed to something else (aml) or if the AML is a seconday leukemia from the treatments he's recieved. I think I got all that right...either way it doesn't really matter. the treatment will be the same. the regular treatment that they give to other AML patients- a 28 day treatment to induce remission then we move on to transplant. there is much more to it than that of course but since we don't know any thing for certain yet, I won't get into it all.
Its not better that its AML and not JMML. It just means a differnt treatment and the whole FTI thing is out.
I have spent the last few hours researching and looking for info but there doesn't seem to be too much out there. Really how much more info can I possibly digest?
Its all around just plain crappy.
They will be doing a bone marrow aspiration and a lubar puncture tomrrow for further tests and to be clear just what it is he now has and we should be starting some kind of treatment by this weekend.We jut have to figure out exactly what we are treating.
Conor is doing well and right now playing on his bed with his trains and 2 bottles of baby powder 'snow'. It smells good in here for a change, but its hard to breathe with all the powder in the air!
Kristy

Tuesday, January 6, 2004 4:36 PM CST

Thank You everyone for your calls, your help and all the info! We are waiting to hear from Dr. Lewis who sent conors file to be reviewed by whomever decides the elibility to get the drug. THEN we need to get approval from Health canada (?) to GIVE the drug. Then we need to have it shipped...It takes time, we have to be patient and wait. We don't have alot of time. I'd rather try this (the FTI) than do another round of chemo or go to transplant with high disease. I am not good at waiting!
We may start chemo tomrrow depending on how all this goes.
We are back at the apartment now. COnor is eating, playing and watching tv. he isn't due back for a few more hours.
again thank you for your support.
Kristy

Tuesday, January 6, 2004 12:33 AM CST

Conor is feeling great, and full of energy. You would never know to look at him he is such a sick little boy. His wbc continues to rise, as do his blasts but he is still Neutropenic. One doc said the blast percentage may be due to the machine picking up a different cell as blasts if he has an infection, but I doubt that is the case.
Today was a busy day. Lots of discussions. Mainly that transplant has been postponed. The new date is the 19th of January. We have to find and treat whatever is going on. Could be nothing. Well, nothing being just his disease causing the fevers. In that case we will treat with chemo or something else if we can get it and move to transplant as soon as his counts start to recover. We are trying to get FTI to use outside of the study -which is only available to newly diagnosed kids, but has been used outside the study on a compassionate basis. I know that won’t cure him but it may help to get these blasts down and bring his disease down and get us to a better place for transplant. I know that is not without its own side effects etc. but its better than the alternative. I hope being in Canada does not affect us being able to get the FTI, the only kids that I know that have gotten it off study did so in the US. I know I will take Conor wherever we had to in order to try it if need be.
We had tried to get a new drug that has not even begun to be used yet, but it is not available at all until 5-6 months from now. We had thought that we may wait to try that if would be available in the next month or so, but it won’t be. This is a drug that is being studied and tested (it is a chemo drug) that shows great success against JMML in testing (in the lab) but has not moved on to use or testing on patients yet.
So far nothing has shown up to explain the fevers or the blood(?) in his poops. Thankfully the blood or what we thought was blood has stopped now though. Tomorrow there is a CT scan scheduled to look for infections and to rule those out. If nothing turns up we could proceed to transplant with his disease as it is, but I just don’t feel that is the way to go. Its all minute by minute…
I just got his blood counts from earlier this afternoon. His wbc is up again from 12 to 22...when it decides to rise is doesn’t waste any time.
I don’t know what else to tell you. Conor had a great day. Even got to go back to the apartment for a few hours. He had really fun time playing and running around. Aidan was happy to see him. It is so wonderful to watch them play together. They are starting to really play together (well in-between fighting over toys! Haha)

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The above was written last night and there has been a lot of goings on since then and I’ll try to get in as much as possible.
Conor’s blasts are at 62 percent today and his wbc is 44.4. We have to move fast to get this under control. We may have to start chemo again so we can control this enough to get him to transplant. Since his dates were moved we have to arrange for radiation etc. and that takes time for scheduling. We may do the ara c and fludarabine again but even that in the doses we have to give it may cause complications. We want to try the FTI and dr. lewis and everyone is working really hard on getting that. It IS available off study but it may be complicated by Health Canada approval. Even when it is approved it will take time to get it into Canada. We are desperately hoping there is some way to speed all this up. If anyone knows PLEASE contact us at the numbers below or at the hospital here in Calgary. 403-943-7211 ask for Q cluster and then room Q4.
Conor is feeling great, looking great and it is unbelievable that this is all going on…
Kristy

Monday, January 5, 2004 2:07 AM CST

Sitting here in the dark way past midnight and I should be asleep. Its been a crazy couple of days and just when I am able to get some sleep I can’t. I want to call darren but I don’t want to wake him or aidan and have the join me in my insomnia. So here I am. Tomrrow is scheduled to be the big day. I say scheduled because I am writing this from the hospital now. Conor was admitted yesterday evening for fever. So we started our stay earlier than anticipated. There have been a few things going on that we can’t quite figure out and hopefully we can have all that sorted out tomorrow.
On Friday conor’s blasts were at 5today they were 36Dr. Lewis had hoped that with the 5 days of chemo conor received that his disease would be minimal when it came time for transplant. That isn’t the case. It opens up all kinds of other issues and questions. Like when is a good time, and is any time a good time? Can the transplant even be successful going into it with a high disease? We talked about maybe doing another round of chemo prior to transplant and talked about looking for and using other drugs instead of the ara c and flurdarbine for that.
We talked about a lot.
On Friday conor had his first ever reaction to platelets. That was scary. It happened 20 minutes or so after he got them which is quite weird. Fortunately it wasn’t a bad reaction (so I was told!) and he ‘just’ got hives and swollen eyes. One minute he was fine, the next I could hear him sniffling saying his nose was itchy and I thought his eyes were a little puffy. In the 20 seconds it took me to get a nurse and return his eyes were swollen shut. It just seems to be one thing after another lately. All the stuff I’ve only heard about and all the stuff we’ve been so lucky to avoid seems to be coming on at once.
The stomach bug he got last month that landed him in hospital. The dehydration, the potassium drop and low heart rate, the Cdiff (which he may or may not be still be testing positive for??) and now this fever and hospital stay right before transplant. His platelets are low today and he’s had lots of poops with blood in them. But the really really odd thing is, a sample was sent off today and was tested for blood an it came back negative. Sure looked like blood to me and his nurse! He had another after that looked like mostly blood so we’ll try and send off another sample tomorrow.
Part of the reason I can’t sleep is that he’s getting platelets sometime tonight and I know as soon as I fall asleep they’ll arrive. There is no way I can sleep knowing that he may react again. I think they are random donor again, so there is a chance - I just hope some checked to make sure they aren’t the SAME donors as before!
So once again we don’t really know what the hell is going on. Conor is going well despite it all. He has been hard to confine to his room trying at every opportunity to make a getaway. Running naked, or half naked (clothing seems to be optional these days) out of his room screaming “playroom! Playroom!” He just want to play. He’s spent they day running circles in this small space and jumping on beds and causing a commotion. When you walk down the hallway here you can hear nothing else but the noise from Conor’s room! Although I wouldn’t want it any other way, it sure is hard to keep him busy. For some reason he is taking everything out on me lately. Hitting me, biting me, scratching me, kicking me, screaming at me, saying I’m not his friend, he doesn’t love me, that I should go away, that I should leave. Some times I do. I tell him not to say things he doesn’t mean and he screams he does mean it, so I leave and then he cries inconsolably for to return and when I do begs me never to leave again. I am pretty much out of options, tricks and ‘the right the to say’. There isn’t exactly a parents hand book for this kind of thing . We’ve had done everything we have been able to do to make all of this as easy as possible for him and to keep him busy and to occupy him, but he’s just fed up and pissed off at being always told no. I hate myself when I leave him like that. I always tell him I leave because I need a time out, that I love him, that he can’t be mean to me, that I need a minute and so does he. It always seems to work. I hate it, but there isn’t much else to do.
I asked him to night if he wanted me to stop doing all the nursing stuff and all the other extras I do, and just be his mom. If he wanted me to stop doing medical stuff and just take care of him, cuddle him and play with him. He cried and cried and cried at the thought that I wouldn’t do his vitals anymore. He wants me to do those things. I thought I may be trying to do too much for him, that he wanted me to do less, just be mommy. But no. He told me tonight before he fell asleep that he was sorry for the way he acted. When I asked him why he acted that way he told me he was upset at a dream he had last night. It took him awhile to tell me about his dream and once he did tell me he said he hadn’t wanted to tell me before because he didn’t want worry me or upset me. He said he dreamt we left him all alone in the house. That we just left him. He was scared and he didn’t know his friends Cassie or Nicholas’s phone numbers to call and he just stayed in the house all alone. He didn’t know where we were or if we were coming back. He kept saying “ I was upset that you left me all alone”.
I had hoped he would never feel alone in this. But I guess no matter how much we are here for him, the truth is, he does face this alone. It must be so isolating for him. He’s a smart kid. He knows there is a whole other world out there where kids run around with snotty noses, play in sand boxes, eat dirt, go to playgrounds, go to school and just play with friends. He knows those things exist. He knows he’s not a part of that world. And no matter how hard we try to make his world a good one, its still not the one he wants to belong in.
I am so tired. Its all coming to a head now, we are smack dab in the middle of it all, knee deep in this and I just want it all to be so different. There is a line from a Blue Rodeo song that keeps going through my head. “I’d rather sit here with this empty hope than to go through all this shit again”.
Kristy

Saturday, January 3, 2004 4:39 PM CST

I just updated our phone number. All mail can be sent to our home address.
Lots to update and I'll do that soon!
Kristy

Tuesday, December 30, 2003 8:59 PM CST

Can some one please tell me how to pack for 3 months in just over a day?? we got home last night after two weeks away and have to leave thursday for transplant. Tomrrow is booked up for blood and platelet transfusions...that leaves tonight and tomrrow night to pack. I'll either take too much or not enough...
Conor is doing well at home. He is so happy to be here. I hate that he won't have time to enjoy being home before we drag him off again. His admit date is the 5th with chemo on the 6th and the radiation on the 7,8 and 9th. I am not clear yet if the infusion will be the 9th or the 10th. Aidan has to be there for the 2nd for his first gcsf injection. It is used to stimulate his bone marrow to produce more cells. He gets 3 of those. Then on the 8th he is admitted overnight for his surgery to place the cathiter do the apheresis to haravest the stem cells. He could be in ICU for 3 hours or 8 hours depending on how long it takes to get the required the cells. The shorter time the better as he will be sedated the whole time. I am not sure how we'll manage this time with Conor being in isolation and aidan being admitted. they won't be able to share a room. So we will be seperated the night before transplant and the night of. And the for one or two trips to radiation...I hadn't thought of that one. I won't be able to go with conor...either that or I won't be able to stay with aidan. Conor is transported via ambulance 2x a day for 3 days for the radiation. The day of the harvest one of us will stay with aidan in ICU and the other go with conor to the radiation. Crap. I hate that we can't all be together all the time.
I can't stop thinking of aidan and all he has to go through. I keep remembering the size of the cathiter they pulled from his groin the last time. I get weak when I think of it. It is much easier being in the dark about such things...
I keep reminding myself how strong he is, how brave.
I keep thinking of conor being all alone in that radiation room. (Nancy B. I am holding you to your promise to take good care of Conor!!). I keep reminding myself how strong Conor is. How much of a fighter he is.
I keep looking at my boys and drawing strength from them.
Kristy

Monday, December 29, 2003 7:03 PM CST

Just got home. It is so nice to be here.
kristy

Saturday, December 27, 2003 10:03 AM CST

The best Christmas gift of all-Conor is back! Conor as I know him is back. I was so scared last week. I had never seen him so sick, so scared himself as I did then. Even through transplant he never got as sick as he did last week with all the problems with his potassium and his heart rate. What a terrifying time for all of us.
He started to feel himself christmas eve, but still wasn't 100He was thrilled and excited and looking forward to santa, but just couldn't manage long enough to stay awake to hang his stocking or put out his reindeer food. He fell asleep for a few hours which gave darren and I time to wrap gifts and organize the room and tree. Just as we were climbing into bed, Conor and Aidan woke. We all cuddled in bed and read "the night before christmas". The four of us snuggled (crammed!) into the hosptial beds, Conor next to darren with is head on his chest, Aidan in close at me breast, trying to nurse and see the pictures and hear the story- darren and I taking turns reading...after the story was done it all turned around with Conor cuddled in his head on my breast, Aidan asleep on darrens arm and me fighting to stay on the beds as they threatened to seperate. It was a wonderful night.
I think I was the first one to wake up, or maybe it was aidan. Though conor did wake 3 or four times at 2, and 3 and 4...wanting to know if it Santa had arrived. But it was actually Aidan that woke me, thirlled that he could crawl over darren and nurse. How many morning he has woken lately not to find me there??? I don't know who was happier him or I...Pretty soon Aidan noticed the tree and all that was under it, and I point out to him that santa had been there and with that conor just up and yelled "he was?!" and climbed out of bed!
All I can say is WOW at the presents they both got. Conor just kept unwrapping and aidan would reach for whatever conor had put aside as he reached to unwrap another. aidan didn't have much time for unwrapping o conor opened all his too.
We had a pretty calm day and everyone was pretty beat from the early morning and the events of the previous days. we spent most of christmas day just hanging out, playing with new toys and finally a three hour family nap. It was a very quiet uneventful beautiful day.
Yesterday Conor was back to being his playful self. He woke with a grin on his face and said "so mom,whatdoyouwanttodotoday?"Which set the tone for the day for minute after minute he changed his mind! We played blocks building houses and tearing them down. We played trains and games and watched movies on his dvd player.
After Darren and aidan arrived we played some more. Darren played trains with Conor while I caught up with aidan. Them Micheal stopped at our door asking darren to help him with his hotwheels. and darren went to play with him for a bit. Micheal has been a patient here his whole life. He is 8 and had a transplant over a year ago. He hasn't spend much time out of the hospital. He is an amazing boy with amazing strength. Conor was upset at first that darren left to play with micheal but quickly came around saying that it was ok that micheal could borrow his daddy for awhile since there was no one to play cars with him.
The afternoon was very quiet with all of us cuddled on the bed, watching a movie, playing and reading. Darren left for few hours after that to run errands and pick up supper. Conor wanted curry again!
I am trying to get caught up on all that has gone on the past few days. Sorry if it is long and dragged out. I know so many of you have been wondering how conor has been especially after last week and the fears of the PICU. I may be trying too hard to cram in a weeks worth of events but I just wanted to let you all know that things are good. That Conor is good. That we had a wonderful Christmas and that we were all together which was what we wanted and needed.
We got incredible response from the newspaper article that ran on Tuesday. My picture and Conor's picture were on the front page of the Edmonton journal with a beautiful article about this site and my journal entries. I have been contacted by so many people. A few have even come by with gifts and support for our family. Even more have contacted us, or been in touch with friends of ours and sent their support. All I can say is I am deeply touched and overwhelmed by the generosity and friendship of so many that we don't even know and the continued support of everyone. I truley hope that each and every one of you know what a differnce you make in our lives. I don't often get a chance to thank people individually and sometimes my mind is so occupied with living in the moment and focusing on conor but please, PLEASE know that it is YOU that makes it possible for me to do just that. It is your support that enables darren and I to focus all our attentions where it is needed. With Conor and our family.
Last night I had the most wonderful night with Conor. I realized this morning as I was visiting another caringbridge site that I have been grieving for conor for a long time. I have been grieving for him for him along with the other kids that have battled this disease and who are still battling it. I saw so many win this fight the only way they could- to let go and move on to a place where cancer was no more. Where they could be free of all this hell. I grieved for conor as I grieved for them. I think I even pushed him away. I was even angry with him. I started to keep him at a distance. I believe he was doing the same. All the weight of the relapse, the second transplant decisions were all just too much I think. Conor and I have fought so much lately over such little things. At times I feel as if it were him I am married to! We argue, we fight, we make up. We have a bond that I can not explain. There are times when we go to bed angry at each other only to wake in the middle of the night reaching out for one another just to hold and everything else is forgotten. Last night we danced. We sang and we played. At one point he pinned me on the floor and licked my face. He covered it in kisses, he pinched my nose and he laughed with me til I cried. He held me, he rocked me and he touched my soul with his love and laughter. When we finally settled in for the night he kept asking me to come closer and closer and closer, to hold him tighter. He woke in the middle of the night saying "I love you mom" if he was even awake at all.
I have crossed through something I am not sure what. And I think conor has too. For awhile I was lost searching for answers and trying desperatley to make the right decision. I think seeing conor so sick and seeing him find the strength and come through it all woke me up to so much. I think now that so much of my fears with the transplant were centered around seeing him get so sick I wasn't sure if I could do that to him. But he showed me. He showed me his strength and in doing so he gave me the strength I needed. I am becoming more positive about this upcoming transplant each day. I guess I wasn't even sure Conor wanted to keep fighting. And now I am
Kristy

Tuesday, December 23, 2003 10:26 AM CST

No trip to the ICU. His potassium still hasn't come up by much. It went from 2.3 to 2.8 but its not enough to make a differce. He did very well with his ekg last night with both of us (conor and I) putting on the lines for that. We can both add ekg tech to our resumes now along with oncologist and registered nurse!
None of us got much sleep. There was a nurse in the room all night to monitor his heartrate and to add potassium throughout the night. He is currently sleeping and getting a bolus of potassium again. He is running at a maxium on his IV and with the bolus.
He still has lots of poops and that is where all the potassium is going. He is under the watchful eye of his favorite nurse, Susan and he is sleeping well, so hopefully this extra potassium will work and nothing else will be needed. we can't give him much else to stop the poops because of the Cdiff, we want him to poop all that out.He is getting meds for the cdiff but they don't seem to be working.
There are words that strike fear into a parents heart cancer was one of them. bone marrow transplant is another and of course the gut wrenching RELAPSE. But ICU just grips at my heart and scares the shit right out of me. He made it through a transplant without a trip the ICU. I am so afriad of that place - that if he goes there he'll never come back. I know that is crazy but I am allowed to be crazy at this point.
Kristy

Monday, December 22, 2003 9:08 PM CST

Conor is pretty sad about not being home for christmas. He keeps asking to go home. He wants to be home to play trains with his friends. When i told him we would bring his trains here and invite his friends over to play he said he didn't want his friends to come here at all. Its no fun here he says.
Its so very hard seeing him sad. We try to do things everyday to make him happy and keep him entertained, but he is just plain bored and pissed off with being stuck in this room. Hopefully tomrrow he'll be feeling up to doing more and we can lift his spirits some how.
He is feeling pretty wiped out by this chemo, he hasn't eaten hardly anything in almost 10 days and he just started TPN this evening. The TPN is an IV feeding. He did eat a little today, but not enough to make a differnce. You can really notice the weight he has lost. He has no fat on him at all, and he complains that I hurt him when I pick him up.
His potassium level has been pretty low and they are having a hard time getting it up due to the Cdiff and diahrra. They just informed me that they are giving him the maximum potassium they can give him on the unit. If they have to increase it more, they will have to move him to the ICU for the night to monitor him more closely while they get his potassium levels up.
I have to go call darren and let him know. Please keep Conor close in your thoughts tonight.
Kristy

Sunday, December 21, 2003 6:45 PM CST

Conor and I were sitting here reading guestbook entries and emails together and having lots of fun. He couldn't wait to hear the next one and the next one. He wanted to write a letter to all his friends that have sent him cards and letters and presents but by the time I got signed in and ready to go, he had fallen asleep :). So I'll tell you what he wanted to say anyway. He says thank you all very much and that when he is feeling better he will make and send you all cards and make bracelets for everyone. He also said that when he is all better he is going to spend all day making stuff and sending letters to kids who are sick to make them feel happy in hospital. He feels sad when he sees kids in here who are all alone who's mommy and daddy aren't with them. He can't undertand it when he hears a child crying for his/her mommy and they aren't there. He says he wants to make sure they never cry.
He is very excited for christmas and can't wait for santa to come. That is about as far as we got before he fell asleep, so I'll continue later.

Darren and I ran out this afternoon and left conor with his Pop while we did some shopping. I ended up just grabbing a few things and coming right back. All I could hear while I was there was his little voice saying "don't go mom, stay, I'll miss you guys" When I asked him what he wanted me to bring him back he said 'nothing mom, just stay here with me". Its funny because I am here all day everyday and I don't go anywhere, and he hardly notices I am around then when I go to leave, he clings to me! I guess he's just used to me always being here.And I always will be. I hated leaving him today. Darren will understand if he gets recycled christmas gifts from me because I don't think I'll be leaving again. I can't bear to be far from him. I found even sleeping in the hospital beds side by side with 2 feet between us too much, so now I push the beds together all the time and we have a double bed in here. We sleep cuddled face to face holding hand most all the time and ther is nothing more I love than his stinky breath on my face. Ever since I can remember we always slept tangled up in each other. From the first moment I held him in my arms and he nursed to sleep and stayed in my arms all night. I was terrified I would drop him and had the nurses driving me crazy to take him and put him in the cot or bring him to the nursery. There was no way anyone was taking him from my arms. I slept or half slept with him held close all night. When we came home he usually slept on my chest or near by at my breast, tucked under one arm with his feet between my legs.As he got older, he still slept there. I love the feel of his little soft warm feet tucked between my legs. And if he tosses and turns at night and turns away from me, I am often awakened by his hand reaching for mine and his feet kicking at my legs trying to snuggle in finding a place just above my knees. Then he settles in and sleeps soundly. As do I.
Kristy

Thursday, December 18, 2003 11:57 PM CST

How many more sleeps til Santa comes? Is santa coming tonight? How will santa find me...thoughts of a four year old fighting for his life. No differnt from most other four year olds right now. I find comfort in that. He is so excited for christmas,so wrapped up in the magic of it all.
He is sleeping soundly now after many meds, tylenol, gravol, ondansatron, benadryl, septra, a few others in his IV and his first dose of his chemo. The second starts in a few hours.
He has such a great day. He is more himself, more alert, more silly and funny and just plain cuter than ever today. He makes me laugh. He made me a pretty bracelet tonight. He is always making braceets and necklaces for all of us and has bought darren and I rings.
He always thinking of others. Today aidan touched a hot plate and hurt his hand right away conor yelled "get a cold cloth, hurry hurry aidan burned his hand"
Yesterday morning when darren brought aidan in he lay on the bed with Conor and rubbed conor's back. Today they lay next to each other and held hands. They fight like only brothers can and they love each other like only brothers can.
He wants aidan as his donor and so do we. a transplant date has been chosen. Its January 5th for admission. He gets VP-16 on the 6th, then 3 days of radiation and then transplant. We will withhold the ATG, the methotrexate and cyclosporin and use stem cells from the peripheal blood instead of bone marrow.
We are doing the 5 days of chemo then head to calgary to be there when he recovers to go straight to transplant with minamil disease.
He's strong, he wants to fight. We have to give him this chance. If we don't go ahead with this plan he would only have a matter of weeks. We are not trying to buy time with this transplant we are looking for a cure. We are fighting for his life. For ours as we know it. The thought has crossed my mind to stop. To just leave with him,take him home and just hold him and rock him...
last christmas darren gave me a rocking chair and the first time I sat in it I had a flash of a moment in my head. I sat in the chair and rocked conor as he took his last breath. I hate that chair. I keep it to remind me that could always chose not to fight and remind myself what I am fighting for. So it sits, cluttered with laundry, toys and other stuff in our livingroom far far away from where I am now, where we will be in calgary for transplant. But I also keep it just in case that is the way it is supposed to be...and hope that it is not.
I keep doing what I have been doing. The only thing I can do - listen to my heart, listen to conor and fight.
Kristy

Thursday, December 18, 2003 4:34 PM CST

Here we are againg in hospital. This stomach bug finally got the best of Conor on Tuesay and landed him in hospital. He spiked a fever just when darren and I left him to do some christmas shopping. First time we leave him!! We rushed home and rushed back to edmonton. Of course by the time we arrived the 38.7 temp was down to 37.2. But his potassium was low, he hadn't eaten or gotten his meds since saturday and he needed platlets so we made sure he was admitted. 5 hours of waiting in the ER later he was brought upstairs. Crazy.
He is feeling better and finally able to eat today. His wbc is rising again so more chemo. May start that today or tomrrow. We are doing 5 days of chemo this time at 50ra-c and fludarabine. That would bring us up to the 23 or 24th. Depending on how Conor is feeling we may be home for christmas, but we'll have a wonderful chritmas no matter where we are. We'll all be together and I have no doubt Santa will be able to find Conor and Aidan no matter where we are! We are going to bring Conor's tree in tomrrow and decorate his room. We are being very careful to limit his contact with others and we aren't letting him out of his room. He is on respiratory isolation anyway due to his cough, runny nose and puking.
Doctor Desi just came in and informed me that his stool cultures tested positive for C diff so that explains some of his symptoms. His diarrah started yesterday and cultures came back today, doesn't explain the vomitting though! He'll be started on Flagyll tonight and his chemo starts tonight too.
Lots more to update, but I'll get to all that later. Thank you everyone who has been helping us out. Thanks for giving us the wonderful gift of allowing us to be together and focus our attentions on Conor. Thank you all for your love and support. Keep on doing what ever it is you do best- pray, send positive vibes, dance, sing, scream...whatever - its gotten him this far and I know it will take him further.
Kristy

Tuesday, December 16, 2003 12:42 AM CST

Got home on Friday, stomach flu hit conor on Saturday night, and Aidan on sunday. Spent most of the weekend laying around cleaning up puke. Everyone is feeling much better today.
Conor's counts are concerning once again. WBC is up to 35.9 but that brings his blasts down to 17% better than 37% but the wbc sucks.
His potassium is a little low today and it is once again taking forever for the hospital to get back to us. If we have to go in, we'll never make it by the time they close...he'll most likely need platelets tomrrow so we'll go in for sure then.
No other decisions have been made yet for transplant...i'll up date soon.
Kristy

Friday, December 12, 2003 10:06 PM CST

we are home!!

Thursday, December 11, 2003 10:57 PM CST

Quick note to say Conor was admitted yesterday. The fever was gone when we got here but with his cough and counts we decided it was best to be admitted. His viral stuff all came back negative, flu, rsv etc. so that is good. No word on his other cultures, but it doesn't look like anything will show up there either. Also good. I won't write that he hasn't had a fever since...hopefully he'll get out of here tomrrow.
I have no idea what is going on with his blood work. His hg seems stable at 85 but we transfused anyway because he was looking so pale. His platelets were 21 yesteday so we got them as well. He only went up to 57 today. They think that is a good enough rise to still warrent random donor and NOT single donor. Crazy. He is covered in bruises.
Its teh other blood work that is baffling me. His wbc keeps going down. Even though it had been going up. It was .9 today down from 2.3 on Monday. His neurtaphils are down to 0 as well. His blasts are at 35%. That is what scared me the most. I am calling his doctor in calgary tomrrow of go over all. Despite being in the hospital here it will take forever to get any answers. I didn't get any today. Right now they are treating him for fever and for being neutrapenic. I think there are bigger issues.
Anyway he is doing well. I just hate being in here with him its the worst place to be to expose him to germs. We were lucky last night not to have a roomate but we just got one. He isn't an oncolgy patient and I think that is just wrong, non cancer patients and parents aren't nearly as careful. Conor does not need to get sick right now. He needs to stay as healthy as possible to ensure he is strong going into this transplant.
He is in good spirits and loves that he has unlimited access to the blanket warmer. He is quite excited that his Pop or 'Tops' as he used to call him is coming tomorrow. My dad is arriving from Newfoundland tomrrow. Conor is looking forward to seeing him. Its been over two years since my dad has seen conor and he's never met aidan.
Hopefully my next update will be from home tomorrow. Until then the number here is 780-407-7989.
Kristy

Wednesday, December 10, 2003 10:16 AM CST

We have made the decision to go with the full radiation. That much we know. We still feel in our hearts that Aidan is the best donor for Conor. And I think Conor does too. When we ask him he says Aidan-because he is my brother. When I explain to him in the best way he can understand about maybe using someone who we don't know and give him the reasons why he'll say "well maybe we should use some one else..." but later he'll come back to me with "You know, I think we should use Aidan." He's pretty much where I am and where Darren is on this. We feel we should use Aidan then there is a lingering doubt that maybe a unrelated would be best, but that feels wrong too. We keep coming back to Aidan. Conor's doctor feels that unrelated is our best chance of getting the graft vs. host. I think the unrelated is the best way to treat this DISEASE, but not the best treatment for CONOR. So we still have some details to work out. But I know I feel so much better now after reaching these decisions, a weight has been lifted. Maybe now we all can relax just a little bit. Our lives have been consumed by this and its driving us all mad!


Conor has had a cold for about 10 days now, stuff nose etc, but no fever. Yesterday he developed a slight congested cough and this morning he had a fever of 38.1. It seems to be going down a little, but we are bringing him in anyway for cultures and bloodwork, and an exam just to be sure. Especially with this horrible flu that is going around.
So we are off to Edmonton again! We were just in on Monday for platelets.

I have been getting lots of emails lately from everyone wondering what they can do to help us. Its so hard to say exactly. There is't much the boys really need for christmas in terms of toys etc. I have been telling most that we would like things to have things to keep Conor busy while in isolation and later when we are home have to keep inside. Games, crayons, markers, coloring and games. Busy hands busy mind!! So we all don't go mad. Other than that this year has taken a huge toll on us. We have pretty much exausted our savings from the fundraisers last year. I don't know how we would've survived without that and all the friends and family that stepped in and helped us out. I realize this has continued on for longer than anyone thought and the support of those that love and care for Conor (Well all of us!) is what has got us through and continues to keep us going. It is so hard for me to write all this, asking for help is so hard but I have to remind myself that the thing Conor needs most right now is his family being together. Its what we all need. So the things we need most right now are help with practical stuff. Gift certificates for groceries, gas, meals would help us so much. There I said it. We need a little help until we can get Conor through these next few months.

Thank you for everyone for your love, support and prayers. I come here so often just to read the guestbook entries and feel all the love pouring in from all over. I feel a little less scared.

Kristy

Saturday, December 6, 2003 9:21 AM CST

We still haven't made a decision as to which treatment to go with for Conor. Sometimes I wish I could just put it all on his doctor's and forget about it. Let them decide and concentrate on being his mom. But I just can't do it. I have to know that they (and we) are doing what is right for Conor.
Dr. Lewis presented us with 2 conditioning regimens, both with TBI and both with unrelated donors...the reasons for this being:
- Conor failed the first transplant with the protocol we used that did not contain TBI, ATG or an unrelated donor
- Conor was taken off immune suppression early, given DLI and still NO graft vs. host disease
-Leukemia patients seemed to respond better to radiation (based on AML studies, not JMML)
-Conor’s cancer clone may be getting stronger and resistant to chemo based on his 100risomy 8 and fast recovery after chemo
-An unrelated donor is wanted to get GVHD, and transplants with unrelated donors seem to have better results than with sibling donor's
-The GVHD is wanted to get a graft vs. leukemia effect and hopefully kill off the cancer clone

So the two options are one with 1200 Gy TBI and VP-16 (chemo), an unrelated donor and ATG (immune suppression). This is the protocol that is recommended by our doctor. The second one is using Fludarabine (a chemo drug used in his chemo’s now that he responds to very well), Busulfan (he had in last transplant) and ATG and a lower dose of TBI at 400Gy. This protocol has never been used in JMML but has great successes in Adult leukemia’s. It has virtually no toxicity, a good cure rate, and the relapses they have seen with this are 4-5 years later.

So it’s so much to consider. I have a million questions stemming from both protocols, I have a reasons to use one or the other and reasons to use neither. The question that keeps coming up in my head is what is our goal? What is it we want from this transplant? CURE obviously, but at what cost? To what end? The radiation at any level will have severe long-term effects. Learning, growth, sterility etc. to what degree no one can predict. That in itself is not what bothers me, I know whatever long term effects that this has on conor (don't get me wrong the chemo has just as many effects, they just don't seem to be as severe) we will still love him and want him and we will still be his parents and he will still have the best life we can give him. Something we did even before this disease crept into our lives. The effects of the radiation don't seem to be so concerning, as they were the first time around we had the choice to use it or not. And no, I am not second-guessing myself, I don't think for a second conor relapsed because we didn't use TBI, not for a minute! Why exactly he relapsed is not clear. He had so much going for him going into that transplant, he should've been cured, and why he wasn't, no one can say. And no one can say either that if we did the exact same treatment again, that it wouldn't work this time. It may. Nothing is certain. We are pretty much resolved to the fact that TBI has to be used. That seems clear. Just so that we do this fully and completely and give conor every chance of beating this disease.
My issues come up more with the unrelated donor and the graft vs. host disease. Ok, they want the unrelated donor to get GVHD to get GVL to cure the cancer. They want acute GVHD. They want to see it, see it fast, and mild, treat it, and have it go away. That it seems is the magic cure for getting rid of the clone. BUT no one can predict how GVHD will go. It is a disease all on its own and IF it doesn't behave the way they want it to, it can cause serious complications, affecting the liver, kidney's, skin, eyes, GI tract...it can be severe, life long and life threatening.
I am worried mostly about transplant complications from all the chemo’s he has had in the past. I am worried about his body not being strong enough to deal with all this again. I worried about doing all of this to him only to have him die from complications. I am worried that everyone is too concerned about treating this disease, and not treating Conor. This disease lives inside HIM!! These treatments may be what are right for killing the disease, killing the cancer. But will it take my child with it? Will they all stand around after saying "Well looky there! We cured him! Sorry about him dying and all, but at least he's cured!" What the hell good is that to Conor? To myself, Darren and Aidan? Not much.
How can we possibly know which way to go? I have so often trusted my gut, my instincts, and my intuition. Well if you want to know the truth I am afraid of my gut right now. Afraid of that voice in my head. My whole life it seems I knew I would be the mother of a sick child. I had no idea it would be to this degree, but it seemed I was always preparing myself in little ways. It’s hard to explain exactly how, but it was always there. When I was pregnant I could feel it, and I was so relieved when conor was born so healthy, so perfect. But it didn’t go away. I could never put my finger on it, but there was always something lurking beneath the surface. When I took him in for his bruises that day I knew. I knew long before I think when the bruises starting showing up and going away. I heard that voice and I turned it off. I told myself I was being crazy. But I knew. I think Darren did to because he had seen the bruises and had been afraid to mention them to me. These were not bad bruises. They weren't odd in color, or in size. They were just normal bruises like you see on normal kids everyday. But they said so much. Looking back I think Conor was fighting this disease from the time he was born. Little things that didn’t' add up then, do now. I believe it was smouldering beneath the surface and he fought it for 3 years before it weakened him enough to be seen. But those bruises, that day... I remember my mother was here. I remember her telling me that they were normal, that I shouldn't worry. I remember saying I was taking Aidan anyway, that it wouldn't hurt to have Conor checked. I remember my doctor trying to assure us that they could be from anything, but seeing his concern...I remember the feeling as we waited for the results in the next 24hours. When the phone rang, when we were asked to come in for results it all seemed surreal, yet not unexpected. When he was diagnosed, I was devastated beyond words, but I was not surprised. I was in shock, but not surprised at all. Just like I knew with everything inside me that Conor would do well with treatment, that he would handle this transplant exceptionally well, that he would fly through it without complications and that he would be up running around and being himself in no time. I knew all that. I always saw a positive outcome to the transplant. But I could never see beyond that. Try as I may I couldn't see him growing up and see him being a teenager, a man. I always thought of the things Conor would be, could be. But I have never been able to see them. So that is where I have trouble trusting my gut on this one. My gut says to go with the transplant using the easiest protocol on conor as we can, because no matter what he won't make it. Buy him, us some time. My gut tells me if we go the route of radiation, of unrelated donor then we won't have the time we want or need with him. That he will develop complications, that he won't ever make it out of the hospital. If we do it the other way, he has time on his side. Time to be home with us, time to be home where he wants to be. Where we need him to be. You can see why I don't want to trust my instincts on this. I have always felt and known things even when the outcome was not as I wanted it to be. I see it how it will be, and I have never been able to change the outcome. I wish I didn't have that. I wish I could close off that part of me, and not know these things. But they are always there, so close to the surface. Even more so now. There are times I meet other kids in the hospital and I just know...
I can only hope in this, that my fears are clouding my intuition and that I am so very very wrong.
Kristy

Wednesday, December 3, 2003 0:34 AM CST

I seem to have more questions than answers after our meeting today, but in all it went well. We were given some options and some time to consider them and we are doing just that. Its going to be hard but we will do what we have to do to get Conor through this. There is no point in doing it half assed.
There isn't much new informantion really, so i haven't much to say but I knew everyone was waiting to hear something from today and I didn't want to keep you waiting. It looks like we will be going to Calgary after Christmas, most likely in January. We just have to work out the dates and treatment protocol.
We don't want to drag things on much longer, we have passed the 6 month point from his first transplant and we feel that waiting any longer won't benfit him. If we continue to do chemo and drag this out, it only gives the disease more strength and more resistance to the drugs and we also don't want any chances of infection from neutropenia to complicate things.
So January it is. We will be talking with Dr. Lewis more later this week, finalizing the treatment and working out dates. I'll be sure to update when I have wrapped my head around all this some more.
It still doesn't feel real. I said to Darren tonight that it feels as if I have been livig my life, going through the days, functioning without comprehending what I am actaully living in. Like I keep my life seperate from my mind. I feel so detached from it all sometimes. Words like "quality of life", "chance of survival", "live past six months" came out of my mouth today, i said them but its like I hear some one else speaking them about some else, some one other than my son.
I may not update for awhile, I think I need some time to get my head in order and mainly just spend time with my family. But who knows, I may update more often to clear my head! In any case, please keep signing the guestbook, emailing and being there for all of us. We want to try and make the next few weeks really special for Conor, and have a amazing Christmas together. I want this Christmas to be magical for my family.
Kristy

Monday, December 1, 2003 10:08 PM CST

I coming here to write, but I always stop. I am afriad of all the things that I may say. all the words inside me struggling to get out, to make what is happening real. It still all doesn't seem REAL. I have been staying away because i don't want to write about or face the truths that are so close to the surface. I don't want to give my fears power by putting them out. Yet part of me struggles to get them out, to set them free - never to be heard from again. I remember being a little girl and writing my letter to santa on a piece of paper then throwing it into the wood stove so the words would reach santa and he would know what to bring me. I want to take all these fears inside me and do just that. set them free, make some one hear, make them go away, disappear and get what i want.
I see little things evey day that creep up on me to slap me in the face and tell me that my son is sick. he is not just a little boy. He is a sick little boy. He is starting to look it. And that scares the shit out of me. Is his disease proclaiming itself, telling me to get ready because there is nothing i can do to stop it? I can see the disease now, on the outside. It used to only be inside, hiding. Now I see it, in the dark circles under his eyes, in his baggy pants, in the scar on his belly, in the bruises on his legs, on his back, on his arms. I see his disease at night when he sleeps seemly peaceful, only to cry out again and again at some fear I can not see a pain that i can not feel. I see his disease in my son's face when he wants to go and play with other kids and can't. I see it in his disappointment when he has to go back into the hospital. I hear it in his voice when he says, "the hospital sucks, i want to go home" He only wants to be home. HOME.
I came face to face with the monster called JMML this week. its the first time i have really seen it rear its ugly head and snicker at me. Conor spent this hospital stay pretty much in his room, in bed with the lights off. he was never one of those kids. i always stressed he was never one of those kids. He was up dispite the chemo and meds and jmml. this time he was knocked down by it, all of us dragged down kicking and screaming. he had high fevers from the ara - c and needed tylenol and benadryl. He spent most of his day doped up and feeling like crap. He had bad diarrah all weekend and couldn't go far from his room because even his pullup wouldn't hold it. He is old enough to be embarrassed by accidents now. It makes him so small. I hate that. He should never have to be in diapers now, not at four.
I hear the voice of this disease in everyone around us. Their sympathetic smiles, their kind words and looks of sadness.
I see its ugly face in my own tired eyes and dark cirlces. In my husbands eyes where i see the mirror of my own fears. i see it in Aidan who doesn't get to be celebrated for who he is because is always so much going on. I hear it in my head, mocking me at night and sneaking up on me all day. Reminding me that it is here, lurking, waiting...
Its all around me now.

We are off to Calgary tomrrow for our BMT meeting. Hopefully Dr. Lewis will have some information for us that we can work with. Maybe there are other drugs we can try to hold this off just a little longer, if not I know transplant will be soon. No one seems to think that there is much hope. Why would anyone want to take away our hope? There is always HOPE. Always. Even in the mind and heart of a mother that has dragged her son through hell only to take him back there again. Sometimes I think I am being selfish by doing this to him. But he says he understands, that he wants to fight, wants to keep going even if it means more hospitals for a little while as long as he gets to come home and stay home afterwards. Stay home,play trains and watch tv. I have got to believe he knows what he is saying when he tells me to keep fighting for him.

there is a place i don't see this disease, a place it hasn't touched. It is in the smile in my son's eyes - on his face. The love in his heart and the life in his laughter. JMML hasn't been able to reach any of that.

Kristy

Sunday, November 30, 2003 7:18 PM CST

Quick note to say we are home!! conor is happily playing trains and watching tv. Just what he wants to be doing, where he wants to be doing it.
I'll update soon.
kristy

Wednesday, November 26, 2003 9:12 PM CST

I probaly shouldn't update now because I feel like crap, but I most likely won't get a chance for a few days. Conor's WBC jumped in the past 2 days from 9.1 on Monday to 85.9 today. So they are going to bring him into clinic tomrrow and retest and most likely admit him.
I am so pissed off at this damn disease. He looks so well, he's doing so well, but inside his body is waging a war. His blasts are at 8% the highest they have been that i can recall and most of his differntial is all over the place. Nothing makes much sense anymore.
I know back when we did his bone marrow aspiration last month the tests showed 100% conor cells, no aidan left and all of the cells had the trisomy 8 abnormality. prior to transplant chemo was able to get rid of a large percentage of that - he went from 84% to 14% but since relapse all his cells show the trisomy 8. I really don't know what that means, but i am sure it isn't good. Hopefully i'll have some answers about all that tomrrow.
We are supposed to go to Calgary on the 2nd of December to meet with the transplant team there. i don't know where all that stands now that Conor will most likely be admitted tomrrow for the weekend.
Looks like holding off transplant much longer isn't really an option and that really sucks.

Wednesday, November 26, 2003 9:12 PM CST

I probaly shouldn't update now because I feel like crap, but I most likely won't get a chance for a few days. Conor's WBC jumped in the past 2 days from 9.1 on Monday to 85.9 today. So they are going to bring him into clinic tomrrow and retest and most likely admit him.
I am so pissed off at this damn disease. He looks so well, he's doing so well, but inside his body is waging a war. His blasts are at 8% the highest they have been that i can recall and most of his differntial is all over the place. Nothing makes much sense anymore.
I know back when we did his bone marrow aspiration last month the tests showed 100% conor cells, no aidan left and all of the cells had the trisomy 8 abnormality. prior to transplant chemo was able to get rid of a large percentage of that - he went from 84% to 14% but since relapse all his cells show the trisomy 8. I really don't know what that means, but i am sure it isn't good. Hopefully i'll have some answers about all that tomrrow.
We are supposed to go to Calgary on the 2nd of December to meet with the transplant team there. i don't know where all that stands now that Conor will most likely be admitted tomrrow for the weekend.
Looks like holding off transplant much longer isn't really an option and that really sucks.

Tuesday, November 25, 2003 8:31 PM CST

********** NEWS FLASH **********

Bluebell has been found! He was spotted all over the world- thank you to everyone who emailed me about his whereabouts. He finally stopped his travels in St. John's Newfoundland where he was seen by a family friend ( in a hobby shop!!)and immediately told of our search for him. He quickly turned around and headed back home. He is on his way west and should arrive here any day!! Apparenlty he wanted to see the Sea ( or George Street!?!), and bring a little piece of the Rock back for Conor!! I can't wait to hear all he's been up to!

Thanks everyone, I hadn't realized this would turn into the international search that it did. I am amazed by the amount of people who care so much about my little boy and his happiness. Thank you.



Kristy

Sunday, November 23, 2003 11:03 PM CST

Darren is down in the basement right now digging through boxes looking for a train of Conor's. Conor has ALOT of trains, but not too long ago, he noticed - and believe me - he knows right away when a train is missing - that he hadn't seen Bluebell in awhile. Now Bluebell isn't a wooden thomas train, Bluebell is one of the ERTL trains (I don't know what that is exactly) but is still part of the thomas craze. I believe he may even be discontinued. Anyway, Conor was a little unsure of Bluebell because Bluebell didn't have a face, unlike all or at least most the other engines. It is rare for an engine to have a name and not a face...but over time conor came to love Bluebell very much, perhaps because Bluebell was so differnt from the other trains. But now Bluebell has gone missing. Or as we told Conor, just gone on vacation for awhile. See not too long ago - gee I guess it was awhile ago - two years ago this christmas, Conor got Lady but lost her the same day. We spent weeks looking, gave her up for lost, only to buy another and she suddenly turned up at my cousin's house where we had christmas dinner. Similar story with Duncan. We lost him, quite soon after he joined our family only to disappear somewhere around Easter. A few months later Darren was bringing boxes to the recycling depot and he found Duncan sitting at the bottom of a box. And the infamous Rusty that went missing while we were on a hospital stay, only to turn up right back at the hospital again, well relaxed and tanned after a week long vacation...so we are used to trains coming and going and taking little vacations. Conor was starting to forget or at least not mention Bluebell's extended absence until one day we opened a magazine and there inside in an ad for Auto insurance was BLUEBELL! He had gone on vacation! Only it was a working vacation, earning money (perhaps for a new face?) as a print ad model. Conor was beside himself! He even spent a few nights with that picture in his bed and carried it around with him, wondering just where Bluebell had wondered off to and when he would return home.
So that brings us to now, searching ebay for a resonable priced Bluebell (there isn't one!) and Darren searching despeartley through boxes in the basement. Bluebell, its time to come home.......

Friday, November 21, 2003 4:05 PM CST

Conor is playing right now with three of his friends, Katie, Ali, and Kayla. They are having so much fun. I have been catching up on some emails and the caringbridge sites doing laundry and some tidying up. It all feels so normal. And suddenly that made me very very sad.
Its not normal. Nothing about this is normal. Especially when I have to jump up and run into the other room and tell the kids to stop jumping or running or playing on the stairs. I am not doing it because they are being noisy or bothering me, quite the oppisite. I do it because Conor's platelets are so low, I am afraid he'll get really hurt.
I just want to scream at how unfair this all his. For Conor. Just when he is playing and having fun I have to step in and remind him that he isn't like other kids, remind him he's sick. I hate that.
The other day we drove by Chuck E. Cheese's on the way home. It is new to Edmonton and the parking lot was full and you could see inside the window at all the kids running around playing, have fun just doing what kids do. I wanted to stop the van, open the door and tell conor and aidan to run in before I had a chance to stop them. I wanted to yell at them "Run, run be kids, have fun, don't worry about germs or being sick or what you eat... run, play, scream, yell, jump around, PLAY, PLAY, PLAY. Be kids, have FUN. Of course that didn't happen.
I know we do all we can for Conor, but it saddens me that the most exciting place he gets to play these days is the hospital playroom and that aidan knows how to use everything in the nurses cart..blood pressure, themometre, and pulse...
I find comfort in that they don't really know any differnt. But sometimes he remembers how it used to be and he'll say "remember when we went skating?" or "when I was little I used to go swimming, I can do that someday right mom?" or "when I am better can we go to the library again?" Part of me wants to say the hell with it all and start doing all those things with him, but if he ever got sick I would never forgive myself.
Gosh, I hadn't meant for this to turn out so depressing. I'm gonna go hug my kids...
Kristy

Tuesday, November 18, 2003 8:49 AM CST

Just when I think Conor has done it all to surpirse me, last night he blew me away! We were sitting at the table getting ready to take some medicines and I wrote the numbers 1-5 on a piece of paper and told him to circle each number for each medicine he took. He put one medicine in his mouth and cirlced the number one. Then he proceeded to write the number one. After that he continued and copied what I wrote 1-2-3-4-5. Impressive?! Well them he asked me what came after 5 so I wrote 5-10 on the page and he quickly did the same! I could see his little mind working a he looked at what I wrote and and wrote the numbers himself.
So I wrote MOM he quciky wrote MOM too. We ran in the other room to show darren who was very impressed too, and said "well what about dad?" so I wrote DAD and Conor wrote it as well! Then he went one step further and wrote DADA (all on his own!) and said "dada".
He did all this on his own! I am so proud of him. When we were in Calgary he was getting ready to attend a preschool for immunesuppressed kids and I was so excited for him. Of course now that we are home, that isn't an option, and I really wish he could do something like that. He is obviously so ready to learn. I have said that I was going to start 'school' with him at home, but never did do it. I just didn't know where to start, how to organize it or structure it, but I see now, its not a matter of any of that, its just sitting down and guiding him. I have some preschool workbooks that I will get out and start on with him today.

I am always so worried he will get behind on everything, but he seems to be pretty on target with his peers on alot of things. One thing is his behaviour I know that! I spoke with some members of my mother's group whos kids are going through the freak out tantrum stage and I was so comforted by the fact that 1. I am not the only mother whose child is afflicted by this jekyll and hyde syndrome and 2. HE IS A NORMAL 4 YEAR OLD!! After all he has been through, that is truely amazing and makes me so happy.

Aidan is also a little wonder, building a bigger vocabulary each day. His words are Dog, woof, fish, cheese, good, juice, walk, dada, mama, mom, what's that?, dora, bob the builder, twickle twinkle, duck, quack, and more. He is also enjoying coloring and scribbling on paper, himself and the windows! He is running everywhere and loves to climb on everything. He climbs up on the kitchen chair, then the table, waits for me to see him then starts dancing - what an entertainer! The funniest thing ( I think) that aidan does, is run into the bathroom, take off his diaper, stand by the toliet and pee on the floor! He obviously can't reach the toliet and tries anyway. Afterwards he throws a piece of toliet paper in the toliet and flushes it. He is obsessed with the toilet. He has pretty much toilet trained (toilet learned?) himself but isn't able to reach it and refuses to use the potty. Its messy, but funny!

Yesterday we came home from the hospital( more on that in a bit) and there was a package waiting for the boys. It was full of toys and stickers for the boys and they had so much fun opening it and playing with them. It was from the Cole family. Thank you so much Laura, Jack, Cameron and Angel Colby!! Thanks for thinking of my boys and your beautiful letter-I could feel your understanding, love and support in your words and I was very touched. Cameron you are amazing to think of all those great toys. And I agree kids DO need toys ALL THE TIME, not just on their birthdays! Thank you.

That package got me to thinking about all the wonderful people we have met on this journey. And by met, I mean, people that have touched our lives in so many ways and many of whom we have never met!! We jave recieved so many gifts and cards and thoughtful gestures that it has just overwhelmed us. Toys and letters for the boys, money and gifts certificates that have gotten us through the past year and then some...as I have said before, I don't consider anyone a stranger anymore! In the beginning when conor was first diagnosed and then again when we went to Calgary, things came pouring in so fast, daily that there was no way I could keep up and and respond to everyone. I put all the info in a box and promised my self when this was all over THEN I would sit down and write my thank you notes. I tried to say thank you to as many as I could via email or on the site, but the truth is it was impossible to find the time to do so. We were just getting settled back in at home, making our home, home again after being away for so long, trying to make it the perfect place for our boys to spend time and keep it fun, safe and never boring and all our time was wrapped up in that and them. Then relapse happened. For those of you that have been there, you that that is a hell worse than the original diagnosis. At diagnosis, you are given this wonderful gift along with it, this ability to function and cope just drift on auto pilot because of the shock and disbief and not knowing what to expect. With relapse however, that fog isn't there. You KNOW what lies ahead and your hope is eaten away at and trying to be taken from you. People shut up, pull away and feel sorry for you and just stay quiet. If not they are full of sympathies as if your child has already died. People are suffering the same shock as we were, and like us, knew the road to come and just didn't know what to say or do. Slowly though, people came around and cards and letters and gifts for the boys started to trickle in. Eventually it turned into a nice flow of constant support from so many, from all over the world! Just look at conor's guest book. There is an entry from just about everywhere. A school in St. John's recently set out to send conor some cards and letters that turned into a HUGE box of cards, letters, stickers, toys, and trains! that brought so much fun to Conor's day. It was so heartwarming to see kids reach out to another. Just like the kids in the shcools here in wetaskiwin when conor went to transplant, there were BOXES of get well messages for him. And the train company that sent conor a box of train stuff after they offered him trip, but he couldn't go because he got so sick. And the other train company that keeps asking when we are going to call and go for a ride... I feel so badly that we never did the replies we intended. Conor sat down the other day and asked me to make cards with him 'for all the nice people who sent him stuff'. We started to, and we will continue to. Our days are never noraml, are days are far from routine or sane. Anything could happen and we never know where we will be from one day (minute!) to the next. As this disease takes us deeper and deeper into its murky depths it is so comforting to have that contact with the outside world to make us feel like we are not forgotten. Our days are filled with worry and concern over so much. Over Conor, over Aidan, over treatments, over money, over our lives, our home and over the future. Please, please know that your thoughtfullness and generosity have made this extremely difficult and painful time much more bearable for our entire family. I am sorry I didn't get out all those thank you's that are so deserved, and I know your gestures are not made looking for recognition but thank you from all of us anyway!

Ok, on with the update! Conor woke up yesterday with a really bad bruise on his arm. Long story involving Darren, Aidan, Conor, Elvis and dancing! In any case, Conor needed platelets so off we went to Edmonton. His platelets were oredered without even getting bloodwork first because it was obvious from the nasty bruise that they were very low. After he got platelets we continued home. The hospital called with his blood work, his platlets had been 13. He can't seem to make them and that scares me so much. It seems he needs them more and more. His hgb is still holding at 85 and hopefully he'll get that up on his own soon. I asked about being a platelet donor for conor and Clare (one of the nurses) told me they don't usually like parents to do so because of the time involved, it can take about 3 hours. Sounds like a vacation to me! Imagine three hours to myself? With a book? Unimaginable almost. And I'd be doing something for conor. I will call the bloodbank, and in reality I doubt it is something that will happen, due to conor's requirements and how often he needs them and how often I can donate...but its something I will check into. Imagine 3 hours...I don't know if I could make myself stay away for that long...
Kristy

Saturday, November 15, 2003 10:08 PM CST

Just a quick note to say the boys are fine. All the tests showed up negative. Intially we thought it might be german measles - or worse, measles. But we ruled all that out, along with at whole host of other viruses. So who knows what it was, the main thing is Aidan is fine and Conor is fine, and I am so glad! I got all kinds of grief over the boys not being immunized, and as it turns out, conor has immunity for all the stuff they tested anyway! I am not sure if it was from the extended breastfeeding or previous exposure, but the main thing is, now I know he does carry some immunity to some of the nasty things, so that is good.
I have to rethink the whole immunization thing now and get certain ones for Aidan to protect Conor. This disease keeps making me go agaist so much of what I believe in...anyway, I will do what is nessecary to protect both my kids. I had planned on immunizing both of them eventually, with seperated vaccines, but I never got the chance to do that with conor as he was diagnosed and well, you all know that story. With Aidan, it really didn't occur to me to do anything differntly with him then I did Conor. In any case, Aidan will get the required vaccines for the ones that are most dangerous to Conor - and I'll just have to deal with it. HOw the hell one of them would pick up anything is beyond me, we go no where and hardly see anyone execpt the hospital. But I guess that isn't exactly a safe place to hang out, now is it?

Conor's last chemo stay went well. The first night was a little crazy. Apparently his doctor was unaware we stopped the accutane and had written orders for it, along with benadryl and tyenol to be given around the clock. The nurse wasn't allowed to change any of those orders without the dr.'s permission so late saturday night darren was on the phone with the doctor. We got it all straightened out eventually. The bottom line on the accutane was that his doctor (or whomever) didn't bother to read the forms they give us each time we visit clinic and no one knew that the accutane was stopped. Crazy. The benadryl and tylenol were preventative which we refused. And said we would give them as needed when needed. Turns out conor only needed them the second night, he gets fevers from the ara-c and these stop that. We are just trying to avoid medication just for the hell of it. Too often we just went along treating side effects and side effects til conor was full of (unessecary) meds.

He had a rough night and day after the first round of chemo and stayed in bed pretty much all sunday. He woke in a good mood but quickly went down hill when he was told he couldn't be taken of the machine. Dr. Desi wanted to keep him hydrated b/c his wbc was so high going in, he wanted to make sure that his kidneys could flush out everything. Conor was pretty upset that he stayed in bed and watched tv all day. Aidan was miserable with a fever and swollen gums and 5 teeth peaking through so it was not a fun day! Conor has settled right back in, getting very close to the nurses and being very affectionate, giving hugs to everyone. On nurse was very touched that he let her do evetytihg without a fight and even asked her to play and help him go to the bathroom. Conor just doesn't do that for everyone! I told her she was one of the chose few!

Conor's counts dropped and dropped fast once the chemo stated, he went from 103 on friday, and we rechecked before we stared chemo, his wbc was still 94. So we went ahead with chemo. On sunday his wbc was 60 and when we checked on monday it was 34. We debated a third round and decided to wait until late afternoon, do another blood draw and then see where things stood. I am so glad we did! His counts that morning, drawn at 6 am were wbc 34, hgb 82, and platelets 26. We decided to do a platelet transfusion and I asked for the blood as well b/c his hgb was so low. Normally they wait until its 80 or under. He got his platelets at 3, and we took blood immediately after, just before he got his blood. His wbc was 27, his platelets rose to 70 (would've been higher if I could get him single donor- the doc tried but was told that until he has a documented reaction or doesn't get ANY rise he's not a priority!) but the scary thing about the counts was his hgb, it had dropped to 69! which was incredible because he was up running around and playing. He said he felt tired, but he had more energy then the day before! But he got his blood, his platelets and we went home. We checked his counts at the hospital on wednesday ( tuesday aidan woke with the rash and we had to go to the hospital on wed for tests for that) his platelets were 33 and hgb 103. No transfusion was needed. But by yesterday his platelets dropped to 7. We rushed to Edmonton for platelets. I sure do wish he would make some of his own.

It was great to be home, I felt so bad all weekend leaving aidan while he was feeling sick. what a horrible position to be in, deciding which child needs me more. I know aidan was in good hands with darren, he couldn't get any more love or attention or care, the problem is darren doesn't have breasts! I should've spent the weekend snuggled in bed with Aidan letting him nurse when he wanted and needed...I hate that i couldn't be there for him. but when I got home Monday that is what we did. We have been trying to night wean him for some time and we were almost there, but now, I am right back to letting him nurse all night if he wants. I am not sure if its for him or me right now,but we both need it. I had been sleeping in the spare room with conor, now aidan is in there too, there just isn't enough room for darren. I sleep better in that room . It faces east and I feel get a better sleep facing that way for some reason. Plus, I sleep on the futon and nothing compares to that. I keep thinking if we had a king size futon we could all sleep together and it would be really cool because the room is so small it would take up the entire width of the room and be wall to wall bed! Darren tried a few times to sleep in there with us, but didn't find curled up at the end of the bed too comfy. both aidan and conor tend to sleep sideways and not leave much room. I usually end up hanging off the bed! I sometimes think back to my single days, when I would make my bed, tuck all the blankets in real tight, fluff all my pillows, and crawl into the middle of the bed all snug with my book and hot cup of tea and my cat alseep on the pillow next to me. I'd fall asleep right in the middle of the bed, lots of room if I wanted it, but the middle was just so comfy. I'd wake up, just where I fell asleep. That was nice. But even nicer still is clinging to the bed, praying despeartly I don't fall off, fighting for covers, fighting for a pillow, with little bare legs wrapped around mine, little hands reaching for me in the middle of the night, warm arms and sweet baby breath in my face. Waking up with cuddles and kisses and occasionally, a bed soaked in pee. Now that is nice.
Kristy

Wednesday, November 12, 2003 10:26 PM CST

I know I promised a long detailed update, and you will get it, just not tonight! So here's a quick one. There has been lots going on, Aidan has been sick - waking up yesterday with a rash and we aren't sure what it is. So we spent today in the hospital so both boys could get tested for viruses etc. Because if aidan has it, chances are conor will and we need to know if its something he needs to get anitbodies for. Like we need more to worry about...

Aidan is feeling good today and I am really enjoying this stage with him. Tonight he helped me wash the dishes and that simple task became so much fun. It was a special time for me just to watch him splash water around and discover all the dishes one by one under the suds. He had almost as much fun as me. His favorite words right now are Good, MA MA,DA DA and Conor. He loves chees and just can't get enough of it! And whenever there is music playing, his arms are waving, his feet are moving and his head is swaying. Some days I lose my breath when see him and it hits me that he's mine!

And of course I have to share how wonderful Conor is too. How truley wondeful it is to see Conor being Conor. These past two days, he has been more Conor than I have seen in a long time. He is funny and clever and always making us laugh. He is putting together the craziest ideas and telling stories and using his imagination to the fullest. His eyes are clear and bright, his smile is infectious and his laugh could move mountains. He is full of love and affection and just a joy to be around. I feel like I found him all over again. Granted that other kid, the crazy one that is defiant and likes to run around naked and test me in every way is still around but just not so much :).

Right now my two adorable boys are cuddled up in bed together, snug and cozey under the duvet, overrun with teddy bears and sleeping peacefully with their arms around each other. I love so much to see that at the end of the day.

Kristy

Monday, November 10, 2003 10:20 PM CST

Home sweet home.
I'll post tomrrow. Conor is doing well. Aidan is feeling better. He's had a rough weekend with his teeth. High temps and hospital visits for him too. THAT was hard. But my boys are right now all tucked up in bed, sound asleep and I won't be far behind them.
Until tomrrow,
Kristy

Friday, November 7, 2003 11:31 PM CST

Aside from acting like a totally crazy kid yesterday, Conor has been doing really well. I don't know what got into him yesterday, but when I stopped by my Chiropractor's office with him to pick up some vitamins he went a little nuts. Running around the office, taking off his cloths, throwing toys on the floor, throwing water at me. It was crazy! He wouldn't listen to me, or anyone else in the office. I was officially *that mother* of the crazy child! Conor loves Tanya and loves to visit her at her office so when he started acting like that I was shocked. Normally he will run and gave her a big hug - which he did, but then he just became lunatic boy. For a brief moment he calmed down, and took a doll and played out that he was Dr. but then he discovered the automatic controls for the table and started moving it up and down. He just wouldn't calm down so I attempted to dress him and leave, but he wanted no part of that, and no part of anyone helping me, and when I picked him up, he took the (glass) bottle of vitamins and threw them on the floor. I was in shock...After I somehow managed to get him in the van, he just cried and cried saying how upset he was and that he couldn't help acting crazy, that he didn't know why he did it but he just couldn't stop. After we came home he apologized, told me he loved me and promised he would never do it again. Not a half hour later when my neighbour dropped by he started all over again. Tipping over TV trays, moving furniture, sitting on Aidan's head (its ok to laugh, silently was! I just could not figure out where this kid came from!). Anyway, you get the picture he was out of control. I knew why he was upset then, Nicholas was supposed to come by to play but ended up not being able too, so Conor was showing me how upset he was. I understand why he acted that way, but man, was it hard being the mom of *that kid*!
I spoke with a girlfriend later that night that also has a four year old, that assured me, those were my moments of normalcy!?! This is the normalcy I'd been craving? Wow, I'd got to be more careful of what I wish for! Hahaha. He's just getting so fed up of medicines, his diet change (no junk) and having no control of so much of his life that it’s no wonder he acts out from time to time. He's spent the past year getting what he wants, when he wants it, he is not used to hearing no anymore, but we just can't give in to everything anymore. The whole food thing is to help him get better, we aren't in the position to indulge his train obsession anymore, and we are so preoccupied trying to find ways to get him better that he is missing out on a lot. I think the birthday gift was a big wake up call for us. He wanted a truck. So we got him a truck. A bit expensive, yes. Extravagant, yes. We thought about waiting until Christmas but as I said before waiting to give him something he wants is just not something we can do. In the beginning we said this whole cancer thing wouldn't change the way we parented (is that even a word??) him. That we wouldn't spoil him. That we would treat him as normal as possible. Well you know what? That is a load of crap! How can you not? I used to try and look at the big picture, and think that when this was all over we'd have a spoiled kid on our hands and that wouldn't do, that we had to maintain as much normalcy as possible. HA! You see your child go through what Conor went through and he asks for a park in his back yard, you get it. He wants truck to drive you get it. He wants trains you get them. You find a way. Is he spoiled? Probably. Does he have more stuff than any other kid I know? Probably. Does it make him happy? Absolutely. Is he still an amazing, loving, affectionate child? Completely. Do I remember my point to all this? Absolutely not...
He was a crazy kid for a few hours. Today he was much better.
Which finally brings me to today. We had a clinic visit for blood work and check up after Tuesdays counts. As we were leaving the house I thought I should pack a bag just in case we had to stay. I heard that voice in my head say "you never know..." but I ignored that voice and off we went. Well his platelets were fine (as fine as 33 can be, fine means no transfusion today, they transfuse at 20 but normal is 140-450). But his WBC was the kicker. Take a guess. Go on. What do you think it is? It was 11.9 last Friday. 41.9 on Monday. 90 on Tuesday. And today? 103.0 - yes 103. I should've listened to that voice, it’s always right, which is why I try to ignore it more often than not I guess. They wanted to start chemo. We met with the doctor, discussed it and decided it was the best and ONLY way to go. We were very upset as we have been working so hard and Conor had been doing so well both Darren and I felt we have let Conor down somehow. That maybe we hadn't worked hard enough. I thought for sure his rise in WBC earlier the week was due to a flu or infection of some sort. But nothing has shown up, and he is looking well, acting well, just has an over the top WBC (and all the other signs of his disease showing up in the breakdown). Other than that he is fine. He wasn't even crazy today. Something (that voice again??) keeps telling me that it is something else, the way it jumped so high so fast, but that voice right now could be the voice of denial more than anything.
People tell me I am strong. I am amazing. I am courageous and incredible getting through all this without breaking down. That I keep going and going and going. That I don't give up, I am so positive. Well I am starting to think all that comes straight from keeping myself in this safe cocoon of denial. Trust me, it’s a nice place. I may appear to function normally and care for my children, fight for my child’s life and keep going through the motions day by day. But you know what? The day I wake up and realize that my son really does have cancer is the day I will most likely go crazy myself. I just really hope you don't find me at my chiropractors office running around with no cloths on throwing water and toys at people!
I keep thinking that there is something we are missing. There is a treatment, an approach we haven't found. There is a piece of the puzzle that is missing and when we find that, all will be well. The treatments, the chemo, the transplant are all too complex. There has to be something simpler. I keep saying I am not looking for a miracle cure - but I think I am. Some days I wish I'd paid more attention to the woman who called me and told me carrot juice was the answer. Just a few glasses a day and he'd be cured...hell I have a juicer.
Why does this particular cancer not respond to chemo like others? Why is a transplant necessary? Why couldn't he have gotten the 'good' leukemia? Stupid huh? A teenager we met at the hospital, who had ALL, finished his treatment in January, relapsed, went to transplant just after Conor, relapsed and died last week. He had the 'good' kind. See, none of these cancers are good. Kids with JMML make it when they aren't supposed to. Kids with cancers that are supposed to make it don't. There is no rhyme or reason and I want some one to give me one.
I know more about this disease than I know about myself. I have read everything online I could find. I have gotten journals from the library. I have read and read and read. Yet I can't find my answers. What is the key to unlock this? There is nothing any doctor, anyone has told me that didn’t already know. Maybe I should stop reading so I can believe his doctors know more than me, and I could trust them and put my faith in them? So I can pretend that they know what is best for my child? They may understand it all on a level I can't but I am just as knowledgeable about this as they are. I see the real JMML. The kids, the families the day to day of it. Not just the numbers, statistics and treatments. I live it with my child twenty-four hours a day. I don't get to walk away from it at 4pm each day or on long weekends or holidays or even when I go to the bathroom! Neither does Conor. It’s always there.
In the beginning, it was this unwelcome guest that showed up unannounced that we were hospitable to. We accepted it into our lives and lived with it thinking eventually it would go away again. After all it couldn't stay forever. But slowly it crept in, settled in more and more each day until this guest became head of our household and has taken over - it has taken over and tells us what to do and when to do it. Our lives now revolve around that.
I'm not down, I haven't given up, and I haven't given in. But I have accepted it just a little more and that scares me. As I said, I like denial very very much - but that is starting to wear thin.
Conor will be admitted tomorrow for Chemo. So pray, dance, think, hope, send positive vibes - do whatever it is you do and envision the outcome we all want from this. A kid that can just be a kid. A kid without cancer. Because he's funny and he's smart and he's so damn cute. And he's my son.
Kristy

Friday, November 7, 2003 7:59 AM CST

A conversation between Darren and Conor last night:

Conor: dad when I'm all better can I throw out all my medicines?

Darren: Sure, all of them. You can open up the garbage can and throw them all in!

Conor: I'm going to throw away all my trains too.

Darrren: why would you do that?

Conor: Because I'm going to grow up Dad, I won't need my trains!

Wednesday, November 5, 2003 11:23 PM CST

Conor is much better today. Whatever bug was working its way around him seems to be gone. I am curious to see what his counts will be on Friday. There is just so much going on with Conor that it is hard to know what is what. My anger and frustrations of the other day have to do with a lot of different things. Mainly that I want answers, and I want them now. I don't want to have to wait for 5 hours after his blood work to get results. It drives me crazy thinking about it sitting on a fax machine somewhere or on some one's desk waiting to be read. Now when we do his CBC in Wetaskiwin the nurse always calls us immediately and faxes a copy to Edmonton. I know what his counts are before Edmonton does. If there is something that requires explaining or if he needs blood products I am usually the one phoning the clinic to tell them that. I know there are other kids, other patients and that hospital staff is not there only for Conor and to answer my questions. And the truth is, even if that were the case - it still wouldn't be good enough for my child. Frustrations arise when I see something I have never seen before on his CBC and the clinic nurse says, "I don't know" and doesn’t bother to look for an explanation until we ask again. It bother me to no end because I WILL go look it up an end up finding something sinister and scary on the internet and spend hours or days worrying endlessly. When all the 'professionals' have to do is get back to us with answer within a reasonable time frame and ease our fears. We were in a panic on Monday. I woke up early, spent the morning baking bread (if anyone knows a good recipe and a way to perfect spelt bread - PLEASE let me know!! mine is coming out like a brick!!) anyway, I was making bricks, I mean bread and I was having a great morning. Just doing household stuff. Believe me, that routine that is so normal for some is a rare thing around here. Just the simple act of making bread and getting breakfast for the boys and doing laundry, doing normal things is not a common occurrence around here because there is always some where to be or something else that needs to be looked after. I don't even get time to play with kids the way I would like because I am always playing so many roles other than mommy. Anyway - it was a nice morning, Conor got up we got ready and drove to the hospital for blood work. We were out of there within a half hour. For those of you that don't know, we live about an hour from the hospital in Edmonton where Conor is treated. But our local hospital does his blood work from the ER. And his care there has been exceptional! The nurses all know him. The staff knows him. Everyone took the time to learn the procedures for the broviac draws, and those who didn't had no trouble coming in, saying they didn't know and ask to watch and learn. And everyone always thinks to ask if that is the way things are done and always include Conor and myself in everything. They aren't afraid to admit its something they aren't familiar with and have done everything they can to make sure that Conor is looked after. Everyone always takes the best care of Conor. So we do the counts there and the blood work is faxed to Edmonton. If he needs blood or platelets we have to go to Edmonton to get them because Conor has so many requirements for transfusion and reaction is a possibility (especially considering I still can't get him single donor platelets..). We usually go first thing in the morning so that if we do have to drive to Edmonton, we will have time before the clinic closes at three thirty (isn't it great how cancer keeps banking hours??). So if it takes two hours for the clinic to get back to me, chances are, we'll never make it to the city on time and we will be forced to wait another day to get transfused. It’s happened in the past that even with getting to the city early we've waited all day for platelets and ended up being transferred to another unit to get them. It’s a long hard day on Conor.I seem to just be babbling now, trying to justify my outburst. But honestly at the same time I don't feel the need to do so. There are problems with the system, sure. But a lot of it can be solved by basic caring and concern. Treat my child like you would want your child to be treated. That is all I ask.
Anyway, my point here was that the day started out great. I had planned on playing outside with the boys, organizing conor's room, maybe going to the library and just hanging out with my family, doing normal stuff. Instead, Darren and I spent a frustrating day waiting for phone calls, searching the internet, making phone calls, harrassing receptionists, and genarally doing just being preoccuppied with stuff other than what we wanted to be doing. We shouldn't have to deal with the added stresses, people should be trying to ease or stress, not add to it.

Our day on Tuesday went much smoother, despite Conor feeling so sick when he woke up. He was throwing up all morning; he had diahrrea and just felt miserable. We left for the hospital early because he was feeling so crappy. He fell asleep in the car and woke once to throw up. Once we got the hospital he got his platelets pretty much right away and we waited around for few hours so that we could make sure he was feeling better. The doctor examined him and wanted to get some cultures to rule out infections. He also wanted to run some hydration in case he was getting dehydrated. Soon after he got his platelets though, Conor was feeling much better and started eating and perking up. He was a different child than the one we went in with! We had packed our bags thinking we may have to stay but whatever had been going on with Conor wasn't getting the best of him. We left a short time later. On the way home we stopped to pick up Finding Nemo, came home and had a very nice family movie night. It is such a great movie.

There seems to be so much I have left out, it’s just so hard to include it all! The service on Sunday that was dedicated to Conor was beautiful. Reverend Lyn spoke so beautifully of Conor and how she felt conor's purpose here was to love and to show others how to love. I was very touched by that. Actually being there was a bit of a nightmare with the kids running around, making noise and just being kids. We couldn't send them to Sunday school because of the other kids, and we couldn't sit near anyone, so we sat in the balcony alone! It felt a bit odd, but we got through it and the boys didn't disrupt the service to badly I don't think. Carolyn spoke briefly to the church about Conor and his journey this past year. I am so very touched that she won't let anyone forget about Conor or our family and how she keeps finding ways to support us. Other than that we are all losing weight trying to adjust to the new diet we have started for Conor. No sugar, no wheat, no dairy, no soy, no junk, and mostly organic foods. It’s HARD to eat well. I usually break down a dive into my hidden stash of Haagen-Dazs once or twice a week, but in all we are doing ok. Conor has a whole new goal for getting better now. He says, "As soon as I am better I am going to eat sugar, lots of sugar. I am going to eat a whole bag of marshmallows...mmmmmmmm, DELICIOUS!" all the while licking his lips. It’s good he has a goal! He is adjusting well is suffering threw my baking attempts trying to perfect the perfect bread and the never ending quest for a cookie that tastes like a cookie and not (as Tanya put it) something handy to have around if you get lost in the woods while hiking. Cookies without sugar, eggs and butter that are actually edible are not easy to come by.We are coping. After all there are always vegan sugar free carob chips to snack on! They aren't all that bad.
Kristy

Monday, November 3, 2003 4:22 PM CST

Tuesday:

Conor is feeling much better today. We all are! He wasn't admitted, even though his WBC jumped to 90! Its most likely a flu or something of that nature. They did cultures anyway to check for infection.
We are home and tired. I'll post more tomrrow.
Thank you all for your kind words of support.
***********************************



You know what I am absolutely sick of? Hearing "I'm too busy" or "I don't know" or "we don't/didn't have time..." DON'T talk to me about NOT HAVING TIME! Our child has a potentially fatal disease and his caregivers DON'T HAVE TIME? What the hell is that all about?
I am so tired of being my son's Doctor and his nurse and a million other things. I just want to be his mother. Instead I spead my days analyzing blood counts and calling his doctors and nurses for answers. I ask questions that get no answers, I ask questions that they don't know answers to, and don't bother to find out. Instead they try to baffle me with big words and bullshit instead of trying to find out. You know what? that doesn't work on me! I know some big words too and I also have the sense to look up what I don't know! I may not always understand it, but I ALWAYS try to find answer.
Cono'r WBC count today is 41. Yes, 41. On Friday it was 11.9. What does that mean? Apparently he needs chemo. Easy answer. Easy way out. Well its NOT that simple. I mean he has things showing up in the Morphology of his CBC that I have never seen before and the clinic nurse dosen't know what it is or what it means. Perhaps he has some type of infection? Can we do cultures? what a good idea the nurse says..I suppose we can.
He has had diahrrea on and off since friday. He is complaining of stomach pain and he had a fever last night for a few hours. No one seems concerned. They automatically assume its something without bothering to look at anything else. WHY?
I have phone calls that go unreturned for days. I have a child with low (26) platelets that can't get transfused until late afternoon tomrrow afternoon because they are busy. Well if its that busy all the time can't something be done about it? The big picture I mean? If they are short staffed, or out of space or whatever then something has to be done! I hear it all the time from conor's doctors and nurses. No time, busy. My son has cancer. He is the one who doesn't have time for this bullshit. He needs care. He needs answers and he needs it right away. We as parents shouldn't have to feel as if we are harrassing his caregivers. We shouldn't have to feel that nothing is being done, that no one cares. It shouldn't be that way.
We are trying so hard to do what is best for our child. We are so involved in his care. We can't sit back and wait. Don't they see that? Conor doesn't have the gift of time right now. We are trying to get that for him. Don't they understand that. I have been fighting for him since day one, since the day he was diagnosed for TIME.
I want to spend my TIME with him. Not all day on the phone, on the computer looking for info, looking for treatment, looking for answers. I want to be doing so much more than that. But if I don't, if we don't, who will? Who will look out for him and make sure that every avenue, every nook, every cranny, every option have been explored for his best treatment? No one.
We are running out of time, out of patience out of money out of energy. We are doing everything we can. We are changing his diet, we are seeing other doctors, we are looking at alternative treatments, we are exploring other transplant protocols we are always, always looking for something and doing something other than just being his mom and dad.
Kristy

Sunday, November 2, 2003 9:57 AM CST

Conor wanted to let everyone know that today is his daddy's birthday!!
HAPPY BIRTHDAY DADDY
WE LOVE YOU
Love,
Kristy, Conor and Aidan xoxoxo


we don't have much planned for today just family fun stuff. We are attending a mass for conor this morning. THen we are coming home to make snow angels and send some balloons off to celebrate the couragous fight of Jared who grew his wings last week after a lengthly battle with JMML. We will be celebrating him, and all the other kids that have fought this horrible disease. His memorial is today and since we can't be there, we will have one of our own for him. Conor is looking forward to the snow angels!! The balloons were his idea :).

Conor is doing GREAT. His counts from Friday show a decreased wbc. Down to 11 from 15.4. His platelets are up slightly. I'll post a much more detailed updated later.

Have a great day!!
Kristy

Wednesday, October 29, 2003 9:29 AM CST

Yesterday went well. Conor's hgb had dropped to 82, so it was good we decided to transfuse blood. His platelets are still holding at 30. Actually, they went up to 31. His wbc is still holding at 15. His wbc is going sidewise, his blasts, nuets, lymph, monos, all sideways.. just that hgb and platelets that are creeping down. Why isn't he making enough of them?? Its not his spleen..he doesn't have one! (funny story there, on our last visit before his bma last week the doctor on service actually LOOKED for conor's spleen haha, seemed really concerned he couldn't find it until he happened to pull up conor's shirt and see the scar and realized he didn't have one! one of the DISADVANTAGES of having rotating oncologists..) Anyway, hopefully we will have some answers on that soon.
He had a good day in clinic. SUSAN was there and was his nurse. She gave him some bob the builder tattoos and another surprise. She arrarnged for a friend of hers to take Conor on some tractor rides!! His name is actually BOB so conor was thrilled he was going to meet bob the builder! After a LONG day of waiting (blood arrived on time, platelets took forever...some mix up some where...and still random donor - he'll continue to get random donor until he has a major reaction..)Anyway, after a long day of waiting, we headed out the site. In a blizzard! It was snowing like crazy. We were not prepared for that. I had to stop and buy conor gloves and a sweater etc. We got to the site and were met my Susan and her 3 beuatiful daughters!!Conor was absolutely THRILLED. Tractors, a work shop, beautiful girls, susan and oh yeah mom dad and aidan were there too! He braved the snow too ride on a big bobcat and move gavel around the yard. All the big stuff, tractors etc were futher away and hard to get to because of all wet mud and snow and it wouldn've been to dangerous to bring him on all that in those conditions. but he had so much fun. He even jumped off the bobcat and ran around the yard, climbed heaps of gravel and slid down on his butt! What fun for him. After we got a ride back to the shop in a VERY big truck and Conor sat in the van with all the pretty girls and sang songs for awhile. Bob gave conor a real bobcat (just miniture...I wonder if we add water will it grow big enough for us to level our yard? hmmm..I wonder??). He ljust loves it. It was a great day for him. Thank you BOB and SUSAN and girls. Conor said 'that was the most fun I ever had'.
Within a minute of driving home conor was fast asleep.
Kristy

Tuesday, October 28, 2003 8:10 AM CST

I love that everynight when Conor goes to bed, he won't settle in and go to sleep until he's hugged and kissed Aidan at least a hundred times.
And I love that each morning when Aidan wakes he won't get out of bed until he kisses Conor at least a hundred times.
I love that the other is the first person each of them reach for when they are hurt and I love that they can't begin or end the day without each other.
Throughout the day, is a differnt story however - Aidan wants what Conor has and Conor wants what Aidan has and they can't play with the same thing together! But at the end of the day, they know what is important. The love and the bond they share as brothers.

We are off to Edmonton again today. Conor just can't seem to make his platelets and his hemoglobin is slowly dropping. Actually both his platelets and his hgb are slowing creeping down. Its weird. His WBC is dropping which is good. But the others should be coming up, and they are not. He never had a problem with this before and no one on his team thought it was weird. Kept calling it 'recovering marrow' UGH. I HATE that term. Why they just can't say "I don't know" is beyond me. So after days of wondering, of unreturned calls, I was so mad. I finally called our transplant nurse in Calgary and heard all those things I needed to hear." Yes, its weird. No, it shouldn't be happening. Yes, we'll look into it. Yes, Dr. lewis is out of the office til wednesday, email him and I'll let him know so he can look into it. NO, you aren't crazy or neurotic or being a demanding. You are looking out for your child. " THANK YOU!!! conor's counts never flucuated. And their silence on it all made me think we weren't being told something important. Being left out of the loop, in the dark kept me thinking that they were deliberatly trying to hide somethng 'to protect us' or that they had just simply given up on conor and were going through the motions. After all - how can someone be 'too busy' to return the call of a parent who's child has cancer and is their patient? I am gettting more and more upset with the casual attitude.

Wish us luck today. They are going to give him platelets and blood ( which makes me think - would they be doing that if I hadn't hounded them???) because although he's not at the magic nubmers for transfusions, he's covered in bruises and is saying he is tired. Just saying it and thinking about it more than anything. he's still just as active. Well-not 100% conor active, so that is a concern.

In any case, I'll update more when I can. Have a great day everyone!

Kristy

Sunday, October 26, 2003 11:00 AM CST

I keep coming here to write something. I feel compelled to write about something. Exactly what I am not sure. There has been a huge change in me this past week or more. Something is happening and I can't put my finger on it quite yet. I feel more open, more honest and more accepting. I feel a buzz around me all the time, like I have finally tuned into something, and yet, not quite. I have a little more work to do. I feel at peace and calm, yet there is this strange feeling in my gut. There is something about to happen. Something big.
For a long time now I have been bothered my attachment to the other JMML kids and their families. I FEEL things that I should not, I feel things I don't want to. Alot of the times I KNOW things I shouldn't and honeslty I don't want to. It troubles me to no end because I see these things and feel these things so clearly for other children, yet when it comes to my own child I am blocked. I know what I want, what I hope for, what I FEAR. I get all that muddled up in my head and in my heart sometimes. FEAR blocks my insight into my own child and that is something I have to dig through. I have always based conor's treatment on what I felt was best, best for him. We made or choices not only on things we researched by also by what we felt. We have never looked back on those nor will we now. THere are more choices and decisions to be made and something is telling me that it will all happen soon.
Conor is so vibrant, so full of energy and life. He is giving off an energy that is unmistakable. You can feel the vibration in the room when he is near.
What does all this mean? I don't know. I do know that I see things on a differnt level than I used to. I hear things. I feel things. I know...
Kristy

Sunday, October 26, 2003 11:00 AM CST

I keep coming here to write something. I feel compelled to write about something. Exactly what I am not sure. There has been a huge change in me this past week or more. Something is happening and I can't put my finger on it quite yet. I feel more open, more honest and more accepting. I feel a buzz around me all the time, like I have finally tuned into something, and yet, not quite. I have a little more work to do. I feel at peace and calm, yet there is this strange feeling in my gut. There is something about to happen. Something big.
For a long time now I have been bothered my attachment to the other JMML kids and their families. I FEEL things that I should not, I feel things I don't want to. Alot of the times I KNOW things I shouldn't and honeslty I don't want to. It troubles me to no end because I see these things and feel these things so clearly for other children, yet when it comes to my own child I am blocked. I know what I want, what I hope for, what I FEAR. I get all that muddled up in my head and in my heart sometimes. FEAR blocks my insight into my own child and that is something I have to dig through. I have always based conor's treatment on what I felt was best, best for him. We made or choices not only on things we researched by also by what we felt. We have never looked back on those nor will we now. THere are more choices and decisions to be made and something is telling me that it will all happen soon.
Conor is so vibrant, so full of energy and life. He is giving off an energy that is unmistakable. You can feel the vibration in the room when he is near.
What does all this mean? I don't know. I do know that I see things on a differnt level than I used to. I hear things. I feel things. I know...
Kristy

Saturday, October 25, 2003 12:15 AM CDT

Please remember Jay and his family today. Please remember YOUR family today. Celebrate your children. Celebrate that you can hold them in your arms...

http://www.caringbridge.org/ca/jaydog/

Wednesday, October 22, 2003 8:49 PM CDT

Quick note just to let you know we are not in hospital!! Conor's counts actually went DOWN! His wbc dropped by 12. THat hasn't happened before. So he wasn't admitted for chemo as we thought may happen. I am so thrilled with that :).

Bone scan went well. He also had a bma and tests will be sent away for chimerism studies to see if there are any aidan cells growing. THey are thinking maybe another DLI if a percentage is high enough. I am having a hard time figuring out how there could be any aidan cells, let alone a large percentage after chemo, but apparently it COULD happen. I am anxious to see what those tests show. That could be a good thing. I should know by now though not to be surprised by anything this disease throws our way. They are also looking for that trisomy 8 to see if the chemo had any effect on those cells. Hopefully these tests won't take too long, but if we go on past experience, it will probally be weeks before we hear anything.
Despite being dragged out of bed at 6 am to drive to Edmonton, Conor is feeling great, Looking great and is just great all around!
There is lots of talk about talking about a plan, but so far no plan yet. We are just basically watching and waiting for Conor to lead us.
Kristy

Tuesday, October 21, 2003 10:18 PM CDT

Hi all,
Thank you so much for all your wonderful birthday wishes and cards and presents. Conor had great delight in opening them all and reading his guest book. He was absolutely beside himself when a present arrived yesterday - it was a BOXED set of THOMAS. Man was he excited! It was made more excited by the fact one of his friends was here to witness it and was totally in awe of the gift. Many thanks to Wilson and Barbara for the wondeful gift.
Bina - your package came to! thank you. Conor absolutley LOVES the THomas chair. He's been lounging it watching movies. Thank you.
Pop - your card came and Conor wants you to know he bought "caroline the car" with the money. thank you.
These are fresh in my mind because they came today. I know I haven't mentioned everyone, but please know just how much your thoughtfulness means to us. We love to see Conor smile. He loves the post cards and letters just as much as the gifts. Although, since his birthday he has discovered some cards contain money and that has him double checking envelops! Funny boy :).
Quick update on the rest of the stuff going on. He feels great, looks great and has been having lots of fun. He will go in very early tomrrow for a bone scan and bone marrow aspiration. Depending on his counts, he may or may not be admitted for chemo. His wbc on Monday was 34. If it continues to stay in that range we will just watch and treat when he becomes symptomatic or his wbc rises dramically. Please, hope along with us that he remains stable and we can hold off on the chemo. He is feeling great and I would like to keep it that way.
I'll update more when I can.

please remember Jay and his family:
www. caringbride.org/ca/jaydog
Jay is growing his wings after a lengthly fight with JMML. he is an amazing boy. They are an amazing family.

If you would like to visit other kids sites visit www.caringbridge.org/pa/colby
there are lots of links there to other kids with JMML. All the families can use the support, love and encouragement. Guest book entries are a souce of great comfort for us.

Colby lost his battle with JMML a few months ago and he is someone Conor considers one of HIS angels looking after him. In fact on his birthday he took two of his best balloons and went outside to send them to "his angel Colby". though we've never met, I feel him around us all the time.

Kristy

Sunday, October 19, 2003 9:06 AM CDT

Thank you everyone for the birthday wishes. Conor had an AMAZING day. When he got up in the morning we had the house all decorated with thomas ballons, streamers and birthday signs. He walked into a the livngroom filled with presents. Mainly his chevy silveraldo! lol and Aidan's race car. He was beside himself. He was actually shaking with excitement when he sat in it. I know it seems extravagant, and exacatly what we said we wouldn't do, spoil him and give him everything a kid could ever want, but man, how can we not?? In light of all the sadness we see daily, all the children we hold close that are fighting this disease everyday, especially the ones that are losing, or have lost their battle. How can we not? I am so glad we got it for him. He spent the day drivng around town, finding hills to drive up and down and just having a blast! That truck can really go! He was tearing up the town off roading! It even climbs hills! And is powerful enough to run over rocks, tree stumps and even mommies - if they don't move fast enough.
He was the most popular boy in wetaskiwin yesterday. First thing he did was drive down the street and knock on doors to show it off. He lucked in with our closest neighbour, his friend Cassie. She had a sleepover the night before with her friends and there were about 6 girls there! He promptly took turns giving them a ride and they were fighting over who got to go next! I never thought I'd see my son cruisin for chicks before he was 16, but a New Truck can certainly turn heads. What a beautiful day for him. He was grinning from ear to ear and just beaming with joy and excitement. Even a few boys were chasing after him for rides and EVERY kid said the same thing. "I wish I had one of those!!" In a world where we no nothing is certain, not even our tomrrows, Conor having his every heart's desire is something we can't say no to. He had the most wonderful birthdday.
His Nanny and Poppy are here and also helped shower him with presents. He got a drum set. Gotta love THAT gift! Nothing like grandparents to give gifts that make lots of noise! He also a got a train from Aidan, a THomas play hut from his Nanny and Keith, oh gosh, I can't start naming names, I might leave someone out! Lets just say he had a wonderful day and thank you ALL for your messages, cards and phone calls. Thank you for celebrating Conor with us.
Oh and Aidan, he got a little race car too. Without Aidan, conor would've never made it to this birthday. Yesterday was a celebration of a brother's love and courage too. Aidan is a little more reserved about his race car though .He is quite puzzled by the fact that it moves and he doesn't have to push it with his feet! When he presses the go button he looks quite shocked when it actually moves! But give him time, he'll soon be cruisin for girls like his big brother:).
Now for all the medical garbage. As you can tell, conor is doing well. Really well, if you don't count that nasty little cancer he has! I mean, he if full of energy, and is just having a ball playing wiht his nanny and poppy. He has then worn out and they are in bed before he is! On Thursday we went to clinic because he needed platelets. His wbc had risen quite a bit and we are waiting to see just where that will go. If it continues to rise then he will be in for chemo next thursday. Lets hope and pray that it stablizes and we can put that off as long as possible. the more time between chemo and second transplant, the better. As hard as it is to drag this on, sadly this is our world now and we have to get used to the uncertainties, and not knowing what the next day will bring. We can only make the best of each and every day and hope that things move in the right direction.
Again, thank you all for your love and support.
kristy

Saturday, October 18, 2003 1:11 AM CDT

Conor,

My son. My beautiful, beautiful son. I can’t believe another year has past.
It’s been a long difficult year,
But you made it. You overcame so much.
You fought so hard, so very hard to be here.
A year ago I promised you we would be someplace so much different than we were then.
I am so sorry that you are right back there again.
I am sorry that life has handed you this
That instead of starting preschool and jumping in puddles you have been fighting for your life.
I am sorry that you have to be so much older than your 4 years.
Your wisdom, your caring, you love and understanding surpass that of someone beyond your years.
You know too much, have seen too much, and have been through too much.
Each day your amazing ability to take what comes your way and make the best of it makes me proud to call you my son.
You handle each hurdle, each bump, each set back with grace.
And you celebrate each and every victory, no matter how small it may appear because you know its just one more step in the right direction.
Your resilience, your determination and your will to live life- your life, to the fullest is inspiring all that know you.
Your laughter, your infectious smile, your humour never fails to melt my heart.
You appreciation for all things around you, and your awe in just simply observing the world has taught me so much.
You have taught me the meaning of strength and courage and shown me beauty in things I never knew existed.
You have taught me love is greater and greater the more you give. And that the more you give the more you get in return.
You have shown me who I am. You have defined me, you have made my purpose in life clear – to be a mother.
You have given me the greatest of gifts by allowing me to call you my son.
You are my joy and inspiration.
On today, your birthday, I want to thank you for being you and for never giving up and for allowing me each and every day I have with you.
I am looking forward and I see many more birthdays and many more joys. I look at you and I see beauty.

Happy Birthday Conor,
I love you.

Saturday, October 18, 2003 1:11 AM CDT

Conor,

My son. My beautiful, beautiful son. I can’t believe another year has past.
It’s been a long difficult year,
But you made it. You overcame so much.
You fought so hard, so very hard to be here.
A year ago I promised you we would be someplace so much different than we were then.
I am so sorry that you are right back there again.
I am sorry that life has handed you this
That instead of starting preschool and jumping in puddles you have been fighting for your life.
I am sorry that you have to be so much older than your 4 years.
Your wisdom, your caring, you love and understanding surpass that of someone beyond your years.
You know too much, have seen too much, and have been through too much.
Each day your amazing ability to take what comes your way and make the best of it makes me proud to call you my son.
You handle each hurdle, each bump, each set back with grace.
And you celebrate each and every victory, no matter how small it may appear because you know its just one more step in the right direction.
Your resilience, your determination and your will to live life- your life, to the fullest is inspiring all that know you.
Your laughter, your infectious smile, your humour never fails to melt my heart.
You appreciation for all things around you, and your awe in just simply observing the world has taught me so much.
You have taught me the meaning of strength and courage and shown me beauty in things I never knew existed.
You have taught me love is greater and greater the more you give. And that the more you give the more you get in return.
You have shown me who I am. You have defined me, you have made my purpose in life clear – to be a mother.
You have given me the greatest of gifts by allowing me to call you my son.
You are my joy and inspiration.
On today, your birthday, I want to thank you for being you and for never giving up and for allowing me each and every day I have with you.
I am looking forward and I see many more birthdays and many more joys. I look at you and I see beauty.

Happy Birthday Conor,
I love you.

Thursday, October 16, 2003 8:14 AM CDT

Just a quick note now, I'll update more this afternoon. We are off to Edmonton today for a clinic visit. Conor's counts yesterday are up. Way up. Not good. He also needs platelets again. He can seem to hold on to them like he used to. Hopefully they'll give him the single donor again, he retains those much better than the random donor ones...but for some reason that's not good enough reason to only be given single donor. Another issue, we shouldn't have to fight with but what's one more?
His wbc has risin to 21.8 from 6 just three days ago. Not sure what is in store right now, and I will let you know as soon as we do. I am expecting to make plans for further chemo and transplant in the very near future.
When I took him yesterday for his blood draw here in Wetaskiwin, he was running all over the hospital, playing race - I was Bertie, he was Thomas - I couldn't keep him still. He was so full of energy. He helped his nurse with his flushes and told her how much blood to take. Later that evening when I stopped by the hospital to pick up his count sheet his nurse couldn't believe what she was seeing on the paper. With his counts the way they were, he is obviously a sick boy but he in no way looks it, acts it, or shows it. I think that is a very good sign. He is not giving up or giving in to this and neither are we. I gain my strength from him and seeing how much life and fight he has in him, gives me that much more.
We had a great walk to the library yesterday. Its been a very long time since I sat in the libary with conor. We used to go nearly every day. Boy- did he enjoy himself yesterday! He must've checked out every train book in the kids section. He has his own library card now (that he keeps in his own wallet with his money) and was so pleased to check out his own books. I was completely overcome with emotion sitting in the library. Seeing aidan on the floor throwing books around totally enthralled that there were so many, and all so differnt. Seeing Conor find another train book and rush to the table to read it. Seeing them sit together and Conor showing aidan how to read the book and where to find more. It was so normal, so what our lives should be, that it was almost hard to watch. But it was beautiful to be there.
We left the library and were on our way to the park when we found out his counts and that his platelets were at 19 , and decided the playground was not an ideal place for kid with no platelets and just came home. It was too late to get the platelets for last night so we are on our way first thing this morning. Though little monkey boy was up til midnight, so I can't imagine it being a pleasant morning. He should really drink coffee in the mornings!
We spent the evening coloring and then at around 8 when it was dark we all went outside for a walk in the 'spooky scary dark'. That was so much fun! we played spotlight and chase. We went to the school yard and just ran around in circles and acted crazy. Aidan was in awe of it all. Being out in the night, his little eyes were just lit up the entire time. He looked so cute running after conor holding onto the flashlight that was almost as big as him. Coming home we played in the yard on the slide and swings. It was a beautiful fall night, cold and crisp with the leaves making just the right crunchy sound underfoot. Perfect night to hear 'ghosts' and 'spooky scary' monsters lurking around the other side of the house. The best part though was just seeing Conor smile and laugh and chug like a train everywhere we went. To see him so thrilled to be out in the night, doing something fun. So often we just go through the routine of eating supper, watching tv or just hanging out. Going out last night was so refreshing for all of us.Conor would easily spend everyday, all day just roaming around, exploring and acting like a train. He sees the importance in the little things in life and gives that gift to those around him.

So much for my quick note Please keep conor close today, there is alot going on right now and he could use your extra thoughts and prayers. ANd if you can, go chug like a train around the block, just for the fun of it :).
Kristy

Tuesday, October 14, 2003 9:32 AM CDT

Conor is doing well. His counts are starting to rise as of yesterday, I am not sure what all that means.His wbc was .1 and his neurtophils,lymph and monos were 0 on thursday. Yesterday they were all up considerbily. We should speak to his doctors today. I'll have more info then.
My real reason for this update is to ask you to visit Jay's webpage:
http://www.caringbridge.org/ca/jaydog/
He, and his family could use your prayers and support right now.
Kristy

Saturday, October 11, 2003 1:55 AM CDT

I was putting conor to bed tonight and when I lay down with him we were talking and playing. Out of no where he says to me: "mom- why do we live in this world?" I had no answer for him............

Wednesday, October 8, 2003 9:31 AM CDT

Hi everyone. Just wanted to post a quick update to say things are going well and Conor is enjoying being at home. so much so that when I asked him if he wanted to go somewhere on a trip he replied "no mom, I just want to be in wetaskiwin with my swing set and my trains". i thought maybe he'd want to go on his wish trip now to disney or to see Thomas, but no, he just wants to be home. I can understand that after the year he has had though.
He is just happy here.
Makes me so glad we bought that swingset play fort. We had debated whether or not it was a good idea given the cost but he loves it. The other night we sat outside in the dark in it, looking at the moon and stars and that was a very special moment. He looked at me and said "mom, do you know the earth spins around the moon?" I was so surprised and said "wow conor that is great you know that,who told you that?" to which he replied "don't you remember ANYTHING mom? you did!" and he laughed at me! Little stinker. though I think he got it off blues clues.
Thank you everyone who has sent packages and post cards to conor (and aidan). I know I haven 't been much on thanking people lately, just never seem to get the time to sit and do it. But thank you. If you could see the joy in conor's eyes when mail comes for him! Thank you. He's gotten some early bday gifts that are opened already and well appreciated. Rockymountain Railtours sent him a beautiful gift bag filled with train goodies that he just loved. He wasn't well enough to go on a train trip so they sent a lovely bag instead. He was quite thrilled by it. Thank you everyone for thinking of conor and putting a smile on his face. I am organizing his postcards to put up on his wall. He has quite a few!
Speaking of his birthday...can you believe he will be four next week!! Well, in 11 days. I remember each year on his birthday feeling so sad that my baby was growing up. Wishing I could stop it and keep him my baby forever. Now, I just want to fast forward time and be celebrating his 20th birthday. I just want this phase of his life to come to an end. I want his treatment over and done, I want him past all the milestones of being of treatment and I want him to get on with being a little boy. I want him to go to school and come home with colored pictures to hang on the fridge and cards that say "I love you mom" . I want him to play hockey and soccor and go to birthday parties. I want too see him blush because I caught him kissing his girlfriend. I want to yell at him not to come home late any more and to clean up his room. I want to worry he's hanging out with the wrong crowd and I want to see him walking across a stage to recieve his highschool diploma. I want him to live his life instead of keeping it on pause. I want time to jump forward and hear him tell me he's going to make me a grandmother. I want time to rewind so I can hold him back inside my belly and make him safe and well. At the same time I want it all to stand still so I can just hold him and never let him go.
Kristy

Thursday, October 2, 2003 9:34 AM CDT

A quick visit to the hospital on Tuesday for Platelets ended up being an all day excursion! We arrived on time for once at 11am. Conor got his blood draw and we waited about 2 hours for confirmation he needed platelets (yah, duh! he was 24 the day before!). So they ordered them from the bloodbank...an hour went by and no platelets. So I checked with the nurse and she called the bloodbank. Seems they were having trouble findind a suitable donor that met ALL conor's requirements. This was his first post transplant blood product so there was alot of work to do. ( conor started making his own blood and platelets very early on and only required one platelet transfusion post transplant, very early on). They had to find donor that matched him, he is AB , and then since he is still paritally donor cells from aidan that was a factor B and plus the antibodies from other transfusions, then the donor had to be CMV - and after all that the platelets had to be condensed and irradated. SO awhile later we got news that a donor was found and it would take another hour to irradiate and condense the platelets. He would be getting Type 0 (less chance of reaction, as it is the universal donor) and they would be single donor. Again, to decrease chances of reaction. Welll, by this time the clinic was closing and he had to be sent to a holding unit at the hospital. I had asked if he could be sent to the oncology unit, but apparently they were full. Conor needed the platelets, he was at 16 and there was no way I was taking the other option of comng back the next day. We live an hour away. So off we went to the holding unit, which, was better than I thought, but I was still so freaked out with him being in a general hospital population with kids exposed to who knows what...our nurse Kim was great and really try to calm our fears and went over everything with the nurse in the holding unit, but it was still a long and tiring day and it wasn't even half over! So we sat in the unit for another 1.5 hours and the platelets finally arrived. They were concentrated B RANDOM DONOR!! I was totally freaked out, thinking they had sent the wrong ones......the nurse was concerned as well as she had been told the same thing - O single donor. So a call was made to his oncologist, seems that was ok, and they were indeed conor's and he was to get them. He got them within 5 minutes (platelets are run by gravity as fast as you can get them in), and I was a total mess. I was just waiting for a reaction, for conor to start having trouble breathing or his BP to go wacky, but nothing happened. THankfully. That was such a stressful thing! We hardly need anymore stress! But in the end, al was well. We had to wait an hour to get platelets levels drawn again, but then we were able to go home. It was 8 pm by then.
We are off to the hospital for a cbc now. we will have his counts done here, and if he needs blood we will go to Edmonton tomrrow. This time hopefully we'll (they!) will be more prepared and it won't be an all day affair to get a 5 minute transfusion.
Thanks for checking in on us,
Kristy

Tuesday, September 30, 2003 0:48 AM CDT

Well we are home from the hospital. Conor was admitted on thursday after some debate if we should treat this now or not. But Conor's WBC of 54 pretty much decided that for us. It was a hard night for Conor on Thursday. Despite numerous antinausea meds he was up all night sick and in alot of pain. He still gets alot of leg pain at night but this had to be the worst. We tried codiene, tylenol and morphine just to get him comfortable. BUt he was just miserable. He slept from 7-12 on Thursday night, then he was up all night long. I don't think I have ever seen him feeling so sick.He spiked a fever of 39.7, had a cold to begin with and had been feeling icky all week. When he woke up throwing up He was crying and asking me what was wrong. "what's going on here mom! what's wrong with my body! why am I so sick all the time!" It was so heartbreaking. At one point he even said "I give up mom, I am so sick of being sick all the time". As hard as it was to hear him say that, and as sick as he was, and as much as I despise giving him that chemo, I knew that once he got it he would feel better. the first night of the ara-c and fludarbine were always the worst for him. So we trudged on and he slept alot on Friday and by Friday night he was feeling better and by Saturday he was running around the halls and riding the Tractor. We even made it out on a pass and walked to the park. His friend Nicholas came to visit on Friday, but COnor was asleep and miserable when he came by and didn't get to see him really. Which is too bad as I know conor would've had so much fun if he'd been feeling better.
So in all it was a good stay for conor. he got to see Susan. His beloved Susan. The nurse he talks about all the time and whose picture he carried with him to Calgary. She was his nurse on Friday and he was so so happy. Unfortunately she was off the rest of the weekend and I had to listen to "where's susan?" over and over!
Conor surprised all the nurses on Thursday by making them tea in his new tea pot and serving it to them at the nurses station. And they all surprised me even more by drinking it! He even added the milk and sugar for them :).
He was happy to see all the familiar faces and everyone greated him with smiles and hugs. I know he felt pretty special and it made me very happy to see that. He got to go to the Beach (playroom) today before we left and he was very happy with that.
Last night we went for a walk through the hospital and hit all the vending machines for a late night 'party'. we had chips and popcorn and cheezies and pop and chocolate. and I even convinced him to let me watch law and order instead of thomas the tank engine. We colored and read stories and ate way too much junk. He fell asleep right in the middle of the bed long before it was all gone though, and I had to eat what was left.
We made the best out of our stay even though it was hard for him to be back starting treatment all over again when I promised him after transplant there would be no more. but he is handling it better than I had expected. I found it hard being seperated from Aidan again. Aidan is just to big and too active to stay overnight with us now and Darren drove back and forth each night. Taking aidan home everynight. Which is what was best for aidan. I was comforted by the fact that darren is such an amazing Dad and I know Aidan is doted on and smothered with love even when I am not there to do it. I was afriad Aidan would wean being away so much, but he nursed each night before he left for home and first thing we he'd get to the hospital each morning. So that was a comfort for me. I am not ready for that yet!
I know it is hard on Darren, missing Conor so much and not being at the hospital as much as he wants. Its a no win situation and I know we are doing all we can to make the best of a crappy situation. I don't know what I would've done the past year without darren by my side every step of the way. And I know Conor and Aidan truely have a bond with him now that they may have othewise not been able to have had darren not been able to be home with us through all of this. It is so hard, but being together makes it a little easier to bear. I only hope that this road doesn't go on much longer and we can all continue this journey together as a family.
COnor is feeling good today although His counts are pretty low. 4.6 for his wbc this morning and his platelets are 24 so we will be going to clinic tomrrow to get platelets. We were a little upset that his counts dropped so low as we were told that they had wanted to keep them above a certain number. After the first dose of chemo on thursday night, they dropped to 27 and we were told that they would be reevaluated and if they dropped consideribly again the chemo would be discontined. After the second round a cbc was not done - not from our lack of trying to get one - and although we felt uncomfortable continuing not knowing where his counts were, we continued with the third dose and his WBC got hit pretty hard. Hopefully they won't go much lower. We DON'T want to hit 0 and end up with fevers and hospital stays. Conor's marrow is still pretty fragile since the transplant and it wasn't the plan to hit this hard. We just want to keep things in check to get him to another transplant. Ara - c and fludarabine have always worked well for conor and this time was no different. He responeded really well to the treatment and right now its what we want.
Thanks for checking in I'll continue to update when I can.
Kristy

Tuesday, September 23, 2003 9:00 AM CDT

Quick note. We are heading home. We are going to treat Conor with Chemo again and decided to do it closer to home in Edmonton. Probally two rounds in the next 6-8 weeks then back here for transplant. Conor starts treatment on Thursday.
We all need to be home now.
Our address and number are at the bottom of the page.

Thank you all who showed up on signal hill saturday for the climb. I heard it was a great turn out. We could feel your support. THANK YOU. You'll never know just how much that meant to me. I can't wait to see the pictures...
kristy

Sunday, September 21, 2003 4:07 PM CDT

Well we are back from the hospital after a quick stay last night. Yesterday morning conor started complaining of pains in his sides. I thought it may be diahrrea or something like that but it wasn't. It came and went throughout the afternoon. He seemed to forget about it at one point, or it went away and he sat happily watching tv and eating alphaghettis, the next minute he was throwing up. He seemed fine for awhile after that, then said his head hurt, and his back hurt. Darren called the oncologist and I took Conor in his room and tried to calm him down and relax him by giving him a massage and getting him to visulize happy stuff. (trains of course!). The massage and music (Ali - that CD you sent the lullaby one - its great! conor loves it and it really relaxed him!) really helped him and he was feeling much better. He was back to himself, laughing, playing and being silly. Dr.Anderson wanted to see him given his symptoms, so off we went. All the way to the van, and the beginning of our drive, conor was fine. But once we started drivng he was crying and saying his head hurt real bad and his back hurt too. Scared the hell out of me. I was stuck in the turning lane and trying to figure out how the hell to get past all cars with out drivng over them, but there was no way to go, so I had to calm myself and wait it out. THankfuly the hospital is just minutes away. We pulled into the parking lot and conor promptly threw up when I got him out of the van. I picked him up and just ran in with him, puke and all. He was getting more upset by my being upset, but just how sudden they headache came on really freaked me out. Darren and Aidan had stayed home because we thought it would be a quick visit for bloodwork and home again.
We got to the unit and conor was brought to a room. He was very uncooperative, light bothered his eyes, his back hurt to sit up etc. We got his bloodwork done and managed a quick exam and things seemed fine. nothing really out of the ordinary or raising any red flags. the side pain was gone and it was just the headache. as soon as the nurse and dr. left, he settled and fell asleep immediately. He had worn himself out.
His bloodwork came back normal. Well as normal as a wbc of 51 can be! everything else was of no concern. HIs platelets which were what they mainly wanted to see were fine, and had actually gone up since thursday. So that ruled out alot of concerns. We think the headache came on as a result of the LP on thursday. It is a little late as it headaches usually happen within 24 hours after an LP, but it fit all the criteria for that. Just to be on the safe side they kept him overnight. And true to conor fashion, he woke 2 hours later full of silly smiles and wanting to stay up all night, eat popcorn and party. We watched movie after thomas the tank engine movie and finally he fell asleep at 1 am only to wake again at 4, stay up til 6 and sleep til 9. He woke in a great mood, turned the playroom upside down and we were promptly sent home.
He seems to get a headache while sitting up straight or when the light is realy bright, and still feels a little sick but is eating and playing fine. He is finally napping now and I expect he'll wake up ready to go again.
We have an appointment tomrrow morning to discuss our next plan of action. I want to start doing something NOW. I am really concerned with his counts being so high and its time to start planning treatment. What that will be and when it starts is yet to be seen. It looks pretty obvious that the DLI didn't work and we won't be doing another. The BMA results should be back tomrrow and we will know more then.
Its been a busy week somehow, yet I can't seem to remember what we have been doing really.
Conor is missing home an awful lot and cried the other night to go back to wetaskiwin to his pretty house where all our pretty things are. He said it is different here, nothing is the same, he doesn't even have tv in his room or a doorhandle on the closet door! Poor little guy just wants to be home. I can understand that. He wants his thomas stuff (most of which IS here), his tv, his thomas cuppord for all his trains and his friends.
On the days we keep him busy and get him out, he is happy. Darren took him out the other day for a walk and they went into a store looking at tshirts for daddy when COnor saw the display of jewlery. He told darren that he wanted to buy a ring for me and together they picked out a beautiful silver Claddagh ring for me. Conor came running in with it and told me it was mine to have forever and ever. Ever since he keeps coming to me to make sure I am wearing it and is always touching it. I told him I will never take it off. And I won't. Early this week he stopped when we were out walking and bought a beaded necklace for himself and one for me and he picked out really nice leather and silver bracelet he wanted me to have. He has good taste, thankfully, cheap taste! I certainly can't bring him into a real jewlery store or he'll be buying me diamonds and emeralds next! hmmmmm.....
He's loving and affectionate and we are doing as much as we can to get out and do stuff. We found some parks close by and try and get to them at off hours when there are not other kids around. If kids show up, we leave and that is hard. But its what we have to do! It seems that's our whole lives lately, just doing what we have to do to get through each day. THankfully, with conor and aidan being such incredible, beautiful boys, its not hard. They are so, so funny and make each day fun and always find a way to make us laugh.
Thank you for all your emails, calls and guestbook entries. Your support is really helping us through this. I know I don't get much time for replies, but please know that we know you are there and it means so much to all of us.
kristy

Friday, September 19, 2003 7:57 PM CDT

Hi,
Just a quick update to let you know things here are fine. Conor is doing well. HIs lumbar puncture and MRI were normal. Nothing back on the BMA yet though. THings are good. WE are getting ready for a curry dinner (AGAIN! its conor's favorite) and a family moive.
I'll update more as I can.
Can't wait to hear about the turnout on Signal Hill tomrrow!! Have a nice climb and take a big deep breath of that wonderful Ocean Air for me!!!
Kristy

Wednesday, September 17, 2003 6:52 PM CDT

First I would like you take a moment to remember Connor Summerville
http://www.caringbridge.org/ny/connors_page
Connor lost his fight with JMML yesterday. I have no words... Please visit his site to offer his family your support and prayers. It hits me so hard when one of our JMML family loses his/her fight, as I know it does everyone.

I am trying so hard to hang on to HOPE. I feel like I am holding on with two hands, digging in my heels and still its getting away from me. WIthout that HOPE I don't know what I would do.

Not much good news to report from today's clinic visit. His WBC is 39.9, blast are 6%, his platelets are down from last week and there are lots of other not so good looking things in his blood work. Conor remains himself, playing and full of energy.
We have been concerned lately that he may be depressed as he is often just down for periods of time. We also mentioned 'staring' spells where he won't answer us or acknowledge us and that got us a consult with the neurologist and a ECG (EEG?? sorry can't remember the initals!) which looked normal. BUT no one wants to take chances that they may be seizures SO he has a MRI scheduled for tomrrow along with the BMA that was to be done next week. THey are doing it now because of his counts. ALSO they are doing a LP (lumbar puncture) to investigate the cerebral spinal fluid (CSF). SOmetimes these seizures (IF that is what they are) could indicate cancer cells in the CSF therefore the brain. NO ONE seems to think that is the case. As JMML does not tend to this as do other leukemias. I don't think it is any thing more than Conor just tuning out for a break. Shutting everyone/everything out. AFter the year he's had, who can blame him?
We are just going to watch him and monitor him for signs of the staring spells and be more observant of how he is before, during and after. If we touch his face and he blinks, or shows other signs of being irritated, we know its not a seizure.
We will know alot more about everything on Friday and I will update again then. All the tests - bone marrow, MRI, LP etc. should be back by then. We will have some idea of where we are going and what we are doing to treat this.

THanks for checking in and those of you in Newfoundland, the REAL TIME CANCER WALK IS THIS WEEKEND!! CLIMB FOR CONOR!!

Wednesday, September 10, 2003 6:22 PM CDT

Thank you everyone for all your support this past week. I knew you were all out there rooting for Conor; I just really needed you to speak up. Its hard, its uncomfortable, shit half the time I don't know what to say to parents I meet in hospital. What can you say? Nothing can make it go away, or make it better. But support and encouragement can make it a little easier to bear. So thank you all for attending my impromptu pity party, I am glad I spoke up because keeping it to myself was really not working and only making me more upset, and I don't need that. This page started out for everyone else, to keep all our family and friends updated and help you feel a little closer to Conor. It's still that, but it has become my safe zone, my outlet and my therapy. It forces me to get things out I would normally keep in and I need that. It has become just as much for me as it is for you and for Conor. Having this page, this outlet means so much to me. If nothing else I feel connected and that is a very good thing to feel right now.

Relapse sucks, but Conor IS GOING TO KICK THIS IN THE BUTT!!! It’s just a bump - a big bump - but we'll get over it. Its going to take a lot longer and be a lot harder than we thought, but he'll show everyone what he is made of. And Aidan, well, he will just keep on smiling and chugging along. Did you know that aside from finally getting this walking thing down pat, he cut 2 teeth the same week had the Aphaeresis? Same as last time. During the harvest, he cut 2 teeth! Must be something in the anaesthetic :).

Today's clinic went well. Conor's counts have actually come down and are looking a little better. WBC 24 down from 36 last week, monocytes down to 5.9 from 10.4...What that means is another story and anyone's guess. Could be GVL or could be the Accutane. We will know more in 2 weeks when they do the bone marrow and look at the donor percentage and see what is happening in there. Depending on those results and if we see any GVHD by then, we will either do another DLI or start planning for another transplant. Which is something we want to avoid. IF that does happen then we need to wait as long as possible. We've talked about the possibility, and there is a lot more to discuss and decide, like whether or not to use Aidan again. Or to use stem cells from the peripheral blood or bone marrow. When and if to do DLI to get GVHD. Do we use immunosuppression or not, TBI or not. Its pretty up in the air. What I find absolutely crazy is THERE IS NO ONE TREATMENT for this, or any PROVEN treatment. It is nuts. Conor had a non TBI German based protocol, with a sibling donor. He had, we thought the perfect criteria for a successful transplant. But we were wrong. So now the talk is unrelated donor and TBI. What is really really crazy is I know kids that who have HAD that treatment and they relapsed. They had/have GVHD, they had TBI, they had unrelated donors and relapsed and now are trying to have another child to have a matched donor and non tbi based protocol for conditioning. We want what they had and they want what we had and it is anyone’s guess if it will work. Its maddening how little is known about JMML and its treatment. EVERYTHING is uncertain. That's where the feelings of helplessness and being alone come from. Because the reality is, No one can understand our lives, and this crazy world we are living in. And for that I am glad, NO ONE should have to endure this, no child should suffer this way and no parent should have to put them through this hell. ME? I'll be fine. I am fine considering. As I have said before, its when my boys are 18 (or 40??) and move out on their own, that's when I'll have my breakdown. That's when you'll find me in the corner a total mess. Until then - I'll keep chugging along! My heart aches for my kids in this. For Conor, for all the things he is missing out on. How this year he should be staring school and learning so many things. Instead he is learning the normals for BP's and the proper colour tube for his CBC and Lytes and what dosage of meds to take and what temperature is considered a fever and what to do when his central line springs a leak or gets clogged. And I guess, aside from the obvious fears I have, that is what I am most saddened by. The loss of innocence this has pushed upon him and us. I long for the days when my biggest concern was the side effects of immunizations and whether or not to give them and the normal childhood illnesses. God, they were stressful enough! I long for the days when I had no idea what the inside of a children's hospital looked like. When cancer was something that happened to other people, other kids and that world was so so far away from mine that it seemed it didn't exist. I long for that world not to exist and that world of my previous life to be the only real one. One where I stayed home with my boys and played blocks and trains, baked cookies and went to music class and story time at the library. I didn't need cancer to make me see the beauty in my boys, I saw it already. I knew they were the most important thing in the world. I already knew being their mother was the most beautiful thing I could be. I didn't need cancer to show me that. Cancer has taught me so much, but the lessons it has taught me are ones I can't seem to get a grasp on. It is hard to embrace each day when you are given so many restrictions to do so. I want to live life to its fullest and experience the joy in each day with my children. I want them to see the world. Yet we are forced to avoid too many places or people for fear of getting sick. I see things differently. I see the good in people; I am less quick to judge. I see selfless people giving of themselves day after day. And I see people not appreciating the simple joy of having a healthy child or what it means to have a family. It has made me see the goodness in the world, yet it has also enabled me to see so many horrors that I want to close my eyes and never open them. It has made me soft, it has made me weak and it is hardened me. It has given me strength and courage and made me more afraid than I ever thought possible. I've grown close to people I've never met and further than I thought possible from people I've known forever. I've seen my son learn to be strong and brave when he shouldn't even know the meaning of the words. I've seen my husband break and I've seen him put me back together. I've seen my child put his life at risk to save his brother and there are no words to describe the beauty and the terror of that. I learned some pretty tough lessons and some pretty great ones. This world of cancer is full of contradictions and uncertainties. Am I grateful for those lessons? Yes. Could I have lived without them? Yes. If it spared my child this past year, I'd take anything life had to throw at ME. Why him I do not know. Years from now when he is grown and makes a life for himself maybe all this will make sense. Who knows what greatness he is destined for? Maybe because of him and children like him breakthroughs will be made in the world of childhood cancers. Maybe he'll be ordinary and boring and not stand out at all. And that too would be extraordinary.


Please remember all the other kids and families fighting this battle in your thoughts and prayers. Especially the family of Bret, who passed away on September 6th. Please remember him, and remember his family. Our JMML family grows bigger and smaller with each passing day. And that is a very sad reality.

Kristy

Saturday, September 6, 2003 9:47 AM CDT

Still not much to report. I haven't been updating because there isn't any changes really. Conor has been having a higher than normal temp. but not a fever. His counts are pretty crazy, but there is nothing we can do right now because we are looking for signs of the DLI to be working. His doctor told us that from his CBC its obvious he is in full relapse and that in any other case he would be staring chemo now, but we have to wait this out. By next wednesday, we should have an clearer picture of what is going on. The only complaints Conor has are his legs and foot. He keeps waking up at night crying in pain. We can't find the source of this pain, so we give him some pain meds and spend half the night up with him. By morning it is gone. He is irritable, and clinging and feeling crappy, but still gets up everyday with a smile on his face --- ok, those of you that KNOW Conor know thats a lie! - it takes good 15 minutes to see a smile - I am seriously considering giving him coffee each morning to see if we can avoid his grumpy stage. Hes not a morning person!! --- I guess what I was trying to say is that he still gets up each day and plays and has fun. He makes the most of it. His latest game is to watch his Christmas Thomas video and reinact the entire movie. That kid is going to be a movie director someday! He has us all setting up the scene and acting the parts with the trains...(boy it can get tiresome after the 20th time!!). My livingroom right now is covered in 'snow' or cotton balls that he is using to reinact the avalanche scenes! He has whole shows memorized! Its pretty hard to get him out to do anything. He just wants to hang out at home and play trains, watch movies and color or do crafts.
We do manage to drag him out for walks occasionally and have had alot of fun discovering the parks in downtown calgary. One park he really loves is one that is full of bridges and little pools of water. One area has rocks that you can jump from one to the other like a bridge to other side. We played there for hours the other day. Just conor and I. We had a picnic, it was alot of fun. We don't get alot of one on one time anyone. We have been TRYING pretty hard to get him a train ride. The entire time we were home I must've packed the kids in the van and drove off to the train muesuem outside wetaskiwin at least 10 times. Each time the trian ride was closed for track repair. The last time was railway days and the place was jammed full of people and we couldn't go in. SO when we came to Calgary we decided to go to Heritage park. There a steam engines and boat rides....but wouldn't you know it? We went on Tuesday and the train stopped running on labour day..the DAY BEFORE! Ugh. It runs on weekends so we are going to try and get there today. Cross your fingers that my trian obsessed son gets a train ride!
The other reason I guess I haven't been updating much is I feel so pressured to be up all the time and convince everyone how great we are doing and how wonderful conor is doing. Well we are, and he is, but this relapse is a hard blow. Just as difficult as his original diagnosis. Probibly more so because we know now what to expect. And also because people seem to regard this as some kind of death sentance for conor and are walking on egg shells around us. ITS NOT! No one knows what to say, and it seems no one is saying anything at all! I've been feeling really isolated and alone this time. People are afraid to call, or email or whatever. We still need your support! This isn't the beginning of the end for Conor! We have a huge fight ahead of us, a new journey. Its gonna get tougher than it ever has been, its gonna be VERY HARD to go through again. For him and that makes it hard for me, for our family to face, but its not a choice we get to make, we just do it. So while you are out there living your lives feeling sorry for us, for Conor, take the time to send him OR AIDAN a post card or letter or drop an email or guest book entry. It makes us feel like you haven't given up on Conor just yet. I just had to get that all of my chest. Maybe its being cooped up in this small apartment with no airconditioning during thrity plus degrees everyday and not having any contact with others just the four of us inside these four walls! But I really feel alone in this lately and its not a good feeling.
All that being said. There is something I NEED you all to do for me. Well, those of you in Newfoundland. I am putting a link and some info at the end of this. I want you to go to the site, or phone the number and sign yourself up for the Climb up Signal Hill on September 20th. There is fee and it goes to the Realtime Cancer charity. Geoff, who leads the climb is a two time bone marrow transplant recipient and a CANCER SURVIOR! I want you to DO THIS CLIMB FOR CONOR! To show him to show us that you still have hope and faith in Conor beating this. NO EXCUSES! Conor is climbing a pretty big mountain and his journey is far from over. Its not a big climb, most of you have done it before out for a sunday walk - just do it again for Conor. I know he would love it there. ITs always been one of my favorite places, and I miss it so much! the ocean, the salt air the view from the top....I know conor would love running around the cliffs and 'chugging' like a train up the hill. So please, go to the site, contact Realtime Cancer and sign up for the climb. When you get your T shirt, pin a picture of conor on it and write "I'M CLIMBING FOR CONOR" somewhere on your shirt and go do it! and while your at it, chuglike a train while you are climbing the hill, especially on the hard parts..."I think I can, I think I can"....its what conor would do.
Kristy

RealTime Cancer
P.O. Box 23017
St. John's, NL
A1B 4J9

Phone: 709-579-7325

www.realtimecancer.org

Tuesday, September 2, 2003 0:41 AM CDT

Right now it is safe to assume, no news is good news. Sorry I've been slow on updating, but there is not alot going on. We did take Conor in to the clinic today because I thought his broviac may be leaking at the site it had been repaired. His blue lumen was stiff on flushing as well. There was no leak but the lumen was not working properly and alough it could be flushed, it couln't get blood return so we had to put some broviac draino in there to get things moving again. Works perfectly now.

These past couple of weeks have just been a crazy blur. I mean it is less than 2 weeks ago we got the news of Conor's relapse and already we are back in Calgary and the first DLI is done.

Gosh that day was just horrendus! It started at 6 am with the nurse waking me to let me know that the ICU did have a bed and the Apheresis was going ahead. Up til that point no one even knew when the collection would happen. Poor Aidan had a really rough night having to be NPO after midnight and he was not happy with not being able to nurse at all. It was pretty tough on me too, but we got through it. The cardiac surgeon that inserted the catheter came to speak with me shortly after 7am and discussed the risks,placement etc. and really freaked me out by telling all the places he COULD insert the catheter if the groin wasn't a possibility. The neck was one of them, and I am so greatful that didn't happen! As it turns out the leg was bad enough. The catheter was inserted in his thigh, just down from his groin. I assumed that the catherter went DOWN his leg into the vein, but found out later that it went UP into his abdomen, and ended just under his belly button. That thing was HUGE.

I walked Aidan to surgery and stayed with him until he fell asleep. That was so hard. It is one thing, to go with Conor and know that the procedure he is undergoing is for him. To help get him better. But with Aidan it is a whole other set of emotions. I mean, here is a perfectly healthy child undergoing Major surgery. I fear for his safety, I fear for Conor's...

After the placement he was brought to the ICU, and allowed to wake up. I wasn't expecting to see him awake. I assumed he would stay under, but they allowed him to wake up and then got things arranged and put him under again. this time it was much easier as he had an IV in his hand and was given 'sleepy milk' via that, and not the gas as in the oR. The ladies from the Apheresis unit showed up and once I got a look at the machine and aidan laying there I felt so weak. I didn't think I could do it. I didn't want aidan to do it. I just wanted to scream and yell and start ripping out lines and pick up aidan and run. That and throw up and/or pass blissfully out into unknowingness. But I didn't. I took a VERY deep breath and started asking questions. I let myself focus on the facts and got facinated by the machine, procedure and technique. I learned alot and I got myself through a very rough day!

The machine was set up and primed with Donor blood as Aidan was much to small and they would've used all his blood just priming! Once that was done, one line was hooked up to the catheter as an in, and one as an out. the blood was drawn from aidan, put through the machine, into a centerfuge and the cells were spun out and seperated by weight. Then the machine skimmed the layer it wanted, in this case the middle layer, and got the lymphocytes. Other cells rose to the top or sunk down and none or very little were collected. RBC and platelets are close in weight so some of those went along for the ride. The monitered his hemoglobin and platelets and when that showed his platelets as too low, things were stopped IMMEDIATElY.The nurse running the machine had said to me, that aidan was their patient. Conor was not their concern right then. They're job was to monitor aidan, watch out for his safety and not compramise his health or safety in any way. Dr. Lewis had requested a certain cell dose, and they would try and get that, but if that was not able, then they would stop. I had needed to hear that. So often I hear aidan referred to as 'the donor' and what they need from 'the donor'. It feels sometimes as if they don't see the donor as a person, but as a means of getting what they want and need to treat conor. but for once I felt aidan was being treated like a person worth caring about. and that eased my mind about the whole thing. I was always so scared they would push things just a little too far.....so once the CBC came back with low platelets, the machine was backed up and whatever was running out was returned to aidan and the whole procedure stopped immediately. At that point they had definately engouh for 2 DLI and were on their way to getting the 3rd. So we had what we needed, but not all that was wanted, but Aidan did remarkibly well for some one so small. I am so very happy things weren't pushed to far to get more cells.

I want what they want, God, so much more so, but to have to endanger Aidan even the in the slightest to get that. Words fail to describe what that does to me. It was so hard to watch my helpless baby hooked up to machines, watch doctors and nurses attempt 16 times to get an IV line in, and fail...thankfully he was asleep or i would've stopped it completely. But the line was an extra needed to have another open to run meds if needed. The IV in his hand was for the sedation and nothing could be added or removed.
He got the sleep medicine, calcium, an anticoagulant, hydration...each time the machines settings were changed he would stir and need more meds. each time his calcium levels changed you could see his discomfort and he would wake a little and need more meds. All is vitals were closely monitored on the screen above his bed and I could see the effect each thing had on him. I could also see, and so could the nurses that the sound of our voices, mine, darren's and Conor's had a calming effect on aidan. He could tell we were there and our voices, our touch, soothed him.

Conor got to come in and see aidan and was, I think a little upset by seeing aidan like that. but he kept to his role of loving big brother and smothered him with hugs and kisses. The first thing he did though, was make sure aidan had his little bunny. It was the same bunny that during the harvest in feburary Conor wrapped in a face cloth for aidan to take to the OR. It is so beautiful to see the love they have for each other.

Conor spent the afternoon pretty much roaming around from place to place. Darren and I took turns with him, and he played with differnt volunteers and spent most of his time in the playroom so darren and I could both be with aidan in the ICU. It was hard running from the ICU to the ward to be with Conor. But we managed!

Once aidan was allowed to wake up, he became his usually flirty self, smiling and trying to kiss all the nurses! He was so groggy and dopey looking it was really funny to watch. He would pucker his lips and try to kiss me or his nurse and end up just toppling over! pretty soon though he got down to bussiness and made up for nearly 18hours of no food and started nursing. He stayed that way for nearly 24 hours after that. taking small breaks and start back up again. It was such a great comfort to me and to him to be able to let him just feed all night long. It made it hard for me to be with Conor, he needed me too. He was scared, he knew something was going on but couldn't figure out what really. even though we'd explained it all to him, it was so hard to make Conor understand what was happening. by the time he got the lymphocytes it was 10pm. He was tired, worn out and freaked out. The lymphcytes had to be pushed as fast as they could get them in, so they came in a 100cc syringe and there was 30(maybe 40??)cc's in it. It looked faintly like blood and with all our anticipation and turmoil of the day (remember the whole room/bed fiasco??) Conor just freaked out and made getting the lymphocytes a very difficult process.It took about 10 seconds to push them in....and that was that.

Now we just wait. Wait to see what will happen. I had thougt conor's donor percentage was much higher. On day 100 it was 75 percent. On the day of the DLI it was 35.that really hit hard, but this DLI can hit hard to and Aidan's super cells are right now fighting it out inside Conor and WINNING. They are seaking out all those nasty JMML cells and destroying them one by one. Those JMML cells don't stand a chance! They gave Conor a pretty high dose from what I understand. Normal is 2 x they gave conor 5 x (there is some mathmatical equation here..10 to the power of 7 or something to get a certain cell number)...the next one will be double that.

Let's all picture that day by day. Envision that war and envision Aidan's super lymphocytes taking control. See it. HOpe for it, pray for it....help us make it happen!!Send all the good vibes you can this way. Conor needs them to kick some JMML butt!

We are all still a little knocked down by this. Conor is not himself. i can see his fear this time. Maybe he is mirring my own, so I try to hide it best I can. He can't verbilize it, he can't understand it, but I can see it in his eyes, in his actions. he is being difficult, whiney and testing us. How can I make him understand all this when each day I ask myself a million questions, I read, I reaserch, I seek the advice of others and no one understands this crazy disease. best I can do is assure him we are fighting it with him, hold his hand and be there every step of the way. I keep telling Conor that he and Aidan may be little engines, but little engines can do the biggest things! You have to be a Thomas (the tank engine) fan to get that reference :). And togeter they can. Just like Thomas and Percy...



Kristy

Saturday, August 30, 2003 11:14 PM CDT

I know I owe a big update, but you probaly won't get it tonight!

The boys are doing well. Aidan is back to himself and Conor is feeling good. Last night he spiked a fever and had diaherra all day,but docs said just to watch it. he was fine today. He's obviously not feeling 100% but he's doing well.

I can't believe I forgot to tell you that Aidan was THE YOUNGEST DLI DONOR that this center has done the Apheresis on. THE YOUNGEST and SMALLEST donor. Others have been self donors, but no one as young as Aidan has donated for someone else. Pretty amazing huh?

I just uploaded the pics from the DLI (or ALI as I like to call it!) to my yahoo album. Aidan did wonderfully and Conor got the cells late thursday night. The pics are pretty detailed, so if you are sqeamish, don't look!
kristy


http://f1.pg.photos.yahoo.com/kristydarren

Friday, August 29, 2003 12:42 AM CDT

Quick update. Someone's ears must've been buring last night because when I finsihed updating we were told Conor WAS being admitted. So that is that. We were put through hell for nothing. Everyone had a good night. Aidan's platelets are coming up (66).
Everyone is good. We are being dicharged now.
I'll update everything tonight. I have some fantastic pics of the whole apherisis.
Kristy

Thursday, August 28, 2003 11:05 PM CDT

First of all, conor is fine. Aidan is fine. The apherisis went well. His platelets did drop pretty low (30!) so they stopped early but they did get a good cell volume. Enough for 3 DLI's for Conor.
As I said the kids are doing fine, if you don't count the fact that the hospital doesn't think conor is important enough to warrent a bed or a room for the night. We were told this would be AN INPATIENT PROCEDURE they would keep him overnight. They went on to tell us that aidan's room mate was being moved and they would share a room. The hellish day was looking up. We planned movies and pizza. Instead, conor was given a "Temporay" room and we were left running back and forth between two kids that needed us. COnor was upset, tired and scared by the time he got his infusion. Now he is sleeping after a long day and lots of benadryl and other meds to prevent a reaction from the DLI. And after his 4 hours of hydration he will BE SENT HOME AT 2 am. Yes 2 am. Oh - yes he could have a room - on another unit. He's still a tranplant patient is he not? and yet he doesn't warrent a room on the oncology floor? what the hell is that all about. I am so pissed off. so very pissed. Instead of being with our family, celbrating the wonderful thing aidan did for his brother today and conor's big chance at a cure. we are all upset and angry and just sad that the hospitalt that has posters all over the place saying it encourages FAMILY CENTRED CARE couldn't be bothered to give Conor a room for the night and look after the needs of a child, a family going through a pretty tough ordeal. Basically we were given a room, then had it taken away because another patient is waiting. I guess some one else's child's well being is more important than mine. I am actually surprised aidan isn't being kicked out at 3 am.
Its not the day i had envisioned for my boys. Aidan was very brave, very strong and very loving today. He woke from the sedation giving kisses to mommy and all the nurses. I am suprised because the catheter in his leg was HUGE. I almost passed out when I saw the size of that thing!
ITs been a long day, I still haven't brushed my teeth, I have showered finally at 10 pm in the dreary closet down the hall and i have semi clean cloths on, so I will go sit with my boys until conor is woken from his sleep to be dragged 'home' in the middle of the night.
kristy

Thursday, August 28, 2003 10:23 AM CDT

Well Aidan is in the OR right now and will be brought directly to ICU following that. I am off now to find out where he is so I can be there with him.
The whole thing should take approximately 8 hours. Conor will be admitted tonight. As of right now there are NO BEDS!
I'll update as the day happens.
Kristy

Tuesday, August 26, 2003 11:34 PM CDT

What to say, what to say........we are in Calgary. We are in our apartment. I've got my computer set up, there are cheerios all over the floor, the livngroom is scattered with trains and there is a pile of dishes in the sick...its amazing how fast we can make a place home - lol.

We rushed here today, after we got a call yesterday from Jo saying that wanted us here by 11am this morning. We had planned to come today, but that was when we didn't need to be here until tomrrow. So things were rushed. Two very tired parents, one hungry boy and one teething baby, make for a LONG car drive. but we got here on time and ok. That's what matters. COnor has a bone marrow aspiration today. That went really well. He couldn't eat until that was over. that didn't go so well. HE was hungry! Making a child wait until 2pm for food or water is insane,but so is this life we now lead, so its all relative I guess.

A few new things. Day 100 chimerisms are in. 70 percent donor in the peripheal blood. 68.5n the bone marrow. Blood work on thursday and today showed blasts. Guess my hopes of this all being a mistake are long behind me. Now its just "GET OUT OF OUR WAY, WE GOT SOME CANCER BUTT TO KICK". Bone marrow test today was to look for the abnormality to base donor percentage on that. Hopefully he is still holding around the 70 percent mark and this DLI will work its magic. DLI IS A CHANCE AT CURE without going to second transplant. we were beat down by this relapse initially, but now that we are here, the fight is on, and already we don't ahve the luxury of getting down about it, we have to face this and deal with it the only way we know how, by looking at all the postives Conor has going for him and seeing that the odds are still in his favour. JMML sucks, and the cure rates are low. Relapse sucks and the cure rate is even lower. but if anyone can do it, CONOR CAN. And as he says "aidan is going to help me get better by giving me some more good cells to make me better. they are going to eat up all the bad ones and spit them out and send them to Never Never Land.". This from a boy who's biggest concern was whether or not getting sick will stop him from eating chocolate ship cookies! We should all have such worries! He is an incredible kid.

Aidan's big day starts tomrrow. Can you believe my baby is 22lbs and 29 3/4 tall? My baby...Dr. Lewis says lots of kids aidans age have done the aphereses but as self donors, not for someone else. This is the first DLI for JMML that he has done at this hospital. But he has done them before at other institutions. I am confidant that he is working with us and for us with Conor's best interests in mind. I know EVERYTHING that can be done is being done. DLI has worked in JMML before. And one success (although I know there are more!) is all I need. If it has been done, it can be done and Conor and Aidan can do this. aidn has a clinic visit in the a.m, which means pokes and prods and all kinds of icky stuff. Then admit to the hospital to prepare for the procedure on thursday morning.

Right now, I am just worried and scared for aidan. that is on ll that is on my mind now. He has alot to endure the next few days and I fear sometimes that he gets forgotten in all this as just "the donor". HE'S SO MUCH MORE THAN THAT!! He's a beautiful boy. He's just about mastered walking and he gives the most amazing hugs and if you aren't careful - he'll smother you with kisses :). More imporatantly that all that, he is a person, he is my son. He is so much more than "The donor" I have started saying ALI (Aidan lymphocyte infusion) instead of DLI. A donor is a wonderful thing. The world needs MORE OF THEM. Usually you are not fortunate enough to know the name of the donor but I am. Donor's deserve to be recongized and more than just a means to an end. They are Selfless, giving, loving PEOPLE. With lives and loves and families of their own. In this case, Conor's is a happy, drooly, giggly, wobbly, gapped tooth, stinkly little brother. He too is my son. And to me as a his mother, my worry is just as great for him as it is for COnor in this battle he fights. So please remember Aidan tomrrow and most importantly on thursay when he is taken to the OR to have the catheter inserted and is sedated for 8 hours in the ICU. He has alot to endure. But I know,given the choice he would chose do to exactly what he is doing.

After Aidan is out of the ICU on thursday, the lymphocytes will be given to Conor. Then I get to focus my worries on Conor. Then we just wait and see what develops. We want GVH, but not too badly. We want Graft vs. leukemia. We want the DLI (or ALI!!) to work its magic. We want to take our boys home and just stay there. Instead of playing "musical houses" as conor has taken to calling our wanderings.

Celebrate your kids today. Hug them. Let them make a mess - just to hear them laugh as they do it!!

Kristy

Saturday, August 23, 2003 11:20 PM CDT

To add excitement to our boring lives Conor decided to spring a leak in his broviac today. Well, it was most likely sometime yesterday or last night but it was only caught this morning. Last night he fell asleep while we were outside looking at the stars and I carried him up to bed and forgot to put a pull up on him. I ended up falling asleep with him and when I woke up I noticed the bed was wet. While I was changing him I noticed his undershirt was dirty. I immediately panicked, thinking it was blood, but then Darren reminded me Conor had chocolate milk earlier when he took his meds and had spilt some. Then this morning there was blood on his belly. Looks like it wasn't chocolate milk after all! Looking at the stained shirt later this afternoon, it still looks like chocolate milk stains until you look really close........anyway, we called the Oncologist in Edmonton who told us to just go to emergency. I did not want to do that. As I said to him, every time we'd been there in the past, they had no idea what a broviac was, or how to flush one- let alone repair one! Not to mention they bring in every med student, nursing student and support staff trainee they can find and we have to subject Conor to all that.

Anyway, we called Calgary and the nurse called me back, told me exactly what to do, and suggested I call the oncology floor and see what they suggested. I did that, and I am glad we did, because although they couldn’t take him on the floor they assured me that if I told the emergency staff to call the Oncology. Floor when we arrived some one would come down right away with a repair kit. Which is what happened. (For those of you, who don’t know, his Broviac is his central line that is inserted into a vein and exits out his chest on a long tube then splits into two lines. This is where they do all his blood draws and where he gets all his meds.) I already had clamped his line close to the exit site this morning, so the nurse simply cut his line below that and pieced the new lines into it with lots of glue, put a sheath over it, put more glue, and that was it. I was pretty emotional as was Conor at losing the old broviac (but at least he didn’t have to go to surgery!) The cut in the line was above the part where the line spits into two, so it was quite possible he might’ve needed a whole new line and not just a patch job – but we were very lucky! I was so emotional because I was certain the line was coming out for GOOD this week and here we were saving it to use for who knows how much longer. Conor was just sad he was losing his line – but perked up once we told him he could keep it to show all his friends.

We made a quick visit to the Oncology floor to say hi, and left for home. It was nice to see the Nurses of 4E3, I always felt so comfortable with them. They were always so good to ALL of us, and always took the time to sit on the bed and ask how I was doing. They always had time hold Aidan or even take him while I showered or played with Conor. They may have been Conor’s nurses, but they never forgot the rest of us as well. They always had a shoulder or an ear when needed. I could see just how the news of Conor’s relapse had affected them.


Now on to all the other stuff. Looks like Dr. Lewis is certain Conor has relapsed. This trisomy 8 showing up is a clear indication of that. Since this is showing up in 35f the cell sample Dr. Lewis is assuming Conor’s donor percentage is about 65 We are still waiting for the chimerisms to come back but if they aren’t he will do a FISCH(sp?) test to look for the trisomy 8 and see what we get. Also he said that Conor’s monocyte count and his lymphocyte count indicate that there is something going on – monos are up lymphs are down…. The numbers point to Conor’s cells and Aidan’s cells fighting for space and Conor’s cells are winning out. It’s all so confusing! I sent a very long email to Jo last week and she forwarded it to Dr. Lewis. He called and answered EVERY question as I had it written out. I was so grateful for that. There were a lot of questions regarding what to expect (for both Conor and aidan), how this happened, when it happened, what is going on, what will go on etc. etc. I just sat down and wrote each and everyone out as they popped in my head and hit send. I was very happy to have all my questions answered. Not that I got any answers that made me feel better. But at least I have answers. I would’ve liked to hear “oh, ooops, look at that! We used the wrong sample, he’s actually cured………” but that didn’t happen!

So the plan is this. On Wednesday both Conor and Aidan will be seen in Clinic. Aidan will be admitted on Wednesday night and first thing Thursday morning he will be taken to the ICU and sedated. A catheter will be inserted in a vein in his leg and he will be hooked up to a bunch of machines, monitored closely and they will do the aphaeresis. It could take up to 8 hours depending on the concentration of cells in his blood. He will then be kept overnight and discharged on Friday. The cells will then be given to Conor as soon as they are ready on Thursday. Conor will then be kept overnight for observation. I am really, really hoping to have both my boys in the same room. It is all bad enough without being separated from them. I know in light of everything else it is a silly thing to worry about, but I can’t stand the thought of being apart from them. It was so hard being apart from aidan during transplant and it’s going to be hard being away from Conor for one night when aidan is admitted. But to have both of them in the hospital in separate rooms (or even worse different wards!) will be just crazy.

Then after all that we just wait. We have no idea how long we will be in Calgary this time. We have an apartment rented for one month and a week-to-week basis after that. We are thinking maybe 5 weeks. They will do a BMA after 30 days and then we need the results of that, so who knows! It’s so disheartening. I was so happy with the new patio, the boys new swing set and play fort. We didn’t even get to use it. I wanted so badly for my boys to have nothing better to do than play all day. Just last week we were debating whether or not it was good for Conor to travel, as we want to go either to Newfoundland or Halifax to visit family. I am so glad we didn’t spend all our money on plane fare (have you looked at airfare costs lately?? Absolutely crazy!). Turns out we are going to need that money. We were so looking forward to some relaxing family time together, we all needed it. We’ll need it more when this is all over though!

I am trying hard not to let this get the better of me and bring me down. It’s scary this time. So scary. The Graft vs. Host they want to induce can get pretty nasty and last a long long time. There are drugs to control it if it gets bad, but if they don’t get it in time………I don’t even want to think of that! Then there are the long-term side effects. One step at a time I keep reminding myself. One step at a time. Take each thing as it is thrown our way and deal with that. If I look at the big picture, I’ll surely loose my mind. Thankfully I gave Nancy the key to that little door inside my head a very long time ago, so I can’t cross that threshold no matter how much I want to! Isn’t that right Nanc??
I’m just babbling now, so if you are still reading, thank you…thanks for being here, thanks for checking on us and please stick around. We’re going to need your thoughts and prayers for support.
Kristy

Wednesday, August 20, 2003 8:33 PM CDT

Well instead of telling you all what a great weekend we had with the head shave and the family run (which darren ran and did GREAT - a time of 26 minutes for 5k! yeah darren! and we walked, conor walking the entire 2.2 k). I get to tell you that we got some bad news today

Conor's test results are still coming in and they show that 35% of his cells have the chromosomal abnormality that was present prior to transplant. what does that mean? Possible relapse. His lymphocytes are high, so His dr. is not sure exactly what is happening as Conor's donor percentage is not back yet. It is so confusing as last week we were told there was no evidence of cancer and he had remission marrow and that they were not expecting any surprises with the chimerisms. If his trisomy 8 is back that means that his cancer is back, and it means that his donor percentage IS NOT 100 percent. I have a hard time understanding how all this can be be going on with NO SIGNS!

I've been feeling uneasy for awhile. Something didn't feel right, but I chalked it up to Conor's 1 year diagnosis anniversary coming up. The past few nights he has woken up crying in pain from his legs. That scared me more than anything. brought me right back in time to a year ago. So here we are full circle. Instead of it being the end of a hellish year, a new one is beginning.

Will he beat this? YES! Right now, I have to get my ass in gear and stop feeling so defeated, so DEFLATED. I have to put my game face on and start attacking this monster head on. I am ANGRY this time and get out of my way when I am angry! I've had it with this freaking disease. If it thinks for a second its going to get the better of MY little boy, it better think again. There is NO WAY I am going to let it do that. No way. I am getting madder by the second here!

I remember two years ago when we first moved to Wetaskiwin. We knew no one. I took Conor on my bike to the mall. While I was chaining the bike I made conor hold onto my leg and stay between me and the bike. While I was do that he moved a little to the side, but still holding me. I happened to see a man approaching us out of the corner of my eye. He was staggering along, obviously VERY drunk. all in a matter of a second he was next to us, trying to pick conor up. He seemed disoriented, confused and quite possibly thought conor was someone else. The sight of that man, a stranger trying to pick up MY CHILD, the thought of my child being in danger, threw me into a rage. I screamed, I yelled, I could've torn that man apart with my bare hands and not even thought about it. I became a mother bear protecting her cub. Needless to say, even in his stupor the man backed off. that's how I feel now. Like I could rip this disease apart with my bare hands, cell by freakin cell. Conor will beat this and once he does I will do everything I can to help make sure other kids will too. Somehow the key to this is going to be unlocked and no child will ever go through this again.

Conor has been so happy. So very happy here at home, playing on his new swing set, playing trains, just being home. He doesn't even want to go out anywhere most days. he is so happy here. now i have to drag him away from here after telling him NO MORe. And that pisses me off. I know what to expect this time around. i know our road has been easier than most facing this disease, and this time it won't be.

We are going to use DLI and infuse Conor with Aidan's lymphocytes in hopes inducing graft vs. host and get a graft vs. leukemia effect. Looks like that will happen early next week. Aidan needs to be put through numerous tests for that to see if he has enough cells to give without having to sedate him and hook him up to a machine for 6 hours. Poor little aidan has so much to bear. I hate that I have to make him do this. I hate it. My boys deserve so much more.


I'll let you know more when we do. Tomrrow we visit the clinic in edmonton for bloodwork for both conor and aidan. And we await the donor percentage tests.

Please keep my boys in your thoughts and prayers. they are battling this together.

Kristy

Wednesday, August 20, 2003 8:33 PM CDT

Well instead of telling you all what a great weekend we had with the head shave and the family run (which darren ran and did GREAT - a time of 26 minutes for 5k! yeah darren! and we walked, conor walking the entire 2.2 k). I get to tell you that we got some bad news today

Conor's test results are still coming in and they show that 35f his cells have the chromosomal abnormality that was present prior to transplant. what does that mean? Possible relapse. His lymphocytes are high, so His dr. is not sure exactly what is happening as Conor's donor s not back yet. It is so confusing as last week we were told there was no evidence of cancer and he had remission marrow and that they were not expecting any surprises with the chimerisms. If his trisomy 8 is back that means that his cancer is back, and it means that his donor percentage IS NOT 100I have a hard time understanding how all this can be be going on with NO SIGNS!

I've been feeling uneasy for awhile. Something didn't feel right, but I chalked it up to Conor's 1 year diagnosis anniversary coming up. The past few nights he has woken up crying in pain from his legs. That scared me more than anything. brought me right back in time to a year ago. So here we are full circle. Instead of it being the end of a hellish year, a new one is beginning.

Will he beat this? YES! Right now, I have to get my ass in gear and stop feeling so defeated, so DEFLATED. I have to put my game face on and start attacking this monster head on. I am ANGRY this time and get out of my way when I am angry! I've had it with this freaking disease. If it thinks for a second its going to get the better of MY little boy, it better think again. There is NO WAY I am going to let it do that. No way. I am getting madder by the second here!

I remember two years ago when we first moved to Wetaskiwin. We knew no one. I took Conor on my bike to the mall. While I was chaining the bike I made conor hold onto my leg and stay between me and the bike. While I was do that he moved a little to the side, but still holding me. I happened to see a man approaching us out of the corner of my eye. He was staggering along, obviously VERY drunk. all in a matter of a second he was next to us, trying to pick conor up. He seemed disoriented, confused and quite possibly thought conor was someone else. The sight of that man, a stranger trying to pick up MY CHILD, the thought of my child being in danger, threw me into a rage. I screamed, I yelled, I could've torn that man apart with my bare hands and not even thought about it. I became a mother bear protecting her cub. Needless to say, even in his stupor the man backed off. that's how I feel now. Like I could rip this disease apart with my bare hands, cell by freakin cell. Conor will beat this and once he does I will do everything I can to help make sure other kids will too. Somehow the key to this is going to be unlocked and no child will ever go through this again.

Conor has been so happy. So very happy here at home, playing on his new swing set, playing trains, just being home. He doesn't even want to go out anywhere most days. he is so happy here. now i have to drag him away from here after telling him NO MORe. And that pisses me off. I know what to expect this time around. i know our road has been easier than most facing this disease, and this time it won't be.

We are going to use DLI and infuse Conor with Aidan's lymphocytes in hopes inducing graft vs. host and get a graft vs. leukemia effect. Looks like that will happen early next week. Aidan needs to be put through numerous tests for that to see if he has enough cells to give without having to sedate him and hook him up to a machine for 6 hours. Poor little aidan has so much to bear. I hate that I have to make him do this. I hate it. My boys deserve so much more.


I'll let you know more when we do. Tomrrow we visit the clinic in edmonton for bloodwork for both conor and aidan. And we await the donor ests.

Please keep my boys in your thoughts and prayers. they are battling this together.

Kristy

Saturday, August 16, 2003 11:08 PM CDT

GREAT DAY Today at the "short cut for the Cure" Conor had a wonderful time shaving heads! I'll update more tomrrow after the run and family walk!
Kristy

Check out the pics from today in the album!

Friday, August 15, 2003 2:26 PM CDT

Can you believe its been a year?? It was a year ago TODAY we were on our way to the hospital with Conor with the knowlege something was wrong...just didn't have a clue what. I sitll remember getting ready to go out that morning. We were our way to get a new stroller for Aidan (well me !) my biggest worry at that time was what colour Zooper I would buy. Just as we were walking out the door, the phone rang, it was our family doctor saying "I have Conor's blood work here, I am at the ER this morning, can you come in right away". We got there and he saw us right away, he looked like someone had punched him in the stomach. Not two weeks earlier he a had delivered Aidan, been with us on one of the happiest days of our lives and then he had to sit us down and say "....his platelets are low, his WBC is high...not sure...they are waiting for you in Edmonton right now...further tests...bone marrow aspiration.." I remember hearing high WBC and it hitting me LEUKEMIA!! screaming in my mind and feeling so sick and like the wind was knocked out of me. Driving to Edmonton, getting to the hospital is all a blur, that night is all a blur. The next day they told us "its not leukemia, we aren't sure what it is...go home we'll call you when we know more, might be just a virus..."

So often this past year I stopped to think if we had made it out the door and been on our way, would the phone have ever rang??


This year has flown by. But we made it, more importantly CONOR MADE it.

Thanks for helping us get here.

Kristy, Darren, Conor and Aidan

Tuesday, August 12, 2003 2:14 PM CDT

I know I promised a big update...but how does this sound?

*****NO EVIDENCE OF JMML CELLS*****

Just got the initial report of the bma last week, still waiting the rest, but I'll take that for now!!
It was weird, I email Jo, conor's nurse and she emailed me back immediately, she got the fax of the results just as I emailed her!Tooooo strange.

Things are going well. We finally got the swingset/play fort up, the patio is nearly done. The decking is laid, we jsut have to finish the railings.
aidan is testing out his walking more and more. SO much so he fell face first yesterday and put his teeth through his bottom lip! ouch! I of course rushed out the door to the ER, calming myself enough on the way to go to the dr.'s office instead. "its not an emergency, it's not an emergency" was my chant. His doctor said it could've used 1 stitch, but wasn't really that bad, so not to worry. Aidan of course wasn't. He slept the whole visit - making me feel like a total nut case, but at least our doctor knows I am just a little senstive about my kids these days..at least I assume he dosen't think I am crazy :-). So Aidan is fine!

Saturday was just great. once the swing set was up the boys played there all day. Aidan quickly learned to climb UP the slide!! Conor had so much fun, His laughter was just incredible. both of them. I haven't heard Conor laugh like that for a long long time! Made my heart smile to see my boys just be two brothers playing in the yard.

We are off to the train museum now. they have 1 mile long track that a steam engine runs on. Not a bad afternoon for a $1.

New pictures soon!!

Have a great day.
Kristy

Thursday, August 7, 2003 0:52 AM CDT

Off to Calgary for the Day 100 Bone Marrow Aspiration. It is acutally day +107...but who's counting? I'm not expecting anything less than 100 % donor cells again. conor is doing fantastic!

I promise I will give a detailed update of everything this weekend. my entries have been pretty short and lacking I know!!


Please keep of the kids and families battling this disease in your thoughts and prayers.

**There's still time to sponser darren for the head shave**

the short cut to the cure takes place on august 16th. and short cut through the park, family walk (2k)and 5k run is on the 17th. that weekend brings us to the one year anniversary of the start of conor's journey. If you are able - come on out and Join us!! sHould be LOTS OF FUN.

Kristy

Sunday, August 3, 2003 1:19 AM CDT

A YEAR AGO TODAY:

A BABY BOY IS BORN
I HOLD HIM TO MY BREAST
OUR HEARTS ARE FULL OF HOPES AND DREAMS
WE WANT FOR HIM THE WORLD

VERY QUICKLY, HE MADE US SEE
JUST HOW MUCH HE HAD TO GIVE THE WORLD INSTEAD
FOR NOT ONLY DID HE BRING INTO OUR LIVES,
SUNSHINE, JOY AND LOVE
HE BROUGHT WITH HIM ALL THAT WAS NEEDED
TO SAVE HIS BROTHER’S LIFE


IN THIS YEAR THAT HAS PASSED
OUR TINY SON HAS GIVEN OF HIMSELF TIME AND TIME AGAIN
HE HAS ACCOMPLISHED GREAT THINGS

A BOND HAS BEEN FORGED,
A LIFE SAVED
ALL BY BEING BORN

WE CAN SEE A GLIMPSE OF THE EXTRAORDINARY MAN HE WILL BECOME

HE IS A HERO IN OUR EYES
A HERO TO US ALL


HAPPY FIRST BIRTHDAY AIDAN MATTHEW FORD – WE ARE HONOURED TO BE YOUR FAMILY

LOVE,
MOMMY, DADDY, AND BIG BROTHER CONOR

Thursday, July 31, 2003 0:02 AM CDT

DAY 100

Thursday July 31, 2003

We are finally here. Day 100. Its a wonderful feeling to look at my two smiling boys every day and know that everything is going to be ok. Conor is going to be just fine.

My children. My heros.

Kristy

Sunday, July 27, 2003 10:35 AM CDT

Ok, I'm goning to ask you all for some money now!
You have all heard me mention Carolyn before, she is the woman who organized the fundraiser for Conor way back when he was first diagnosed. Her son Bredan is a cancer survior. And since his illness Carolyn has been helping others. And one way she does this is by doing the "Short Cut to the Cure". Every year the event is organzied in Wetaskiwin by Carolyn and her friend Sharon. People raise pledges and shave their heads. This year Conor, guided by Sharon's expert hand is going to do the first shave on Brendan, Darren and Brendan's dad, Craig. All proceeds go to the Cross Cancer Institute.

So, here's what I am asking. Darren is collecting pledges for his shave. If you would like to contribute, you can email me and let me know. You can send a cheque, paypal, whatever. Anything over $10 is tax deducatable and a receipt will be issued.

ALSO CAROLYN NEEDS MORE PEOPLE TO SIGN UP FOR THE HEAD SHAVE!! SO IF YOU ARE UP FOR IT, LET ME KNOW! ALL YOU HAVE TO DO IS COLLECT PLEDGES, SHOW UP AND SHAVE YOUR HEAD!

THE EVENT TAKES PLACE ON AUGUST 16TH. This day is signifigant for our famiy as it will be one year ago on that weekend that we were aware Conor was sick. With what, we had no idea, but it was the beginning of this journey we have been on.


If you would like more details on pledging or being involved please email me!

thank you,
Kristy

Thursday, July 24, 2003 0:15 AM CDT

I was very gently reminded to day that I need to update more - thanks rainnon! So here I am...what to say..what to say...
Things are good. Normal. and that is so strange. I am thrilled there are no more doctor's visits or daily bloodwork appointments, but man, I feel like I've been cut off and thrown out into world cold turkey! just like that "go home see you in a few weeks". I am was so dependant on seeing those daily/weekly counts to have proof conor was doing ok. Jo (conor's primary nurse) assures me he's fine, they are not concerned, there isn't a need to have any checkups...and that is all wonderful, but it seems so soon! His bone marrow aspiration was moved from July 31, to August 7th, so even more of a wait now. I guess it is a little crazy to worry about being worried about worrying and he is doing Great! He has SO MUCH ENERGY it is exhausting. He doesn't stop from the moment he gets up til the time he goes to bed at night...which is pretty late!

We have been spending lots of time indoors as the patio building has run into a few minor snags. Mainly the foundation of our house needs to be repaired on that side and we are waiting to have that done. Which means I have to leave with the boys for 4 or 5 days. not sure exactly where i will go yet. That is still being decided.

We are relaxing more and more with what conor can do and are allowing him to play with other kids occasionally. It makes him so happy so its hard not to.

Basically life here is as back to normal as it can be with the year behind us a blur and the possibility of "WHAT IF" hanging over our heads. Our lives have been dramatically changed by this, by conor's illness. Our eyes are open to so much now. Not just to the cruel world of what it is to be a parent of a sick child or the sickening reality that ours isn't the only one that there are kids everyday being diagnosed with horrible diseases, but our eyes are open to the GOODNESS in the the world too. To the selfless people who time and time again give of themselves. people that we've never met whom gave so much to us with out expecting anything in return except maybe having a small piece of helping a miricle happen. I truely believe that our ability to be together as a family helped conor get through this. having us there with him every step of the way, being able to be a family through this, helped him beat this. And without the support and kindness of friends, family - strangers, we wouldn't have been able to that.

Wednesday, July 23, 2003 11:25 PM CDT

all is well. I will update soon. There are some new pictures though!
Kristy

Monday, July 14, 2003 11:07 AM CDT

Just to let you know, we are home!! We came back last thursday intending to just bring some things, and return the next day for the rest...but we stayed. Just couldn't bring our selves to return. Home is home.
Darren left this morning to clear out the apartment and clean up etc. Hopefully he'll be home later this afternoon.
It is so great to be home!
Conor is loving it. We all are. Aidan is so happy having more room to crawl around and get into everything. It is nice to have SPACE!
Our trees are gone, the deck is down and now we just have to build a new deck and put up the swing set/fort and Conor can have a safe place to play. Better yet, I can stop saying no, and telling him not to touch anything. parks, public places freak me out and turn me into a total mess - did you know its near impossible to disinfect a public park or keep other kids away?? - crazy! Anyway, when the yard is finished, at least it will be a controlled enviroment and he can have people over and have lots of freedom to be on his own. We will all be much happier then! I can't wait.
And now more hospital visits until July 31!!!!!!!!!!!!!! which is day 100.
Now we just have to settle in.....
Kristy

Wednesday, July 9, 2003 5:35 PM CDT

Well, its officail...WE ARE GOING HOME!
Conor had his last clinic visit in Calgary today. Everything is good. Everyone is very pleased with how well he is doing. Especially us. Conor's clinic visits will be once every 3 weeks for check up and IVIG. His next bone marrow biopsy is on day 100, which is july 31. Everyone expects the same results we've seen so far. Everything looks so wonderful.


We have spent the past 2 weekends at home, trying to get things settled away for our return. We are trying to have our deck rebuilt so conor can have a nice place to play on his own. Looks like we will be doing that ourselves though. Wow, they can be expensive. Labour was 2x the cost of materials. Crazy. So that is our first project when we get home. I guess I should say Darren's first project! maybe we'll have a deck buildig party and get it done in a day!

We also had some large spruce trees removed from the yard. They were big, old and just killing everything in the yard and attracting all kinds of insects. Getting them out of the yard will make it much cleaner and a better place for conor. The area they are is a perfect spot for a swing set we hope to get as a coming home present. Incredibly the man who came to remove the trees had been a bone marrow donor (unrelated) a few years ago! He was very interested in conor and hearing all about him. I was so thrilled to meet someone who had donated. I think that is such an wonderful thing to do for someone.

We are so excited about going home. Conor and Aidan are so happy when we are there. We all are. As much as we like Calgary, there is NOTHING like going home to our own house.

And Aidan. WOW. He will be a year old on August 3. This past year has been such a blur. Aidan was just 2 weeks old when conor got sick, so his whole life has been hospitals and centered around Conor. It will be nice to get home and get on with the business of just living our lives. This will always be with us, but it sure will feel great to not have it hanging over our heads everyday. Not sure what we are doing yet for aidan's birthday, but a celebration is definately in order. He has done so much in his short life, he really is our hero. My kids truely are my heros.

Please remember to keep all the kids battling this disease in your thoughts and prayers. There are so many kids at every stage of this battle and they can use alot of support. I am working on putting links to other kids pages on conor's site. I just have to figure out how to do it!

A big Congratulations to good friends of mine, Allison, Bill and big brother Benjamin - on the birth of their new son Harrison!! . Welcome to the world Harrison!! Allison has been a great source of support for me this past year and I am so thrilled for her entire family with the addition of little harrison. The family could use some extra thoughts and prayers right now, Harrison was born lacking surfactant in his lungs and needs a little help breathing. He has been in the NICU since his birth and will hopefully be able to go home in a few days.



Kristy

I can be changed by what happens to me.
I REFUSE to be reduced by it.
(maya angelou)

Friday, June 27, 2003 3:03 PM CDT

************ 100***********

Report from the day 60 marrow is in and still showing 100ONOR CELLS!
Conor is home from the hospital after his brief (and most likely unneccary!) stay and is doing great! He was home all day yesterday, we returned to the hospital at 9 last night and were discharged this morning.
We are so THRILLED with this news. Looks like we will be heading HOME in the next two weeks!
Kristy

Wednesday, June 25, 2003 4:07 PM CDT

Hi, just a quick update to let you know Conor was admitted this afternoon. Everything is fine. He has a slight temperture and its just a precaution more than anything.He had dental surgery yesterday (4 fillings and 4 crowns!) and we think its just a reaction to that. His wbc is pretty high so he is getting IV antibiotics just in case something is brewing.
We should only be here 48 hours.
On a good note the CSA was stopped today! yippee! one less med to take!
I'll update when I can.
kristy

Saturday, June 21, 2003 8:28 AM CDT

HAPPY SUMMER !!

GREAT NEWS last week!! Isn't that incredible? 100 percent DONOR CELLS!! But we already knew that didn't we? At least I did! There is something to be said for a mother's intuition! I just knew. That know scares me sometimes, not for the reasons you may think though...sometimes it gets mixed up with my fears and its really hard to seperate the two. I have always known Conor was special and I have always had an incredible FEAR the he wouldn't be mine forever, that somehow, someway, he would be taken from me. When we first found out he had leukemia, as shocked as I was, I wasn't surprised...its like it had been hiding in my mind and finally came to the surface saying "I told you so !" but at the same time, I KNEW we (Conor) would beat it. And so far he has. I believe with everything I am, he WILL continue to beat it. But that little voice keeps popping up saying "are you SURE?" And I am sure. But I am so afriad I am wrong. God, I don't ever want to be wrong about this! I want to keep that gut feeling of knowing he will survive this, and not give voice to those fears, giving voice to them, allowing them to live in my head even, seems to give them power. So now that I have gotten them out of my head, maybe they will leave me alone and I can get on with the business of enjoying my son, my sons, my family everyday!
Phew! where did all that come from??

Conor is doing...you guessed it, AMAZING! His cyclosporin was dropped again last week and by Wednesday he will be off of the CSA!! He is taking his meds so much better, its getting almost routine again. Just a little resistance from time to time, but in all, he's doing as good as can be expected from a 3 year old. Wow, almost 4 year old! My boy will be 4 in just few months! My BABY will be a year old in just over a month. My babies, where on earth did they go? I don't even remember Aidan being a baby. I didn't have the luxury of just drinking in his every moment the way I did with conor as an infant. Though I have had time to do that with both of them lately. I find myself sitting and just staring at them. In awe of the people they are. Of all they can do. Some days they both surprise me by doing something that I've never heard or seen them do before and I am just stunned by it. Happy that they both, through all of this they continue to THRIVE.

On Thursday, we saw NEMO. What a great movie! Conor loved it, Aidan was enthralled by it, just staring open mouthed saying "fish" over and over. He did take a little nap during the movie, but woke loving it even more. Little aidan sat in a chair all by himself for part of it, staring up at the screen, eating a cheesie and looking so grown up. His first movie! And conor! It was such a JOY to see him being a regular kid at the movies. He was laughing out loud, pointing at the screen, repeating scences, looking at us, hugging us, hugging aidan, pointing out the good parts...I spent most of the movie alternating between laughing and crying. None of which had anything to do with the actual movie. It was a very nice day.

So that's whats going on here. We are still absorbing the news of the 100 percent donor cells. Its what we want, what we always want to see. We are on the fast track to getting home. I just have to figure out what to do now! On Tuesday we *partied* all night. We had balloons, cake, dancing, even some champagne. Conor was up so late, celebrating "kickng cancer in the butt" - his exact words! In all, it has been a GREAT week.
Kristy

Tuesday, June 17, 2003 1:10 PM CDT

**********100% DONOR CELLS**********

Monday, June 16, 2003 9:46 AM CDT

Good morning all. All is still going well. This past weekend was a little bumpy but things are looking good. It looks like we finally are seeing some GVH. Conor's cyclosporine is dropped to 20mg from 85 in the past few weeks and on Thursday we started to see lots of poops. He was up a few times Wednesday night and all nigh Thursday night with cramps and lots of poops. Also, he has a faint rash on his back, arms, legs and face - and parts of his head. He has had one patch on his face for a long time and the few spots on his head, but nothing to be concerned over. On Friday morning however, his back was really raised and his arms and legs were pretty faint. One area on his face was really red and irritated looking. Off to the clinic we went....Conor was put in the isolation room because they had no idea what was going on with him. If it was GVH or something contagious. They drew blood, took samples...and talked about admitting him for the weekend to observe him and monitor his output. After much debate, I took him home, armed with poop scoops and varios other poop monitoring paraphernalia. I am so glad I took him home. Friday night was fine, his poops changed a little (not for the better) but then returned to *normal*. On Saturday we went into the hospital just for a quick check in. Everything looked good so again we went home.

Conor and I did some shopping for daddy's day, but didn't stay long. Even a 1/2 hour after opening Wal-Mart was crazy and I wanted him out of there! Conor is eating well, still full of energy and is so much fun to be around (well - when he's not have melt down's!!). He is very inquisitive and asks the most hilarious questions. I said to Darren just the other day, how FUN this age is. I can actually have a conversation with Conor. He is so helpful around the house, always asking to be given a job to do...but it HAS to be something he WANTS to do! Not pick up toys or clean up his mess, but something like wash the dishes ( splash in the sink and get water all over the kitchen) sweep the floor ( spread the pile of dirt I just swept all over the floor) or make the bed ( throw pillows and blankets on the floor, then throw them back on the bed!). But as I said this is a FUN age.
Aidan - wow, nearly walking!! He walks holding our hands and around furniture. He crawls like lightening and can climb from the floor to the ceiling in the time it takes me to walk across the room! He loves to climb up on things. He is into everything and won't be made to sit still for a minute. As Conor says "we're in BIG TROUBLE when when aidan starts walking!"


We bought a trailer for our bikes and have gone on some great bike rides. I love the trailer because it comes off and is a double stroller. It is fully enclosed as well, so it allows us to get out more, and go farther. Calgary is fantastic. You can go anywhere in the city on the bike trails. Yesterday we rode downtown, ate our picnic then walked around the city a little, stopped again for a picnic and then rode back home. The river trails are just beautiful and it’s so easy to forget you are in the city. Lots of parkland, river and trees. We were gone all day. The best thing about the trailer/stroller is that although we were out all day, Conor never came in contact with anyone! Sounds mean, I know, but it’s how we live. He did get out and run around where there wasn't anyone around or sit on a bench to eat ice cream. Hopefully it wont' be too long before he can do a little more. We are not going to the amusement park today as planned. This little bout of poops has set us back a little. Although cultures were taken, and we are pretty certain it is GVH and NOT something contagious, I wouldn't want to take the chance and bring him around a group of immunosuppressed kids. I would be pretty upset if another mom did the same with her child - not knowing for sure what was going on. Conor didn't know about the park anyway, so he won't be upset about not going. Finger's crossed we'll get to NEMO this week as planned.


It is a busy week with Bone Marrow Aspiration tomorrow. DAY 60!! Can you believe that? Day 60 already. Man how time flies huh? He has a dental appointment on the 24th for day surgery. Possibly clinic today. I have to call and find out if Dr. Lewis wants to see Conor or not. IVIG has been moved to every 3 weeks, so we aren't getting that this week. Next week I think. I will update today if there is anything new.

Darren and I would like to thank everyone involved in the fundraiser in Newfoundland over the past few months. I don’t know where to start, so I’ll just begin by thanking Harry for donating the watercolour painting. Thank you to everyone involved in the ticket selling and for organizing this. Harry and Francie, Carly and Jim, Anne, Rose, Brain and Helen, Nan Ford, all the of Ford and Murphy family! Thank you all so much!! We really appreciate your support - now and always.


Conor and I are heading out shortly to buy some balloons. I explained him about Colby and thought it would be nice to send him some balloons with messages printed inside them. We are going to let them go down by the river. Conor had a hard time understanding what happened with Colby, and honestly I had no idea what to say to him. I explained as much as I thought he could absorb and told him the different beliefs that people have when it comes to death. When I was finished I asked him if he had any questions. He said no, but went on to combine a few of the explanations I gave him and said "mommy, I think Colby is an angel flying in the clouds looking down and helping to make other little boys like me all better".


Kristy

Thursday, June 12, 2003 10:29 AM CDT

Hi. There isn't much to update lately. Things with Conor are going very well and he continues to grow stronger each day. He is full of energy and humour. Still no news on the test results and want to assure everyone that if there isn't an update, its because there isn't much to update, and as soon as we have some results back I will post them. We are so very fortunate that Conor is doing so well and continues to amaze us all with his stength and beating the crap out of this horrible disease.

We did get the go ahead for Conor to attend some cancer kids related activities. One is going to a movie. NEMO. It is closed to the public and open only to immuonosuppressed kids. I am SO Looking forward to that. The second is an amusement park here that will be closed to the public as well and all the kiddie rides will be open for COnor to ride. That should be a wonderful day too! I can't wait to see conor's face, hear his laugh, see the joy in his eyes when we do something so everyday normal that he has been unable to do for so long. I can even relax (a little!) and feel comforted in knowing that I won't be the only mother armed with my antibacterial wipes cleaning everything in sight!! I might even appear normal.

Now for the reason I decided to update today. I don't really have the words to express what I would like to say the Cole family with the loss of their son, Colby. I simply cannot voice what I feel. I would like you to visit Colby's page and offer his parents, and family your support. Beautiful, strong, courageous Colby lost his fight with JMML early this morning and his family could use your support, thoughts and prayers.
http://caringbridge.org/pa/colby

Celebrate your children today.
Kristy

Thursday, June 5, 2003 12:07 AM CDT

Clinic visit again yesterday. Nothing much new to report. Still waiting on tests...should be early next week sometime. Where have I heard THAT before?? Sample was sent yesterday. They are going to do a day 60 marrow as well. That's on the 17th of June.

Conor had a dental appointment as well. Cavities in ALL his molars. They will have to be filled sometime soon. The dentist has to speak to the oncologist first to figure out a good time for it. It will have to be done udner general anesthetic. As GREAT as he was at the dentist yesterday (and he was GREAT!!) I really doubt he will sit still for ANY of 4 fillings!

Conor is doing really well. Getting back to himself which is just wonderful to see. Though it is pretty hard to entertian an immunosupressed child in a 13th floor 2 bedroom apartment! We do go outside a bit, once he's out its great, its getting him there that's usually hard.

Sorry my updates have been few and far between but there hasn't been much to report. I guess I am a little tired of waiting. Waiting for answers. Before the transplant it was chemo, waiting for fever, admit, recover, chemo, get to transplant. There was always transplant down the road, it was a goal, a destination. It was were we had to go to get Conor better, it was the light at the end of the tunnel. Well, we got there. We've been there, done THAT. Now what?? We wait? We waited for engraftment, that came and went with little or no recognition. No fanfare at all. Just 'sure, but who's cells are they?' NOT what I expected. Despite anyone's feelings to what MAY or MAY NOT be going on inside Conor, he did exceptionally well with this transplant. He is an amazing boy. I am certain he is 100% Aidan's cells and all we get is 'just wait and see'. its so frustrating. So he's engrafted, now we wait for what? for day 100, the point where we can say 'ok, he's doing well, let's go home'. Then what? we wait again...for more tests always holding our breath. After 1 year its ok, things look good. Then 2 years, better....5 years...then can we breath? WIll it come back? Will he get to just live his life? When does the waiting end? As far as I am concerned this should all be behind us, the hard part SHOULD be over. It seems like now its just beginning.

I am so proud of conor, so proud of aidan, so AMAZED by how well he's done, I just want recongintion of that. CONFIRMATION of that. I want my son to start looking forward, not standing still waiting to be told its ok to just be a kid.

Monday, June 2, 2003 10:10 PM CDT

Just a quick update that I meant to do since Friday. Conor's tests are being done again, his bone marrow was sent to Minneapplis. I got some of the detail wrong on my last update. The test was done here 4 times and each time they looked at the same 8 markers. This lab they are sending it to now, will look at 30 markers. Hopefully we will know something by the end of the week.

Things are going well. We are staying close to home and enjoying being together. Adjusting to this new normal that is now our lives. Its hard NOT doing things, but we are learing new ways to have fun and not drive each other crazy! I apologize to everyone who's been trying to get in touch with us, we've been pretty out of touch with everyone lately and really just need time to be together and figure this all out. Its so scary for us know that everyday normal things can put conor's health at risk. It will be another few months before things settle enough for us to relax even a little. Please don't give up on us though!! Please continue to keep in touch, it won't always be this way....

kristy

Wednesday, May 28, 2003 2:15 PM CDT

Well Conor and Aidan are such a perfect match that even after performing the dna testing 8 times, they are unable to tell whose cells are growing in Conor! Dr. Lewis has been in touch with other labs and is looking into other tests or tests that are preformed differntly or look at other aspects of the dna, but right now, we still don't have any answers. He is cutting back the CSA by 25nd will wean conor off entirely in the next month to see if we can induce GVH to get an idea that way whose cells are growimg. But my feeling is we won't see any b/c they are so closely matched. Dr. Lewis agreed when I asked him about that. He said he really doesn't expect to see it at all. Even conor's IVIG (helps with immunity and gvhd) is less frequent. They will go by levels and just give as needed not routinely.
I had been concerned about an increase in one of conor's blood levels his metamylocytes, his dr. is not concerned as he said he expects to see that in the recoving marrow. However, he did say that if conor's WBC rose about 10 and his monocytes increased he would be concerned about relapse because those are two of the diagnostic criteria for JMML. Both were increased today. wbc 13.5 and mono's .5. BUT Conor has NO blasts present and the trisomy 8 that was present before transplant is no longer there. basically we still know nothing. To me, it all looks good, more 's than -'s, but what do I know??
kristy

Sunday, May 25, 2003 5:14 PM CDT

Sorry I've taken so long to update, its just there isn't much to update on. We haven't any news yet on the tests other than what I updated on Wednesday. We have bascially been hanging out around the house and trying to get out and do things together. we are pretty limited on where we can go and what we can do, and conor gets pretty upset with having to stay in the stroller and not given any freedom, so he wants to stay inside where he is not told NO! so much. On thursday we walked for 5 hours. All along the river, downtown, around downtown and home again. It was so nice, conor had alot of fun taking in the sites, the river, and just being outside. Its a little challenging now when we go out because we have to be so prepared food wise. Conor is not able to eat in any restaunts, or eat foods that are not freshly prepared at home. So grabbing something to eat is out of the question. I ended up runnig into a grocery store and picking up a prepackaged snack for conor and darren and I waited until we got home to eat...boy were we hungry! Its a great diet though, walk 5 hours in the hot sun and don't eat. A few more days of that and I'll be back into my pre aidan cloths!

I spent a small fortune at the grocery store yesterday on stuff that is portable and will not spoil. I have cooler bags for other stuff, but man, Conor is so picky I usually go through 3 meals before he eats even a few bites of something. I really don't mind as long as he eats. If he asks for it, he gets it, if he eats one bite, I am happy. Our grocery bills are pretty crazy, but once conor starts to find what he likes it should calm down.

On friday we had a picnic outside and spent the afternoon rollerblading and walking along the river again. That was alot of fun. I admit, darren and I cheated by using the strollers to hold on to..I don't think I could rollerblade without one now. Its not as easy as it looks.
yesterday we tried to go out again, but conor wanted no part of it. He screamed for 20 minutes straight, then when I let him out of the stroller he screamed and fought and screamed and yelled EVERYONE was staring at us...I wanted to just scream at them not to be so insensitive, if they only knew what he had been through these past few weeks they wouldn't be looking at him or us with that "MY kids will never behave that way" look. Conor was upset and he had worked himself up so much, he couldn't calm down. He kept saying to himself "ok, I'm calmed down now..." only to start screaming again. I felt really bad because he had told us he didn't want to go, but we figured he'd be ok once we got outside, he usually is. But he wasn't. He just wanted to be home, lay down and watch a movie. I think sometimes we forget what he has been through and is going through. We forget that although he handled things amazingly well, he is still not 100 I think we want so desperatley to have conor be conor again, we push him too hard to be normal. We have decided to let him be our guide on telling us what he is capable of doing. If he says he doesn't want to go out, then we won't push. Its just so wonderful to see him up running, laughing, playing and being a kid. It must really suck to want to do those things and not be able to do them without tiring easy. I think he pushes himself alot as well. Plus not being able to touch anything or go in anywhere has got to be hard on him. He wanted to throw rocks in the river the other day, but wasn't allowed. He cried pretty hard over that one. He's not even able to play in sand or the grass. He's pretty good and understands most of the time, but its easy to see he finds it hard and can't really comprehend the reasons why. he sees other kids being kids and playing in the dirt or at the park and going ot mcdonld's...besides getting him to take his meds that's the hardest part.

There is a 'Bob the Builder' live show is coming to calgary this week, and I think 'Auther' is too, but Conor is not able to go to either. I want so badly to take him, but to be around all those kids is just to much of a risk. If we had found out about the Bob show early I might have been able to find a way to get box seats or something less crowed than general seating, but its only 2 days away. I know something like that would be great for him. I know there will be lots of shows, lots of time to do things, but its now that I want to do something to put a smile on his face. He is so upset alot of the time. so bored with doing the same things all day.

One plus of it all though that I notice while in hospital and is continuing,is he has developed alot skills he didn't have time to master in the past because he was too busy climbing and jumping and running around. He is mastering things like cutting, tracing, writing letters and numbers, and reading, he even loves to color and concentrates really hard on staying inside the lines. I am so amazed that at this hard time in his life he has been able to develop and grow. I am looking forward to putting him in preschool. There is one here that is for immosuprressed kids and their siblings. I hope he is able to go. I know he needs it, and will enjoy it, a little bit of something just for him. No mommy and daddy or dr.'s or nurses hovering over him. Plus he'll get to be with other boys and girls and make friends. They have feild trips and gym classes as well. We are only here another 2 months, so hopefully he can go at least once a week.

We go to clinic tomrrow for IVIG, and more bloodwork. He goes to clinic on Monday, wednesday and friday. Monday is IVIG and so far he has only needed a bolus of fluids once. He is eating and drinking ok, but tends to through up if he eats alot. I noticed dairy seems to bother his stomach so we are trying to avoid that. His weight is down, and we are trying to get that back up somehow.

Aidan is doing great. He is almost walking and stands unassisted for seconds at a time. He has alot of words in his vabulary and loves to eat everything. He is always, always, full of smiles and giggles. He is an exceptional baby. Makes me wonder what he's going to be like as a teenager! I might be in for trouble then!

Thank you very much to *mickey* for the postcards from walt disney world! conor loved getting them in the mail. He loves getting mail and post cards.

Kristy

P.S
If you are trying to reach us and are not getting an answer, we dont' have an answering machine, so the best thing to do is email us. I try to check that a few times a week.
thanks!

Wednesday, May 21, 2003 1:18 PM CDT

Just a quick update.Not all tests are back yet but one of the test came back VERY GOOD. The chromosomal abnormality that conor had at diagnosis and throughout treatment...IS GONE. That is a good sign of test results to come!
kristy

Tuesday, May 20, 2003 2:16 PM CDT

Hi, no word yet on the test results, but have been DISCHARGED!! we are just (finally!) getting conor's legs xrayed and we are on our way home to the apartment. Lots of meds at home ( conor is getting better taking them), and clinic visits daily for the next week or so ....but we are out of here. Conor spent the last two nights at home, and it was wonderful. Yesterday when we left the hospital he said "its a beautiful sunshiny day, the grass is all green, the flowers are growing up from the ground, its so pretty out" Guess he was glad to be out as well.
I will update as soon as we get those results.
thanks for all your support, thoughts and prayers.
kristy

Sunday, May 18, 2003 0:17 AM CDT

Before you have children you have all these ideals and strategies for how you are going to parent that child. You have a list of things you will never do, you promise yourself they will wear cloth diapers, sleep through the night at one week, eat healthy, listen well, be happy, and you figure you have seen lots of people do it all wrong and think you have the formula for working it out right. Then this child is placed in your arms and all those plans you had for raising the perfect child just go right out the window. You realize your child is already perfect, all you think all you have to do is love this magnificant little person and everything will be just fine. You do that. You love that child with EVERYTHIHG you are. That child defines who you are as a person and makes your life whole. You do your best providing for your child. You do what you can to teach that child right and wrong. you are firm, loving, caring and you make every day fun. You constantly invent new things to do to make each day a new adventure. You start to see the world through your childs eyes and you see its a pretty neat place full of things to do and explore. Your child opens your eyes and your heart to the world. You promise yourself you will protect that child from all the things you know are there that your child cannot yet see in his innoccence. And from the things you fear most. Like losing that child or something bad happening to him or to you. You do whatever you can to let him know he is the most important person in your life. You talk to him like a person, you hold his hand when things scare him, or just to let him know you are there. you do whatever you can to be the best parent you know how. You breastfeed, you do all your research on immunizations, and college funds to make sure you start out right. You play mozart to your pregnent belly and sing lullabies and make up stories. You promise that child the world.
Then one day, despite all your efforts you find yourself stuck in a small irregular shaped room fighting with your child for his life. Pumping his small body full of posions and bringing him near death to make him well. You find yourself using emotional manipulation, yelling, pleading, screaming crying, ANYTHING to get him to take the medicines that will help cure him of a horrible, monsterous disease that has been stealing his innoccence and wearing away at the light in his eyes. He is tired, he just wants to be that little boy running around the back yard, playing in the dirt, going to the park, making train tracks in the snow and visiting the library with mommy on wednesday mornings. He wants to be the kid with the curly hair and the mischeiveious eyes. He wants to be home, and so does his mommy and daddy and his brother. But he doesn't understand, He can't understand that this VILE, disguisting medicine is going to make him better. He thinks the hospital is whats making him sick. You make the best of it, you see the postive outcome down the road, you know he will beat this. you know all this fight he is full of is what is getting him through this. You know his strength is amazing and that he is going to be just fine. you want him home. You want him well, you want him to just be a 3 year old boy again. You want to pick him up, beat the crap out of anyone that makes you force these things on him and run. Run somewhere where no one knows him, or you and doesn't know he is sick and you think that will make it all better. If noone knows, then it won't be true. But you don't. You cry and beg and plead, and force his medicines on him so he can go home. You say things you never dreamt you would say to your child ever, especially not when all you want to do is just hold him and hold him and hold him and NEVER let him go. You see past his tears, his fear, his anger and confusion. You bear the burden of knowing what if and are thankful he is too young to understand and you push on, doing the best you can.
Then you lay down next to him as he sleeps the exhausted sleep of a child who fought with you for 4 hours taking meds and throwing them up and taking them again. Sleeping the sleep of a child dreaming of trains and of being home. You lay down next to him. You hold his hand and you whisper that tomrrow everything will be better and you don't know if that will be true or who you are really saying it to. but you have to say it, have to believe it because you just don't know what else to do.

Friday, May 16, 2003 7:14 PM CDT

*****CHECK OUT THE NEW PICTURES*****



Hi Just wanted to let you all know that we haven't heard anything on the test results yet. Looks like Tuesday now as this is a long weekend here.
Conor is doing fantastic and has been out on passes each day. Yesterday for 6 hours today for 10. He is starting to eat more and more and drinking lots. If this continues we will be out pretty soon. He is learning to swallow pills and is taking most of his meds orally now. Tonight we start the CSA in oral form....wish us LUCK.
Have a wonderful weekend.
Kristy

Thursday, May 15, 2003 8:17 AM CDT

Day 24

Things are still going well. We had our third pass yesterday. We didn't really go anywhere, just hung out around here, conor went to the gift shop and bought presents for himself, Aidan and his Nana. He had alot of fun doing that. He saw flowers in the window when we walked past the other day and has been asking ever since to buy them for his nana. He was so happy to finaly do it. He bought aidan a ballon, a book with baby animals and a rubber duck and put it all in a gift bag full of smiley faces. He is so thoughtful and loves to make others happy.
after that we went for a little walk outside the hospital and sat on bench and read stories. We had a little picnic where conor ate cheese whiz and crankers (2!) and drank some apple juice. Later he said "mom, that was the best picnic we ever did have!" we had a really nice time just hanging out.
He was so excited when his nana came by with aidan so he could give them their gifts. Aidan was so happy with his he squealled and clapped at all the baby animals and screamed when conor tried to take the book to read to him. Aidan is so strong, it is nearly impossible to get anything out of his hands when he doesn't want to let go.
We got some pictures back yesterday from our last two outtings, I willl post them as soon as I can . Conor looks fantastic in them. He is looking more and more like himself lately. Less sick. I think getting out has done him so much good. He finds the sun a little bright, but is getting more used to it.
One concern I do have is he keeps saying his knee hurts and has this funny kind of walk. No one seems to be overly concerned about. I keep bringing it up to the docs who say its probally this or that and that's it. if it persists I will push for more tests. It almost seems like a nerve thing the way he favors the other leg, and the way his foot doesn't flex like it should. He is saying his knee hurts, but it looks like his hip is what is bothering him... I wonder if they maybe irritated his SI with all the BMA's and he is having nerve pain down his leg....hopefully its nothing. He did complian of knee pain even before diagnosis and has on and off since, but he had never limped or favored either leg.
His weight is still doing well, he was 17.6 when he was admitted, and now is 16.0. That is not a big weight loss, considering everything. I think once he startes eating, it will all come back pretty fast. His counts are great. His agc was up over 1500 yesteday and has been aroaund there for 3 days. His platelets are up to 95. which is incredible as far as i am concerned. In all, he is doing much much better than we all expected and everyone is thrilled. We should get the BMA results today or tomrrow, then I can beat Dr. Lewis over the head with conor's pool noodle for worrying us needlessly, but hey - that could be fun! I am sure he wants to be wrong about his *feeling* just as much as we do ( and I KNOW he's wrong).
The rest of us are doing good too. darren finds time almost everyday to run and is loving that. I am really enjoying the freedom of driving. My circle is widening more and more and I will venture farther everyday. moving out of the saftet net of the hospital to home route. I LOVE the drive from the apartment to here. I turn up the music ( Bon Jovi - One wild night - the greatest CD EVER!!! yes, I am a HUGE Bon Jovi fan...as is conor). Anyway, I turn it up and just go. There is one particular section of the drive that I just love, making the corner to the turn off for the hospital. Getting there is so fun. I forget about how hard it was to leave Aidan behind and I forget where I am going and just enjoy having that time to myself. I don't know how I'd survive this without that drive and Bon Jovi. Its amazing how music can get you through even the toughest times. It gives me the excuse to let go when I need to. Some of conor's favorite songs are on that CD and I love to play "Runaway" and think of him standing on a chair singing it or "its my life" when he would dance around the kitchen with Brooklyn singing. It reminds me of when things were so much simpler and gives me hope that they will be again.
Kristy

Monday, May 12, 2003 1:35 PM CDT

Day 21

WOW. Conor had a incredible jump in counts overnight. His WBC went from 1.9 yesterday to 4.6 today. His AGC went from 293 to 1394. His platelets and HBG are the same. That is one thing I forgot to mention, he hasn't needed blood or platelets in over a week. He is even making his own platelets. that is a very good thing. Platelets are the last to come in.
The TPN is being tappered and once he starts to eat, and show us he will keep eating...HE CAN GO HOME. HOME. I think we will start with overnight passes and work our way up from there. He will take the Septra 2 days a week and not three ( it does suppress marrow) and of course the penicillan daily. He is still on the antiviral and antifungal and CSA via IV until we leave. But other than that...IT LOOKS GOOD!!
Our dr. is still concerned and is waiting for the test results due back next week. Conor'########### are 24.they don't like to see any more than 10o that is mostly where the concern is coming from. But other than that, everyone is very pleased with his progress. He is doing great.
Kristy

Monday, May 12, 2003 0:17 AM CDT

Day 20
Sunday

Thank you everyone for the mother's day wishes. It was an wonderful day. Darren brought breakfast with him this morning and we all hung around and waited for conor to wake up. He finally woke at 11 am and was in a very bad mood. He usually is when he wakes up, but it didn't take him long to turn around. We were out of here by 12. It was so incredible to see him running down the hall and outta here. It was the best mommy's day ever. My first with aidan, with my 2 boys, and conor getting to go out for a few hours. And for the first time in over a week it was warm and sunny. we've been having some freak snowy cold weather here the past two weeks, but its past now and it was a beautiful day. Conor has been in hospital a month today, so the break was LONG awaited.
We went back to the apartment and had lunch then took conor outside for awhile. he kicked the soccor ball around with us, and we went for a small walk. Conor's favorite trick was to through the ball way down over the hill and make one of us go get it...its a big hill!! We didn't do anything extraordinary, which is what made it so incredible. At one point conor spotted a lady bug on the ground and bent down to look at it. Conor has always loved lady bugs and loved to pick them up and let them crawl all over his hands. He asked darren to pick it up and when he did, aidan reached for it and darren put the lady bug on aidan's hand. aidan was facinated by it and stared at it for a moment before promplty attempting to eat it!! He actually had it in his mouth. Other than that we just went back inside and hung out. All of us laying on the bed for cuddle, a little pillow fight and some trian playing.
We were very worried about our return and conor surprised us all by coming in, hoping on the bed and getting hooked up to his machine. No problems at all. I think Jenny and Melinda ( his nurses) were shocked! We all hung around and watched peter pan. Pretty soon conor fell asleep and his mystery rash appeared and disappered again. We ate a nice supper and conor woke a few hours later feeling pretty groggy. After darren and Aidan went home conor and I watched E.T. Conor really liked the movie. It was his first time seeing it. He was totally facinated by it. During the scene were E.T and Elliot are sick and surronded by all the Doctor's and machines etc. Conor started to cry. When I asked him what was wrong he told me he didn't like seeing them like that, that it made him sad to see them sick. He wanted to keep watching though and couldn't understand why E.T left Elliot. He kept asking why E.T left his friend and wanted to know the name of the planet E.T lived on. I told him E.T left because he missed his family and they came to get him. To which he replied "but now he will miss his friend". He was really into the movie, asking questions and picking up on everything.
last night conor slept in bed with me, and would not let me move him. He slept very well all night which meant I got a least 5 full hours of sleep. Wow. I havn't gotten that in a long time. Early in the morning he reached for me, hugged me tight and told me he loved me, and went back to sleep.
It was a perfect mother's day.
kristy

Saturday, May 10, 2003 4:37 PM CDT

Day 19

Just a quick note to say that the intitial bone marrow tests look good, nothing abnormal showing as of yet...however with JMML, it isn't always clear and seen in the bone marrow so they are still waiting on the other tests. The ones that take 2 weeks.... BUT so far things look good.
One other piece of good news, Conor has been afebrile for 48 hours and so now is able to discontinue the antibiotics...and GO OUT ON A PASS tomrrow for mother's day.
Nothing could make me happier right now. It is such a great gift being a mother to my two boys, and now to have Conor home for a few hours, is just a wonderful gift. I couldn't ask for more right now.
It is such a big step for him. I cried when the dr. first told me he could go.
I'll update more tomrrow.
Kristy

Friday, May 9, 2003 7:23 AM CDT

Day 18
Firstly I want to say Thank You to our friends and family in Newfoundland for the fundraiser held last weekend . Thank you to everyone who helped put it together - Karla, Donald, Karen (I am sorry if I left anyone out I still don't have alot of details about the event)- and to everyone who donated items and took the time to help us out. We really appreciate everything you've done for or family.

Things went really well yesterday with conor's bone marrow aspiration. It was scheduled for 1 pm, but at 8 am they came in and said they were ready for him! I had just woken up, conor was still sleeping. It had been a very hard night for him. He had started a new drug to treat fungal infections. His temp. kept spiking and going down so they figured they should cover all bases. This drug (amphyol?) does its job really fast and really well, its just pretty ####### the kids. can cause kidney troubles, allergic reaction, high temp. and shaking. Conor didn't have an allergic reaction, but his BP went up really high and we had to give him somethign for that. Just .1 ml of a med, but boy was it hard to get him to take it. Apparently it tastes AWFUL. We had gotten him to take tyelenol earlier for his fever - it hit 39.1 and we didn't want to take the chance of it going higher. So he was NOT happy with any more mouth meds. He kept asking to do his BP agian to see if the numbers went down. He spit out most of the med and we told him he would have to take it again, he insisted we do a BP first, and he was right! It was down. So no more meds! He was quite happy he was right. He had a really restless sleep and at some points his heart rate would go up to 180 and down again. The Dr. had a look at him and said he was doing ok and it was probally just his body adjusting after the BP med. Possibly his BP went too low and his heart was working fast to get it up...I think he was having bad dreams! I am constantly amazed at how much of medicine is pure SPECULATION. It MAY be this or it MAY be that...let's wait and see. I am learning to trust MY instincts more and more. After all this I could have a career as a medical intuitive! I am finding more and more that my initial gut feeling is right. If I just don't think too much about it, if I just take t hat first feeling and go with it I am usually right. Its the hours of saying well what if that confuse things! That is why I am so certain that conor's tests will show all donor cells. Back when conor was first diagnosed I remember hoping it would turn out to be nothing, researching all the possibilities, but I had that voice in the back of my head telling me the truth. I wouldn't listen to that voice, I didn't want to hear it. Even when I was pregnant with Aidan, I thought I was having a girl, but as sure as I was he was a girl, I was more sure that I would be proven wrong! and I was. My point is, this time I don't have that voice. I have Dr. Lewis's voice telling me to prepare for the results we DON'T want, but everything else is telling me differnt. I am trusting that.
Whew...so anyway, his test went well. I carried him across the hall wrapped in his Thomas blanket, carrying his trains, his teddy and his Thomas pillow. He was put to sleep with some "brovy milk" as they call it here and the whole thing was over in 15 minutes. Darren,Aidan and I were all there when he fell asleep and when he woke. Conor slept for awhile, but woke up early afternoon to play and had good day after all.
Last evening his BP went up again and we went through the same ordeal with the BP med, after 2 tries we finally got enough in for it to work with conor spitting it out and spraying it all over me. The nurses told me to be careful because the stuff works so well, just a few drops could cause my BP to drop...not good. So we are all pretty careful now. Next time I am wearing a gown and glasses! His antifungal med has been moved to mornings so he can be more closely monitored, so he will get that soon. His nurse told me yesterday they all refer to it as "shake and bake" b/c of the shakes associated with it and the fevers. I am hoping his BP doesn't go up again, I really don't want to have to fight over meds. The fighting is the hardest part of being here. Its the most exhuasting part of it all. He is due for tylenol before the amphyol as well, hopefully darren will be here by then. Darren is great with getting conor to take his meds.
We should have some results of the bone marrow today, but mostly we will have to wait approx. 2 weeks for answers. they have to run certain tests because of the close match that aidan and conor are. The waiting is hard mostly because we just want that confirmation of what we already know. So the doctors can stop with the 'what if' scenarios!I will let you know as soon as we do..

Kristy

Wednesday, May 7, 2003 4:39 PM CDT

Day 15

Hi all. Had our meeting with our doctor today. They decided to move the bone marrow aspiration to tomrrow and not next week. Dr. Lewis wants some answers faster so he will be putting a rush on things and we will have those answers in about a week and a half. His concern, he says is mostly just a feeling, and not anything concrete that is showing up in conor's bloodwork. He is uncomfortable with the way conor's counts didn't bottom out for long and came back so fast. AND the fact that conor has monocytes (monocytes are a concern with JMML)coming back. BUT in the same respect, those things are GOOD because of the high cell dose from aidan would mean that conor would engraft sooner. ALSO monocytes are one of the first cells they look for to see if engraftment is occuring so they WANT to see them. Basically he is basing his concerns on his feeling which is fine if it gets us concrete answers sooner, but I HAVE A FEELING TOO! And I KNOW this is all VERY VERY GOOD. He began talking about what if...and had differnt options for us to consider IF this isn't as we hope, but like I told him, I'll discuss those and think of those if they occur, not now. I don't feel a need to focus on any negatives. I never thought of this not working before, never considered it, and I am not going to start now.
conor has been getting a mysterious blotchy rash on and off each day. WE are trying to pin point it to a med or anything, but there is no consistancy. same with his temp spiking and falling. I think its all very good. Its engraftent, its skin changes, its a sign of what is going on inside. Its all very good.
He had a great day today after a hard night. He gets tired and wants to sleep and gets very vocal and aggressive with his nureses. I don't like it, but he is clearly fed up. TOday he put on his clown wig and played so well with anyone who came in. He was in a great mood. Basicaly mornings and evenings suck for him, but his afternoons are great! When he wants to sleep and some one is poiking at him - watch out! Anyway it was a nice day. He is doing remarkibly well. I am so proud of him.
Latley we sleep closer and closer, spending most nights switching from bed to bed or half way between both. We hold hands while we sleep and he always needs to be touching me. Which is great, because I always need to be touching him. Last night he woke up long enough to say "mom - I need you to do something for me" When I asked what he said " just come here and cuddle me mom" with that he put his arms around my neck, and held me so tight. I fell asleep with my head on his shoulder. I love my boy.
kristy

Monday, May 5, 2003 10:42 AM CDT

Day 14

Not much new to tell you about. Conor is doing well. He has been sleeping more lately...or so it seems. He doesn't go to sleep unitl 1 am, and has been sleeping until 12 or so in the afternoon! He gets gravol at 8 am right around when he would be waking, so it keeps him pretty out of it for awhile. He spiked a fever again last night. Everynight for the past week he has spiked, at 9:30/10:00, only to drop by midnight. He goes as low as 36 while he is asleep. They are going to start a new med just in case he is developing something. He is on a pretty broad spectrum antibiotic, as well as the penicillan so they will start an antifungal to cover all basis. But other than that he is doing fine. We may discontinue the morphine basal today as he is only getting 2mls an hour and hasn't needed a bolus in 3 days. He hasn't complained of mouth pain, or any pain since he had that headache, so it makes sense to stop it and see how things go.
I asked for physio to come by today because Conor really needs an outlet of his energy. One plus to being stuck in the room is that his fine motor skills have really taken off. He has learned to color very well, he cuts out shapes, and pays much closer attention to detail. He was always working so ####### being up and active, he really didn't find time to stuff he had to sit and work at. He is doing really well with all that now. He'll sit and read a book. He looks at the pictures and gets an idea what is going on and tells me the story. He is quite good at it. If it is a book he knows well, he pretty much *reads* it from memory. His favorite thing right now is to get mail in his mail box. He is having lots of fun with that. Anyway - about physio! Hopefully we can find ways for him to get out some of his feelings by being more active. Jumping or SOMETHING. the other night he was jumping on the bed, on the floor, doing somersaults, he needs and outlet. He is very angry and very verbal about it. you can tell he needs to release it all somehow. He usually does it by being active, running, riding his bike, just being a crazy kid, but theres no room here and he is hooked up to the machine 24/7 so there really isn't the ability to do much too agresively. A trampoline would be great! Don't know if a kid with low platelets would be allowed one, but it won't hurt to ask! Beats jumping on the bed.
He is very sensitive about alot of stuff and has *safe zones* no one can enter or he gets pretty miffed. Mostly its his Thomas blanket he sleeps in. If ANYTHING is laid on it by anyone he screams "NOTHING ON MY THOMAS BLANKET!!!" . He is really trying had to maintain so much of his self here, and struggling to control anything he can. It is so easy to see, he is feeling invaded all the time. He often asks just to be left alone for a few minutes, and is always telling the nurses to "GO AWAY!" as sooon as they walk in. Even his favorite ones. Usually I give him the space he needs and he is ok after a few minutes alone. He knows what he needs and I try and give it to him. If something has to be done, we try and get it all out of the way at once so he can have periods of just conor time. Though we do stress to the staff that they don't leave when he tells them to, he has to know that they are here to do a job, which is help him get better and he can't tell them what to do. We tell him the things he can control and what he has a say in, and what choices he has (he always has a choice in everything be it what arm or leg his BP is taken on,) he knows it has to be done and he has some say in how. Its working pretty good.

I have been staying here more and more during the day because he seems to want mommy all the time. which is fine. If Aidan were able to be here all the time, I'd never leave. Oh and if there were a decent shower! WHY there isn't I have no idea, it would make EVERYBODY happier. I know I feel 1000etter after I shower, and if I didn't have to go home to do it, conor would be much happier too. He always tells me he hates it when I leave him and he misses me so much when I am gone and tells me never to leave him again. "I wanted you and you weren't here mom....".I miss Aidan so much too. It is getting harder instead of easier to leave him. I just want so badly to spend a day playing with him,doing nothing just hanging out with him. He is such an amazing boy. He has quite a vocabular of words too. Mom, Dad, cookie, duck, quack, cat, fish, conor, ball...oh - and sponge bob! He looks at things and tries to say what it is. He is very smart. Crawling everywhere, trying so hard to walk, throws a ball, is eating EVERYTHING he loves garlic bread, and croutons. He is so, so, so beautiful. I feel so overwhelmed when I look at him. I can't believe I have these two, beautiful, perfect boys who share this incredible bond. I am so proud to be their mom. I can't wait until we are home all four of us snuggled in bed together eating pizza and having a family movie night. I want to be sleeping in bed will all my boys....
kristy

Saturday, May 3, 2003 4:59 PM CDT

*********** check out the new pictures*******



Day 12

I feel much better about everything today after talking with other parents who've been through this, and after having my questions answered by our doctor. Conor's wbc today is the same, but his agc has doubled. I think it is a VERY positive sign that conor's counts have come back earlier. After each of his 'routine' chemo in the past his counts took 3-4 weeks to return. This time it took 10 days. To me, that shows that it is Aidan's super marrow at work. 1. because aidan is a baby and his cells are designed to work faster, and 2. because they had such a high cell dose. Dr. Lewis agreed with me on all this, but is still being VERY hesitant to say wether all this is good or bad. He said it could mean anything at this point. I understand it is his job as our doctor to get things accurate before building our hopes. BUT I KNOW THAT THESE ARE AIDAN'S CELLS GROWING. I KNOW IT!
Conor is feeling so much better. Last night he was out of control full of energy. Jumping on the bed, trying to do somersaults and just plain being a crazy kid. After a good nights solid sleep he was up to it all again today. The way he is sleeping so soundly shows me his body is hard at work and he is on his way to a full recovery. Thank you everyone at JMML Support for your words of encouragement and for sharing your insight. Thanks for your emails and calls everyone. And to OctMoms as always - thanks for being there!!
A BIG BIG thank you to the 4 H club for selecting Conor for your Calf sale fundraiser. WOW. WOW. Thank you. THANK YOU to EVERYONE invovled. You have helped make this difficult time a little easier on our family by allowing us to be toghether. We are so greatful. To Mackenzie Stewart for raising the calf, thank you and for all your involvement. To Joan Stone for contacting us, for everything I can't wait for Conor to meet you ALL. And thank you Carolyn (
AGAIN!!)for attending the sale on our behalf. Thank you for being there for us always. A heartfelt thank you to all the students in Wetaskiwin for sending cards, letters and pictures to conor. Last night was so much fun reading all the letters and cards. We are haning them all up in conor's room. He has a small mail box (like the one on blue's clues) that he loves to get mail in. He won it at bingo on wednesday. Even the nurses have taken to leaving him mail every morning. Yesterday he was thrilled to see so much mail sitting UNDER mailbox! thank you. Thank you to Christine, Gary and Nicholas for taking care of things at home and delivering the mail. Sorry I missed you! Next time pop by the hospital and wave at Conor through the glass :). And Grandma Pacholka - we recieved the gift from your church last week as I am sure dad has told you. But please pass on our thanks.
I hope I havent' forgotten anyone. If I have, I am so sorry. My mind is in a million places today. but know you are not really forgotten - your thoughfulness and support mean the world to all of us.
Kristy

Friday, May 2, 2003 1:52 PM CDT

Day 11

Not sure what is happening but something is...Today, His counts are UP. that's right. UP. His WBC is .4
and his AGC is 20....the docs say it is too soon to tell what is happening.
They say they haven't seen any gvhd yet...and they like to see a little so
they aren't sure if they are conor's cells or aidan's....Bone marrow
aspiration is not until day 21. that's 10 days away. No way to tell anything
for sure until that is done. If things continue to rise they will do a bma
early to see what is going on. My gut reaction was these are aidan's cells
and not conor's, but now my fears are taking over and I am scared. I am
trying not to let that fear get to me. He is going to be just fine. These are
Aidan's cells. Conor is engrafting and the fact that we haven't seen any gvhd
is most likely because his cyclosporine levels were so high...please keep
conor in your thoughts and prayers and keep that "grow cells grow" chant going!
Conor is doing really well. He is eating soup right now and drinking sips of hot chocolate. He's a little irritable, but doing good. David Peltier and Jamie Sale were just here. they are canadian pairs figure skaters who won gold in the olympics...yes the ones who got silver, then gold. I was so excited to meet them and conor screamed so loudly and held the door shut they couldn't come in! Oh well. It would've been nice to meet them. Mostly importanly he feels well enough to scream, run to the door and hold it shut. That's what really counts.
Kristy

Friday, May 2, 2003 0:17 AM CDT

Day 10

Thursday
Sorry I didn't update for a few days.Things really haven't changed much. conor is doing great. His mouth sores seemed to have peaked and aren't getting any worse, they are causing him pain but we are able to control it by reading him and admistering morphine as needed
Last night was a little scary. He was reading me stories, in a great mood and very happy, I left the room for 2 minutes to get a drink and when I came back he was trying to throw up, crying his neck (he meant his throat)hurt and suddenly screamed, "my head, my head, my head hurts, there is a staple in it, its sharp, get it out, get it out". He even asked for the nurse and dr. to come in. I called in His nurse, Mindy who got the Doctor. He was talking, he wasn't doing anything strange, his vitals were all perfect - same as earlier in the day so he wasn't too concerned, but ran off to check Conor's platelets from that morning to make sure they weren't low. If so they would be worried about a small bleed...but luckily that was not the case. His platelets were fine. Conor lay on the bed telling everyone to be quiet, no talking and turn off the lights. He had a cool cloth on his head and just lay there. I had to call Aidan twice - Conor kept saying that the only thing that would make it better was aidan. He needed aidan to hug and kiss him. He cried for aidan for a long time. he refused to take tylenol, so they gave him a bolus of morphine for the pain and within minutes he was asleep. He has been fine all day. No more complaints of a headache. The onologist that saw him this morning said his Cyclosporine level was way higher than it should be and ordered it reduced. It seems to have done the trick. He isn't complaining of headach or skin irritation like he was. He didn't get nauseous from it today either.
Tonight he was a little irritable and fought getting his bath, but once in, stayed there for over an hour. He got out and pretty much changed his own bandage! He's been eating little bites of stuff again and drink sips throughout the day. So far he has eaten at least a bite of something everyday. Not much, but something.
yesterday he made everyone laugh by sitting in the basin I was using to wash him in bed and sticking his feet inside. He called out the door ot all the nurses to come look at him. Even patients from other rooms came to peek at him. He loves to make everyone laugh. His nurse last night said "Its great to see a kid being a kid around here - you don't get to see it that often" . I am so glad he is still being a kid.
He is doing so much better than we expected.Our doctor told us yesterday they are very pleased with how things are going.That they are seeing all the things they hope to see at the right times and that it is happening in a good way. All the right signs are there. His white count took a long time going down initally, but it is staying down now. At the time of transplant, he had a wbc, but no leukocytes, which we were told was very good.
I am so proud of my little man with his bouncy ball head....
kristy

Tuesday, April 29, 2003 9:01 AM CDT

Day 8

Can you believe it? Our little fighter is doing just that...fighting lots! Fighting everyone and everything. he is a little fed up, tired and stir crazy. He definately has his good moments too, but with a pretty low HGB, a nonexistant WBC, being picked at 24 hours a day, who can blame him? Yesterday we played crafts,trains, games on the computer and Darren read him lots of stories. Other than that he napped in between. He needs it. be up, he wants to play, he TRIES to do too much. The doctors said yesterday, at this point, most kids don't want to be up, they have no interest in playing, in watching tv, in being out of bed...Not Conor! He may be feeling miserable, but he still tries to make the most of his days. When he is overly tired we can sure tell, but then he knows it too. He will let us know, get in bed, nap and Despite his moodiness, he is still having fun when he can, he doesn't want to let this get to him! He is getting blood today and I just KNOW he needs it and will be a different boy when its all over. I am facinated wondering which kind they will give him. Before transplant he was AB, aidan is B, conor is still AB (should be anyway), but if Aidan is B, and there are those cells floating around in there...there won't THEY react to A in the AB? There is so much of this I just don't understand!!
Anyway, Conor is doing great. The breathing seems to have resolved itself. He is spiking fevers, but they go up and down pretty quickly. I expect those, everyone does. Its his body working like mad to grow all those new cells!! And he has started losing his hair. Its everywhere! He seems pretty upset about that and wouldn't let us cut it or shave it. It must be so hard for him not really understanding. Especially since EVERYONE comments on his hair all the time. "look at those curls", " you have such beautiful hair" "your hair is adorable"....yesterday we were trying to convince him to cut it, and he was getting very upset. Finally he told me he was upset he was loosing it, that he loved his hair. "I love my hair mom, don't cut it". I explained to him that it would grow back, that I loved his hair too, that I loved HIM. if he was green, if he lost all his hair forever, if he grew purple spots, or blue hair, no matter what happened - I would still love him just as much. We all would. He didn't say much after that and when he was asleep I cut it (ok -Hacked it) pretty short. but its still everywhere. At one point, he woke up and this was our conversation:
conor "mom what are you doing?
Me "um...nothing"
conor " ARE those scissors? "
me " ummmm.....yeah:
Conor "what are you doing?"
me "I just cutting your hair so it dosen't get in your eyes or mouth:
conor In that impossibly cute crackly voice that kids have when they aren't fully awake " thanks mom"
ten minutes later......
conor "that's enough now mom"
Its a pretty bad cut. Maybe today I can fix it up or after it is washed it will looke better. Hopefully it will just fall out. ALL of it. He looks so different. he looks sick the way it is now. I guess thats the hardest part to accept. Knowing he was sick and seeing it are two differnt things. I have been thinking of it as an "out with the old, in with the new" kinda thing. he's Healing, he is ridding himself of what once was, his body is growing all new cells, and with that, his hair will grow. Watching his hair grow back will be like watching those cells grow. Something we can SEE to know his body is doing what it needs to.
He was complaining a headache yesterday, which hopefully will be gone today. His skin is super sensitive and sometimes the slightest touch or sensation on it, is too much for him. Its the rough part now, but he will get through this. We are all here to help him do that.
Kristy

Sunday, April 27, 2003 11:40 AM CDT

Day +6

What a day yesterday!!! It all started with my noticing Conor was breathing a little fast and shallow on Friday evening. I counted his resps. at 58. I called in the nurse who checked and said yeah, he is breathing pretty fast. She got him at about 47. She checked his vitals, temp. BP, pulse ox, all ok. He was having a really restless sleep and I knew something was up, so did the nurses, but NOTHING was presenting itself. His lungs were clear and we decided to just watch him. A few hours later there was still no change, nothing was worse either, but I asked for the dr. to come examine him. This was around 6 am. Dr. couldn't find anything either but since he was just the resident on call for the hosp. and not the oncology on call he wanted the onc.resident to look at him. He got in at about 7 and agreed something was going on and decided to order ALL the tests. The oncolgist got in around 8, and things really got moving. IV anitibiotics were started, chest xray, CT, and lung scope were ordered. At about 10 am he spiked a fever, and had a reaction to one of the meds. Had to be given benydryl. That turned out ok. His fever went away shortly without any tylenol etc. His chest xray went really well and nothing showed up. His CT was clear and we actually had a lot of fun with him during that one. I was on one end, darren on the other and we had a "tug of war" and it went really fast. Conor kept crying for aidan, so we put a pic of him inside the CT machine for conor to see. Back in the room, his resp. was still high and his, pulse ox was up and down, and heart rate a little high. WE had oxygen near him all day and still do. He was brought to the OR at about 6 for the scope and washing of his lungs. EVerything came back clear. A little mucous, but no fugus or bacteria detectable. The initial tests for ###, and other pneumonias were all negative, we are still waiting cultures etc. but so far so good. He slept well last night, is on a morphine pump that we give him as needed (not often) as his mouth sores are starting and that helps. Blood cultures were also taken and nothing showed up yet. Everything else seems normal. He is just breathing fast. STill at about 56 this morning. He got platelets last night as they had them ordered for the OR if needed and decided to "top him up" anyway as he was at 50 and would probally need them today anyway. Yesterday his counts bottomed. His WBC and AGC anyway. YEAH!! no where to go but up now. Nothing to grow but AIDAN's SUPER Marrow. Soon to be CONOR'S!!! Could all this be due to that?? who knows? but everything is covered and the dr.'s are doing EVERYTHING they can. Loooking at all options. Conor is in good spirits, a little listless from sitting around with a pump on rickety wheels that can't go too fast, and his HBG is low and will most likely be transfused tonight or tomrrow. He is at 88. they transfuse at 80.
Wish him luck and keep him in your thoughts and prayers. Things are happening now, lets just hope they go as smoothly as possible.
We had FREAK snowstorm here yesterday that put the city a stop all day. 40 cm of snow, the day before was 20 degrees and sunny. Today there are snowbanks! I Drove home this morning with aidan planning to stay for a few hours, but turned around and came back to the hospital b/c it looks like its starting to storm again. I've never driven in snow and was pretty nervous! but I got here. Much to the dismay of EVERYONE behind me. I was was going 10 under the speed limit alll the way and cars were flying past me! Why don;'t people slow down in bad weather?? they all drive like my BROTHER!! Sorry Donald - but you ARE a crazy driver !
I'll let you all know more on how conor is doing as soon as I can. Keep chanting "GROW CELLS GROW!!"
Kristy

Saturday, April 26, 2003 0:24 AM CDT

Day 4 Things are still going very well. Conor is doing amazing, today he polished off 2 milkshakes a bag of chips and ahandful of cheesies.We are still having a hard time with his mouth care, he fights so hard that he often brings up whatever he has eaten.He is beginning to fight for too much control and if that doesn't work for him he tries to guilt us into backing off with his mouth care and vitals.It's very hard to hear all the things thet he has been saying to us - "why are you doing this to me"-"look at me, you're making me sick, go home"- there's not much we can do except continue on and try to work with him and comfort him.There's no giving in, the end result is to important.On the bright side he is still full of energy and humor.We still play trains,wrestle,paint and have water fights.His skin has become much better since coming off the accutane and the frickles under his eyes and on his nose have come back - I missed them so much.Kristy is back tomorrow so here's to another good night for Conor.

Thursday, April 24, 2003 12:10 AM CDT

Day 3

Conor is still doing really well. He has his ups and downs, along with his good moments and bad monents, fortunately the good are still outweighing the bad. I am not sure if he is feeling poorly or just fed up with everything, but he is starting to really fight having vitals etc. done. Its getting more and more difficult each time. His mouth care and blood pressure are the worst. Other than that, he plays when he feels up to it, sleeps when he needs to and watches movies (toy story is the big one the past two days, before that, it was Jimmy Neutron). He has been napping in the morning, waking in good spirits, plays and gets his bath. GETTING his bath seems to be his favorite time, getting OUT, not so much! He stays in there longer and longer each time...I guess it is becoming his "safe zone" not much can be done to him in the bath. yesterday I let the water out and refilled the tub 5x when it got cold. If that is what gets him through his days, then he can stay in there as long as he likes. Yesterday I changed 3 times because he soaked me with his squirt toys. I was dreanched. It was a very fun day. After his nightly nap from around 5-8 he gets up and again is in good spirits, and we usually cuddle and watch movies then. He is asking for food, mostly salty stuff , but doesn't eat much of any...I unfortunatley do :(. Popcorn, chips, hotdogs....anything he doesn't finish. Yesterday he ate a 1/2 cup of pea soup, about a can of gingerale, some milk, a bite of a sandwhich and one piece of popcorn, and one sip of tea. At least its something.
He has been started on night TPN (IV feeding) but is losing some weight. WE had made sure he gained weight before transplant b/c we figured this might happen so he is about where he was weight wise 2 months ago. He is 16.5 today. We went in at 17.6 . Not a big drop, but I expect it will drop even more of the next few days.
He began complaining of mouth sores yesterday, but not since, so we spoke with pain management today in case that becomes an issue. He will get a pump that we or the nurses control as he needs it. So far, there is no need, but his mood is irritable since late last night so we think there is some mucosa breakdown and he just can't tell us where it hurts. RIght now we are waiting to see what he tells us.
He is taking an antiviral med, antibiotic (since his spleenectomy)antifungal and antirejection med. He gets 2 differnt nausea meds and a third (the ativan) if it gets bad or he gets too worked up or upset. We haven't needed that for awhile. He manages to throw up, talk, play trains and watch TV all without missing a beat! Its become part of his day now. He pretty much throws up whatever goes down, but he is managing to keep a little down, it really depends on what, how much and when he eats.
He is getting a low, low dose of a chemo drug, then a "rescue" drug 24 hours later. He gets that on day 1, 3, 8, 11 ( I think those are the days) apparently, it helps rid any remianing cells left...I am having a hard time understand WHY it doesn't affect the new marrow, I have been explained it a few times, I can understand it when it is explained, but when I think about it, its like "HUH??" oh well, I have come to a point where I trust these people know what they are doing. I am very confident in conor's team and they always run everything by us first and involve us in everything, so I am very happy with his care. Our stay is 100ifferent this time around.
I have close this and get back to my boys. Thank You for all your support. We can really feel everyone with us and it does make a difference. Please understand if I haven't had a chance to return calls, thank people individually or answer eail. I do get them all ( I think!) appreciate everything!
kristy

Tuesday, April 22, 2003 9:05 PM CDT

Day 1

Last night reminded me of the first night I held Conor. After months of waiting he was finally in my arms. I stared at him all night, afriad to sleep, afriad to close my eyes, afraid he would disapear if I did. I remember being so in awe of him that night, unable to believe that that little person was mine. That he grew and became a person inside me. I was so afriad some one would show up and take him away, tell me I wasn't good enough for him, that I didn't deserve him. I remember all the sleepless nights that followed, waking every few minutes to see if he was there, if he was breathing, if he was breathing deep enough, long enough, fast enough, too fast...shaking him awake to prove to myself he was ok. Holding him close so no harm could come to him. While I was pregnant, I was able to control his environment, he was safe, he was free from harm. I saw danger everywhere I looked once he was in the world. Since the day he was diagnosed I have just wanted to tuck him back inside my belly, hold him under my heart and lay awake stroking my belly and tell him it will all be ok, I will protect him. But thats not possible, I can't make that happen.
Last night I lay awake all night long, watching him sleep, watching his chest rise and fall, shaking him, moving him if I thought he wasn't breathing. I fell asleep with my head on his chest more than once. He had a restless sleep as it was, tossing and turning. All the time I kept seeing the fight going on inside his tiny body. The new marrow looking for a home, a place to grow and flourish, battling agaist what little of Conor is left inside of him. A fight agaist his own body for his life. I could see all this as I slept. oddly, it comforted it me. I could see the new marrow triumphing, beating the old, ridding Conor's body of all the cancer cells. Again it reminded me of his birth. That night, I could see every movement Conor made as he made his way into the world. I could see his body moving down and out. I could see his hands curdled on his chest, and his face pointed towards the world. I could see all this, and I could see my body responding to him, and he was birthed so fast, so quickly, so easily in to my arms. If I could see such a perfect outcome that day, and I saw it all again last night, I am comforted, I am confident that my little man will grow into a big strong one. He is what defined me as a person and gave me what I never knew I needed, the role of a mother. I love being his mother, I love that because of him, I chose to have another child, to share that, to be a mother to more than one child. To share that love. I love that my boys share this amazing bond. I love calling myself their mother.
Today felt like a whole new beginning, and Conor showed us once again that not much can keep him down. He was up, playing being and having fun all day. His strength is inspiring.
Kristy

Tuesday, April 22, 2003 0:22 AM CDT

Still Day 0

Just wanted to thank you all for your emails and guestbook entries. It means so much to us have all your support, thoughts and prayers. Conor is sleeping soundly now after quite an eventful day. He was up and down most of the day and early evening, still full of humour and spirit. After I updated earlier today I returned to the hospital and Conor was still sleeping. I lay on the bed with him and cuddled in. He said something I didn't quite hear as he reached out for me. I asked him what he said and he repeated "I'm still here mom, Conor's still here".

He just woke up, so I will update more tomrrow. He looks like he needs a snuggle with his mom. I know I need one with my son.
Kristy

Monday, April 21, 2003 2:53 PM CDT

The SUPER MARROW is in!! Things went really well. It was all over in about a 1/2 hour. The actual marrow only took 10 minutes or so. Conor even opened the 'present' - the cooler it came it. Only problem was Conor had a really bad headach afterwards and threw up alot he got pretty worked up over that. He did amazing. (I really need to find another word!!) But he did. Everything went perfectly. He is sleeping now and I took the chance to rush home, feed aidan, shower and get back. I will tell you all about the entire morning later. I know everyone was waiting, and wondering and I had to let you know that my beautiful boy is doing just great. Thanks for checking on us.
Kristy

Monday, April 21, 2003 1:32 AM CDT

Its just after midnight...so I guess its day 0. I can't believe its here. Just 10 more hours until Aidan's super marrow flows into Conor. 10 more hours and then we wait. Everyone keeps telling me how anitclimatic it is going to be. How everyone gets all worked up, excited and anticiapting a huge event and what usually happens is the child is groggy and sick, and cranky and the infusion is over before you know it. I don't know what to expect really. Aidan will be here. There is no way he could miss this. He misses conor so much, whenever we go home you can see him looking around for conor wondering where he is. They have never been apart like this before.
I just can't seem to make myself go to sleep. I have cleaned the hospital room twice today already. On my hands and knees, scrubbing the floor, cleaning every corner, washing walls. Reminded me of all that nervous energy I had antipating the onset of labour with both my boys. I just needed to be in control of something I guess - cleaning the room and knowing it was clean made me feel somewhat in control of something!
My eyes are heavy, my mind is full of too many things trying to get out to actually get any of it out...I need to sleep, I should at least try to get some.
Please remember to think of conor tomrrow.
kristy

Sunday, April 20, 2003 7:11 PM CDT

DAY -1

Sorry for no updating yesterday, I tried but the computer kept eating my updates and after 3 tries I gave up. Conor was pretty good yesterday, woke in good spirits, played most of the afternoon and got pretty sick after his cyclosporine. He went to sleep pretty early and woke around 11, had a bite of toast, some water and a sip of tea, we watches "mighty machines" and went back to sleep around 1. We've been having fun at nights, with our picnics and late night movies. I moved my bed right next to his so its like we are in one bed and we sleep holding hands.
Yesterday he asked to go outside and see the "beautiful sunshine" and he keeps asking me if its night time or if Mr. Golden sun is out. Its hard not being able to see the light of day. He's getting a little mixed up in his nights and days, but so far, not too badly. We didn't get the one room with the window, Micheal, a little boy transplanted over 3 months ago was moved there when it became available. He has been in hospital the whole time. He is a very sweet little boy. He is having a rough go of it all and just loves sitting in front of the window. You can hear him calling out everything he sees. It is great to see him up and around, when we were here last, he was at stage 4 GVHD and he is doing much better now
Conor got his last Chemo at 3:40 today!! He fell asleep pretty much right after as he got gravol right after as well as the cyclosporine. He is sleeping now and I have a few minutes at home between making supper, and feeding Aidan to update.
I feel as if I haven't said much of anything, but its really been pretty uneventful. He is settled in, likes his nurses, is being treated wonderfully and having fun. He isn't too sick yet and is getting up everyday to play and be himself. One nurse described him perfectly the other day. She said she have never met a kid with so much PERSONALITY. She got that right! He is one spirited boy. He is very funny and manages to lighten the mood throughout the day. His strength amazes me. HE amazes me. He had his bouncy balls in the room today and got everyone who came in. He puts them all in a big bowl and throws them on the floor whenever someone walks in. I have it all on video, and if I can, I will transfer it to the computer eventually.
I am confident about the outcome of this. My little man is going to beat this and we will be home before Aidan's birthday in August. Conor will BEAT this.
I have so much to say, so much has happened, so much inside my head that I just can't get out. I tried writing it, typing it, talking it, but its just STUCK inside my head.
Just know that right now, he is doing good and we can't ask for more than that. Given the circumstances things are as good as could be expected.
I will update tomrrow when I am able. The transplant is happening at 10 am tomrrow!
Oct99moms - we will all be wearing our shirts!!!
Thank you EVERYONE for being with us up to this point. The next few weeks are going to be pretty rough on conor, once his counts finally bottom and the new marrow grafts. He will get through it. It will be hell getting him there, but he will be fine.
Kristy

Friday, April 18, 2003 8:38 PM CDT

-3

Today finds us a little more where we thought we would be. This moring conor was given Cyclosporine (an immunosuppressive drug) and gravol to prevent nausea. He splet pretty late and woke at around 11 am. The gravol always knocks him out. His chemo was due around 10 but couldn't be given because his hydration wasn't were it should be. Finaly after a bolus of fluids he was ready for chemo. He finished the Busulfan this moring and was given Cyclophosphomide today. It is given for two hours today and will be given again tomorrow. He did really well with that. He needs extra fluids and a med for the possible bladder irriation, so he's been peeing ALOT. He was playful and active most of the afternoon. Then during his second dose of cyclosporine he got really sick because we cut back on the gravol thinking he'd be ok with half. He wasn't and was pretty sick the whole time and called me crying to come over. I got here as fast as I could. He threw up for 2 or 3 times and was getting really worked up and upset so we gave him Ativan for nauea and to calm him. It worked instantly and he settled and fell asleep and has been for an hour. We will keep with the full dose of gravol before each cyclosporin to prevent this from happening again.
He is handling all of this so well. He is starting to worry about his hair though. Last night he hugged me and said "mommy, I'm gonna loose my hair" and had tears in his eyes. I told him he would but it would grow back. He was ok with that.
We have been keeping him pretty busy with playing trains and doing things to keep him active and up around the room. We've played musical chairs, jump to the sky, touch our toes, run around the room and various other games to keep him moving. He is doing really well. We've drawn pictures on all his door windows and put family pictures all over the room. We brought alot of stuff from home and the room is small, but homey and has lots of stuff he loves here.
Darren has been staying most days and I stay at night. It is working really well. Aidan is sleeping through the night, and some mornings darren brings aidan with him so I can feed him right away. Or I leave as soon as darren gets here to get home, shower and feed aidan. Today I was back and forth a few times and it worked well. Conor is needing more attention, and I am more comfortable driving so it works really well for me to drive back and forth to feed aidan, make meals and even spend an hour or two here in the afternoon so darren can get out. I get one on one with both of them somedays and that is nice too! Aidan has been here once or twice and Conor is always asking for him. He misses him alot and calls to talk to aidan often while he is home.
So that is it for now. I will update again tomrrow when I get a chance. Hopefully Conor will tolerate the meds better and will be back to himself.

Thursday, April 17, 2003 7:14 PM CDT

Day -4

Once again, all is well! this morning started out pretty early. Conor woke at 5am when they did his vitals, bloodwork and hooked up his chemo, then he couldn't get back to sleep and was pretty cranky. THEN he somehow seperated his lines and had CHEMO spill! You should've seen people scrambling then. Fortunatly, a very small percentage was lost and doesn't have to be made up by adding more. I don't know how he seperates his lines!! After all that commontion WE had some trouble getting him to take his meds and cooperating, but eventually he did. He had a fun day playing trains, singing, dancing and just having fun with Dad.
His counts are still are NORMAL!? I wonder sometimes if they are really giving him anything at all!
I'm off to the hospital for the night shift. I'll check in soon.
Kristy

Thursday, April 17, 2003 0:52 AM CDT

DAY -5. Everything is going great! Conor is running around the room, jumping on the bed & just plain wearing everyone out.It's hard to believe he is recieving chemo. The doctor said it is still early and the really hard part comes after he recieves the marrow, but it's so..... I don't know how to describe it - it's just such an amazing feeling to see him just be himself.Kristy will be back tomorrow to give you the full story.

Tuesday, April 15, 2003 6:12 PM CDT

Day -6

Once again, there isn't much to tell you about. Conor is doing amazingly well and is playing and just hanging around his room. He is confined to his room because he has been an in patient in another hospital in the past 30 days, and there may be a risk of infecting other kids with something he may have...so he has to stay in his room. Which is fine by us! The dilantan that was supposed to make him tired ISN'T. The Busulfan is NOT making him sick and he has been up to midnight each night, is eating well and still full of energy. His counts are all normal. They actually went up today from yesterday. He is getting busulfan every 6 hours for 2 hours. Gets dilantan 3 x a day and some antibiotics and antifungal meds. He is doing well with his mouth care and baths. He has lots of squirting bath toys so he likes getting in and getting everyone else wet!
He is settling in, getting to know his nurses, and feeling pretty comfortable. He misses his brother alot, and asks for him quite a bit. I have been staying at night and Darren is at home with Aidan. Its pretty hard, but we are both enjoying our one on one time with the boys. I came home about 11 this morning and I will go back at around 6:30. After rush hour!! I am still nervous driving,but getting the hang of it. I miss Conor when I am with Aidan, I miss Aidan when I am with Conor, but I must admit, it IS nice to have time for Conor to just hang. And same goes for Aidan. I wish there was some other way to do it. Some way we can all be together through this, but Aidan can't spend much time in the room, and Conor does tend to be more cooperative when its just one parent in the room. We all eat supper together than darren leaves for the night. Aidan is a super boy, getting used to it being Daddy at night and not mommy.
Conor is Doing great. I am so proud of him. He is really showing us all how strong he is!
kristy

Monday, April 14, 2003 9:06 PM CDT

Day -7
Things went pretty good today. Conor did really well with everything and so far is handling his chemo good. He is even handling the procedures well.
I'll update more later. Just wanted to let you all know Conor is doing good.
Kristy

Sunday, April 13, 2003 4:08 PM CDT

DAY -8

Conor will be admitted tonight at about 8 or 9 pm. He needs to get dilantan before the Busulfan tomrrow and it has to be administered a few hours before - at around 4 am. He will be getting the Busulfan in the morning around 9 am.
I will update as often as I can.

Kristy

Saturday, April 5, 2003 8:54 AM CST

Well, we are home after short stay in Calgary. Our meeting went well on Wednesday and everything is in place for Conor's transplant. We met with the nurses and chidlife who are getting things together to keep Conor entertained and occupied. We also are going to have assigned nurses so that conor gets the same ones during his stay. There will be 8 rotating nurses according to shift, sounds like alot, but they are chosing the ones whose style they know works best with Conor and they have some back ups too. Just so they are familiar with him, and he is comfortable with them. It is a big relief for us. They also have a volunteer assigned to him who can come for a few hours a week at the same time to allow us to get out. (Haha, like THAT will ever happen!). But its there if we want it. I got my lisence last week, so I can now do things without darren driving me everywhere, so who knows, I may get out ALONE once and awhile. Yes, I am 30 years old and just got my lisence - NO LAUGHING!! I am fianlly a real grown up. I kept putting it off because we thought the insurance would be way too expensive, but as it turns out, it was only $76 a year to add me to darren's policy!! Oh well, now I just have to find the courage to drive :).
Anyway, back to Conor. We are very comfortable with his treatment plan. Very comfortable and very confident. His plan is as follows:

day -8 admit, given dilantin to prevent siezure continues until 24 AFTER his last dose of busulfan

day -7 to day -4 busulfan by IV, given every 6 hours for 2 hours at a time

day -3 to day -2 cyclophosamide and Mesna to prevent bladder irriation caused by cyclo. and lots of IV fluids

day -1 Melaphan which is the one the causes the severe mouth sores so we watch for that

day 0 - gets Aidan's SUPER Marrow!!

He will also be given Antibiotics, anitiviral meds and nutrition if needed. and any pain meds if needed. He will get a daily bath, daily dressing change and frequent mouth care. He will get cyclosporine and methotrexate for immosupression. The meth MAY be discontined if it causes more problems than good. It is given on certain days and apparnetly the day 11 dose is VERY critial so they like to try and get to that point.

he will be at great risk of infection. there are lots of complicatios that could arise, but I won't get into those, because we are confident that Conor will do well and I am not going to focous on anything negative. Just keep us - him in you thoughts and prayers and hope that everything goes as smoothly as it can and my little boy will be out running around in no time.

Engrafment usually occurs around day +22. and around that time GVHD can occur. A little is good, we want to see a little know Aidan's marrow is attaking any residual of conor's, but just a littls. a slight skin rash or something. but that's it. Around day +30 to +35, conor will be dicharged. And we hang out in calgary until day +100 when we know that everything is going well. Day +100 is a critial time. Its usually when they can tell how things will go.

Our apartment is fantastic. Its only 10 mintutes drive to the hospital. Its on the 13th floor and is very comfortable and clean. Its small, but has everything we need and want. We are able to all be together, and that is what is important. I keep thinking that this is where Aidan will take his first steps and where Conor's life - our lives will turn around. Conor will be taking some first steps there too.

Thanks for checking in on us and for those of you who aren't in Alberta, our family was on the Edmonton and Calgary news last night. They interviewed us yesterday morning and aired it last night. They had some great footage of Conor being silly and having fun as well as him and Aidan together. It was really nice. It showed Conor as Conor - I was so happy about that. And is showed the beautiful bond between my boys and that was the greatest. I am so happy everyone got see Conor the way we see him everyday.

Please keep all the other families going through various stages of treatment in your thoughts and prayers. There are alot who could use them. To everyone at JMML support - I do read your caring bridge sites daily, though I don't often sign in, I am there, and I am thinking of all of you. thank you all for your support. To all my Oct99moms friends. Thank you for everything. For always being there. Where would I be without you ladies? To ALL our friends, family thank you for your contined support - its kept us together through this and that I can never thank you enough for.


Take care,
kristy

Sunday, March 30, 2003 9:43 AM CST

So here's the latest. The newest anitbiotic seems to be doing the trick. Whatever was going on with his counts (WBC and Neturaphils have been way up since spleenectomy) must've been bacterial - ear infection, sinus maybe - because since the new antibiotic has been started, his counts are well with in normal range. He hasn't had a fever since thursday either. That night after taking the anitbiotic (zythromax) for the first time, he went to bed, broke out in a huge sweat and the next day his counts were normal and his fever gone. Not sure why, but happy all the same.

On Friday the transplant nurse (Jo) from Calgary called. Conor's transplant dates have been moved back. Not sure exactly why, but she said it was because they had to do a test dose of the Busulfan. So we still have our pretransplant meeting on the 2nd. At that time we will be given a prescription for dilantan and he will start that before we return. The dilantan is to prevent siezures that can happen with the busulfan. Then we come back and return on the 9th for admission, to be admisitered test dose of the busulfan on the 10th. He will have 7 blood draws from his broviac to moniter the levels of the busulfan and insure that he is getting a theraputic dose. Then he will be given a pass for the weekend (so they can hold his room) and he will return either the 13th in the evening or the 14th in the morning. It depends on when they want to start his meds. His conditioning begins on the 14th, which makes his new transplant date the 21st. Easter Monday. He will get busulfan from day -7 to day -4 , then Cyclophamide for days -3 and -2 and on day - 1 he will get Melaphan. On day 0 he gets Aidan's SUPER MARROW infused. They will wait a full 24 hours between the last drug administered and the infusion. He will be in islolation for 30 days +/- . Depending on how things progress. Once his ANC is 500 he will released. He will be given pain meds as needed, or anitibitics if fever develops. He will get TPN (IV nutrition) if needed and monitered for any other problems. He will also get blood products as needed, platelets and PRBC. We did manage to get an apartment so we don't have to stay at RMDH. It is wonderful there, but I was worried about contact with others, kids mainly, post transplant, but now we don't have that worry. Its a big weight of our shoulders. Plus with my Mom coming to stay for a few weeks, it gives us all alot more space! At least when conor is released he won't be confined to one room. It is going to be summer and VERY hard to impose restrictions on him and ourselves, but I have to keep thinking that its not forever and its ony 100 days total and if they speed by as quickly as the last 7 months, we'll be home in no time. Its really strange how somedays seem to last for weeks, but the weeks and months fly by.

Initially I was a little worried about the dates being pushed back a week, but now, with conor's counts stabilized, I am more relaxed. We get some extra time together as a family. Conor has a new big boy bike and has been having so much fun riding it. We will be bringing that with us to the hosptial as an incentive to get out of bed each day. I figure he can ride circles around the room or we can turn it into a stationary bike to let him burn off some energy. We had talked about getting him a battery operated car like he drove while in Edmonton after his spleenectomy - but it would be cheaper to buy him a REAL used car! Wow those kids motorized cars are expensive. At least with the bike he gets some exercise too, so we are happy with that. Childlife has arranged a volunteer to come by daily to play with conor and they will be giving his room a playroom theme and decorating it with all the stuff he likes. With lots of luck we may get the ONE ROOM on the unit with a window! I am hoping for that. Otherwise, I'll have to find a picture of a window somewhere!

Things will be a lot differnt for me this hospital stay. Usually I stay with conor and keep aidan with me. That won't be possible this time. I've been given the impossible delemia of staying with conor is hospital or with aidan at home. I am so torn. I have been storing milk for aidan as I am still breastfeeding, so darren or my mother can feed aidan while I am not around, but I DON'T WANT TO LEAVE EITHER OF THEM!! I am so torn. I believe I should be devouted to conor during this time, giving him 100% of my attention its what he needs and I believe I should give Aidan everything conor had as a baby, so I am in an impossible place. They both deserve everything. We have it worked out so that darren and I will switch back and forth nights at the hospital, but I just can't see myself walking out that door and leaving him. I am so torn up by the thought of it. I have to do what is best for my children, both of them. But I can't be everywhere at once! I have to learn to let go a little and I don't know if I have that in me. I have only been apart from conor once, the night I had aidan. and I have never been apart from aidan for more than a few hours. I sleep with both my boys every night...how do I leave one of them now, at a time when I need them most? I take comfort in the fact that aidan is as attached to darren as he is to me, so he will not be too troubled by my leaving overnight. Conor on the other hand, has always been a mommy's boy and everything is mommy when he is sick or upset. I have nightmares about him crying for me and I am not there. He dos well when I am not around and darren is there, but if we are both there he will want his mommy, so maybe I am torturing myself needlessly. Daddy can provide just as much love and comfort as I can and I have to focus on that. I worry too, that conor is so used to having aidan around in hospital that him not being there will upset him. He is so close to his brother it saddens me that Aidan, who had such a big part in all this won't be able to be there 100% of the time. I have always said from day one that we are in this as a family. Conor is not fighting this alone. WE are fighting this. So now, at the most crutial time, to be seperated is very hard.

Thursday, March 27, 2003 10:59 PM CST

Hi. Things are still going well. Conor has what looks like the beginnings of an ear infection and a sinus infection. We have added yet another antibiotic to the mix. That's three now. A year ago, I would barely allow him to take tyelenol. How things have changed.
Conor's counts have been up, above normal so we are watching closely. This ear/sinus thing could be part of the problem though. I am really hoping his disease isn't progressing too quickly. It seems to be letting us know its there though. i guess it doesn't like to be ignored...We don't want him going into transplant sick, and things can't move much quicker than they are so, let's hope and pray that everything will be as normal as can be under the circumstances.
All his pre transplant tests will be completed on Monday. He is scheulded for the kidney function, echo caridogram, and abdominal ultrasound. We will have a very busy day! We leave on Tuesday for Calgary. Wow. Its all beginning now. Pretty soon, Aidan's super marrow will be flowing into Conor and finding a new home. Conor will then make it his own and no more JMML to deal with. As Conor says, it will be gone "to infinity and straight" - his take on "to infinity and beyond" I guess!
The Ford household is pretty uneventful. Messy still, but uneventful. Where we will find the time to pack is beyond me. Let alone clean and settle everything away. There are a million things left to do. Aidan seems unconcerned with it all, sprouting another tooth , getting up on all fours, belly crawling, feeding himself, walking around stuff, pulling himself up, feeding himself and just being happy. He's one content kid.
Its late, I am tired, but I wanted to let you all not much has changed and we are looking forward to the future. Its almost here.
kristy

Friday, March 21, 2003 11:26 PM CST

The summer before Conor turned two, we spent a few days at David Thompson Resort with some friends. It was a pretty uneventful trip – well, if you don’t count Conor eating a bag of cheeses before going swimming, swallowing water and puking into the pool causing grossed out swimmers to leap out of the water – it was pretty uneventful, but it was a very nice trip. It was our first family ‘vacation’.
On the way back home we stopped to see a waterfall everyone had urged us to see. It was beautiful. The river was inviting and urged us to play. It reminded me a lot of a river near where I grew up - it called to me. We walked along the rocks and played in the water, putting our feet in it and peering down to see beneath the surface. I could hear the waterfall, but not really see it, it was around a small bend that couldn’t be seen past a large grouping of rocks, so I was fooled into thinking it was a small one. All I could see was what looked like the river going on and on.
At one point Conor was playing, dipping his toes in the water and leaning forward. He was trying to get from one rock to the other, and slipped. Without thinking I reached for his hand and caught him as his foot fell into the water. I caught him pretty hard, jerked his arm enough that his body swung around. Being an active little boy, he adjusted quickly and we kept on walking.
We walked short distance on the rocks that seemed to become more and more slippery as we neared the falls so we left the river’s edge and began walking along the trail. When I came the edge of the falls I was stunned to see how shear the drop was. It seemed to go on forever, the water just falling and falling, crashing loudly on the rocks below before continuing its journey. The edge of the falls was about 100 feet from where we had been playing. It was only then that I really took in the scene around me. The ‘peaceful’ river was really a raging one and the quaint pools of water were invitations to the deeper pools beyond – and the hidden currents.
As we walked to the car, the gravity of the situation hit me. What ALMOST happened hit me and I as shaken to my core. Had I not instinctively reached for Conor’s hand as he slipped, he wouldn’t have merely fallen into a puddle of water and gotten wet – he would’ve fallen into the swift currents of the river and instantly been pulled into the tumultuous waters and within seconds been thrown over the falls. Carried away by forceful currents only alluded to on the surface. The whole experience affected me deeply and made me hold him that much closer from that day on. Even when it wasn’t in my conscious mind, it was there, in the back, hidden away reminding me of what could’ve happened.
Lately, I’ve been thinking of that day more and more. And in a way, these past 7 months I have been relieving that day. From the moment Conor was diagnosed with leukemia, through all his treatments, hospital stays, surgeries, and fevers, I’ve been reliving it. Instinctively, I’ve been reaching for his hand, holding it tightly and continuing on my way. I am blind to the raging river all around us and just keep going forward. Some day, I will look up and see this all for what it is, but right now I am just going to keep holding his hand. He may slip, and we may not see what is around the bend, but we will never, never fall.

Tuesday, March 18, 2003 10:21 PM CST

Things have been so normal around here lately, its really strange. Strange but nice. I think I have put much of what is to come out of my mind and I am just enjoying being home. Today Conor and I took a walk around the block. At one point I found myself crying. I kept thinking about how wonderful it was to be out with him on a sunny day walking around the block. How we used to do it 5 times a day and I never noticed how wonderful it was to just walk, run, jump in the puddles and just hang out. Before all of this, it was just me and Conor, Darren worked away most of the time and of course, Aidan hadn't come into our live yet. We were in a new place, didn't know many people and so we spent our days just walking around the block or to the store or library or the park. We walked everywhere. Last summer he mastered riding a tricycle going round and round that same block. Every night after supper, we'd be out there. There was no where we had to be, nothing we had to do, he could just be a kid and we just hung out and I watched him discover the world around him and I discovered a lot too. I just assumed all that would continue once Aidan arrived. I knew I wouldn't have the amount of time to devot to conor, but I figured it would be just the same, only with two boys. I pictured aidan on my back in the backpack and conor running along ahead of us. Us stopping for icecream and jumping in puddles. Yesterday I had a taste of all that too. Darren had gone out to run some errands and I got us some milk and cookies and turned on one of conor's favorite videos from when he was a baby. I asked him to show it to Aidan and teach him the songs. We watched it twice, sitting on the livingroom floor, singing and clapping our hands, pointing everything out for aidan. It was so much fun. Today, there was nothing that would comfort Aidan (did I mention he now has 7 teeth!!?? yes, 7, one more came through yesterday and he is pulling himself up into standing, walking around stuff and just about crawling!! he's incredible), so darren got out the musical instruments and started banging away on the kid's drum, Conor played the tamporine and I picked up Darren's guitar, (I don't play, don't have a clue HOW to play!) and started strumming and we made up silly songs and sang along. It was alot of fun. It seems like there is a weight lifted off our shoulders. I guess the spleenectomy was bothering me alot more than we had thought. Now that that is over, it feels like we are on our way, things are moving, things are getting done, we are on our way to being cured and rid of this disease forever!
I love my boys, my family. They are the greatest...

Conor is feeling good. Off all the pain meds except the tylenol when he asks for it. Today after our walk he played soccer, and shovelled snow, crawled around outside and ran around like a regular kid. It was so nice to see. He is still not 100%, and he napped for a few hours late today. It is 10 pm now and he is still up watching movies. Its gonna be a long (fun!) night. he's in a pretty good mood.

I hope to scan and upload some new pics soon. I've taken a thousand I'm sure. I'll let you know when they are up!

Thanks for checking in on us,
kristy

Sunday, March 16, 2003 6:27 PM CST

First off, I apologize for all the mistakes in my past few entries. I was writing fast, hadn't had much sleep and didn't have time to proof read anything. I am sure you all know that the spleen was NOT 64cm. Sorry!! If anything seemed strange or odd, or just didn't read right...it probally wasn't.

We arrived home yesterday supper time after a long day of just hanging around and waiting. The surgeon came by on friday evening and said COnor would be good to go on Saturday if he wasn't in any pain etc. They weaned him from the morphine over night and by morning he needed only tylenol. He was non stop all day long. We hung around to get some pre transplant tests; blood work and xrays. Conor did not like the xrays at all but held pretty still all the same. We waited a little longer to see how he was managing the pain and he seemed to be doing just fine. Riding bikes, tractors and running around. He was lifting things and tearing the place apart, so we assumed he was good to come home. As soon as we placed him in the car, he was asleep and stayed that way until we got home. He woke up pretty grumpy, tired and sore. I filled his codine prescription and gave him some of that with tylenol and he was feeling fine an hour later. He is taking his meds good again and we are very happy with that. He has a new added, the penacillan, which he;ll take 2x a day indefinately. SO far today he has only had tylenol and codine 1x and does not need anything for pain. He says he's feeling good. AMAZING.

We finally have a date for transplant. We are being admitted on April 7th. I am still waiting for the final protocol and exact drugs used, timing, etc. and will let you know as soon as we do. It is getting so close. I don't konw if that's good or bad........part of me just wants it over with and the other part just wants to wait and wait and wait. I still have a hard time believing he is sick. NOTHING is keeping him down. Part of me is still waiting to be told, " well look at that...we were wrong after all!, he dosen't need the transplant!". Oh well, we know that won't happen. Right now I am concentrating on getting our lives together enough to uproot for 3 months. I am focusing on just letting conor be conor for the next few weeks and I'll deal with the rest as it comes. I can't wait until this is all over and my son is just a normal, healthy kid. THEN, I can fall apart - and boy will it feel good!!

We are very prepared for our next calgary stay. We have worked with Child life alot this past week to get "conor's coping plan" in place and everyone is aware of it. We will bring it along and I am sure things will go much more smoothly.

We are all enjoying being home in our messy house with laundry everywhere, and toys and trains underfoot. We just can't seem to get on top of all the housework, but oddly enough, I find it comforting. Normal. And to eat real food! So nice. But niceset of all was falling asleep last night all tucked up in one bed with Darren snoring loudly, conor kicking me in the head, aidan pulling at my hair, everyone all cuddled together in the middle of the bed. Somehow it was the best sleep I've had all month.


kristy

Saturday, March 15, 2003 8:51 PM CST

WE ARE HOME!!!!!!!!!!!!!

Wednesday, March 12, 2003 6:53 PM CST

I wasn't far off when I said it would only take 24 hours for Conor to bounce back. It was more like 23!! He woke this morning at 6:30 and you could see he was on his way. He had that light in his eye, and he was trying to fight through the pain. We ended up playing airplanes and playdough until 9 or so when we had to up his morphine and give his some gravol. He was feeling pretty ikky and was really stiff and gaurding his sight. He was feeling nauseated all night wanted to sleep pretty much sitting up, so his neck was stiff too. The surgical resident came by at around 8 am and had a look at conor and removed the bandage, that was the first big surprise of the day, Conor not only let him, he helped him! Conor was a little apprehenssive at first and wouldn't look at his scar or staples, but soon asked to see his cut. He thought it looked like train tracks, which it did really. At around 10 or so, the nurse came in and removed conor's staples, she removed half and replaced them wiht steri strips and rebandaged it. Conor did AMAZING. Lois, the child life worker was here and helped us talk him through it, but he did most of it on his own. Laying there and just watching. I think he was mostly scared and that helped keep him from fighting too hard. But he watched her take them out. We even kept them. Pretty sooon after that we got him up and out of bed. They brought by the car he rode in yesterday adn he sat in that. He only managed a few steps and asked to go back to bed. We finally were able to get some tylenol in him and he rested. While he was resting darren and I went to see the much anticiapated spleen. Very anticlimactic...they had already disected it, so we didn't get to see the organ in one piece, but it waas very interesting to see. It was so SMALL. I think the pathologist said 64cm. Normal size. He hadn't had a chance to do all the tests but was pretty certain it was not enlarged. we will have the results of the analysis on friday.
after that we came back and I got conor out of bed, he wanted a popsicle and I told him he had to walk for it. And did he! He walked out of the room to the hall, and then asked for the bike. I quickly got it and he rode the bike about 20 feet or so. Then we walked all the way from one end of the ward to the other, and got a popicle and returned to our room. Everyone was amazed, but most said "that's conor!" "we wondered how long it would take him to get back on his feet, not long at all".
Once back in the room he asked for milk and cookies, I said no, he could have milk and cookies to which he replied " ok, I'll just have cookies ".Little smarty pants. At one point he was asking for food, saying "its not for me, my tummy's hungry". He's eaten about 1 1/2 popsicles and a few sips of water. He is hungry and thirsty, but things are not moving normally yet, so he has to wait and wait and wait..... We have been to the beach and to the playroom and to visit the new dayward. SO its been a busy busy day. In all, a GREAT day.
We even got news that our van troubles are on their way to being fixed. Thank you so much to those of you who worked so hard on that for us! We appreciated so much.
Have a nice night everyone.
kristy

Tuesday, March 11, 2003 3:43 PM CST

Third entry today:
Just wanted to let you kknow that conor is sleeping peacefully. He has been having some pain and needed some gravol He pulled that NG tube out so many times they dont want to try again, so they will give gravol as needed if he seems sick. He is on one antibiotic he started right before surgery and will continue for a few weeks. WE had to change the bandage on his back 3 times (he had a BMA as well) becuase it seemed to be bleeding a little more than they liked, but last check things were fine.
Thank you for the calls, emails and guest book entries,even though I don't always reply, please know how much we appreciate them.
Good Night everyone!!


second entry today!!
Conor got back to the room at 1:40. Everything went well. They are currently tracking down his spleen because we asked to see it. It has been sent to pathology for testing etc. He is doing great and is now asleep.
The surgery went fantastic and he wasn't awake 2 minutes and he had pulled out the NG tube! (the tube the put in his nose to help with nausea, it goes right into the stomach). He is on a morphine drip for pain,but has been asking to sit up and to eat (chocolate donught), so I gather he isn't feeling too bad. He still has his sense of humor, sticking silly putty on his head when we took a picture and as we were reading a card to him (with a pic of a cat in bed on it) he said "excuse me, there's a cat in bed, hahaha, itsn't that silly?!?!" to the nurse. When he first came in the room, he looked at me and said, "Mom, they forgot to take my spleen".
He's doing good. THat's what matters. He is currently getting oxygen because he seems to be gaurding little and not breathing deeply his oxygen level was at 90 and with the oxygen is at 94. His BP is 118/59 a little high but normal under the circumstances.
I'll update more when I can. Thanks for being here with us today. We could feel all of you with us, and all the good thoughts being sent our way.
Our phone number has changed and is at the bottom of the page.
Love,
Kristy

Tuesday, March 11, 2003 12:25 AM CST

Hi. Conor went into surgery about 45 minutes ago. He got to ride there in a tyke size Volkswagan!! I will post pics in a few days. I got to stay with him while he fell asleep which he did while sitting behind the wheel of the car! He was one happy boy. I will let you all know as soon as I can how well things went. I have great confidence in the surgeons and OR staff. He will be running around this time tomrrow (or at least walking fast!) I'm sure.
Thanks for checking in on us and for your thoughts and prayers today especially.
Please note the number and room change at the bottom of the page. We were moved to a private room this morning.
Kristy

Monday, March 10, 2003 10:27 AM CST

Evening update
<<<<<>

Hi all, just wanted to let you know the surgery has been changed to 10 am. I am so freaked out by this. I wish we didnn't have to do this....my boy little boy has been telling everyone "I''m getting surgery tomrrow, they are going to make an inscision, take out my spleen, put a bandage on it and if it hurts give me medicine" if you ask him why his spleen is coming out, he says to help make him bettter and that when they take it out they willl replace it with jumping beans and he jumps all around. I guess he understands it pretty well huh? well, except for the jumping bean part!!>>>>

Just wanted to leave a quick update. THings are going well this time around. COnor hasn't had a fever since Friday. His WBC went from 3.7 on Thursday to 13.9 on Friday with increased nuetrephils indicating a bacterial infection. His cultures so far have been negative and the only thing they could find was a possible ear infection. Since being on the anitbiotics his wbc has dropped to 1.9 with 0.8 neuts. His ANC is over 800. SO it looks like his WBC on thursday was an indication of the infection and not his counts coming up on their own, esp with the big jump between thursday and friday. His fever spiked to 39.7 and pretty much stayed there for 24 hours. Tylenol wouldn't bring it below 38.3 and a cool bath knocked it down to 38 for about 1/2. It was clear somehting was up. We decided to take him to wetaskiwin ER just for cultures, but while there he spiked, and was pretty out of it. WE asked to see the doc who gave conor the highest dose of tyelenol we could and then he arranged for admit here. We chose the ambulance to be on the safe side. THe dr. said with conor's fever being so high for so long, that he was at risk for seizure and we didn't want that to happen enroute. I will have lots to tell about our ambulance ride and my usual critique of the ER staff here, but I don't have much time right now. There is so much going on to fill you in on that I don't want to leave anything out.
On top of everything else, it looks like we need to find a new van. The dealer sold us a lemon, admitted to it, offered to give us an even trade and now is saying no way, and offering us WAY less for our van on trade than he originally said. We are so upset. We need a reliable van for all our travels and the dealer is really messing with us! Just one more battle for us to have to fight right now when all our energy should be focused on getting our son better!
It looks like the spleenectomy will go ahead tomrrow. EVeryone tells me his counts are fine for surgery. I am just so worried as the biggest risk of complications from spleenectomy is infection and if his WBC is low then.....the doctors and nurses assure me his counts are fine so I guess I have to trust them on this one.
Conor has been enjoying his stay here and it is so wonderful to see the attention he recieves from the staff. Not one of them walks by without smiling or patting him on the head or ruffling his hair. EVERYONE welcomed him and is so nice to him. It breaks my heart to think he can't have the transplant here where he is most comfortable. We can still see some of the effects of his troubled stay in Calgary, he is much less cooperative than he used to be, but the nurses understand and are taking the TIME with him he needs. I am confidant things will work out just fine.
His friend brooklyn came by yesterday with her mom so we both had a visit with friends. It was so nice! Conor and brooklyn ran around like crazy, played soccer and rode bikes around the unit. She left at 6 or so and by 6:30 conor was sound asleep. He'd wore himself out!! He was up at 5 am though, so I am pretty zonked right now. We have busy day today getting info for surgery, meetings etc. I will update more when i can. Surgery is scheduled for 2pm (MT)tomrrow. I will let you know as soon as he is out, one way or another. If I don't get a chance to update here, check the guest book for updates from my mother.
Our room number is listed at the bottom of the page. Have a good day!!
Kristy

Saturday, March 8, 2003 1:08 AM CST

First off, I would like to thank everyone for there continued support towards our family and our goal to give Conor the best care possible.Last night was a hard night for everyone,Conors fever really took the best out of him and had us all lacking in sleep.The morning started out finewith Conor feeling alittle under the weather but he cane to life when the reporters arrived to do a story on our family.Things,however,changed quickly once we arrived at the Wetaskiwin hospital for cultures and cbc. The feverwas too much and he began to shake and fell asleep.The staff at Wetaskiwin are becoming just fantastic with Conor.Today even with how bad he felt they workedso well with him.Myself and Kristy were talking about it later, they just want to do what is best for him,we are all learning along the way.There is no ego involed with with them,we all work together to help Conor.They are not afraid to take suggestions or try something new,the end result is getting Conor better.Unfortunly, Conor is now in hospital(Edmonton),but I feel safer with him there.It will most likly be a long stay but it's the start of his recovery,something we are all looking forward to.When Kristy updates tomorrow she will have some great stories about ambulance rides,boring med students,nurses without personality,teens throwing up,a useless van and general fun stuff!

Friday, March 7, 2003 8:47 AM CST

Thank you everyone for your support! I was a little worried after I last updated that I came across a little too strong and way to negative. I tend to type and enter, WAY before I reread, so sometimes I just need to vent and that is what ends up here.

Anyway, in all my venting I left out some parts of our stay that would be fun to share. Conor definitely kept us all on our toes while there, starting with the third day when he stood on the bed and turned the wrong way too quickly and separated his lines. They used a quick connect to attach the IV to his broviac and not the type where they remove the cap and attach the lines directly to it. It’s not nearly as safe! Anyway, I as holding Aidan while they attempted to get a blood sample and I heard Darren scream. I looked over and Conor was jumping on the bed yelling “I can run around like a crazy boy now” he was covered in blood and all he could think of was the positive side – he wasn’t hooked up the machine any longer. I thought he had pulled out his broviac and nearly fainted. I ran to him and all I could see was his line lying on the bed. Boy was I scared. The nurse (aidan’s) who was in the room, came running over, trying to calm us, but you could tell, she was a little freaked herself until she saw what it was. She just clamped him and changed is lines. Says it happens all the time! Well hello!! Change the connections. Imagine if that was chemo in there?? Not to mention the risk if he was alone, and the fact that his line was open to the air. And didn’t he turn around and do the SAME thing a few days later? Darren had gone for coffee and I was getting a shower, Conor was playing in the playroom with 2 volunteers. When I came back from my shower, Darren showed me Conor’s shirt. I said, it’s no big deal its washable – I thought it was paint. It was blood! Conor had been trying to wash his hands, pulled the lines and they separated. Unbelievable! That same day we went to RMDH on a pass and he got is hand caught in the door! Luckily it was pressure door and it closes really slowly, otherwise, it is so heavy, if it has slammed, it probably would’ve broken his hand. What else happened? Oh yeah! He tried to draw his own blood! Seriously. One of the nurses had given his teddy a broviac and gave Conor a syringe (with the plastic needle attached!!) and he was playing with his teddy. Before anyone knew anything Conor was saying “look” and had a syringe full of fluid! He had put the syringe in his line (not the broviac, the IV line where there is a Y connector) and drew out. He almost drew blood; it was in the line halfway up to the cap! We panicked and ran out yelling for a nurse and everyone came running including the Dr. (resident on call who saw everyone else running and ran too) I was holding his line clamping it off so that anything that went in wouldn’t go any further. They ended up having to change his lines again and go over everything to get the full story to make sure nothing went IN his lines. They had to reorder his med because he was getting an antibiotic at the time. I think the nurse was pretty shaken, I guess she could get in a lot of trouble for that. She kept going over it and over it with me, to make sure he didn’t put anything in, just drew out. I told her to ask Conor, he’s the one that did it! She did and he replied, “No, I was just drawing blood for counts!” in a tone that indicated he couldn’t understand what all the fuss was about. Needless to say all the medical play stuff was taken way from him after that.

Even Aidan provided us with some drama. Although he came out of surgery smiling and his CBC post surgery was fine, they wanted another blood draw that evening. It was pretty hard finding a vein and they didn’t get a very good sample. An hour or so after the Dr. came in looking rather panicked and told us they needed another sample because Aidan’s platelets came back a LITTLE low and they had to verify the result. So they got ready to get another sample, and the Dr. was looking even more panicked because the thought the lab had gone home for the night and he would have to the blood draw. In his words “ I can do it, but I’d rather not….”(this was the Dr. that Darren and I nicknamed Dr. TV as he was the resident on call most nights and spent all his free time – there was a lot – flaked out in the recliner in an empty patient room drinking tea and watching TV). Anyway, the lab was in and who should show up to take Aidan’s blood but the lab tech that I had the encounter with on our first visit to Calgary. Immediately she wanted to get Aidan on the bed and held down. The lab tech with her had done aidan’s draw the day before and had worked with me and found the best position for Aidan – with me holding/nursing him and quickly told the other woman that!! I was THRILLED. I didn’t have to say a word, I just grinned and thought HA! Through all this I asked the nurse what low was in terms of Aidan’s platelet count. It was 9. Yes, not a typo, 9. I nearly fainted. His counts came back within 15 minutes. All normal. Phew! It was quite a scare. It would’ve meant they took way too much marrow. His hgb was a little low, but nothing out of the ordinary and though they did start iron, we were able to discontinue it when we found out that they won’t need to get a second harvest. I was beating myself up after finding out Conor needed a BMT because I didn’t save my cord blood when I had Aidan. I had no idea Conor was sick at the time. But finding out so close after Aidan’s birth, well I was pretty upset I didn’t save it. (Turns out I couldn’t because he was born Saturday at 6 and collection can only be done Mon-Fri. between 8-4). I had actually asked my Dr. to wait until the cord stopped pulsating before it was cut, to make sure Aidan got all the cord blood. He did. Perhaps that’s why Aidan had such a successful harvest – he got every last stem cell he was supposed to and had a great start! And I guess, in a way, Conor is getting that cord blood after all.

One other event involved a ball of play dough. Conor really enjoys play dough, and I had bought him a large pack of 12 colours while in hospital. He was playing with it and his trains, together the whole stay. So there was always some laying about. One morning, Aidan was playing in Conor’s train case and was having lots of fun, and when he started to fuss, I picked him up. After a few more minutes of fussing, I figured he must be hungry and started to nurse him. He was acting strange and couldn’t get a good latch so I lay him across my lap to see if he needed to be changed. When I did that I saw something purple in his mouth. I reached in and pulled out a huge piece of play dough! He had actually worked it into the top of his mouth and I guess when he was nursing got it in there even more and it was an impression of the roof of his mouth! As if the platelet scare, 39.7 temp. and Conor’s antics weren’t enough already!! What a week!

Our stay wasn’t all bad – we did manage to make the most of it. One night we turned off all the lights, turned on some music and had a party. We used flashlights to make disco lights, ate popcorn, pop, candy, chocolates, liquorice and any other junk we could find. That was a lot of fun. There is one night in particular that stands out. It was near the end of our stay and Darren had been gone most of the afternoon running errands etc. Conor was at the end of his rope and had thrown some major tantrums, Aidan was out of sorts teething and wanted to be held constantly. In a nutshell, I was ready to RUN! Darren arrived right after the biggest tantrum, and I was just drained. We were all sitting on the bed talking and I was trying to tell Darren with hand motions that I would talk to him about it all later when Conor couldn’t hear. Well, Conor caught my hand motions and quoted a line from the movie “the master of disguise”. He’s never seen the movie, but has seen the preview on one of his other movies. In it, the character makes an opening and closing motion with his hand saying “this is what you are doing” (meaning talking) “ and this is what I want you to do” (and keeps his hand closed) the other character then says “are you telling me to shut up?” Pretty silly really, but out of nowhere Conor does this whole bit and just looks at us and waits. I started laughing, and couldn’t stop, pretty soon we all were and stayed that way for the longest time. One of those belly laughs that leave you feeling light headed and refreshed. Even Aidan got in on the fun. Pretty much everything anyone said or did after that was funny. It was so much fun. Conor loves nothing more than to make people laugh!

One other nice part of our stay was my cousin Pat dropping by with her husband and two boys. I met them in the waiting area, as we didn’t want anyone to come into Conor’s room. It was SO NICE to see them, to have visitors. They brought a wonderful care package for us with gift certificates for restaurants close by. Thank You!! Those were so helpful! It was nice to see the boys Nathaniel and Nicholas running around playing, being kids. I wish that Conor could have joined them - He had so much fun with them at Christmas. But all that will happen soon enough, and it gives me something to look forward to.

I guess that’s all. I wanted to let you all know, it wasn’t ALL bad in our two week stay. Conor is back to himself at home. Settling in. We have had some trouble with getting his counts – he fights and screams, but we are working on that. The nurses here at the hospital in Wetaskiwin handled thing very well on our past two visits and were very patient and kind to him. We got counts today and I am happy to say, things are all within normal range. Spleenectomy is a go for Tuesday. We will be admitted Monday. Please, please, keep Conor in your thoughts and prayers on Tuesday. I am so nervous about his surgery. I am sure he will do great with this as with everything so far, but worrying is in my job description! I won’t stop until he’s 110 I’m sure.

I hope everyone is doing well and this finds you happy and safe with your families. And if you’ve made it this far without falling asleep – congratulations!! Bye for now,
Kristy

**I finally finished this last night after working on it for 2 days and when I went to update, Caringbridge was down. I have finally learned to update in Word and then transfer to Caringbridge. I’ve lost a lot of updates before figuring this one out! Anyhow, Conor is doing well this morning after feeling miserable most of last night and spiking a fever of 39.7. We called the oncologist who said to “wait it out, to see where it goes”. He wasn’t overly concerned because we had had Conor’s counts done yesterday and they were normal. Conor had also thrown up just before his temp. spiked, so we were all up most of the night. We gave him gravol and Tylenol and he went to sleep pretty much right away, but it took 2.5 hours for his temp to drop down to 38.5. And then at 5 am it went back up to 39.5…another dose of Tylenol and 2 hours later it is 37.7 . Lets hope its nothing serious going on. We don’t want anything to delay spleenectomy and transplant any further. He is in good spirits this morning and says he’s feeling fine.**

Monday, March 3, 2003 10:09 PM CST

Well to sum it all up, our stay in Calgary was absolutely terrible. The harvest went well, Aidan did fantastic and has recovered fully. He even sprouted 2 new teeth while we were there. Not much can keep that boy down either! The hard part was Conor. A new environment, a new set of rules, a new group of doctors & nurses, a windowless room and nowhere to run, made for one cranky, irritated, ANGRY little boy. On our intake I told the nurse what Conor was like, how he liked to be involved in his care, how he liked to be given choices, spoken to, played with and that the best way to get anything done was just to make friends with him. Long story short, it didn't happen. On the day he was admitted, he was feeling pretty lousey. He had no platelets (4) and Hgb was lowest ever and he has spent the day hanging out in the waiting room. He spiked a fever while awaiting transfusions, and was brought into the clinic area and given a bed. 2 hours later he was admitted to his room, but it was midnight before he got transfused. He was not very happy. The next day he had bounced back to himself, he got some pretty powerful platelets and PRBC! His nurse that day did not do anything to accomodate him or us and started our stay off horribly. He fought everything. She pushed, he pushed harder. War ensued. Pretty much in that day, all we had worked so hard of the last 6 months to attain was lost. Conor's trust in people was lost. Over the next few days he made it clear, he wanted to be treated better. He asked repeatly to any nurse he saw "do you want to play with me?" only to be met with " I can't now, I'm busy". their answer was to tell the doctor conor was being uncooperative and he told us they would have to just hold him down and do what had to be done. We flatly refused. Our logic was this: you can spend 5 minutes getting to know him, talk to him, play with him, and get whatyou want (vitals etc), while gaining his trust or spend 20 minutes fighting with him and still get nothing. no one wins. Some of his nurses made the effort and it showed. Some, didn't and it made it hard on everyone. One nurse in particular made it pretty hard on him. On all of us. She routinely told us she was busy, had other kids to attend to, and always showed up with another nurse to hold him down. To which we always refused. She would talk AT us, over conor's head, ignoring him and demanding his cooperation. HE's 3! He might be a kid, but he's still a PERSON and a pretty bright one at that. I could go on and on about this. Basically the care he was given and the care we are used to him getting we totally differnt. The rules we stricter and there was NO WHERE for him to run around. We understand it is a oncology ward, there are alot of sick kids there, they do transplants there, things have to be a certain way. It really seemed to me that no one knew what to do witht he kid that wouldn't lie down and be sick! We have alot of work to do with conor before we go back for transplant. I have already spoke with the social worker here who is arranging meetings with the child life workers, nurses etc at both hospitals so we can approach this proacatively and make sure Conor gets treated the way he needs to be treated. Not just medically, but as a child and as a person. We will get started on rebuilding his trust and comfort when we go in for spleenectomy. I have asked that he be admitted a day or two before so that he is not traumatized by it all again. He has a long stay coming up in April for transplant and we really want it to go as smoothly as possible for him.
I was so upset these past two weeks seeing conor so angry, so hurt. He was fighting everyone, everything by the end. At one point 3 days before we were discharged he was standing on his bed screaming, hitting, punching, trying to pull at his lines, throwing anything within reach, just out of control angry. I was never so sad for my little boy. After he had calmed down, and we talked, I explained again why all of it was neccesary, how it was all to get better. His reply was "I don't want to get better mom". NEVER in the past 7 months with all he's gone through has he ever uttered those words. I know he doesn't fully understand them, or what it means to say that, but its never been his response before. He would always laugh and joke and talk about going to disney land to swim with dolphins or to Austrailia to Ride the Real THomas with Harry. It broke my heart to seem him so sad. He was depressed pretty much the whole stay. His only comfort was getting passes to go to the Thomas store and to RMDH. He did meet one nurse who took him on a swiper hunt and another who played trains a few times and another who played sharks and one who took a a little extra time. Those nurses made all the difference and made our time a little easier. but it seemed he only had them one day and they were gone.
His counts recovered quickly after the first week. Doubling daily. EXCEPT his wbc. He was on 2 antibiotics the entire time. We tried to be transferred a few times, but there were never any beds available in edmonton. Finally on Saturday, they said he could go on an overnight pass. We had had enough. We spoke to the doctor, told him we could get conor's counts done on a sunday at home and convinced him home was safer for conor than RMDH and that we would not take any chances, our boy needed to be home. WE needed to be home. So we left. Conor was a changed boy when we got home. He was so HAPPY. He had a light in his eye, a sense of humor and color in his face!
Amazing what seeing the light of day can do for a child!
Conor's spleenectomy has been booked for the 11th. And then its onward to Transplant! I really hope that we can resolve all of our issues before then and conor can make the best of his stay while in calgary for transplant. I know he will be sicker then than he has ever been.
and everone keeps saying that he won't up, full of energy and life. but you know what? they said that before about chemo etc. it hasn't happened. Not much has gotten him down and if conditioning does, fine. But I'm not going to expect anything to be a certain way. Conor has a amazing way of surprising all of us for the best.
Darren just asked me if I was writing a novel, so I guess its time to close, I really just needed to vent. I feel so helpless right now. I really need to find a way to put my confidence in these people's hands for transplant. I am positive they are very good at what they do and very well trained in transplant procedure will take great care of him medically. I just want him to cared for while he is going through this. Its a horrible time for him, but it dosen't have to be. It can be approached with care and humor and patience. its how we have done things so far and its worked for all of us.

Friday, February 28, 2003 8:32 PM CST

Hi. Just a quick note to say all is ok. We didn't get transferred to edmonton as hoped, there were no available beds there. So we THINK we will get discharged tomrrow. Conor's counts have been doubling daily, so with luck, we'll reach the magic number tomrrow.
Good news I neglected to mention before (or did i??) we WON'T be using the radiation. I am so happy about that.
Conor is doing well. We are all sleep deprived and gaining weight from cafeteria food, but other than that, we are hanging in there. We have been out on passes each day for a few hours and that helps.
OH!! Some really good news. The harvest went even better than planned. They got way more than they had originally thought. They had wanted 2 ( I am not sure of the units here) thought they got 2.3 , but on official count have over 5!!!! Great news. They won't have to harvest again, and they will give the total amount to conor at transplant. That is very good!
With luck we will be home tomrrow and I will have a real update soon.
Kristy

Sunday, February 23, 2003 11:27 AM CST

****Just a note to say we are still in Calgary. Everything is fine, still waiting for his counts to come up more. Platelets have doubled, wbc is at .6, still no nutraphils though. Just waiting and waiting and waiting. Looks like the spleenectomy will be delayed, it was scheduled for thursday, but not with his counts being so low! I'll update more when I can.****



Hi everyone. I finally managed to get myself out of the hospital for an hour or so. That place is so dreary, not a window in site! Conor is going absolutely batty especially since he is so used to having alot of freedom to do what he pleases. THey are pretty strict here about leaving your room etc. and he is going nuts. The set up is so he can't even get out in the hallways of his ward. If he was *sick* it would be ok, but he is his usually energetic self and being confined when you are a 3 year old full of energy is not fun on anyone! We are hangning in there though. He is feeling good and currently wearing out yet ANOTHER volenteer so darren and I took aidan here to RMDH so I could get a change of scenery. We had asked if conor could get out on a pass, but as he is still neutrapenic it was denied. Hopefully, his counts are on their way up and we will be home soon. I will try to get conor heplocked today and let him run around the halls. When asked this morning if he could do ANYTHING he wanted to day, he replies "I just want to run around". Poor little man.
Aidan is doing well. he is on antibiotics for an ear infection. HE scared me pretty good the other day with his fever hitting 39.7 at on point. Not being a patient any more I had to get the nurse to ask the doc on the ward what to do, whom called the doc on call, who called dr. lewis who was thankfully in clinic and saw aidan right way. Phew! He looked him over, said, it looked like a developing ear infection, but no signs of anything related to the harvest. He did say that fevers DO happen after harvest, the body recovering lost cells etc. so he would be fine. And he is. I think I have been nursing him nonstop all week! he takes a five minute break and is back at it again! I'm sure he's gained 5 lbs this week alone. I am so proud of my boy. He did so well with the surgery as darren wrote, came out of it smiling. They had even given him a cadaul(like an epidural) that was to last 6 hours and keep him numb, but he was kicking and squirming right away. Today he is full of smiles and gurgles. He has added dadada to his vocabulary of gagaga. and even a scattered mamama! I am so amazed at the strength of my beautiful, beautiful boys.
We should hopefully be home by tuesday. We can't wait to get home for a real meal and some room to run around!

Thank you everyone for your continued thoughts and prayers. THanks to the OctMoms for the beautiful bear, Aidan loves it. and for the angel pin for me. Thank you everyone for being here for us.

Kristy

Wednesday, February 19, 2003 4:11 PM CST

Hi everybody,just wanted to write a quick note about our extremely brave boys.Aidans stay is going great,his bone marrow harvest went very well!He awoke in the recovery room pretty happy and was all smiles when he go back to our room.The doctors said that he would be cranky and unable to move his lower body for at least 6 hrs.Well...AIDAN CRANKY!Not a chance.Once he laided eyes on his mother his look went from puzzled to laughter and he started to kick his legs in excitment(I think he noticed myself and Conor in the room!).Conors counts have come back up with blood and platlets,he was so sick when he was admitted this time around.We wanted blood and platlets before we left for Calgary but the doctors in Edmonton felt he didn't need it.What they feel and what we know are two different things.This trip would of been a much better experence for Conor if only he had of recieved those transfusions.He was so worried about his little brother that feeling so sick was just another burden for him.Now at least with him feeling better he can concentrate at doing what he does best in hospital-driving the nurses crazy.Got to go it's taken me about 30 minutes to type this(one finger at a time).

Sunday, February 16, 2003 11:32 PM CST

Wow. It’s been forever since I gave a real update huh? Well, I'm not sure where to begin really. Conor had a pretty good stay for his last hospital admit. He did get sick the first night and we added another dose of gravol before his chemo and he did better the next. He was more nauseous during the day, but he still managed to eat well and was heplocked each day to "run around like a crazy boy" as he would say. He wore me out, he wore the nurses out and he tired out the playroom staff! That's my boy. He did get a slight temp. On the second night and was given Tylenol. Then the doctor decided to give it round the clock to prevent a spike in temp. (He always gets fevers from the Ara-C), but I put an end to that the first night when the nurse tried to wake him at 2 am for Tylenol. I woke up and asked what she was doing, and she told me she was giving him Tylenol. I asked if he had a fever and she said no, so I was like???? LET THE KID SLEEP! The next day, the doctor's orders changed to Tylenol AS NEEDED. Duh! Makes sense to me! Indecently, he didn't need it at all after that! I had my usual battle trying to get him a decent meal, it gets so expensive feeding both of us 3x a day. He should be getting a hospital meal, but BLAH. I finally managed to get one of the nurses to adjust his diet in the computer (why no one suggested that before is beyond me?) she specified he liked ck fingers, KD, hamburgers, fries etc. kid stuff. So the next day he got JUST KD for lunch and JUST chicken fingers for supper. Oh well, it’s a start! They have started this new pilot program where the kids can select from a certain menu 10 minutes before meal times. It seems pretty good. Kind of a mini buffet on wheels. He got to select his breakfast the day we were leaving and it was nice to choose something he actually wanted! We were really upset he lost some weight while in hospital b/c we had worked so hard to get him to gain while at home. He is however eating well again.
Conor did amazing with all his meds, and even started taking ondanstron orally b/c he was heplocked during the day and didn't want to be hooked up for one med. He took his eye drops incredibly well, and we are so proud of him for that!

He had a lot of fun playing with some kids on the ward, Teah, just finished her treatment and had chemo end party. She was discharged the next day. She is CURED!! I forget the exact type of cancer she HAD but it is one that is CURED with treatment. I was so happy for her and her family. Conor bought her a beautiful velvet rose as a present. All his own idea. He had lots of fun with Teah's younger brother Erik, who is the same age as him. Two terrors is what they were! Playing roughly, riding tractors, smashing into one another and literally climbing the walls. It was wonderful to see Conor acting like a regular kid. Tiring, but nice.

On Sunday we went out on a pass to my Aunt Rose and Fred’s. Conor was so excited, the night before he woke up at about 3 am and was feeling sick. When I asked him what would make him feel better he said going to Auntie Rosie’s – so we made sure we did. It was a really nice visit. Rose made us a lovely breakfast of homemade waffles, it was so good to eat real food! Then Marilyn and Cathy dropped by and everyone surprised me with a birthday cake. My (30th) birthday was the Wednesday before, the day Conor was admitted, so it was a wonderful surprise.

Darren was at home most of this stay working hard at getting our floors in. He ripped up all the old carpet, pulled up a million nails then he and 3 others (whom we have never met, but volunteered there time - a local contractor and his crew! THANK YOU!!!) They did the floors - 3 bedrooms, a hallway and the den, in one day. AMAZING. Although still quite messy, my house seems so clean. Laminate floors are so CLEAN! Conor thinks we laid them just for his trains!

We got out of the hospital on Monday, but didn’t get home until late on Wednesday. We stayed at a friend’s house - thanks Tanya, Brad and Matthew for putting up with us! It was so nice to stay with you guys! - Monday and Tuesday night. We probably should’ve stayed Wednesday too, but Conor really wanted to be home. He did have lots of fun at Tanya’s though. Matt is (almost) 14 and Conor had so much fun with him, playing trains and racecars. Matthew was so patient with Conor and so good with him. It was nice to watch. Each day when Matthew came home from school, Conor would run to the door so fast, so excited to see him. And me, I was just glad for the break! One day, I actually got to cook an entire meal without interruption. Amazing. I think I need a teenager at home! We were going to stay in a hotel because we really didn’t want to put anyone out, but I am so glad we asked to stay with friends, the company was much needed. I even had an extra treat this week and spent the entire day Saturday shopping, and then out for supper. I had Aidan, but when he wasn’t nursing he was in Tanya’s arms, so it was almost like a free day for me…it was nice. But not as nice as coming home to my beautiful boy Conor saying “I missed you today mom”.

That night while putting Conor to bed we had a long talk. It started when he hugged me, then pulled away. I asked what was wrong and he told me he wished he didn’t have a broviac because it hurt when he hugged me tight. I told him it would be out soon, and he would be all cured. He then said “and we will go to Disneyland and go swimming, No more broviacs!” he paused for a few seconds and said, “I will get to grow up then Mom. ” That he will!

Well, tomorrow we leave for Calgary. Aidan’s harvest is on Wednesday. We have to be there first thing Tuesday for pre admit etc. Aidan will be admitted on Tuesday night and the surgery is around 10am on Wednesday. I am so nervous for him. He is such a little boy to have such a big job. One I know he’ll do amazingly well, but it’s a big weight for his tiny shoulders. I love his so much and I am so proud of him. My boys are truly my heroes. They are so brave and they don’t even realize it. I am convinced Aidan knows what is going on and is doing all he can to reassure me that everything will be ok. He’s such a comfort. Looking into his eyes, I find the strength I need to put him through this. He knows his brother needs him and he is ok with that. He is looking forward to spending a lifetime with his big brother. I have never been apart from Conor overnight before, so I have that worry as well. When I had Aidan I was away, but that was it. One night. About 12 hrs. Actually, so I will miss my little man. At least when Conor is in hospital Aidan can stay and I have both my boys with me.

Conor’s labs yesterday were ok, but enough to make me nervous about leaving town. His platelets are at 36, Hgb 80, WBC .2. If a fever develops he will be admitted in Calgary, but it’s still scary. Maybe we will get the family suite there! Haha.
I will try to update when I can. I may get Darren to do it, as there is a computer at RMDH where they are staying.


One other thing I wanted to say is thank you. We have received a lot of support, both finical and emotional from a lot of people. I have been unable to find the time to thank everyone individually and just want to say thank you to everyone who has helped us and enabled us to stay together as a family through all this. Its not just Conor battling this horrible disease, it’s all of us as a family. And it’s all of you that allow us to do that. So thank you all. In time, I will thank each and every one of you individually; I have saved every card, every note, every email, and every letter. We are grateful to you all.

Please continue to keep us in your thoughts and prayers.

Kristy

Thursday, February 13, 2003 10:01 AM CST

**********HAPPY VALENTINES DAY*********



Hi. Sorry for taking so long to update. We are finally home. We got out of the hospital on Monday and stayed at a friend's for 2 nights while we finished the floor in the house.
Everyone is fine. Conor's counts are pretty low and he is feeling pretty yucky. But he handled the chemo amazingly. He was heplocked everyday and managed to wear everyone out on the ward! He spent his days running circles around the hospital and driving a big tractor while pulling a wagon. There was no stopping him. Anyone who didn't know us was amazed he was even sick, let alone getting chemo!
There's lots to update, I just don't have the time or energy right now! Just wanted to post an update to say we are all well and home and enjoying how clean laminate floors are!
Kristy

Thursday, February 6, 2003 10:59 AM CST

check page for phone#(newsflash*****rusty has been found********************)

Hi all. We arrived at the hospital late yesterday afternoon. conor was thrilled to be here, despite NOT finding Rusty. He got his treatment later this time, and spent the night from 3-5 throwing up. He's still sleeping at 10am.
I will update more when I can. Darren is going to be back and forth alot and has to leave soon to go home. We are getting our laminate flooring in this week and darren has to go home to take up the old carpet.
I will try to update tomrrow.
K.

Tueday, February 4, 2003 7:20 PM CST

I just added new pictures in the album. I'll write and update later. We are off to the hospital tomorrow morning.

K.

Monday, February 3, 2003 8:15 AM CST

I posted earlier today when after I called the hospital to confirm our room. But they called back shortly after to tell us that Dr. Desi wants to wait until Wednesday because of the immunizations on Friday. So we won't be admitted today. I think we'll find a movie to see!

Conor did really well, AMAZINGLY well on Friday with his immunizations. He hardly flinched. I was so proud of my little man. I was more freaked out by them than he was. He did cry, but it was more of a forced cry because he remembered I told him it would hurt and he might cry. When asked if it hurt, he made crying sounds and said yes. When asked what I could do it make it better he grinned and told me a chocolate egg would make the hurt go away! I had him weighed/measured while there. He's 97cm tall and 37lbs. He's gained 3-4 lbs!Way to go Conor! Aidan has gained as well at 18.3 lbs. Conor just had 2 immunizations one for menigialcoccal and one for pneumoccoal infections. He had no side effects from either and enjoyed his weekend.

On Saturday, Conor's former music teacher (last summer he was in a music class that he loved, though he would never particiapte while there, he would always come home and sing and act out everything we did there), Miss Brenda dropped by with some gifts for Conor from her music students and we all had nice visit. Conor didn't waste any time getting her upstairs to show off his train track and trains and quickly coaxed her into building tracks and playing trains. Wouldn't you know it, the upstairs was a mess! oh well, Conor had fun, that's all that matters. He really enjoyed Brenda's visit and he's been playing the CD she brought often and we have been marching around the house in a parade. Thanks to Pat & Dale (nathanial and nicholas) for the instruments at christmas, we have a real marching band, I am really good with the tamporine, but not as good as Aidan, though I don't eat it!

Kristy

Thursday, January 30, 2003 at 11:26 PM (CST)

Not much to update since my last one. Conor still hasn't gotten his immunizations. He has a cough and runny nose, a lot of congestion, especially at night and a lingering temp. He's not neutrapenic so that's not really a concern, but he feels pretty yucky I think. We gave him some Tylenol today and we accident gave him the infant Tylenol which is the concentrated one, and not the children's one. He got 5 mls of the wrong med!! He should've been given 2.5 of infants. We called the pharmacy and the nurse, both told us not to worry. With Conor's weight he can take up to 3.5 of the infant one, so he didn't get too much of an overdose. Scary, but so glad it wasn't something more serious. The only side effect was it made him hyper and not sleepy. Anyway, he didn’t get his immunization today and most likely will get it tomorrow; well he has to get it tomorrow because chemo is on Monday. He needs 2-3 days for immunity to develop before chemo. I guess if he’s still not well we can push things off till Monday but that will delay chemo and at this point ANY delay is pushing transplant further away and I’d rather not delay that any longer. Conor is strong now and I’d like him to be as that way come transplant time. No new news on what we are doing there yet. Darren and I are going to do some more research this weekend and look at other protocols, what meds are used, outcome etc. and talk to Dr. Lewis again on Monday.
Did I mention in my last update how well Aidan is doing? He is just so wonderful. He sits completely unassisted now, and drinks from a cup. Not a sippy cup or baby cup, a cup, he spills a lot, but basically, he does pretty good! He’s gotten so big, and has outgrown most of his cloths again. I was trying to figure out why I didn’t have much belong to Conor to pass on to Aidan, but then I realized that Conor was this age in the summer, so all of his stuff is shorts etc. Not much good in the –35 we’ve been experiencing lately. The stuff I bought him recently is 6-12 months so; he should hopefully fit in that for a while. I usually buy a bit big so that he doesn’t outgrow stuff in a week or two. He’s been nursing non-stop it seems, and wanting to eat food. He had mashed sweet potato today and a few rice crispies. He loved those. Chewing and trying to pick them up. He doesn’t like the strained stuff too much. I can’t believe how big both my boys are! As I mentioned Conor is gaining weight and it shows. He looks much healthier. Gotta love the whole milk!
Last night Conor was just about to fall asleep when he sat up in bed and asked me if Aidan was going to make him better by putting his blood in his broviac. I said that yes he would. He said “now?” When I told him no, not now he said “ok, maybe my teddy bear will make me better now”, and with that picked up his bear and hugged it tight. He looked at me and said with his silly grin and look of amazement, hands in the air, “all the bad cells are gone, my blood’s not sick anymore mom!” I told him that if he kept the teddy close and hugged him tight that the Teddy would help him get better, by always being there for him and taking the bad stuff away. He was happy with that and quickly went to sleep. He loves that teddy bear so much. The bear was given to him by friends of ours, (Pam and Curtis) during Conor’s first hospital stay. He sleeps with it every night and always takes it with him to the hospital.
That’s it I guess. Not much but its what’s happening around here. We are pretty much just hanging around the house. Though I did get out to see my massage therapist and chiropractor today, very nice and much needed!
One thing I would like to add is about Conor’s quilt. Its not made. I just can’t seem to find the time to do it. I guess if I was experienced at sewing it wouldn’t seem like such a daunting task, so if anyone is able to assist me in making it, please let me know. I would really like to have this for him. I have a design in mind that girlfriend sent me. The pattern resembles train tracks when it finished and the first thing Conor said when I showed it to him, was “can I play trains on there mom?” So not only will it provide him with warm, and love, it will be a train track too! Please call or email me if you can help.
kristy

Wednesday, January 29, 2003 at 09:59 AM (CST)

Hi, just a quick update to let you know what is going on. First of all we are still researching our options for Conor's transplant. We have spoken to our Dr. and he is working with us to find the best treatment for Conor. He is very supportive and understanding. He knows of our concerns about the radiation and will research other conditoning methods. He said they do perform transplants without using radiation, and that neither method is any better than the other, in SOME studies TBI seems more effective in JMML. Nothing is for certain with this disease! We are more comfortable with radiation, have read enough and gathered enough info not to be so terrified by it, but not so much so that we are ready to use it for Conor. They are planning 1200 over 4 days broken up into 150 2x a day for 4 days. One thing that I really didn't get is we were told that is the dosage for ANYONE getting TBI. 35lb Conor or a 200lb man. That is hard to understand. Anyway, we are still researching and nothing is for certain yet.
Speaking of conor's weight, he has gained!! He is up to 16.2kg from 15.5! That's a big jump in a little over a week. We started giving him whole milk and its working! Why we didn't do that before is beyond me. He is eating very well though. And I hope he continues to. We are slowing changing his diet for the better, elimiting junk and empty caloires and its showing. He still gets a small chocolate fix everyday, but not so much as he once did. He LOVES the little kinder surprise eggs and is always after us to buy him one. They have become our bargining tool with him.
We have decided to go ahead with the spleenectomy. We don't like it, we don't want it, but if it improves the odds, then we will do it. It seems so cold to speak of our son and his illness in that way, but sadly, that's what it comes down to with JMML, finding a way to beat the odds. A relapse is less likely to happen if we remove the spleen. Conor will get 2 immunizations to help him once his spleen is removed. He was supposed to get them yesterday but is still coughing and sneezing and I won't get them until his cold is gone. That is delaying his chemo, but I'm ok with that.He was scheduled to go in tomrrow but it will now be on Monday. If he gets the immunizations a few days before chemo, he will develop the immunity (hopefully) before the chemo acts on his body. Apparenlty chemo will prevent new immuntity from forming, but may not wipe out immunity already present. *sigh* seems like such a guessing game sometimes. So we need to allow a chance for his body to develop immunity after getting the shot, then move on to chemo.
Aidan is scheduled for the 18th of February for his harvest. We will spend a few days in Calgary then as Aidan will need to be there a day before and after his bone marrow harvest. When we return from that, Conor will get his spleen removed and things will progress pretty quickly from there on.
The other day we stopped into the hosptial to look for a train conor lost during his last stay. (Rusty who only comes in a set, and who conor has been crying about daily since we lost him!! hopefuly he'll turn up) Anyway, while there he made wishes in the fountain while throwing coins. "I wish to be better, I wish for a cookie, I wish for ice cream". every time I ask him to make his daily wish on his wish bracelet, he says the same thing "i wish to be better". I hate that he knows he is sick. No child deserves this horrible, or ANY disease. He is such a spirited boy. And so FUNNY! He is always saying or doing this to make us all laugh. I try to remember each moment to write it down, to write it here, so every update isn't so just about medical stuff but whenever I sit here, my mind goes blank. I'll have to start writing them as they happen, that way, you can get as much joy out of the Conorisms as we do :). He is really into reading books and building complex train tracks everyday. I am constantly amazed by his ability to figure out how to lay out the track! Yesterday I was trying to figure out how to help him make a track go the way he wanted it to, I was interchanging pieces, adding tunnels, etc and he looked at me and told me to hold on, then rearranged another section of track, added a piece and made it all fit! I was amazed. I NEVER would've thought to use the pieces the way he did. Such a smart boy! this morning I ran to answer the phone while we were eating breakfast, I had been feeding Aidan cereal that the time and he (aidan) got a little upset that I had stopped. When I came back in the kitchen a minute later, conor was feedind aidan his cereal and looked at me and said "i got it mom,he's ok". When he's not sitting on Aidan or trying to pick him up by the neck or ears, he's a very loving brother.

Please remember all the other kids fighting this battle in your thoughts and prayers. Especially little Colby who is getting his transplant TODAY! You are a strong and wonderful boy Colby. An inspiration to us all. And wonderful news for Jake - His tests showed 100% donor cells! Wonderful news! Also wonderful news to hear Connor S. is at home after a long hospital stay. Glad to hear it Connor! You are an AMAZING boy. So strong!! There have also been some diagnosis of JMML recently. Please remember their families too.

Wednesday, January 29, 2003 at 09:59 AM (CST)

Hi, just a quick update to let you know what is going on. First of all we are still researching our options for Conor's transplant. We have spoken to our Dr. and he is working with us to find the best treatment for Conor. He is very supportive and understanding. He knows of our concerns about the radiation and will research other conditoning methods. He said they do perform transplants without using radiation, and that neither method is any better than the other, in SOME studies TBI seems more effective in JMML. Nothing is for certain with this disease! We are more comfortable with radiation, have read enough and gathered enough info not to be so terrified by it, but not so much so that we are ready to use it for Conor. They are planning 1200 over 4 days broken up into 150 2x a day for 4 days. One thing that I really didn't get is we were told that is the dosage for ANYONE getting TBI. 35lb Conor or a 200lb man. That is hard to understand. Anyway, we are still researching and nothing is for certain yet.
Speaking of conor's weight, he has gained!! He is up to 16.2kg from 15.5! That's a big jump in a little over a week. We started giving him whole milk and its working! Why we didn't do that before is beyond me. He is eating very well though. And I hope he continues to. We are slowing changing his diet for the better, elimiting junk and empty caloires and its showing. He still gets a small chocolate fix everyday, but not so much as he once did. He LOVES the little kinder surprise eggs and is always after us to buy him one. They have become our bargining tool with him.
We have decided to go ahead with the spleenectomy. We don't like it, we don't want it, but if it improves the odds, then we will do it. It seems so cold to speak of our son and his illness in that way, but sadly, that's what it comes down to with JMML, finding a way to beat the odds. A relapse is less likely to happen if we remove the spleen. Conor will get 2 immunizations to help him once his spleen is removed. He was supposed to get them yesterday but is still coughing and sneezing and I won't get them until his cold is gone. That is delaying his chemo, but I'm ok with that.He was scheduled to go in tomrrow but it will now be on Monday. If he gets the immunizations a few days before chemo, he will develop the immunity (hopefully) before the chemo acts on his body. Apparenlty chemo will prevent new immuntity from forming, but may not wipe out immunity already present. *sigh* seems like such a guessing game sometimes. So we need to allow a chance for his body to develop immunity after getting the shot, then move on to chemo.
Aidan is scheduled for the 18th of February for his harvest. We will spend a few days in Calgary then as Aidan will need to be there a day before and after his bone marrow harvest. When we return from that, Conor will get his spleen removed and things will progress pretty quickly from there on.
The other day we stopped into the hosptial to look for a train conor lost during his last stay. (Rusty who only comes in a set, and who conor has been crying about daily since we lost him!! hopefuly he'll turn up) Anyway, while there he made wishes in the fountain while throwing coins. "I wish to be better, I wish for a cookie, I wish for ice cream". every time I ask him to make his daily wish on his wish bracelet, he says the same thing "i wish to be better". I hate that he knows he is sick. No child deserves this horrible, or ANY disease. He is such a spirited boy. And so FUNNY! He is always saying or doing this to make us all laugh. I try to remember each moment to write it down, to write it here, so every update isn't so just about medical stuff but whenever I sit here, my mind goes blank. I'll have to start writing them as they happen, that way, you can get as much joy out of the Conorisms as we do :). He is really into reading books and building complex train tracks everyday. I am constantly amazed by his ability to figure out how to lay out the track! Yesterday I was trying to figure out how to help him make a track go the way he wanted it to, I was interchanging pieces, adding tunnels, etc and he looked at me and told me to hold on, then rearranged another section of track, added a piece and made it all fit! I was amazed. I NEVER would've thought to use the pieces the way he did. Such a smart boy! this morning I ran to answer the phone while we were eating breakfast, I had been feeding Aidan cereal that the time and he (aidan) got a little upset that I had stopped. When I came back in the kitchen a minute later, conor was feedind aidan his cereal and looked at me and said "i got it mom,he's ok". When he's not sitting on Aidan or trying to pick him up by the neck or ears, he's a very loving brother.

Please remember all the other kids fighting this battle in your thoughts and prayers. Especially little Colby who is getting his transplant TODAY! You are a strong and wonderful boy Colby. An inspiration to us all. And wonderful news for Jake - His tests showed 100% donor cells! Wonderful news! Also wonderful news to hear Connor S. is at home after a long hospital stay. Glad to hear it Connor! You are an AMAZING boy. So strong!! There have also been some diagnosis of JMML recently. Please remember their families too.

Saturday, January 25, 2003 at 04:37 PM (CST)

Well we've been back from Calgary nearly a week, so I guess its time to update. It’s been a hard week since our visit there; I guess the reality has finally sunk in. We do have a sick child. He does need a bone marrow transplant, and without it, he won't live another year. It is so hard to comprehend all this when he looks so good. No one can tell he is a child with a horrible disease. He is full of energy, humour and is just a regular 3-year-old boy to look at. God, if only that were true.

The trip to Calgary was eventful in many ways. First on the way there, the temperature gauge on the van started acting up and showed that we were overheating. We pulled off to the side of the road to see if it would go down. It didn't. We were on the shoulder of the highway, which was NOT a safe place to be so we had to move. We managed to find a small off road and moved in there and waited. Darren got out and checked the engine. It wasn't even warm, let alone near overheating, so we continued on. Throughout the rest of the trip the gauge continued to fluctuate, but it hasn't happened since (touch wood!)

Once we got into Calgary we of course, got lost. After much back tracking and map consulting, we found our way to one hospital, which gave us directions to the one we needed to find, which in turn told us how to get to Ronald McDonald house, where we quickly ordered a much needed pizza for supper! RMDH was amazing. It was so clean and comfortable. We all enjoyed our stay there, but not nearly as much as Conor who quickly settled into the playroom and learned to operate the elevator. We stayed in a room on the main floor, which is off a separate hallway from the main house. It was one of 4 rooms set aside for transplant families, equipped with TV, VCR and no carpets. Very nice. Even though RMDH policy says there is no eating outside the kitchen, immunosuppressed kids are able to eat in their rooms. It’s a good set up especially when we will be there for up to who knows how long after transplant. We will be looking into getting an apartment near the hospital during those months though. There are some available to transplant families on a first come basis. I would much rather an apartment as that would enable us to have a family member come help out with Aidan and it will also keep Conor more isolated. As nice as RMDH is, there are still non-transplant families there and not everyone takes the steps we would like to keep Conor free from infection. When we are home, during and after chemo, we keep him, and ourselves pretty isolated, we don’t allow visitors etc. so it makes me nervous to be around so many people. Even with everyone being very careful, people still get sick and I don’t want to pass that on to Conor.

Ok, on with visit. On Monday we visited the hospital and met our Dr. and transplant nurse. Both we liked immediately. Everything was explained and we were given plenty of time to ask questions and get info. Conor was kept busy with a child life worker and had lots of fun playing trains. Aidan slept through most of the meeting. Aidan was given an exam and got his blood drawn (I already filled you in on THAT experience!). The plan is to bring Aidan down 2-3 weeks prior to transplant and harvest the bone marrow then. It will then be frozen and used the day of transplant. That way, if there are any problems, not enough etc. they can go back and take more. It is a precaution that serves both Aidan and Conor. It saves Aidan the risk of too much being taken at once and allows for recovery time to heal and build up his bone marrow. And it saves Conor from being at risk of not having enough bone marrow to infuse on Day 0. On the day of harvest from Aidan he will be put under general anaesthesia, and two doctors will remove bone marrow from his posterior hips simultaneously to save time, and not have him under aesthetic for too long a period. The doctors will have an amount they know they need to take based on Conor’s size and Aidan. What Conor needs and what Aidan can give will be carefully measured. If the dr. has to ‘push’ a little and take more than Aidan can readily give, but he can safely do so, the dr. said he would do that to save Aidan from another surgery. But Aidan will require a blood transfusion and we had Aidan blood typed to see if Darren or I could donate. I am AB+ and Aidan is B+ so I can’t do it, but Darren may be able too. He doesn’t know his blood type so we are looking into that. If I am AB and Aidan is B, wouldn’t Darren have to be a B? I can’t remember much from gr.9 science on that J. All that with Aidan is scary enough. They went through all the risks, side effects etc. And we are confidant that Aidan will come through ok. They will keep him over night though for observation. Poor little man. I know he is a strong boy and if he knew what he was doing wouldn’t hesitate for a second, I just hate that my baby, my babies have to go through any of this. In comparison to what Conor will endure, Aidan’s harvest is small but to a mom, it’s just as frightening to see her baby go through either.

Now for Conor, where do I start? Although, we’ve spent all week talking to each other about everything and researching etc. its only now, I’m able to write about the actual transplant procedure. It really scared and shocked us. To hear the dr. speak of everything they will do to Conor. Basically, they bring him in, nuke him, pump him full of poison, and bring him to the point where he will die without bone marrow infusion, infuse him and hope for the best. If the treatment, or its side effects don’t kill him, we’ll be home in 100 days. Sorry, it’s a little too much put like that isn’t it? I guess I’m to the point where I can (I have to be light about it, joke about it, or I will NOT be able to handle the reality of it). The treatment is this:
Day-7, -6, -5, -4, he will be given TBI (total body radiation) it is given 2 x a day a few hours apart. He will be transported by ambulance to the tom baker centre, sedated and given the TBI then returned to the hospital
Day –3, -2, he is given Cyclo (Cyclophosphamide), which is an IV chemo drug, he will also be given ATG (anti – thymocyte globulin) to lessen the chance of GVHD, graft vs. host disease.
Day –1 he is given only ATG and rests
Day 0 is transplant day. Aidan’s bone marrow will be infused into Conor like a regular transfusion.
Then we wait for the bone marrow to graft and start making new marrow in Conor. This usually happens around day +19. During this time Conor is kept in isolation, given meds for GVHD, antibiotics, blood products etc. So those of you who are in the Calgary area who are AB+ compatible we’ll be looking for you to donate blood and mostly platelets! Conor will need lots of those and they only have shelf life of 3 (5?) days once donated. So we’ll be calling on you to get to your nearest blood services to donate what you can! You can start looking into now if you’ve never donated before to get the screening underway.
There are lots of scary things that could go wrong. Mostly we are concerned with the radiation and will be looking into whether that is necesary or if we can use an all chemo protocol. Some studies suggest that with a matched sibling donor, chemo works just as well as TBI. We are also concerned about the fact that although Conor will be in isolation, it is a teaching hospital and any one can come and go, that and the fact that the ward doesn’t require full mask, gown, gloves etc. Seems silly to keep him in isolation an expose him to so many people who have contact with so many others. There is nowhere worse for germs than a hospital!
Conor is scheduled for another round of chemo next week. But we will meet with our doctor here in Edmonton to go over spleenectomy plans on Monday first. They also want Conor to get 3 immunizations prior to spleenectomy, which, to me makes no sense. They plan on giving them on Tuesday coming, and then give him chemo on Thursday. He will get the spleenectomy in approximate a month. Now first off, to the best of my knowledge chemo will wipe out any immunity anyway, so why immunize before? Why put him at risk of the side effects of immunizations only to wipe out the immunizations? Neither Conor nor Aidan have been immunized at all and I didn’t plan any, so this really concerns me. Especially if they are going to give him radiation anyway. There really doesn’t seem to be a need. If anyone knows anything about this, please feel free to email any info. We were told that the immunizations might offer his some protection before and during transplant. If that is the case then isn’t it saying that the transplant will fail b/c if Conor has immunity left, he has bone marrow left and that means the transplant is failing before it starts. Am I making any sense here??? Also we are concerned about the need to remove Conor’s spleen, which is not enlarged nor ever has been. Why remove a healthy organ? Why weaken him with major surgery and then bring him to transplant? So many questions!!!
The time line now looks like this. The week of the 27th in for Chemo, followed 3 weeks later by spleenectomy. Somewhere in there Aidan will travel to Calgary for harvesting. Once Conor recovers from spleenectomy, we will go to Calgary for conditioning and transplant. I believe it is scheduled for the 24th of March.
Thanks to everyone for you continued support. Without it we wouldn’t be handling this all so well. Recently I purchased a Bruce Springsteen CD, why I am not sure. I have never been a fan, but something prompted me to buy his newest release. I am so glad I did. It has given me a lot of comfort. One song in particular, brings to mind each and every person reading this right now, and a lot more who I know are constantly thinking of us, praying for us, and offering us so much support everyday. Here are the lyrics from “Into the Fire” that let me draw from each of you what I need. On any given day, we need some if not all, of these things and it is all of you who give us that which we need. So thanks for always being there for all of us. I find myself reciting these lyrics when I need strength. They are quite simple, but have become my daily mantra.

May your strength
Give us strength
May your faith give us faith
May your hope give us hope
May your love bring us love

Kristy

Monday, January 20, 2003 at 09:10 PM (CST)

Meeting went well. We will be home tomrrow. Conors counts are up and looking good. Good thing his platelets are at 240, he fell of the chair and landed on his head earlier! Its been one of those days...first on the way to calgary we had trouble with the van, then today we left the lights on and needed a boost, then conor falls on his head! Hopefully tomrrow will be better.
Please keep all those positive thoughts and prayers coming our way. Its starting to get a little rough for us now emotionally. Its all sinking in.
I KNOW with utter certainty that Conor will beat this JMML, and he'll come through this transplant stronger than ever. Its just hearing and seeing what he has to go through that is so hard to handle. I will never be prepared for what is to come.
RIght now, he's happy, full of energy, lots of spirit and just having fun. Aidan is full of smiles too. Aidan had blood drawn today and the lab tech wouldn't let me nurse him while she did it. I nearly lost it at that. She actually tried to get me to leave the room! THAT I would not do. I've learned that I do have a say in what is done and not done to my kids. Next time, I will insist on nursing him through it. He cried so hard, I KNOW that if I had nursed him the pain would've been less. Poor little guy. He was fine as soon as it was over and I held him and nursed him. He's a strong boy.
I'll give more details tomrrow. Just wanted to check in and let you all know we are doing ok.
Kristy

Friday, January 17, 2003 at 09:34 PM (CST)

Hi. We are finally home. Its been a long week! Conor is very happy to be home, as we all are and as usual he ran for his trains as soon as we walked in the door. Our hospital stay went rather well, Conor gave each of the nurses a very hard time, not allowing them to do anything without first putting up a fight. As difficult as he can be, I love and admire his spirit and his energy. NO ONE we met during our stay had any idea Conor was even sick. Most people thought we were visiting other famlies or that he was in for something minor. Conor enjoyed going to the beach, playing in the play room and genrally entertaining everyone he met. He was very sociable with everyone. One day he noticed a Happy Birthday sign on one of the patient doors. He asked if it was a birthday and the nurse told him it was, but the girl (a teenager) was very sick and she wasn't celebrating. Conor said he remembered being in the hospital on his birthday and asked if he could make her a card. He made Nicole a card and a braclet then brought it into her. We were all very touched by his thoughtfullness. He also wanted to go downstairs and buy her a teddy bear and a Bob the builder cake!
Aidan, as usual, was a very good boy during our stay. He spent his days smiling and laughing at everyone, and was no trouble at all. He charmed everyone he met.
Tonight was our family movie night. Every Friday night we rent a movie and order pizza. Tonight we watched Jimmy Neutron, Conor seemed to really like it, but Darren loved it! In one part of the movie, Jimmy and his friends are blasting through space and encounter a metor shower, Conor asked if it was shooting (as in guns)- I told him no, it wasn't, it was falling stars... to which he replied " Its rocks too mom - ROCK STARS!! "

We are all very happy to be home.
Kristy

Thursday, January 16, 2003 at 05:07 PM (CST)

Hi. Just wanted to let you know that we are staying another day. Conor still has no neutraphils and his wbc is at .7 so we thought it best to stay another day to see how his counts do and keep him on the antibiotic. Better to stay than go home only to have to return.
He had a 4 hour nap yesterday and woke full of spirit and energy. One of his favorite nurses, Susan was here this morning and he was so excited to see her. He is doing good and hopefully we will be home tomrrow.
We are going to Calgary on Monday for our meeting that was we had to rescheudule from today.

Kristy

Wednesday, January 15, 2003 at 11:02 AM (CST)

Hi all. Conor is doing well and we are hoping to go home today after his afternoon meds. I don't know if we'll be going to Calgary as planned tomrrow or not. It all depends on when we get out of here. We definately won't be going if we have to spend tonight here.
Nothing has shown up on his cultures, there have been no other fevers (not above 38 anyway). Platelets and Hgb are ok, down a little from yesterday, but only by a bit. WBC is still low. It dosen't seem to be moving at all. He's still at .5, and staying there. I will talk to the doc about that this morning. It seems to be staying low alot longer this time and I'm not sure what that means.
I bought all of us wish bracelts the other day. They are braided braclets with 7 blue (for healing) woven into them. Each day you rub the beads and make a wish. Conor's is to go home every time. He misses his home, his trains, and his friends. Poor little guy. HOpefully we'll be able to get home soon and spend a few days there before heading to calgary.
Conor is at "the beach" right now fishing. Its a large playroom run by childlife that has all kinds of water play and sand tables. He loves it there, and they are really good about keeping the kids apart and encouarging hand washing, washing the toys etc. So as much as I don't want him around other kids I don't mind him going there (too much!) He loves it there and has been in a much better mood since I've let him go play. Yesterday while waiting for the beach to open we were watching tv in his room and Conor jumped up and said "do you hear that mom? can you hear it?!?" when I asked him what he heard he said "the beach mom, its calling me. Its saying come play with me, come play with me Conor!"
Thanks to Nana, keith and uncle steven for the balloons.
I'll let you know when we get home!
kristy

Monday, January 13, 2003 at 03:09 PM (CST)

Hi all. I was right when I posted yesterday, Conor was admitted yesterday for fever. We waited 4 hours in the ER where the staff didn't have clue. One nurse wanted to do a retctal temp., one wanted to start an IV. No one knew the correct procedure for drawing cultures, or accessing his broviac. He got really mad and fed up with being poked at by everyone. It amazes me how people can work in the ER and be sent in to take care of kids without knowing what to do in EVERY situation. Not to mention that he is neutropenic and no one thought to so much as wash their hands before touching him without darren or I pointing it out. I had to give step by step dirctions on everything. I'm sure every nurse hated me there, but I didn't really care. I was fed up and mad that they didn't know what to do and were doing things wrong. I was just going to walk out of there and go straight to the ward with him I was so mad. Next time I will. He didn't need all that they put him through. Thankfully darren and I always pay attention to procedure and knew what needed to be done and how to do it to point it out and correct mistakes being made. Anyway, I could go on forever so I'll stop now...
It was a hard night for everyone. He was still feverish after being admitted and slept poorly and had nightmares. He finally got to sleep at 5 am. And woke at 9. I was up at 7 to the sound of his machine alarm. Ugh. I hate that thing. No one got any sleep.
They took cultures and blood for cbc. His wbc is still only .4 . Scary. Its been bottomed out for 2 wks. He seems fine, a little sniffly, and irritable, doens't want to be looked at or touched but I think a good sleep will improve his mood.
Hopefully it won't be anything and we will be home by wednesday.
kristy

Saturday, January 11, 2003 at 10:50 PM (CST)

Sorry its taken so long to update, but its been pretty crazy around here. Mostly its just been conor that's crazy, but we all decided to join in! Lately he's been just out of control crazy. Demanding, irritable and your average all around 3 year old who's fed up with medications, being poked at and not allowed to move outside the door. He's just tired of it all I think. He just wants things to be normal, like they used to be. Its so easy to see that from his behaviour.

He still takes his medications well, and even the eyedrops are getting easier. His eyes are still light senstive and irritated. He asks for the eyedrops and sometimes, we don't have to sit on his head to get them in.
His counts are still pretty low. Last Monday his platelets were at 5 when we had them transfused and they only went up to 22 on wednesday, so he needed more on Thursday. Both times, things went pretty smoothly. His Hgb is hanging in there at 91 (Thursday) so we haven't needed PRBC yet. He had one transfusion while in hospital, but that's it. As of Thrus. he is still neutropenic. No fevers yet though. He still flucuates around 37.5 up to 38 one day and back down. Today though its been staying down and at night drops to as low as 35.2.

We finally have a meeting with the transplant docs coming up this thrusday in Calgary. They are going to check out Aidan, Conor, and figure out where to go from there. Right now, they are thinking one more round of chemo at the end of this month, recover, Spleenectomy in Mid feb. and transplant mid March. Not sure why they are adding the second round of chemo, maybe they think aidan won't be big enough or strong enough, so that could all change. There is some concern apparently, about being able to get enough from someone Aidan's age and Aidan's ability to recover the marrow they take. I know, if Aidan were old enough he'd tell us he'd want to do what ever he could for Conor. Just the seeing him look at Conor, the way he smiles, the way he laughes at everything Conor does (including jumping on him and picking him up by the head), he loves his brother very much. Conor is very protective of Aidan and still needs him whenever he's upset. The other day I took Aidan in for a check up. When I told Conor that I was taking Aidan to the dr. he got pretty upset, saying Aidan didn't need dr. that he wasn't sick and he had to stay home. He was pretty worried about his baby brother. Aidan is doing great at 16lbs 14 oz. He's 67 cm tall and doing well with all his milestones. His biggest thing lately is wanting food. I mean food. Not baby food. Real food. He gets quite upset when we are all eating and he's not. Even if I feed him cereal or baby veggies at the same time, he wants to be up, at the table and grabs for our plates. He loves water, but will only drink it out of a glass, won't take a bottle or sippy cup. Mostly though he wants food. I think he's trying to get bigger and stronger fast! Conor is always trying to feed him everything including his feet.

I haven't started working on conor's quilt yet if there is anyone who wants to send fabric there is still time. I really, really need to start it soon. I just don't know where to start. Time is a big issue, but I really want him to have this quilt to take with him. I have lots of differnt fabric pieces and already it means alot to me, I often take them out, thinking of all the people who sent them and all the love that came with each piece.

Mostly we are all doing good, sitting around the house, driving each other nuts, but we are hanging in there.
Kristy


Sunday Update:
When will I EVER learn?? I should never have mentioned that Conor hasn't spiked a fever. He is currently at 38.2, at 38.5 we call and go into the hospital. I am not TOO panicked yet b/c his other ear is at 37.8. Anyway, looks like a fever stay in our near future.
K.

Sunday, January 05, 2003 at 12:08 AM (CST)

Happy New Year!

I can't believe we have been home since Wednesday and it is only now I have a chance to update! Things have been so busy. Conor did really well with his latest treatment. He did get sick a few times the first night, and only once after that. He was heplocked just about everyday as his treatments started at 5 pm each night, and he was free to run around all day. We'd go to the playroom and once we left the hospital to visit my great aunt (auntie rosie as Conor calls her) and Fred. Her daughter and husband were there with their two children too, so Conor had lots of fun playing with all their new Christmas toys (Thomas stuff!!). We were able to have a nice sit down lunch and tea; it was so nice to get out of the hospital for a while. Conor had a lot of fun.

As usual he spiked a fever 2 or 3 times. They drew cultures but were not too concerned because he had gotten fevers before from the Ara-C. He need gravol this time to control the nausea, which he was given 1/2 hr. before the ara-c and then again 2x over the course of the night. He was able to sleep through his treatment and not be confined to his bed all day feeling lousy. He spent ALOT of time at the nurse’s station, he likes all the nurses when they aren't poking at him, but he spent a lot of time with one particular nurse, Susan. He's still asking for her! He made her a special necklace from his craft kit and she wore it the whole time we were there. Even when she wasn't his nurse he'd find ways to get her in his room or follow her around taking care of other kids. He is now known as dr. ketchup and I even found a Heinz ketchup shirt for Christmas (thanks Allison!) so he looked the part too.

Our New Years was uneventful. Conor was feeling pretty cranky and tired and was asleep by 8, we had ordered pizza for supper and watched a movie. It was great to start out the New Year at home though. We arrived home at 2 on New Years day.
Conor only needed platelets and PRBC once. They hadn't planned on a doing a CBC but I asked b/c he didn't look himself. Thankfully I did ask b/c his platelets were 16 and his hgb was low as well. After his transfusions he had so much energy he was running in circles around the ward.

He took his meds really well, even swallowing his pills once! The Ara-C has really bothered his eyes this time and we are having trouble with that now at home. We had to call and get a prescription for the eye drops because the day we left the hospital we made a bid deal out of throwing away the drops he was being given. His eyes never bothered him before, and we’d never had to give him drops at home before. Guess we jinxed ourselves there. His eyes were so bad on Friday morning he wouldn’t open them and cried for me to put drops in them. It was an hour before he would open them and even longer before I was able to turn on a light. Both nights I had to give him gravol so he could sleep. He was to upset and in too much pain to sleep. I wanted to give him Tylenol but I was afraid to since we hadn’t gotten his counts done since we’d been home. We did do them yesterday though and it looks like the chemo did its job. His WBC is 0.6 and his platelets are 26. Looks like he will get transfused on Monday. I wanted to do it yesterday but they (the cancer clinic) felt it was ok to wait until Monday. I hate waiting, but he seems fine, no bruises or anything. His hgb is fine at 110, but he is neutropenic so we haven’t left the house. Except to have his counts done and to have his eye checked. Both times he waited in the car until they were ready for him. It seems like everyone is sick wherever we go. It really freaks me out.

He’s more of himself today. Still a little cranky and somewhat irritable, but more himself than he’s been all week. He was eating well today too. Though he did say he felt sick tonight and even threw up a little, but it seemed forced, like he felt nauseated and just wanted to be sick to feel better. Poor little guy had to be given gravol again, he was coughing and trying so hard to throw up, I was afraid he’d hurt his throat. He threw up once in hospital when his platelets were really low and he threw up some blood, so I did not want that to happen again.

We spent most of today rearranging our upstairs. We now have a family room instead of separate bedrooms. We have always co-slept but Conor has had his own room too. He’d shuffle between our bed and his. But since he’s been sick we didn’t want him sleeping alone, so he’s been sleeping with me every night. Aidan spends most of his nights in our bed too, so we moved the crib out and put Conor’s bed in our room. Our bed is a bit higher, but we pretty much have one big bed now. This way Darren can sleep in the same room with the kids and me. He was the one kicked out of the bed to make room for the two kids! Too bad we didn’t think to buy a King size bed when we bought our bed two years ago, would’ve made things a lot easier! Our dressers and everything else have been moved into the spare room. I think we’ll all sleep better being closer together, with more space. We also took down our tree finally, now I have to find space for all the toys. It’s a good thing we have an empty bedroom now; we need it for the toys.

I have some new pictures to add to the photo album in a few days so check back in a few days for those. We had a nice quiet Christmas, and all the cards, and gifts we received from friends and family, and co-workers overwhelmed us. Thank you to everyone for your continued support. We don’t know what we would do without it.

Thursday, December 26, 2002 at 10:53 PM (CST)

We've had a wonderful christmas at home together. Conor even got to meet Santa, who was still here Christmas morning when he got up! Its a pretty funny story, I'll tell when I have more time. We stayed close to home as Conor is just not himself and not feeling up to much travel or company. But we had a great time all the same. Our livingroom looks like a Thomas The Tank Engine set. Aidan fared pretty good too :).

We are off tomorrow morning for our hospital stay. We should be there for 5 or 6 days. I will update when I can. I'll post our room number and phone number if we get a phone. I Hope everyone is having a wonderful holiday!
kristy

Tuesday, December 24, 2002 at 11:08 AM (CST)

Happy Holidays everyone! I wanted to update today as I probaly won't get a chance for the next few days. It looks like we will be going in on the 27th for chemo. Dr. Desi says we can wait until the 30th, but there's so much going on with Conor I want to get him in as soon as possible. The biggest thing right now is that the accutane seems to be really causing problems with his skin. He has a rash on his face, legs and arms. Even his hands. No matter what cream we put on it, it stings alot. We may have to talk to the doctors about discontinuing it. It doesn't seem to be doing its job, so it probally won't matter if we did. Other than that, he seems a little pale, but is still full of energy and spirit. We spent yesterday making some gifts for conor's friends and this morning we baked sweet potato biscuts and made chocolate. Its been alot of fun.

Other big news in our house is that Aidan has gotten two teeth! The two bottom ones showed themselves yesterday. What a big boy! He'll be 5 months on the 3rd of January. Where on earth did the time go? I could swear I heard him say "mom" earlier today as well. He is a big strong boy, he seems to know he's got a big job ahead of him. He's eating 24 hours a day. Its hard on me, but I get to eat anything I want and I 'm still losing weight! Gotta love breastfeeding.

We are all pretty excited about christmas and we are really happy we are home, together and that Conor isn't too sick right now. I can't wait until tomrrow morning so he can open all his presents and just be a kid for few more days before starting on the long road ahead of him.

I want to say thank you to everyone for being there for us these past few months. Our family has gotten so much support, so much love its truly overwhelming. I am not sure what to say other than THANK YOU. Thank you for giving us this time together as a family. Thank you for helping us have a nice christmas. Thank you for the shoulders to lean on, and to cry on. Thank you for being there for to offer us whatever it is we may need at any given time. Thank you for your prayers for our family and for Conor's health. Thank you for your friendship and thank you for your love.


Please help us in remembering all the children and their families touched by this horrible diesease, and in wishing them all the best, and a Happy, Healthy New Year to everyone.

Kristy, Darren, Conor, Aidan
Merry Christmas

Friday, December 20, 2002 at 09:08 PM (CST)

Just a quick update. We met with Conor's doctor today. He explained all conor's recent counts. Basically, WBC is continuing to rise. Platelets are going down and his monocytes are continuing to go up.Today his wbc was at 25.1 and his platelets at 56. It is obvious that it is his disease and not a virus like we were hoping for. So now the plan is to bring him in for another round of chemo on the 27th or 30th. We haven't decided yet as what day we will go in. This chemo puts us on track for transplant. We have no definate dates yet, but it looks like spleenectomy will take place in Mid January and Transplant 3-4 weeks after that.
This time frame may change a bit, depending on Aidan.We have to meet with the transplant doctors in Mid January before transplant, and make sure Aidan is strong enough and big enough to be donor. If not we will have to wait if possible. Apparently they have still been searching for an unrelated donor in case we can't wait longer for transplant. But we are fairly certain things will work out with Aidan. I will much rather wait if we can than use an unrelated donor when we have a perfect 6/6 related donor.
His doctor said today that Had Aidan been older at time of diagnosis, Conor would've went to transplant in October.
So that's where we are right now. We are home for christmas and then on the 27th in for chemo. Conor is doing fine, looks well, and has as much energy as ever. Thankfully, he's handling it all fairly well.
Kristy

Saturday, December 14, 2002 at 11:43 PM (CST)

Well, where to begin? Last I wrote on Wednesday Conor was taking his pills on his own. It was a novetly the first time I think because the last two nights have been a battle reminicant of our first days with medicine taking. But we are getting through it. Tonight was easier than last night, so I hope tomrrow will be better. Now that we know he can swallow the pills we want him to keep taking the accutane that way to ensure he's getting 100% of his dosage. We promised him everything tonight, what finally won out was letting him hand deliever our christmas card to our neighbours (his friend cassie). Unfortunately she wasn't home, but he was happy just to put on his santa hat and deliever it anyway. After that we ate cookies in bed and watched his new Franklin Christmas movie. I'm glad he chose that one, I like it!
His counts were done yesterday with some changes, for the good I hope! WBC is still pretty much the same. It jumped to the 20 mark and is staying there. Hasn't moved much since last week. Platelets, which were slowly dropping actually went up by ~20. To add to that, he had pretty bad diaherra and some vomiting for 2 days. Thursday and Friday. And a slight tempature. So hopefully that was the cause of the counts going wacky like they did. We just have to wait and see. He saw our family doctor in emerg yesterday when he had his blood drawn, and he looked him over and checked his levels for dehydration etc. and all that came back good, so the gastric upset hasn't affected him much. He was still eating and drinking despite the vomiting etc.
I finally got a chance to talk to Conor's nurse late Wednesday and we cleared up some stuff I was concerned about. She explained how a simple virus could cause his counts to go off b/c 1. it would do that to a healthy person anyway and 2. conor's bone marrow is still recovering so it would knock it down easier and have to work harder to fight off the virus. Made me feel a little better, but I'll feel even better on Monday when we see the counts again.
We did get a copy of Conor's chart from the hospital. Not everything I expected (I guess we are only entiled to certain stuff?? weird) it was alot thinner than the actual hospital file. Anyway, reading what I did get answered some of my questions and I am able to understand this a little better now. I don't know why we aren't explained things as they are in the file. For me, at least, it makes it easier to accept to see the truth and not some condensed version sugar coated to make me feel better.
Its been a nice week despite all the uncertainty, and sickies. Friday was family movie night and we watched Ice Age and ate dinner on the living room floor picnic style. Thursday we went in search of a (arificial)christmas tree, with no luck,but we did meet up with santa and mrs. claus! We sat with them for a picture and they promised to have a mass said for conor and they even took care of the picture for us - no charge. Its a great pic, (well the kids look good!) one of our few family pics with all of us in it.
Today was especially nice for me. Conor and I got some rare alone time together. For so long it was just the two of us, that I think we need to escape together once in awhile.Today I took him to see Treasure Planet. He sat on my lap the whole time. We ate popcorn and pop. He kept hugging me and saying "I like us alone together mom, this is fun going to a movie". We had alot of fun walking home and stopping to buy some more christmas craft stuff and decorations. All night at home he was saying " thank you for taking me to the movie mom, I liked watching the movie with you".
Tomrrow we are getting our tree and will spend the day decorating the house and maybe even get our lights up outside. Hopefully we'll get the tree decorated tomrrow night. I am still holding my breath and hoping we'll be home for christmas. Now I just got to get out there and finish my shopping. I have no idea what to get little aidan. I think santa is going to bring him a highchair, but as for what else, I'm not to sure. Its a hard age to buy for.
Now its late, and I am missing my boys so I'm off to cuddle up in bed with them. Please keep us and all the other kids and families fighting this horrible disease in your thoughts and prayers. A reminder to those of you meaning to register with your local bone marrow registry to get out there and do it! I know of 2 little ones that you just may be able to help. We are fortunate that we have Aidan as a match for conor, not all kids are so lucky. Please, if you can, check out the link on the bottom of the page and contact your local blood services add your name to the bone marrow registry.
Thanks for all your support. We are hanging in there.
Kristy

Wednesday, December 11, 2002 at 09:29 PM (CST)

I just wanted to let everyone know what an amazing boy I have. Tonight, we decided to let him try to swallow his accutane instead of drawing it out of the syringe. He popped the pill in his mouth and swallowed it! Amazing. He then took the other two. No more drawing the accutane out of the capsule. Now we will be certain he is getting the full amount!
Tonight he also jumped up in the chair, ripped off his old bandage, held his arm in the air while I cleaned the area around his broviac and the put a new bandge on. No problems at all.
What a boy!
kristy

Tuesday, December 10, 2002 at 08:02 PM (CST)

Hello everyone. After a long day we are home. Conor had his counts done at the Cross today and they are pretty much the same as last week. His wbc is 20 and his platelets are at 78. They are a little low, but we are going to wait until next week and go from there. Also she palpated his spleen and said it seemed normal, not enlarged, so that's very good too.
We left this morning with our bags packed, the van loaded up with enough stuff for a week and here we are back home!
So fingers crossed, it may have just been something causing his counts to act up and they are settling down again.
I have to speak to the nurse again tomrrow and we'll have some more definate plans for next week.
Now, I'm off to unpack. Thanks for your continued thoughts and prayers.

Friday, December 06, 2002 at 12:06 PM (CST)

I added some new photos so please take a look!

It’s been a crazy week, so I'll try and update the best I can. On Tuesday we did Conor's counts and they didn't look good. His WBC was elevated up from 6.5 the previous week to 16.9 this week. (Normals are 6.0-17.0). And his platelets dropped as well. They are on the low end. So needless to say we were a little freaked out and I called the nurse at the Cross (CCI, cross cancer institute) first thing Wed. morning. Basically she said not to worry, that it may just be an infection and to repeat his counts on Monday we'll go from there.

We also got some of the genetic testing back and showed that his trisomy 8 (extra x on chromosome 8) was improved. In August it was present in 100% if his marrow cells, in November it was present in only 14%! Meaning it is most likely caused by the disease and not there to begin with. We kind of expected that, because he has no outward appearances of trisomy 8. His doctors say it makes no difference to his treatment, but what I’ve been reading says that it makes JMML easier to treat if the abnormality wasn’t there first. Apparently kids with trisomy 8 are at a greater risk for leukemia’s. So I think its good news. On that same note, we haven't heard anything back from the marrow that was sent to Dr. Castleberry yet. Not sure what that will tell (if anything) but I'll let you know when we do.

On Wednesday afternoon Darren went to the gym and Conor was upstairs in my room watching TV. I came down to make some tea and hopefully do some reading online. A few minutes later Conor came down tell me " mom, come see where I fell off the bed". I asked him what happened, and he told me he was standing on his head on the bed and fell off! Anyway I said I would come see what happened. He wanted me to race him, so he ran out of the den, into the living room and through the kitchen, I went through the bath, into the hallway and we would meet at the stairs. (Its one of his favourite games). Anyway, before I got to the bathroom, I heard a bang, a scream, a thud and a bang. I ran in the kitchen to find Conor lying on the floor under a half open kitchen drawer. Turns out the drawer was open, he hit the drawer full force running, then he hit the floor and the drawer slammed shut. I scooped him up, grabbed a bag of frozen blueberries, called Darren and totally freaked out until he came home. I knew Conor was fine, but I wanted a doctor to tell me that. So off we went to the ER. The doctor looked in his ear (?), and told the nurse to put some polysporin on his face and sent us home. Conor has a face full of abrasions and after we got home I noticed he had hit his neck and collarbone as well. THEN I started to do his flush on his broviac and one of the lines was clogged and wouldn't flush so I called the oncologist and we had to go into the cancer clinic on Thursday.


Well, the good news is his broviac wasn't blocked. I kind of figured that would happen, but its safer to go in than have me trying to flush it and draw blood on it and dislodge a clot. They did his counts again at the Cross and they aren't good. WBC up to 19.4 and platelets down to 92. NOT GOOD. So, the plan is to bring him back to the cross on Tuesday, redo his counts and go from there. IF they are continuing on this pattern they will admit him, do a bone marrow aspiration and depending on all that, they will do another round of chemo. He responded really well the last time, so there is every indication he will again. And then, when he recovers from that, we will proceed with the spleenectomy and then the transplant in Feb. BUT it’s all depending on what's causing the counts to be off. They are still stressing not to worry, as it may still be an infection not yet showing itself. (Like I believe that!). He did however, seem sick. No fever but he threw up 2x in the car on the way home and has been slept for 2 hours. So it could be something else. I have no idea, as he didn't present with any symptoms before he was diagnosed so I have no idea what to look for if this is his disease coming on full force. Today he seems fine. So that's where we are right now.

I know its a silly thing to wish for, but I was really hoping to give Conor, actually our whole family a wonderful Christmas at home before all of this started up for Conor. He has such a hard year coming up, especially the next few months. I so wanted for him to be well this Christmas, and be at home to celebrate. So if you can please keep us in your thoughts and prayers that he is just fighting off an infection of some sort and that we have these next few weeks event free, we'd appreciate it. I know transplant is inevitable, it WILL happen, we just need some more family time to prepare us for it. Last night he walked over to me, hugged me and said "Mommy, you are my hero". God, if he only knew what a mess I am inside! He is my hero, my source of strength. What he is going through, what he will go through, I can't begin to imagine. His strength amazes me each day.

Saturday, November 30, 2002 at 10:07 PM (CST)

Hi. There's not much new to add. Conor is doing really well, his counts on Tuesday were all within normal range and he is full of energy. We have had a really nice week, with the highlight of it being Conor has learned to skate! We went nearly every day last week, and by Thursday he was skating back and forth across the ice. He still needs the skate mate, but he does manage a few strokes on his own. I am so proud of him.
Last night was the santa claus parade, today we went to a pancake breakfast and craft fair. There was live entertainment and Conor cut up the dance floor. He even had one little girl ask him to dance! After that Conor played trains in the yard (it was 10 degrees here today!) until supper time. After supper we went for ice cream and then off to a firework display! It was a very fun filled day. Just before falling asleep Conor said "I really really love the fireworks Mom, today was a fun day". And it was.
As hard as its been with Darren not working, the time we have been spending together as a family is priceless. With Darren being gone two weeks at a time, and home for one week, there never seemed to be enough time to just relax and enjoy each other. We are getting a chance to do that now.

Tuesday, November 19, 2002 at 09:49 PM (CST)

Hi Eveyone. Had Conor's counts done today. Still normal. His neutralphils are low normal but his WBC is good, so no worries if he gets a fever or anything. Some of his bone marrow results are back but his nurse has to discuss it with conor's doctor before giving us all the results. She said there was some stuff to go over with him. But she did say it looks like recovering marrow (marrow recovering from chemo). Still nothing on the genetic testing, it should be a couple of weeks on that.
I haven't forgotten to add more about the benifit, I just don't know where to start on it all. There are so many people to thank. I don't want to forget anyone. I did want to say a big THANK YOU to Sharon though, who worked hand in hand with Carolyn in organizing the fundraiser. I thought I had that in our last update about the benifit, but it must've got left behind when I cut and pasted :-).
I have been wearing my new vest everywhere and I love it. Its the one that says "conor's cause". Conor is quite happy mommy is wearing it everywhre too.
Conor is such a bundle of energy. Its like he's wound up and just lets go. Tonight after supper we went outside, the snow was perfect for snowmen. We made Frosty the snowman, santa and rudolph the red nose reindeer (his favorite). He would've stayed out there all night long if I let him. We also played 'chase around the house'. Its probally his favorite game. Its pretty much as it sounds, he chases me around the outside of the house and then I chase him. There is also an inside version as well.
I have pictures of frosty I will share soon, along with pics from the show.
I've gotten lots of fabric for the quilt. Shanon, Grandma, Mary, Glenda, Nan Ford, oh - I know there's more...There's still time to send a peice if you want. I plan on starting it the first week of December.

Sunday, November 17, 2002 at 09:44 PM (CST)

Well, where do I begin? It was such an AMAZING day today. I, we are all totally overwhelmed right now. We just came from a fundraiser for Conor (well, for us, our family). It was a fashion show/wine and cheese. I am at a loss for words right now, but I want to write while it is fresh in my mind, I don't want to forget a minute of it. The day was centered around a fashion show, by Co-op Country Junction, with two very entertaining, funny hosts, Graham Neil and Donovan Workun. There was musical entertainment, dancers, information on the bone marrow registry, a silent auction, lots of wonderful door prizes, great food and wine :-). Conor had so much fun. Part way through the first half of the fashion show he saw Brendan (who was part of the fashion show) onstage and decided he wanted to show his friend his trains and promptly ran onstage, dragging me with him! He then spent the rest of the afternoon running up and down the runway waving and smiling at everyone, even during intermission. There is almost too much to write about and Aidan slept through it all. Conor was the lucky recipiant of a 3 foot stuffed Buffalo that our friends and neighbours, (Dave, Cindy and Cassie) won in the silent auction and gave to him. He had alot of fun playing with that when we arrived home. Its a pretty big stuffed animal! At the end, both of the boys were given some pretty neat toys from Discovery toys and Jocus toys, while Darren and I recieved beautiful fleece vests embroidered with "conor's cause". Everyone involved put together an AMAZING day and I have a long, long list of people we want to thank, and I will do that tomorrow as its been a long, eventful day and I'm ready for bed and I am afraid I will leave someone out. We are extremely greatful to Carolyn for starting "Conor's Cause" and for becoming part of our lives.

Tuesday, November 12, 2002 at 07:06 PM (CST)

Hi Everyone. Today went exceptionally well. Though we have no results (well, just his counts which are all normal, big sigh of relief!) and won't for a few weeks, Conor handled the whole procedure amazingly and is playing trains in the livingroom as I type. We arrived at the Hospital at 10:30 and after a breif wait Conor was called in for his examination. He is at 15kg now (about 33lbs), so he has gained a little weight since his last hospital stay. He didn't much care for being examined and had a small freak out, but I gave him my wallet to play with, and he was fine. Usually we bribe him with food, but he wasn't allowed to eat, so the wallet had to do. He had lots of fun pulling out all my cards and loose change. Soon after we were called to go down to the OR, he was asking the whole while for something to eat, specifically the donut I had in my purse for him. As he was being led into the OR, he asked for it again, so Darren (Who went with him) gave him the donut to take with him. Conor carried it in and when he was asleep, Darren brought it back out with him. After about 20 minutes or so they called us in saying Conor was waking up, and wouldn't you know it, but the first thing he asked for was his donut? He ate it in about 30 seconds and asked for more! Once he was brought upstairs to the clinic, he at 2 small bags of mini cookies, a can of gingerale, 2 other cookies, and a sucker. After we were able to leave we went to McDonald's where he ate fries, nuggest and part of a hamburger! He isn't in any pain and keeps dropping his pants to show us the the hole in his back.
I am very proud of the way he handled it all. Now its just a matter of waiting. They will have some results back soon, but his bone marrow is being sent away to another Dr. (Dr. Castleberry), as well as some genetic testing (for the trisotomy 8), which will take a few weeks. So until then, we just take it day by day. Get his counts done once a week and pray that his White count doesn't go over 20,000. Hopefully the chemo has done its job, the accutane is working and we won't need any more chemo before transplant.

Friday, November 08, 2002 at 10:27 PM (CST)

Well Conor's counts as of wednesday are good. All within (low) normal range. Its great he has some white cells now so he can get out some. Today he spent the morning helping his dad shovel snow, and playing in it. We went for a short walk around the block in the slide as well.
On Tuesday he has his next bone marrow aspiration so we should know more about what is going on then in terms of how the disease responded to the chemo and what the time frame is for transplant.
He seems to be doing really well in all other areas. His appetite is really good, he's eating lots all day long. Must be fuel for his never ending energy. He does not stop all day! Literally running circles around the house, stopping only to eat or ask one of us to chase him. He loves to build new train tracks each day, coming up with differnt configurations. He just needs more tracks now, he wants to have them all over the house and up the stairs (he told me yesterday!).I'm sure Santa will see that he gets lots more :-).
He is a great big brother to Aidan, singing him songs when he is upset (mostly the Bob the Builder theme song), and holding his hand at night. He loves to hug and kiss him.
He is making amazing progress in his self care at home. Today he did his own flush, and he no longer needs to be held by one of us for a bandage change or flush. he sits in the chair by himself and gets ready with his gingerale and cookies. Unfortunatley he has taken too much on, by bandaging up darren and I with lots of tape :-).

Sunday, November 03, 2002 at 09:24 PM (CST)

I can't believe its been over a week since I last updated! Everything is fine here. Conor had a wonderful time trick or treating on halloween. He was Thomas the tank engine again and even helped make the costume. He love going from house to house, and the only thing he would say was "Next house dad!" He almost didn't get to go out as he woke up that morning with a cold, runny nose, watery eyes etc. and had a slight fever. The highest it went was 38.0, but it was enough to scare us. His counts are fine, almost within normal range, so the doctor told us to give him tylonel and call if he spiked a fever, but thankfully, he didn't. He's still not 100%, but doing much better.
Aidan has a cold now, so hopefully soon everyone will be feeling better and we can get Conor out playing with some kids again. He keeps asking to play with his friends because he's lonely, so I can't wait until he's able too. There is only so much Bob the Builder and Thomas the tank engine mommy and daddy can play!
Yesterday (darren's birthday, Happy Birthday Darren!) was nice and somewhat warm, so we went for a long walk and stopped at the park. Conor had alot of fun there. He found it extremely funny that the park had black rubber sand. Well, actually we all did! I'd never seen that before. The *sand* was actually recycled tires. Its was very boucny to walk on.
The other morning, just after he woke up, Conor and I were playing with Aidan. And Conor asked me why he was a big brother. I told him it was because Aidan was his little brother, so that made him a big brother. (It was 6 am, I couldn't think of better answer) So then he asked why he had a little brother, and I told him it was so he'd have some one to play with. He then said "And to help make me get better Mom?" He's a pretty smart boy.

November 5 Update
Well Conor's ear infection is back. Proably expalins the temp. coming and going. He's on an anitboitic for that. But doing well otherwise.
I am planning on starting his quilt soon. I don't want to start until I have all the fabric so I know what i am going to do. Alot of people said they were sending fabric, but I haven't recieved it yet, so if you are going to be sending something could you email and let me know, so I won't go ahead and start the quilt. I really don't want to leave anyone out. Our email address is at the bottom of the page and our mailing address is in a previous journal entry.
Thanks so much to everyone for your support.

Saturday, October 26, 2002 at 04:22 PM (CDT)

Hi everyone. Not much new to add. Conor is doing well and enjoying being at home. His grandparents are here and he is really loving all the attention!
His counts are one the way up. Hg is 98, WBC 1.4 with neuraphils at .38 (at least he has some now!), and his platlets are 184. This was all on Wednesday, so hopefully they are even better today.
We found out the date for his next bone marrow aspiration. Its Nov. 12. So after that date we will know more where we stand in regards to treatment and where we go from there.
Thanks to everyone who has sent material for the quilt. I hope to get started soon. I am really excited about getting that made.
Conor is truley an amazing little boy. So full of humor and love for everyone. Lately he has been getting us all into a big family hug and saying "come here everbody, we are a family" then kissing each of us. It melts my heart each time.

Monday, October 21, 2002 at 07:51 PM (CDT)

Hi everyone. We arrived home late Sunday and are resting and getting used to being home again. Conor's counts were on the way up when we left, not normal but getting there. Thanks to everyone for sending your birthday wishes, cards and presents. Conor had a wonderful birthday. I am already starting to recieve material for the quilt and I am really excited about getting that started :).

For those of you that didn't recieve my email, there is a little girl in Austraila, Riley, who also has JMML. She is scheduled for transplant in February as well. However, they do not have a bone marrow match, nor were they able to find one on the Australian bone marrow registry. They have begun an international search. So please if you haven't already and you are able to do so, contact your local blood services and register your bone marrow!

Friday, October 18, 2002 at 10:17 AM (CDT)

Happy 3rd Birthday Conor!!!

happy birthday conor!thanks to everyone for your support.it has been only 3 days since our last hospital visit but sorry to inform you all, conor has been admitted once again.His fever went up to 39.1 around 2:15 yesterday afternoon so we rushed him back to Edmonton.His fever dropped to 37.7 but he has an ear infection,bad cough and what looks to be an infection in his throat.We are all sick so he may have caught something off us.Lets hope it is nothing serious.This is my first time writing,Kristy usually handles it all I just kind of proof read,but it feels good to talk to everyone.I just realized how late it is I have to leave to pick up my parents at the airport,so we will get back to you later.thanks Darren.

Update:
Well, we are pretty much confined to our room. One of Conor's test came back positive for a strain of the flu. So we have to take precautions not to infect other kids. He does have an ear infection also. He is doing really well and not having any complications from the flu. They are continuing the anttibiotics for the ear infection and as a precaution.
He is enjoying his birthday. Thanks to whomever sent the ballons!! No card came with them. He is playing with all his new toys and eating lots of cake, wearing everyone out! being confined to the room is more tiring than anything. His counts are slowly coming uup. His WBC are .5, his hgb is 92, and his platlets are 72, up from 20 yesterday. He had a transfusion last night, so that was expected.
have the laptop and phone in the room so I shold be able to update daily!
Thanks for all the birthday wishes. I've read them all to Conor and he was quite happy to get so many.

Wednesday, October 16, 2002 at 11:00 PM (CDT)

Where to start?? Gosh, we left here last Friday for the meeting with the doctor and we just got home last night. Before the meeting Conor had a CBC done and his counts were really low so they decided to transfuse platlets and packed cells. Which they did after the meeting. (I'll get to that in a minute). Anyway b/f the transfusion they took his temp and sure enough it was on the way up. So they started IV antibiotics as he was getting his blood and then we were admitted for fever...It was our best stay yet. Conor was comfortable, knew what to expect, dazzled everyone with his medicine taking and was very cooperative with everything. He got so comfortable there that he spent alot of time at the nurses station being Dr. Ketchup and giving all the nurses raises! I think last going off, he gave them all $44,000. 00 a shift! *lol*.
His counts are still pretty low. 27 for platlets, 78 for hemoglobin and .3 for wbc. That was yesterday morning though. He did have packed cells before we left yesterday so hopefully tomrrow when he has his CBC done things will have improved. Right now he is sitting around 38.0 tempature wise. We are worried he will spike and we will end up in the hospital again. So keep your fingers crossed and say a little prayer for us that he doesn't!.
Now for the meeting. It didn't go quite as we expected. We went in there anticipating the worst and left not knowing what to feel. It was GOOD news though. Apparently Conor is amoung only 6 of (documented) children with JMML that have presented as he did and have continued to do well. He was not and is not now, sick. His spleen is not enlarged (only very minimally) and he showed no other outward symptoms of leukemia. He has handled the chemo very well also and despite 2 hospital stays for fever, he has had no infection or complications. We do have to go for another bone marrow aspiration in November and we will know more then, but right now here is the plan. It is pretty much the timeline I had expected. the transplant is (tentively) scheduled for February. His spleen will be removed one month prior to that in January and he will be given time to recover from that, then sent to Calgary for transplant. Before they remove his spleen he will need 3 specific immuniaztions. Hemophilis B, Pnumococal, Meningoccal. Plus antibiotic following for life. They feel confindant now that they can wait until then as Aidan will be old enough and he is the best possible match. Until then they will continue to monitor his counts, and if they don't go above 20,000 (white count) they will just continue him with the Accutane until transplant and no more chemo will be nessecary. That is good news :-). Did I mention he hasn't lost ANY hair? None. We are very happy about that! BUT if his counts go higher or the bone marrow shows something differnt than they anticiipate, we will be back on chemo for two more cycles. Conor's oncologist, Dr. Desi has been consulting with Dr. Castleberry (a researcher in Alabama who is studing JMML) and this is the treatment protocol he suggested for Conor. There have been cases of children (5?) that have been on the accutane for up to 4 years, but there is just not enough children with this or studied to know for sure what will happen. A sample of conor's next bone marrow will be sent to Dr. Castleberry for further study as he developing a test to postively identify JMML. Conor has also been added to the national JMML registry.
He is really happy to be home and we are all just trying to relax and do some normal family things. His birthday is this Friday, the 18th and he is looking forward to that. We haven't planned a party or anything as his counts are still pretty low and we don't want to risk any contact with someone who is sick. EVERYONE seems to have the flu. So we will just have a quiet family party, with (hopefully) a bob the builder cake!
Conor's story was in the local paper today and it was on page 2! Here is the link : http://www.wetaskiwintimes.com/ it is under features. I was diappointed with the online article as it didn't include all the info as the hard copy did. the actual aritcle also included a bit on the O'Callaghan's who have done amazing things to help us. Including organizing a wine a cheese gala and fashion show, donations and gathering support. Not to mention the support their family has given us.
I gues that's it for now! We just checked Conor's temp again its way down. 36.8. So that is very good :-). Thanks everyone for your continued thoughts, prayers and support.

Thursday, October 10, 2002 at 10:37 PM (CDT)

We are off tomorrow to confernce with Conor's team to discuss the rest of his treatment. We will know tomrrow exactly where we go from here.
Conor has been doing really well at home this week. On Monday when I flushed his lines, one was blocked, or at least it appeared to be. I tried to flush, couldn't depress the syringe, checked the clamp etc, but still it wouldn't flush. So I prepared another and tried again. Still nothing. I called his Doctor who told us that because the other one had flushed fine, there was nothing to be worried about and to come in the next day to have it cleared. Of course when we arrived at the clinic, both lines were clear. However one was a little stiff, not the one I had problems with though. While we were there, I had them do a CBC and I was glad I did because his platelets were pretty low, at 26. So once we arrived home we brought him to our local hospital for another CBC and cross match and he got platelets on Wednesday morning. today we had another CBC, his platlets have gone up to 60 and his hemoglobin is sitting around 80. He will most likely get a transfusion tomrrow. He has been pretty tired today and is very pale. He looks pretty run down today. Still wearing us out, but not quite as active as normal! His white count is pretty low at 0.2, not sure what the break down on that is though, we'll get a better idea tomrrow when we get his counts done at the cancer institute. We've been pretty cautious with him, keeping things clean and not taking him out anywhere. There are alot of flu bugs etc. going around now and we really don't want him to get sick.
Monday night was a big turning point for Conor. The week prior to going into the hospital for his chemo, he was starting to take his oral meds (accutane and septra) really well, but with all the upset with being admitted and schedule changes etc. he reverted back to fighting with us when taking his meds. On Monday evening Darren gave him his meds and he fought and screamed so much he threw them up. So Darren gave them to him again. This time Conor realized there was no getting out of it an fighting and screaming just made it harder on everyone, mostly him and he took the syringe, squirt the medicine in his mouth and went on playing. Since then, he's taken every med. no problems at all. I am so proud of him.
Today we met with a reporter from the local paper who is doing a story on Conor, and wants to follow us through this. It should generate alot of awareness and support.

Tuesday, October 08, 2002 at 11:32 PM (CDT)

Hi everyone. I just had an idea I hope you can all help me with. There is going to be alot of hospital stays in our future with the spleenectomy, and transplant coming up. I thought it would be nice if conor had a special blanket to bring with him each time. I would like to make him a quilt. So here is what I was thinking. If you would like to send a piece of fabric, any size or shape, I could sew them into a crazy quilt and that would be his special blanket. It would mean so much to me to have something from all his friends and family, filled with love, thoughts, prayers and postive thoughts from all over the world. I am by no means a seamstress or know what I am doing, but how hard can it be? As long as it is machine washable, it will work. Our address is:
Conor Ford
4502 52 st.
wetaskiwin, alberta
canada T9A 1N6

Sunday, October 06, 2002 at 08:33 AM (CDT)

We are home!! This past week postively flew by. I can't belive its Sunday already. We got home late yesterday afternoon.
There isn't really much to update on. We never met with the doctors on Friday as they didn't meet with the transplant team. All this will happen next week and we meet on Friday. Then we will know all the particulars. When the spleenectomy will be and when the transplant will be. As far as I know, there will be no more chemo until transplant time, that is IF we have slowed things down with the 2 courses he has done. But as I said, we won't know everything until next friday. Until then we will be enjoying our time at home. Conor has a birthday coming up on the 18th (3 years old!!)and I have to plan something for that.
As for Conor, he is doing amazing. I find it really hard to believe he just endured a week of chemo and we hardly noticed. I mean he did throw up the first 2 nights but that was it. On thursday and friday I asked to have him heplocked and we went out on a pass for 3 hours each day. It was so much fun. We went for a long walk downtown on thursday, and stopped for lunch. Its been a long time since conor and I did that. I had Aidan in the infant carrier and conor in the stroller it was a beautiful day. On Friday Gina and Brooklyn came by and we had lunch then went for a long walk out side and brought the kids to a park, where they played for about an hour. Conor had so much fun! It was a gorgeous fall day.Brooklyn stayed at the hospital until 9 or so they played so well together. Brooklyn even cried because she didn't want to leave. She wanted to have a sleepover at the hospital too :-). I was so happy they enjoyed their visit. I think the first time brooklyn visited conor in the hospital it really upset her. Conor was pretty sick the first time round and looked it. This time, he was like is always is. Fun and full of energy.
I don't have any numbers as far as his blood counts go. A CBC was done on monday when we were admitted and his counts were really good. All within normal range. Because of that, they didn't do a CBC all week, and he isn't due for another until Friday. Apparenlty it takes 7 days for the chemo to have an effect on his counts, and we don't have to worry until then. At least that's what they said. I mean, I'm gonna be a wreck all week until I have some numbers in my hand!
Its hard to believe that my beautiful boy has leukemia and my beautiful baby will be his bone marrow donor. What's even harder to believe is that when some one asks how he is doing or how we all are, I answer "great!". because its true. We are all doing wonderfully. I know its going to be absolute hell the next year getting conor through this. but I can see the outcome and I know he will be a survivor. We all will be.
Late Friday night/early saturday morning, conor woke up, it seemed as if he was going to be sick. So I was up with him, rubbing his back and telling him it would all be ok and if he just let himself be sick he would feel better. He looked at me and said "its ok mom, I'm ok mom." He then lay down and went back to sleep. It was the look in his eyes that got to me. He looked so mature, so wise. It was if he knew I was laying there worrying about him and he had to let me know that he was just fine and he WILL beat this. He is truely amazing and the strongest one of us all.

Wednesday, October 02, 2002 at 04:20 PM (CDT)

Hi, I just have a minute, so I'll be brief. Things are going really well this time around with the chemo. Monday night was really rough as they didn't give Conor gravol until AFTER the chemo stopped running. He spent all night throwing up, so no one got any sleep. His tx is the same. as last time, but Because of the time we were admitted, his chemo is running at night from 5-5:30 (FLU) then again from 9:30-1:30am (ARA-c). At least this way, he sleeps through the worst of it and he is able to get up and play during the day and go to the big playroom. He really enjoys that.
Last night went really well. He did wake once around 1 am and was sick, but only the one time. He is doing amazing with taking his medicines and getting his vitals etc. taken. He is handling it all so good.
We started a necklace yesterday, called the beaded journey. It has his name in beads then a special bead for each procedure, tx. etc. He gets a new one with each admittance to the hospital, or transfusion or any thing to do with his disease treatment. It is a great idea and he loves it. He either hangs it on his IV pole or puts it on his bear.
In all this stay is going really well and conor is adjusting amazing.
We meet on Friday with conor's 'team' to discuss his treatment and timeline for spleenectomy and transplant. As far as I know now, they are meeting today with the transplant center in calgary and we will all meet on friday to discuss things further. I guess Conor also needs to get another bone marrow aspiration to see how the tx is working for him. It looks like Aidan will be the donor unless chemo hasn't slowed things down. I will know more about all of that on friday though.
I'll most likely update friday afternoon.

Sunday, September 29, 2002 at 08:58 PM (CDT)

Hi! Things here have been great. Conor is full of energy and life. He's doing amazing. We are off tomrrow for another round of chemo. We will be in the hospital for at least 6 days. I will update when I can.
We met with a wonderful family last night who battled leukemia with their son. They are going to be a wonderful source of support for us. It really helped to see how well they are doing now, years later.
Thanks for all your continued thoughts and prayers.

Sunday, September 29, 2002 at 12:13 PM (CDT)

Tuesday, September 24, 2002 at 08:29 AM (CDT)

After an unexpected hospital stay were arrived home late yesterday afternoon. Late Thursday night Conor developed a slight fever, which I kept a close eye on. At around 2am it spiked at 38.9 so we called the oncolgist who told us to take him in to our local hospital. That was a waste of time! When we arrived the nurse had no idea what to do with conor and asked me questions on how to do a culture. Needless to say we decided to leave and head into the city. By the time we arrived at Emergency at the U of A it was nearly 5 am. By that time his fever had gone down to 36.5, but we had to stay anyway. He threw up once and that was it. Finally around 7 am we were brought to our room. Conor was so wound up he didn't get to sleep until 10 or so. And he was feeling fine. No sign of infection or anything. Once again, no one could believe he was sick. He was started on 2 different anitbiotics, and we were told we had to stay 48 hrs until his cultures ccame back ruling out infection. Friday was a total blur, though I do remember being moved from our nice private room to a semi private. We had always had a private room so that was an unwelcome change. On Friday night (well saturday morning) he spiked a fever again (39.1), so more cultures were drawn and that added another 48 hrs to our stay. Again he was fine in a few hours and had no signs of infection.
He wasn't much better with the hospital staff taking vital etc. but he is being less defiant. I can see its mostly in the nurses approach. The ones that include him in the decision making, he's ok with, but the ones that just *attack* him with stuff he gets pretty upset with. Slowly we are all learning how to do things his way!
His Nana arrived on Saturday and he was very happy to see her. I think he was thrilled to be with someone 'safe'. Someone who hadn't spent the last month holding him down and forcing things on him. Conor was in great spirits all day saturday and sunday. So much so that Darren and I were able to get out and do a few things and leave conor with his Nana. It was nice to get out of the hospital for awhile. It really gets to be so draining sitting in there all day and night.
On saturday we asked to be put in a room by ourselves because we were worried about conor sharing a room with another little boy. But we were told that they didn't isolate kids just because they have low counts. We weren't happy about that, but there was nothing we could do. The little boy he was sharing with was 18 months old and they played together a little and it was hard to keep them from sharing toys etc. It totaly freaked me out as at home we keep him away from anyone with so much as a sniffle and here he is in hosptial sharing a room, toys, bathroom etc with complete strangers! The little boy didn't have leukemia, he has some kind of liver problems due to a blood infection (not sure what, that's what they are trying to find out). The staff assured us that is was nothing contagious, that it was in his blood, but it did nothing to make me feel better. I just couldn't believe we were more worried about him in hospital than at home. I don't think any child with comprimised immunity should share a room with anyone!
Ok, where was I...I got off track for a minute there. Sunday.
On Sunday there was still no signs of infection. We even got Conor dressed and headed outside for a walk around the hospital. Not sure if we were supposed to or not (he was still hooked up to his machine for hydration and anitbiotics) but we went anyway. We walked around the hospital grounds with is IV pole and machine rolling along behind him. And we even saw a rabbit! I have no idea where a rabbit would come from in the middle of the city, let alone how it got to be in the hospital parking lot, but it was great fun to watch hop around. We made it through sunday night with no fever, but he awoke at 5 am throwing up. I held off on the gravol b/c he said he felt fine, but at 6 am he threw up again so we gave him some then. And again at 7:30 he threw up again. I thought for sure we were never getting out of that hospital this week. but after a long sleep, he awoke at 11 feeling great. Asking for food. He ate lots and was doing great. At 11:30 the doctor came by said he was good to go home! His counts were still too low to start chemo. He was supposed to start today. His counts have gone way up, but his neutraphils are still down. So we go in on thursday for a blood drawn to see if he can start next week.

His counts are as follows:

friday sat. sun. mon.

Hemoglobin 99 91 109 116

WBC 0.8 0.9 1.0 1.9

Platelets 33 55 130 191

I am amazed at his platelets how they went up so much on their own. They didnt' jump that much with a transfusion last week! He did need packed red blood cells on sat. as his hemoglobin was down. Now we just need to get those WBC up and we can start treatment again.
He is one happy boy to be home though. He got in the door and started playing trains right away. He got some new tracks from his nana. He also went out for a long walk and played with Tanya's puppy for awhile. He went to bed at 9:30 last night and has been sleeping very soundly. its nearly 12 hours later and he hasn't moved. No rise in temp. yet either.

Thursday, September 19, 2002 at 08:19 PM (CDT)

We got the results of our bloodtests for compatibility today. As expected, Aidan is a 6/6 match. Darren and I are both 3/6. Also as expected, because of Aidan's age, they have started a search for a compatible non related donor. If none is found in time, we will use Aidan if we are able and he is strong enough to do so. Because of his age and size, it will involve removing the bone marrow from his hip under general anestesia. They may not be able to harvest enough marrow from Aidan is the main problem, and they don't want to put Aidan through more than one procedure. BUT nothing is certain yet as Conor's team will be confernecing with the transplant centre in Calgary next week. We will know alot more then.

So PLEASE if you haven't already done so, contact your local blood services (canadian site is linked at the bottom of this page), and register as a donor if you are able to do so. If they don't find a compatible match within Canada they will search North America and then broaden the search. So wherever you are, you may be able to help.

Conor seems well today, his platelets went up a little to 31 so they decided not to transfuse, his hemoglobin is down a little to 103 (which I anticipated b/c he's been kinda tired lately), and his WBC is 0.7. I pray he doesn't develop an infection of some kind. we have been lucky so far.

Tuesday, September 17, 2002 at 02:40 PM (CDT)

Conor ended up needing another platelet transfusion last night. His counts yesterday were WBC 0.9, Hemoglobin 115, and Platelets 9. Hopefully with this second transfusion they will go up.
The transfusion went well, he didn't mind it too much. Afterwards on the drive home we stopped and watched a lightening storm for about a half hour. It was amazing. Conor was thrilled by all the lightening.
He is doing really well today. He has lots of energy and is playing happily with his trains. He has even gained a few pounds since we've been home :-).
I added a link at the bottom of the page for some new pictures I added the other day. Also I wanted to say thank you to Rachel for helping me put conor's picture on the webpage. Did I say help? I should say for putting it there. It was easier for her to do it than to try and teach me how to do it! Thanks so much Rachel.

Sunday, September 15, 2002 at 11:39 PM (CDT)

Hi, I just changed the pictures in the photo album. The long awaited clown picture and pictures of conor and aidan sleeping are in there!

Friday, September 13, 2002 at 11:14 PM (CDT)

Thanks to :

Wally & Elaine
Carly, Jim & Megan
Judy & Roland
Bina
Carol, Gerry & Anthony
Melissa and Dane
Grandma and Grandpa Pacholka
Carrie


For the beautiful cards you sent. Thanks for thinking of us! Bina - thank you so much for everything. When I get a minute I will put that phone card to use and call you :). And Steve, Theresa, Wade, Katie and April (whom I forgot yesterday!!) thanks for your visit and the Thomas the Tank Engine bank. Conor made quite a bit of money off of the nurses :). He can be pretty charming when he wants to be.

Friday, September 13, 2002 at 10:34 AM (CDT)

Conor recieved his platelets last night at around 9pm. Everything went really well and he is doing good today. He still gets very upset when anyone touches his broviac, but it is getting better. I changed his bandage last night in the quickest time yet. Darren is getting very skilled at drawing the accutane out of the pills and is getting more every time, and conor is even taking it easier. I give him a root beer chaser and it gets the taste out fast! Darren tasted the accutane yesterday and said it was absoultely gross, kinda like cod liver oil. BLAH! Conor is due for a flush today as well, so we'll see how that goes. He also starts the anitbiotic today as well.
We go back on Monday for another blood count. Hopefully things will have gotten better. I am worried about him being out in public with such a low WBC, so we do let him outside, just not in anywhere, stores etc. He isn't showing any signs of infection and I am really happy about that. At the hospital after a mild freak out on my part, they put us in the 'quiet room' of emerg and that's where we go each time now. So no hanging around the ER or using the ER rooms for his Tx. They do everything in the quiet room and Conor is not exposed to all those germs hanging around and its much easier to control him in there!

Thursday, September 12, 2002 at 05:11 PM (CDT)

Today Conor had his first blood work done since leaving the hospital. We had it arranged with or family doctor to have everything that can be done, done at the hospital here to aviod driving back and forth to edmonoton 2+ times a week. His counts were what I expected, except for the platelets which are at 14. He is getting a transfusion this evening at around 8 pm. His WBC is a 1.0 and his Hemoglobin is at 117. Despite the low platelets, he's showing no signs of bleeding etc. He does have some new bruising but nothing to be concerned with.
Emotionally, he seems to be doing well. He is just as affectionate as he always was, just as playful. He still doens't understand the why's of it all, but giving his meds is getting easier. However anything to do with the broviac is still a fight. He is acting things out with his trains when he plays. So we have some idea what is going on inside mind. Basically one train says to the other "your going to the doctor" and the other one says, "but i'm not sick, I'm not going, just leave me alone. I want to be left alone.."
His appetite, although not back to normal is better. we manage to get a full can of Pediasure into him everyday via chocolate milkshakes :-). And he does eat one meal a day. usually he eats some cearl for breakfast and then either lunch or supper.
We all want to say thank you to everyone for your letters of support and the cards and gifts we've recieved. I hope I can remember everyone, please forgive me if I don't, my mind is all over the place today. Thanks to Nana and Keith for the new train skarloey and all the cloths you sent for Conor and Aidan (we got those yesterday!). Thanks to Wilson and Barbara for sending Donald the train, the beautiful cloths for Aidan as well as loaning us the much needed laptop for use in the hospital. thanks to curtis and pam for your visit and the teddy bear, thanks to Auntie Rose, and Fred for visiting and the presents, the hospital staff is still cleaning up playdough, I'm sure!. Thanks to Glenda for the Balloons, Cassie for the cute stuffed bear, Gina, Brooklyn, Randy and Val for the wonderful basket of Goodies, Tanya, Brad and Matthew for the beautiful Angel of Hope, thanks to Donald, Krystal and Pop for the package on its way to us. And thanks to all the October Moms for the meals you sent, as well you continued friendship and support. And to everyone at jmml_support, your support, experience and advice has been greatly needed and appreciated. Thanks to the Alberta moms list for offering your support and friendship.
I have read the emails in my inbox and although I have yet to reply everyone privately, I wanted to say a big thank you to EVERYONE for just simply letting us know you are there if we need you. I love reading the new messages in the guest book everyday as well as the emails sent to us, it helps to know we have so much support.

Tuesday, September 10, 2002 at 09:57 AM (CDT)

Hi everyone. I know you have all been waiting for an update, so I'll try to fill you in as much as possible one what has been going on since I last wrote on Thursday (?). We got home last night after a long day of learing everything we needed to know about caring for conor at home. His brovia flushes, his meds, and what to watch out for in terms of side effects, infection, danger signs etc. Its alot to learn.

His treatments went well considering its intensive chemo. He never did learn to settle down and take his meds, but I like to see him with some fight left in him! Makes me realize that no matter what is going on inside him he's going to fight it. He's a pretty strong little boy. Friday and Saturday were probally the worst for all of us. Between fighting agiast his meds, his hemoglobin being really low (68 and dropping to 60 on Friday), and the effects of the cheomo, he was pretty much wiped out. On friday when he woke up he just sat on the bed and stared into space. He kept saying "i'm sad mommy". And he was. He just wanted to be home and off that damn machine. He was tired of dragging that around with him and not having the energy to do anything and being stuck inside. I went through a long list of things asking him what would make him happy, and finally he said that going to the library to play his games on the computer (esp. bob the builder on Nickjr) would make him happy. So off we went. Only when we got there it wasn't open. It was supposed to be open but it wasn't. So conor made us sit there waiting. He kept saying "soon mommy, soon" :(. Eventually we had to leave to be back for his 10 am treatment. Fortunatly, Lois came by to see him and when I told her what would make here happy, she left the room and came back with 3 bob the builder videos, some BTB legos, and some BTB toys. They had all been recently donated to the playroom and she hadn't even put them out yet. Conor was thrilled. He lay there all after noon watching the movies over and over and playing with the toys. It was so nice to hear him singing the theme song over and over. But it was still a rough day. He ended up needed a transfusion and he got that in the evening. I could see a difference in him right away, but not alot. He was feverish from the chemo and just all around feeling crappy. At one point his fever went up over 40 and we had to fight with him to get tylonel in him. They did cultures from his broviac sight and both of the lines to check for infection and they started antibiotics as a precaution. (As of Monday morning he was taken off those as the cultures came back negative and once he stopped the chemo, the fevers stopped). It was a very difficult night on all of us. Well except Aidan who is being amazing through all of this. He sleeps very well at night which is so wonderful. Its almost as if he knows what is going on and is doing his best to help out the only way he can. Well, by doing that and cheering conor up. conor just loves him and when he is really upset, or down he asks for aidan. I will put aidan in bed with ocnor and conor will cuddle him and immediatley is happy. Even to see aidan look at conor is unbelievable. If he is fussing or crying and conor comes around he stops. Conor calls him 'little buddy' and says "he's my best friend".

Saturday was conor's last day of chemo and it went pretty good. He did end up needing another transfusion as his hemoglobin didn't come up as much as they liked. He spent alot of that day sleeping and I managed to get out and spend some time out of the hospital for a few hours. It was nice to get out of there, but I was on edge the whole time. it reminded me of when conor was first born and I would leave him to go to school for 3 hours. I was a wreck the whole time I was away. But conor didn't even know I was gone. He woke up just a few minutes before I got back. Saturday night was much easier on him. its amazing how well he felt after the 2nd transfusion. he went in the nurse's room and played his games on the computer, we read stories and he was almost himself. It as so nice to see. Once that chemo stoppted, there was no stopping him. He also started to eat and ask for food. We all slept well that night.

On sunday his platelets had dropped down to 9 so he got a transfusion. And after that was done Claire (his nurse)heplocked him (removed the machine) and we were able to go outside. Just as we were leaving Cassie and her dad (our neighbours) came by. conor was thrilled. So we all went outside and had a little picnic and played duck duck goose. Conor was so excited to see cassie. He talked about it all the rest of the night. He was right back to himself. God, I even had to give him time outs and dicipline him! It was so nice to do :-). After cassie left we took conor to Ronald Mcdonald house where darren is staying. conor played in the playroom while darren and I cooked a real meal. It was so much fun to be there, out of the hosptial. conor really enjoyed it there too. He couldn't really get that it was McDonald's but there was no chicken nuggets and no large M over the house. But once he saw all the cookies he got over that just fine. We got back to the hosptial at 9 or so and he fell asleep almost right away and didn't move until 9 the next morning.

He was pretty happy to be home last night and probally will be even more so today when he wakes up and we can go outside. His WBC is pretty low so we are being careful where we go and what we do, but we are trying to be as normal as possible. Tanya said she may come by later with her new puppy. I think conor will really like that. Conor was pretty exhausted last night at bed time and fell asleep pretty quickly. I tried to put cream on his lips and neck as the accutane is drying out his skin pretty bad, but he won't let anyone touch him. I am hoping after a few days he will calm down a little.

It is still hard to believe he's sick. I can so udnerstand how he feels, I mean, once the chemo stopped and the meds stopped, he was *better* to him its that making him sick! I don't udnerstand it so how can he? I told his nurse all of this, and how I NEED to see something to convince me its real. That I need to be taken down to the lab and shown conor's tests and what normal cells, bone marrow etc. look like and what conor's look like etc. Just so I will believe it. So it has been arranged for us the next time we go back that we can do just that. I think then and only then will I begin to realize he is sick.

I have his tx schedule and med list here I will post about later for those of you who understand that stuff. And for those of you that don't you can learn all about it. Basically we have to continue the accutane at home as well as an antibiotic (spetra) 3x a week. He hasn't lost any hair yet, but I've been assured that WILL happen so we are going to get a hair cut soon to make that less traumatic on everyone. His voice has changed a little, it is more high pitched, and his eyes look a little older, but other than that, he's the same beautiful little boy he always was. Its so good to have him home.

Tuesday, September 10, 2002 at 09:57 AM (CDT)

Hi everyone. I know you have all been waiting for an update, so I'll try to fill you in as much as possible one what has been going on since I last wrote on Thursday (?). We got home last night after a long day of learing everything we needed to know about caring for conor at home. His brovia flushes, his meds, and what to watch out for in terms of side effects, infection, danger signs etc. Its alot to learn.

His treatments went well considering its intensive chemo. He never did learn to settle down and take his meds, but I like to see him with some fight left in him! Makes me realize that no matter what is going on inside him he's going to fight it. He's a pretty strong little boy. Friday and Saturday were probally the worst for all of us. Between fighting agiast his meds, his hemoglobin being really low (68 and dropping to 60 on Friday), and the effects of the cheomo, he was pretty much wiped out. On friday when he woke up he just sat on the bed and stared into space. He kept saying "i'm sad mommy". And he was. He just wanted to be home and off that damn machine. He was tired of dragging that around with him and not having the energy to do anything and being stuck inside. I went through a long list of things asking him what would make him happy, and finally he said that going to the library to play his games on the computer (esp. bob the builder on Nickjr) would make him happy. So off we went. Only when we got there it wasn't open. It was supposed to be open but it wasn't. So conor made us sit there waiting. He kept saying "soon mommy, soon" :(. Eventually we had to leave to be back for his 10 am treatment. Fortunatly, Lois came by to see him and when I told her what would make here happy, she left the room and came back with 3 bob the builder videos, some BTB legos, and some BTB toys. They had all been recently donated to the playroom and she hadn't even put them out yet. Conor was thrilled. He lay there all after noon watching the movies over and over and playing with the toys. It was so nice to hear him singing the theme song over and over. But it was still a rough day. He ended up needed a transfusion and he got that in the evening. I could see a difference in him right away, but not alot. He was feverish from the chemo and just all around feeling crappy. At one point his fever went up over 40 and we had to fight with him to get tylonel in him. They did cultures from his broviac sight and both of the lines to check for infection and they started antibiotics as a precaution. (As of Monday morning he was taken off those as the cultures came back negative and once he stopped the chemo, the fevers stopped). It was a very difficult night on all of us. Well except Aidan who is being amazing through all of this. He sleeps very well at night which is so wonderful. Its almost as if he knows what is going on and is doing his best to help out the only way he can. Well, by doing that and cheering conor up. conor just loves him and when he is really upset, or down he asks for aidan. I will put aidan in bed with ocnor and conor will cuddle him and immediatley is happy. Even to see aidan look at conor is unbelievable. If he is fussing or crying and conor comes around he stops. Conor calls him 'little buddy' and says "he's my best friend".

Saturday was conor's last day of chemo and it went pretty good. He did end up needing another transfusion as his hemoglobin didn't come up as much as they liked. He spent alot of that day sleeping and I managed to get out and spend some time out of the hospital for a few hours. It was nice to get out of there, but I was on edge the whole time. it reminded me of when conor was first born and I would leave him to go to school for 3 hours. I was a wreck the whole time I was away. But conor didn't even know I was gone. He woke up just a few minutes before I got back. Saturday night was much easier on him. its amazing how well he felt after the 2nd transfusion. he went in the nurse's room and played his games on the computer, we read stories and he was almost himself. It as so nice to see. Once that chemo stoppted, there was no stopping him. He also started to eat and ask for food. We all slept well that night.

On sunday his platelets had dropped down to 9 so he got a transfusion. And after that was done Claire (his nurse)heplocked him (removed the machine) and we were able to go outside. Just as we were leaving Cassie and her dad (our neighbours) came by. conor was thrilled. So we all went outside and had a little picnic and played duck duck goose. Conor was so excited to see cassie. He talked about it all the rest of the night. He was right back to himself. God, I even had to give him time outs and dicipline him! It was so nice to do :-). After cassie left we took conor to Ronald Mcdonald house where darren is staying. conor played in the playroom while darren and I cooked a real meal. It was so much fun to be there, out of the hosptial. conor really enjoyed it there too. He couldn't really get that it was McDonald's but there was no chicken nuggets and no large M over the house. But once he saw all the cookies he got over that just fine. We got back to the hosptial at 9 or so and he fell asleep almost right away and didn't move until 9 the next morning.

He was pretty happy to be home last night and probally will be even more so today when he wakes up and we can go outside. His WBC is pretty low so we are being careful where we go and what we do, but we are trying to be as normal as possible. Tanya said she may come by later with her new puppy. I think conor will really like that. Conor was pretty exhausted last night at bed time and fell asleep pretty quickly. I tried to put cream on his lips and neck as the accutane is drying out his skin pretty bad, but he won't let anyone touch him. I am hoping after a few days he will calm down a little.

It is still hard to believe he's sick. I can so udnerstand how he feels, I mean, once the chemo stopped and the meds stopped, he was *better* to him its that making him sick! I don't udnerstand it so how can he? I told his nurse all of this, and how I NEED to see something to convince me its real. That I need to be taken down to the lab and shown conor's tests and what normal cells, bone marrow etc. look like and what conor's look like etc. Just so I will believe it. So it has been arranged for us the next time we go back that we can do just that. I think then and only then will I begin to realize he is sick.

I have his tx schedule and med list here I will post about later for those of you who understand that stuff. And for those of you that don't you can learn all about it. Basically we have to continue the accutane at home as well as an antibiotic (spetra) 3x a week. He hasn't lost any hair yet, but I've been assured that WILL happen so we are going to get a hair cut soon to make that less traumatic on everyone. His voice has changed a little, it is more high pitched, and his eyes look a little older, but other than that, he's the same beautiful little boy he always was. Its so good to have him home.

Tuesday, September 10, 2002 at 09:57 AM (CDT)

Hi everyone. I know you have all been waiting for an update, so I'll try to fill you in as much as possible one what has been going on since I last wrote on Thursday (?). We got home last night after a long day of learing everything we needed to know about caring for conor at home. His brovia flushes, his meds, and what to watch out for in terms of side effects, infection, danger signs etc. Its alot to learn.

His treatments went well considering its intensive chemo. He never did learn to settle down and take his meds, but I like to see him with some fight left in him! Makes me realize that no matter what is going on inside him he's going to fight it. He's a pretty strong little boy. Friday and Saturday were probally the worst for all of us. Between fighting agiast his meds, his hemoglobin being really low (68 and dropping to 60 on Friday), and the effects of the cheomo, he was pretty much wiped out. On friday when he woke up he just sat on the bed and stared into space. He kept saying "i'm sad mommy". And he was. He just wanted to be home and off that damn machine. He was tired of dragging that around with him and not having the energy to do anything and being stuck inside. I went through a long list of things asking him what would make him happy, and finally he said that going to the library to play his games on the computer (esp. bob the builder on Nickjr) would make him happy. So off we went. Only when we got there it wasn't open. It was supposed to be open but it wasn't. So conor made us sit there waiting. He kept saying "soon mommy, soon" :(. Eventually we had to leave to be back for his 10 am treatment. Fortunatly, Lois came by to see him and when I told her what would make here happy, she left the room and came back with 3 bob the builder videos, some BTB legos, and some BTB toys. They had all been recently donated to the playroom and she hadn't even put them out yet. Conor was thrilled. He lay there all after noon watching the movies over and over and playing with the toys. It was so nice to hear him singing the theme song over and over. But it was still a rough day. He ended up needed a transfusion and he got that in the evening. I could see a difference in him right away, but not alot. He was feverish from the chemo and just all around feeling crappy. At one point his fever went up over 40 and we had to fight with him to get tylonel in him. They did cultures from his broviac sight and both of the lines to check for infection and they started antibiotics as a precaution. (As of Monday morning he was taken off those as the cultures came back negative and once he stopped the chemo, the fevers stopped). It was a very difficult night on all of us. Well except Aidan who is being amazing through all of this. He sleeps very well at night which is so wonderful. Its almost as if he knows what is going on and is doing his best to help out the only way he can. Well, by doing that and cheering conor up. conor just loves him and when he is really upset, or down he asks for aidan. I will put aidan in bed with ocnor and conor will cuddle him and immediatley is happy. Even to see aidan look at conor is unbelievable. If he is fussing or crying and conor comes around he stops. Conor calls him 'little buddy' and says "he's my best friend".

Saturday was conor's last day of chemo and it went pretty good. He did end up needing another transfusion as his hemoglobin didn't come up as much as they liked. He spent alot of that day sleeping and I managed to get out and spend some time out of the hospital for a few hours. It was nice to get out of there, but I was on edge the whole time. it reminded me of when conor was first born and I would leave him to go to school for 3 hours. I was a wreck the whole time I was away. But conor didn't even know I was gone. He woke up just a few minutes before I got back. Saturday night was much easier on him. its amazing how well he felt after the 2nd transfusion. he went in the nurse's room and played his games on the computer, we read stories and he was almost himself. It as so nice to see. Once that chemo stoppted, there was no stopping him. He also started to eat and ask for food. We all slept well that night.

On sunday his platelets had dropped down to 9 so he got a transfusion. And after that was done Claire (his nurse)heplocked him (removed the machine) and we were able to go outside. Just as we were leaving Cassie and her dad (our neighbours) came by. conor was thrilled. So we all went outside and had a little picnic and played duck duck goose. Conor was so excited to see cassie. He talked about it all the rest of the night. He was right back to himself. God, I even had to give him time outs and dicipline him! It was so nice to do :-). After cassie left we took conor to Ronald Mcdonald house where darren is staying. conor played in the playroom while darren and I cooked a real meal. It was so much fun to be there, out of the hosptial. conor really enjoyed it there too. He couldn't really get that it was McDonald's but there was no chicken nuggets and no large M over the house. But once he saw all the cookies he got over that just fine. We got back to the hosptial at 9 or so and he fell asleep almost right away and didn't move until 9 the next morning.

He was pretty happy to be home last night and probally will be even more so today when he wakes up and we can go outside. His WBC is pretty low so we are being careful where we go and what we do, but we are trying to be as normal as possible. Tanya said she may come by later with her new puppy. I think conor will really like that. Conor was pretty exhausted last night at bed time and fell asleep pretty quickly. I tried to put cream on his lips and neck as the accutane is drying out his skin pretty bad, but he won't let anyone touch him. I am hoping after a few days he will calm down a little.

It is still hard to believe he's sick. I can so udnerstand how he feels, I mean, once the chemo stopped and the meds stopped, he was *better* to him its that making him sick! I don't udnerstand it so how can he? I told his nurse all of this, and how I NEED to see something to convince me its real. That I need to be taken down to the lab and shown conor's tests and what normal cells, bone marrow etc. look like and what conor's look like etc. Just so I will believe it. So it has been arranged for us the next time we go back that we can do just that. I think then and only then will I begin to realize he is sick.

I have his tx schedule and med list here I will post about later for those of you who understand that stuff. And for those of you that don't you can learn all about it. Basically we have to continue the accutane at home as well as an antibiotic (spetra) 3x a week. He hasn't lost any hair yet, but I've been assured that WILL happen so we are going to get a hair cut soon to make that less traumatic on everyone. His voice has changed a little, it is more high pitched, and his eyes look a little older, but other than that, he's the same beautiful little boy he always was. Its so good to have him home.

Thursday, September 05, 2002 at 04:05 PM (CDT)

Well as yesterday was better than Tuesday, today was better than yesterday. Agian, last night was hard, getting conor to take his meds and it isn't going to get any easier I don't think. Today a woman with childlife came by to do some *mediacl play* she had alot of toys, medical equiptment, books etc for conor to play with to get an udnerstanding and not be so scared. We started to work on taking pill with pretend pills so that he can get his meds that way and not in liguid form, but I think that is going to be a long road. He got me to take a few *pills* but he mananaged not to take any :-). She is going ot keep working with him until he gets it. A big part of it is, I keep telling him the medicine will make him better to which he replies he's not sick. And to him, (God, even to me!) he isn't sick. The medicine is what is making him sick. So its going to be a long process to get him to understand what is happening. We have talked about his blood and how it is sick and that we are working to make it better. He asked some questions and was very attentive so hopefuly he has a better understanding now.
He did have a slight fever last night again and once difficulty staying asleep. I don't know if he's waking b/c he's in pain, feeling miserable or just having bad dreams. Probally a little of all three I would imagine. But once we got him to swallow some tylonal he did sleep better. He spent a lot of time last night playing with his daddy and they fell asleep together on the bed. Conor had been sick earlier and tracy, his nurse gave him some gravol. So right in the middle of playing, conor fell asleep.
This morning he woke around 7:30 and was his usual self. HE was joking and playing with me. We had some breakfast, he ate a bowl of raisin oatmeal and then we played in the playroom for awhile. His appetite is down but he hasn't lost any weight as of yet. He was 32 lbs this morning, and its been that weight since we arrived, so he isn't feeling too sick I guess. Mostly he's eating donuts, cinnomen buns and toast. With the IV going 24 hours a day for Hydration he isn't drinking anything so we are trying to work on that, but he is managing to eat small meals throughout the day. He is napping now as is darren and aidan. Conor had a fun day playing with Andrew, another boy on the floor and also brooklyn came by agian. We went for a little walk downstairs to pick up some lunch. Brooklyn brought a clown wig and glasses with her, but wouldn't put them on, but Conor did! He then wanted to walk around the hallways with them. He was laughing and smiling the whole time. It was really hard for me being downstairs, off the ward with conor, it was the first time we'd been out and around with his IV tower hooked up to him. We got alot of questioning looks,alot of sympathetic looks and alot of "thank god, thatn's not my child" looks from people. the hardest on me was when one little girl looked at her mom and said "Mommy, there's something wrong with that little boy.." I heard her mom try to explain things to her, so I turned around and told her he was sick, and that the IV tower was for his medicine to make him better and showed her his broviac. I asked her if she had any questions, which she did, and I answered them. She was ok with it then. Basically she looked scared by him because she didn't KNOW what was wrong with him, but once she knew, she was ok. I guess I have to get used to people staring at my precious little boy for different reasons now. It saddens me to see people look at him with fear or pity. He's still a little boy and needs to be treated like one! Whew, guess that really upset me more than I thought it did. I did get a picture of him in his clown wig and will scan and post it when I get home next week.
I am going to go over his chart with the nurse tonight or tomrrow so I'll know waht exactly is going on in terms of bloodwork. I am just starting to understand his treatment protocol and learning about the meds. So far it looks like 2 rounds of chemo (5 days each), followed by a spleenectomy, then the BMT. We all have been tested but it takes a week + to find out the results. They think aidan will be the best hope for a match, but he may be too young to be a donor. We have to wait and see. Thank you everyone who has offered to be tested for conor. I still don't really know how you would go about it, but I think you can contact a bone marrow registery in your area and go from there. Everyone has asked what they can do to help, and that would be the best way to do so. If you aren't a match for conor, you may be for someone else and be able help another family who's life has been affect by this horrible disease.
I guess you can say, we are all adjusting to being here, dealing with this disease and learning how to beat it.

Wednesday, September 04, 2002 at 12:14 PM (CDT)

Well most of yesterday went well. His friend Brooklyn came by for a visit and they were here for a few hours. Brooklyn's mommy brought a great big goody basket with stuff for everyone. Conor and Brooklyn played at making crafts, coloring and bouncy balls. He recieved his second cheomo med at 2 and it ran until 6. This one, he didn't handle so well, or maybe it was a combination of everything at once. He started to get really tired around 4 and finally fell asleep at 5 or so. At around 6:30 he woke up feeling sick and was really congested, he was given some gravol and went back to sleep right away. At around 7:30 he had a slight tempature and was tugging at his ears, but was still sleeping. The doctor came in to check for an ear infection and there was none, so he was given some tylonal and gravol. I think he must've been feeling pretty miserable because after that, he just wanted to be with his little brother Aidan. He climbed out of his bed and went over into Aidan's, but his arms around him, cuddled in and went to sleep. It was so precious to watch. We did eventually move him back to his bed, but he kept asking for Aidan. He loves his little brother so much and gets very upset when Aidan isn't nearby.
Conor slept pretty good throughout the night and woke on and off. Finally getting up at 8. He was given more meds in the morning but it was extremely difficult to get him to take the accutane. So we held off on that for awhile. He started to wake up more and was less groggy and more himself. We put on some music and sang and danced a little. That was really fun. He was back to himself again. He at a few pieces of cinnomen bun, and it made him sick, and the nurse sugessted gravol, but conor said, no his tummy wasn't sick and proceeded to eat the rest of the bun and a chocolate donut! We then had to get him to take the accutane, which was hard on everyone. He finally took it about an hour ago and now him and daddy are playing in the "beach" playroom.
He does keep asking to go home, but he is getting more adjusted to taking the meds and being here. The eyedrops are what he hates the most. That and having his bandage on the broviac changed. But he is fighting that less and less.
It was a pretty hard day yesterday, followed by a long night, but today he seems more himself and that makes it a little easier on all of us. it is so hard to see him crying and sick.
Maybe today will be easier on him.

Tuesday, September 03, 2002 at 11:45 AM (CDT)

Hi everyone. Conor's treatment began this morning at 9 am. He started with a medication for nausea called Ondnsetron, its like gravol but is more prentative and less likely to make him tired (not that anything can!!). Then he was given eye drops (decandron)to prevent conjunctivitis which is also a side effect of chemo. He then was given accutane as part of the chemo protocol and finally allopurinol whichs prevents hyperurcemia which may occur. It also helps to flush the body of toxins. He will get another med this afternoon from 2-6. I am not sure what that is called, but will post about it when I have more info. He did really well and is playing in the playroom with darren and aidan now. He was a little scared and cried to have the tubes removed at first, but he is fine now. HE adjusted realy quickly. He will be hooked up to the IV via his broviac for the whole time we are here to prevent dehydration. He can move around and play and has no limitations as it can be pulled along side him wherever we go :-). All is well so far. Thank you all so much for your thoughts and prayers and messages. we appreciate them all.
Mommy,Daddy and Aidan are doing well.

Monday, September 02, 2002 at 10:31 AM (CDT)

Hi everyone. I think the realality of it all finally hit me last night. It was the first time since being given this horrible diagnosis that I let go and let myself fall apart a little and just cry. It still doesn't really seem real to me. I keep looking at conor and he looks so perfect, so healthy, so NORMAL. I can't believe his little body has turned so agaist him. I don't know how I am going to be able to bring him to the hosptial for his treatments. To me, its like I am bringing him there to make him sick. I *know* that is not the case, but its hard to comprehend when he's still so much the same little boy he's always been.
We leave tonight for what will be a week long hospital stay. I hope and pray conor takes to the treatments well and its not to hard on him. I wish he understood a little more his situation. I have explained to him what is going on, so he knows he's sick and needs medicine, but it still doesn't help him when there are doctors and nurses poking at him all the time. I am confident he will do well though. he is a pretty smart little boy who understands more than I think he does I'm sure. His humour has lifted my spririts more than once.
I will try to update in the next few days if I am able to get internet access from the hospital. Until then, please continue to keep us in your thoughts and prayers.

Sunday, September 01, 2002 at 07:14 PM (CDT)

Hi Everyone. As of today we are all doing ok. Conor had surgery on Saturday, August 31, to put in semi permanent cathiter for his treatments. It is called a brodiac and has two lines. His surgery went really well and he is doing fine today. They allowed us to come home for a night and we will return late tomrrow evening. Conor begins his chemo on tuesday and will be in hospital until saturday or sunday of next week. Please continue to remember us in your thoughts and prayers.

Sunday, September 01, 2002 at 07:14 PM (CDT)

Hi Everyone. As of today we are all doing ok. Conor had surgery on Saturday, August 31, to put in semi permanent cathiter for his treatments. It is called a brodiac and has two lines. His surgery went really well and he is doing fine today. They allowed us to come home for a night and we will return late tomrrow evening. Conor begins his chemo on tuesday and will be in hospital until saturday or sunday of next week. Please continue to remember us in your thoughts and prayers.

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