History

Thursday, February 1, 2007 10:23 PM CST

I saw this picture the other day on Joanne’s screen saver and it brought back some wonderful memories. That picture makes me wish for a time machine so badly. It was taken when we were at Give Kids the World in Florida during Katie’s wish trip. I can remember feeling so perfectly happy that day. The weather was gorgeous, Katie was feeling wonderful and she was having so much fun in the pool. We had decided to take the last day of our trip to just relax at the GKTW village and hang out at the pool. To tell you the truth, as much fun as we had at Disney World, I think the best day of that trip was this one because it was slow paced and we got to just enjoy being with Katie. It hurts a lot when I think that when we came home from that trip we had to take her straight to the hospital and she never came home again. I long to be back in Florida with her in my arms. I wish that moment could have lasted forever.

I guess we don’t do a very good job of updating our Caring Bridge site anymore. I do feel bad about that. It’s just that we put so much energy into the charity we’re running (www.givemarrow.net). For me, it’s a great way to ease the pain in my heart. When I start to feel overwhelmed by feelings of missing Katie so badly, I find comfort in rolling up my sleeves and doing some things to help out on the bone marrow front. After Joanne and little Bryan, my work at KBBMA is the only thing that gets me to keep going day after day. I feel like we’re accomplishing some good things. We’re helping more and more families through our Bone Marrow Transplant Family Support Program where we provide some financial help to families of patients that are going through a bone marrow transplant. We’re also reaching more and more people with our message about joining the bone marrow registry and donating cord blood. Most recently, we’ve started to look for a bone marrow transplant related research project that we can sponsor. This is very exciting to me and I hope we can achieve some great things here.

A few weeks ago we got the very exciting news that the Katelyn Bedard Bone Marrow Association is officially a registered Canadian charity. Joanne and eye both shed a few tears when we got the news. It just means a lot to us to be doing something so special in memory of such a special little girl.

Lastly, there’s one other thing I’ve been fiddling with on the side. It’s another good diversion for me when grief starts to overwhelm me. Myself and couple of my talented friends have created an online game. It’s called TerraClues. It’s a puzzle / trivia game based on Google Maps technology. The idea is that people create virtual “treasure hunts” where you follow clues that lead you to hidden locations on the map. You might like it. If you have a minute, check it out at www.terraclues.com.

That’s all for now. Thanks for stopping by to read this.

Bryan

Saturday, September 2, 2006 8:02 AM

Just a quick update to let everyone know that the first annual Bowling for Bone Marrow Bowl-a-thon was a huge success. On behalf of all of the members of the association, I would like to say thank you to everyone who helped out with the bowl-a-thon. Alot of time and effort went into the planning, however, it was not just those of us that organized it that made the day such a huge success. Thank you to everyone who helped out the day of the bowl-a-thon. We could not have done it without all of you. Also, a HUGE THANK YOU to everyone who participated and to those who pledged you. Without you guys, this day could not have been possible.

We hope that everyone who came out had a good time, afterall, this was our number one goal. We wanted the bowl-a-thon to be a fun day for everyone of all ages. I hope that was accomplished. We are also thrilled that we were able to raise over $14000. Just think of all the families that we will be able to help with that.

Thanks again to everyone who helped make this day so special and we hope to see you all again next year.

I have added a few pictures of the day to the photo album, but it only holds three pictures. So, here is a link to Nicholle's photos. Thanks Nicholle for being our official photographer that day. The first few photos are from Art in the Park, so you will have to scroll down to get to the bowling photos.

Wednesday, August 9, 2006 8:37 AM

Where does the time go? It seems like summer is just flying by. We have been having a pretty good summer, spending lots of time in the pool. Little Bryan loves to jump in the pool and swim around; he has become quite the little fish. He seems to have grown quite a bit this summer too; I think he is going to need new long pants in the fall. Unless of course we are expecting alot of flooding, then he is all set. His vocabulary has become very extensive too. We have had some pretty interesting conversations to say the least. He seems particularly interested in his body parts and the difference between girls and boys, so most of our conversations revolve around that subject, never a dull moment.

This past weekend we spent the weekend at my aunt's trailer. It was like a mini vacation. We had a good time and were able to enjoy some nice evenings sitting around the campfire just relaxing. We tried to go to the beach a couple of times, but we were chased away by the flies (they were biting), maybe next time.

I can't believe we are already in August. And that means that the bowl-a-thon is less than a month away. We are so excited about it and we can't wait to see all of you at Bowlero on August 26th. If you haven't registered, please visit the Katelyn Bedard Bone Marrow Association website to get registered. We are hoping this is going to be a big success so that we can help more families.

P.S. I added new pictures to the photo album.

Friday, June 30, 2006 1:13 PM

I know, I know...it has been far too long with the updates. Well, this week has been a difficult week. The past year has been an extremely difficult year, but this week in particular has been hard. Today marks the one year anniversary of Katie's passing. We started the day with a mass said in honour of Katie, and then went for breakfast. Later we will meet with all of our family at the cemetery and then go out for diner. We have decided to make it a family day and have been enjoying some time around home.

Not a day goes by that we don't think of Katie, she is always in our thoughts and forever in our hearts.

Some of you may have noticed that we have been in the local media the last couple of days to promote the Katelyn Bedard Bone Marrow Association. We are now an official non-profit organization and are currently waiting for the charitable status. We are organizing the Bowling for Bone Marrow bowl-a-thon, which will take place on August 26, 2006. If you are interested in signing up (either individually or as a team) please visit the www.givemarrow.net website to register.

Thanks for checking in.

Thursday, May 18, 2006 9:57 AM CDT

Hello everyone. Just a really quick update today. We are spending a week visiting our friends Mike, Kim and Ethan in sunny California. We arrived here Monday May 15, 2006 and we will be heading back home on Monday May 22, 2006. While we are here, we are spending a few days at Disneyland. Bryan has been keeping a blog of our trip, complete with photos on our discussion boards. You can view them by visiting www.givemarrow.net then click on discuss then click on the photography discussion. The blog about the trip is called Califonia Dreamin'. Thats all for now.

Friday, April 28, 2006 9:12 AM

I know this update has been a long time coming. Things have been pretty good around here. We have been busy with the Katelyn Bedard Bone Marrow Association. The GiveMarrow website has a new look and some new features, if you haven't visited it lately, you should. We are organizing a fundraiser called, Bowling for Bone Marrow. The slogan will be; "Throw a strike for the gift of life". This will be a family event and a day filled with fun activities for the whole family. We are so excited and hope this will be a great a success. We are also hoping this will become an annual event. If you would like to participate or if you would like to help us out, please visit www.givemarrow.net and request a pledge form package.

Everyday with little Bryan brings a new adventure. And everyday, he does something that makes me look at him and say, "Katie, are you in there?" He does so many things that remind me of Katie. Just the other day, I was sitting downstairs, working on the computer and little Bryan was upstairs watching TV. All of a sudden, I smelled something...I quickly recognized the smell as nail polish. I raced upstairs and found that Bryan had painted his feet pink. Amazingly, he only got a couple of spots here and there and all on things that could easily be cleaned with nail polish remover. The whole thing reminded me of a story from when I was little. I remember painting nail polish underneath one of my parents' end tables. And, I remember getting in trouble for it, but for years, I never understood why I got in trouble for it. I mean you couldn't see where I had painted unless you laid down under the table, something I'm sure my parents (nor any visitors) would do. So a few years ago, I asked my mom how she knew...I guess I didn't notice that I had dripped some on the carpet, oops.

On a more serious note, my cousin and his wife had their second child this week, a baby boy, and the baby is not well. Please keep baby, mom, dad and little sister in your prayers.

We would also ask that you pray for one of Katie's little friends from the hospital, Shelby. Shelby was diagnosed with Ewing's Sarcoma last year and they just found out that all the chemo and radiation that Shelby has undergone has not work. Bryan and I are struggling with this news as it reminds us so much of what was happening with Katie last year at this time.

Wednesday, February 1, 2006 7:50 PM

Hello to all,

Just a quick little update to let everyone know what we have been up to. Let me start by telling all of you about the T2B (Transition to Betterness) gala we attended this past Saturday. What an amazing event this was. Every year at the gala, they honour several individuals who have lost their courageous battle with cancer. This year, we were honoured that Katie was chosen as one of the honourees. The theme of the evening was T2B rocks Amadeus: a night in Vienna. When you walked into the hall, you were immediately taken back in time to an old Victorian ballroom. Even some of the volunteers were dressed in period costumes. The evening was a huge success with its silent and live auctions, the Champagne Diamond Toast (which we did NOT win by the way) and the Martini Bar. We are fortunate to live in Windsor, it is a very caring, compassionate and generous community. T2B is an amazing organization that helps patients and families stricken with cancer in the Windsor and surrounding area. Their mission statement is as follows: Transition to Betterness provides a comfortable and compassionate hospital setting and meets the special and unique needs of patients and their families during the most difficult time of their illness. The evening was filled with fun and laughter. Thank you to all our friends at Transition to Betterness for honouring Katie and for a wonderful evening.

Other than that, we have been busy with everyday stuff. Little Bryan has been fighting a little bug it seems for about two weeks. Bryan has a little bug as well for about a week or two. Myself, I ended up at the clinic twice in the past month for strep throat (although, the second time I went, the doctor scolded me because I didn't finish the first course of antibiotics he prescribed and he said that is why it came back). But we all seem to feeling a little better and lets hope we are all on the mend.

Bryan has been busy speaking to different local groups about the Katelyn Bedard Bone Marrow Association. And were even on the local CBC news one night. Things seem to be going very well with the group. We have about 20 to 25 people that come out to our meetings and we look forward to seeing everyone each month. It really is a great group of people. If you are interested in joining us, please feel free. Just drop us a line (bryjo@sympatico.ca) and we will let you know when and where. Also, Bryan has added a discussion forum to the website so if you haven’t checked it out lately, please go to www.givemarrow.net and check it out. We are still waiting to get our charitable status, but once we do, we are hoping to have a fundraiser. We will keep you posted as to when and where.

Joanne (Bryan, Little Bryan and Angel Katie)

P.S. I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Wednesday, February 1, 2006 2:54 PM CST

Hello to all,

Just a quick little update to let everyone know what we have been up to. Let me start by telling all of you about the T2B (Transition to Betterness. Visit www.t2b.ca) gala we attended this past Saturday. What an amazing event this was. Every year at the gala, they honour several individuals who have lost their courageous battle with cancer. This year, we were honoured that Katie was chosen as one of the honourees. The theme of the evening was T2B rocks Amadeus: a night in Vienna. When you walked into the hall, you were immediately taken back in time to an old Victorian ballroom. Even some of the volunteers were dressed in period costumes. The evening was a huge success with its silent and live auctions, the Champagne Diamond Toast (which we did NOT win by the way) and the Martini Bar. We are fortunate to live in Windsor, it is a very caring, compassionate and generous community. T2B is an amazing organization that helps patients and families stricken with cancer in the Windsor and surrounding area. Their mission statement is as follows: Transition to Betterness provides a comfortable and compassionate hospital setting and meets the special and unique needs of patients and their families during the most difficult time of their illness. The evening was filled with fun and laughter. Thank you to all our friends at Transition to Betterness for honouring Katie and for a wonderful evening.

Other than that, we have been busy with everyday stuff. Little Bryan has been fighting a little bug it seems for about two weeks. Bryan has a little bug as well for about a week or two. Myself, I ended up at the clinic twice in the past month for strep throat (although, the second time I went, the doctor scolded me because I didn't finish the first course of antibiotics he prescribed and he said that is why it came back). But we all seem to feeling a little better and lets hope we are all on the mend.

Bryan has been busy speaking to different local groups about the Katelyn Bedard Bone Marrow Association. And were even on the local CBC news one night. Things seem to be going very well with the group. We have about 20 to 25 people that come out to our meetings and we look forward to seeing everyone each month. It really is a great group of people. If you are interested in joining us, please feel free. Just drop us a line (bryjo@sympatico.ca) and we will let you know when and where. Also, Bryan has added a discussion forum to the website so if you haven’t checked it out lately, please go to www.givemarrow.net (or click on link at bottom of this page) and check it out. We are still waiting to get our charitable status, but once we do, we are hoping to have a fundraiser. We will keep you posted as to when and where.

Joanne (Bryan, Little Bryan and Angel Katie)

P.S. I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Wednesday, February 1, 2006 1:38 PM CST

Monday, January 2, 2006 9:00 AM

Happy New Year!!

The Holidays here at the Bedard home have been as good as can be expected. Little Bryan loved his train table. It was difficult to get him to open any other presents though. When I would ask him if he wanted to open another present, he would say, "NO! I play trains!" But, if I would pretend to open one of his presents he would come over and say, "I help." It was very cute. As difficult as Christmas day was for us, we took joy in watching little Bryan enjoy the day.

I think for me, New Year's was a little more difficult. I know that sounds crazy, but at least on Christmas, some of the sadness we were feeling was balanced out by little Bryan's excitement. But we didn't have that at New Year's. I guess I'm having a hard time accepting the fact that a new year is beginning without Katie and that we will have to go through the thing without her. I know there have been other firsts, but this one is weighing heavily on me.

My sister, however, has predicted that 2006 will be a good year. Let's hope.

Happy New Year to all and we wish you happiness and good memories for 2006.

Joanne (Bryan, little Bryan and Angel Katie)

P.S. I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Wednesday, December 14, 2005 8:05 PM

I know, I know, it is long overdue. We posted new photos of little Bryan to the photo album as well.

There isn't really a whole lot to report. We haven’t really been doing anything, but yet it seems like we are always on the go. Mostly, I've been busy with Christmas shopping. I'm very excited about the gift we got for little Bryan. Since he can't read yet, I'll let you in on it; we finally broke down and got him one of those wooden train tables. It's not the actual Thomas train table, but it is compatible with the Thomas trains (I made sure of that). In case some of you didn't know, little Bryan is a huge Thomas the Tank Engine fan. Any of the nurses, child life specialists or PSA's at the hospital can vouch for that. Whenever we would take little Bryan out for a walk around the halls, he would make a beeline for the playroom where he would stand there and play with the trains for an hour easily.

Last night we attended a Christmas party hosted by the Barbara Parry Paediatric Oncology Association. This is the organization that supplies the Carla dolls that Katie was so fond of. We had such a fun time, and little Bryan could hardly contain his excitement, he ran around most of the night just laughing and screaming. And had a few minor injuries due to the fact that he wasn't looking where he was going. He ran head first into a table and got himself right on the bridge of his nose. It didn't keep him down long though.

At this time last year, is when Katie was just starting with her really bad bout of typhlitis and we really weren't sure how bad it was. She was still in good spirits most of the time and was looking forward to Christmas. When Santa came to the hospital for his pre-Christmas visit and he was only allowed to come into Katie's room if he followed these rules:

1. He was not allowed to come too close.
2. Katie was not going to talk to him, I had to do the talking.
3. He couldn't hand the present to Katie, he had to give it to either myself or Lisa (Child Life Specialist from the hospital and one of Katie's friends).
4. Last but not least, he couldn't say HO! HO! HO! too loud.

Well, Santa was good enough to follow the rules and we even managed to get a picture of the three of us (Katie in my arms on my left hip and Santa standing next to me on the right, but not too close).

Well that’s it for now. I will try to update again before Christmas, but just in case I don’t get the chance, have a very Happy Holidays.

Joanne (Bryan, little Bryan and Angel Katie)

P.S. I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Friday, October 28, 2005 4:23 PM

Hello all. Sorry it has been so long since the last update. We have been pretty busy; I can't even remember all that we have done.

I know one big thing since the last update is that little Bryan celebrated his 2nd birthday. It was fun filled weekend with celebrations at Grandma and Grandpa's on Saturday and at Meme and Pepe's on Monday. Bryan was right into opening his presents. Every time we would open a new gift, he would say cooool!! It was very cute. How I wish Katie could have been there, she would have loved to be the big sister that day. I could just picture her telling everyone everywhere we went, "today is my brother's birthday." I'm sure she was grinning from ear to ear up there.

Today marks another milestone. Today, Katie would have turned 4 years old. As you can imagine, she has been on our minds all day. Bryan has taken today off and will be on vacation next week as well. It really is a very difficult time, but I find if I try to focus on the good times, it helps. We will be having a small get together with our family at the cemetery and then out to diner. I'm sure Katie and Hannah are having there own little birthday tea party up there today and will be smiling down on us. They must be, look at what a gorgeous day it turned out to be.

Thanks for stopping in.

P.S. I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Saturday, October 8, 2005 9:18 AM

Although this has been the most difficult year of our lives, Bryan and I still have many things to be thankful for. And so, this weekend we are taking the time to so just that, be thankful. Please have a safe and restful Thanksgiving Day weekend, and remember to take time to reflect. We all have things to be thankful for. Life is short, tell your children and all your loved ones how much you love and appreciate them, not just this weekend, but EVERYDAY. Happy Thanksgiving.

Sunday, October 2, 2005 1:19 PM

I know it has been a long time. But we really haven’t been up to too much. Well, I guess that’s not exactly true. First off, I just wanted to let everyone know that Katie’s headstone was put in about a week ago. It really is beautiful, we decided to have her picture put on it and it really had made a difference. Now, when we go with little Bryan, he stands on the headstone and says, “Hi Katie, I love you!” I think it will help him understand why we go the cemetery. Last Sunday, we attended a tree planting ceremony that the funeral home puts on every year to honour everyone who passed away in the preceding year. There is a memorial forest just outside Amherstburg (about half an hour drive from our house) and families are invited to go pick out a tree in honour of their loved ones. So, our whole family (My mom & dad, Bryan’s mom & dad, Kevin & Rhonda, Zack & Brayden, Carolyn, Aunt Angie & Uncle Jake and Tante) headed out to the forest and picked out two trees, (one for Katie and one for My uncle who passed away last September). It was nice, because my nephews had painted some rocks, so we placed the rocks around the base of the trees and my aunt, Tante, had brought some things to decorate the trees. After the trees were picked, we headed over to Holiday Beach were the ceremony took place. It was a very emotional ceremony, but it was beautiful.

This past Wednesday, we headed to London for the annual general Childcan meeting. It was a great night and it was so nice to see so many of our friends that we met in London whom we haven’t seen in some time. Bryan was invited to speak about the Katelyn Bedard Bone Marrow Association. I must say, he did a great job and everyone congratulated us on our new adventure and expressed they felt there is a definite need for this organization. Many people have thanked us for starting this project, but there is no need to thank us, it is our pleasure, what better way to honour a wonderful child.

On Friday, we had the privilege to attend the Gala for the Cure at the Verdi Club in Amherstburg. Every year, the Verdi Club hosts this event and all the proceeds go to the Canadian Cancer Society. This year, the proceeds are designated for the area of Childhood Cancer Research. The best part of the evening was the speech by Frances and Paul Hammond. You can read their speech on Lucas' website, it is a very heartfelt testimonial as to what a family faced with childhood cancer goes through. The speech was followed by a power point presentation entitled Faces of Childhood Cancer: Our Heroes, featuring some of the most heroic children we know. Thank you to our friends Jackie and Anthony for hooking us up with some tickets (apparently the event was sold out). We had a great time; I even won a gift certificate to a local restaurant (See Cathy, I told you I was lucky).

A while back, Katie and I took about an hour of so and I let her go around the hospital and take pictures. So, I have put all the pictures together and I have created a tour of the 7th floor from Katie’s perspective. Just click this link and you too can see Katie’s tour, enjoy.

Finally, I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Joanne

Saturday, October 8, 2005 9:18 AM

Sunday, October 2, 2005 12:19 AM CDT

I know it has been a long time. But we really haven’t been up to too much. Well, I guess that’s not exactly true. First off, I just wanted to let everyone know that Katie’s headstone was put in about a week ago. It really is beautiful, we decided to have her picture put on it and it really had made a difference. Now, when we go with little Bryan, he stands on the headstone and says, “Hi Katie, I love you!” I think it will help him understand why we go the cemetery. Last Sunday, we attended a tree planting ceremony that the funeral home puts on every year to honour everyone who passed away in the preceding year. There is a memorial forest just outside Amherstburg (about half an hour drive from our house) and families are invited to go pick out a tree in honour of their loved ones. So, our whole family (My mom & dad, Bryan’s mom & dad, Kevin & Rhonda, Zack & Brayden, Carolyn, Aunt Angie & Uncle Jake and Tante) headed out to the forest and picked out two trees, (one for Katie and one for My uncle who passed away last September). It was nice, because my nephews had painted some rocks, so we placed the rocks around the base of the trees and my aunt, Tante, had brought some things to decorate the trees. After the trees were picked, we headed over to Holiday Beach were the ceremony took place. It was a very emotional ceremony, but it was beautiful.

This past Wednesday, we headed to London for the annual general Childcan meeting. It was a great night and it was so nice to see so many of our friends that we met in London whom we haven’t seen in some time. Bryan was invited to speak about the Katelyn Bedard Bone Marrow Association. I must say, he did a great job and everyone congratulated us on our new adventure and expressed they felt there is a definite need for this organization. Many people have thanked us for starting this project, but there is no need to thank us, it is our pleasure, what better way to honour a wonderful child.

On Friday, we had the privilege to attend the Gala for the Cure at the Verdi Club in Amherstburg. Every year, the Verdi Club hosts this event and all the proceeds go to the Canadian Cancer Society. This year, the proceeds are designated for the area of Childhood Cancer Research. The best part of the evening was the speech by Frances and Paul Hammond. You can read their speech on Lucas' website, it is a very heartfelt testimonial as to what a family faced with childhood cancer goes through. The speech was followed by a power point presentation entitled Faces of Childhood Cancer: Our Heroes, featuring some of the most heroic children we know. Thank you to our friends Jackie and Anthony for hooking us up with some tickets (apparently the event was sold out). We had a great time; I even won a gift certificate to a local restaurant (See Cathy, I told you I was lucky).

A while back, Katie and I took about an hour of so and I let her go around the hospital and take pictures. So, I have put all the pictures together and I have created a tour of the 7th floor from Katie’s perspective. Just click this link and you too can see Katie’s tour, enjoy.

Finally, I have a little favour to ask everyone, I would like to make up a memory book. And so, I am asking everyone who has a memory of Katie to please email me their story or you can leave a journal entry. If you have more than one that you would like to share, please feel free, the more the merrier. If you know of someone who doesn’t read the website as much anymore, please pass the message on to them. My email address is bryjo@sympatico.ca. Thank you all for your help.

Joanne

Monday, September 5, 2005 7:51 AM CDT

Ok, let me try this again. I tried updating this a few days ago, but somehow, it reverted back to the old journal entry. So here it goes.

At this time, our thoughts and prayers go out to everyone who has been affected by hurricane Katrina.

So, what have we’ve been up to? Well a few weeks ago, Bryan’s cousin, Tim and his wife, Janelle, invited us up to Janelle’s family cottage near Sauble Beach. We had a great time with them and their son, Eden, who is exactly 1 year younger than Bryan. We did some water skiing. Well at least I tried to do some water skiing, Bryan on the other hand was actually pretty good considering he hasn’t skied since he was twelve. Tim and Janelle of course were pros, but they get to practice a little more often. Little Bryan had a great time. He loved giving Eden lots of hugs and kisses. Eden on the other hand wasn’t too impressed with all the hugs and kisses. All in all, it was a very relaxing week. See photo album for pictures of our vacation.

Also, a few weeks ago, ChildCan approached us and asked if they could use some pictures of Katie on their new website. Of course we were honored, it is just one more example of how many lives she touched and continues to do so. And so now, you can see Katie along with some of her friends like Hannah and Shelby featured on the ChildCan website. (www.childcan.on.ca)

Saturday we were off to my aunt’s trailer for a garbage can turkey dinner (I’ll explain in the next update complete with pictures). And yesterday we had a great time at Mel and Clayton’s (Bryan’s sister and brother-in-law) back yard BBQ bash. We had a meal fit for a King.

Please continue to pray for all the little ones who are fighting this dreadful disease as well as those who have earned their angel wings.

P.S. Don’t forget to check out the Katelyn Bedard Bone Marrow Association website at www.givemarrow.net.

Monday, August 15, 2005 10:18 PM CDT

Joanne and I are happy to announce something tonight that we have started working on. It is quite disturbing to us that we never found a bone marrow donor for Katie. We will always wonder if she could have been saved had we found a donor and got her to transplant quickly. It is our impression that the bone marrow registry is poorly promoted. Very few people even know it exists let alone are members. It is troubling that in a world with billions of people, only about 10 million people are currently registered worldwide.

We have decided to create a new organization called the Katelyn Bedard Bone Marrow Association. The purpose of this organization is to promote awareness about the worldwide bone marrow registries, to bring attention to the pressing need for bone marrow donors and to encourage all healthy adults to consider joining the registry if they are eligible to do so.

We have setup a web site called GiveMarrow.net (http://www.givemarrow.net).

The GiveMarrow.net web site is an information center assisting people in learning about bone marrow donation and making it easier for them to find out how to join the bone marrow registry in their country.

We plan on encouraging people to join the registry by passing out business cards with the GiveMarrow.net address clearly displayed. The hope is that people will visit our web site and easily find out how they can join the registry and get the process started. We are trying to compile a list of web links to as many of the worldwide registries as we can find. We have only found the site for a few registries so far but we will continue to expand the list over time.

In the next few months, we plan on making the organization official by incorporating it and by becoming a registered charity. To do this, we need to form a board of directors. If anyone is interested in being a part of this, please let us know. You can e-mail me at bbedard@givemarrow.net

Please spread the word about our web site. Once we have the business cards printed we will let everyone know and will get some to you if you would like to pass some out. Let us know.

Special thanks to our good friend Jay for taking the caveman art web site I put together and converting it to something really eye catching.

Monday, August 15, 2005 10:18 PM CDT

Thursday, August 4, 2005 11:05 AM CDT

First off, HAPPY 30th BIRTHDAY BRYAN!! Yes, he has caught up to me. (I turned 30 in February).

Sorry it has been so long since my last update, I have sat down at the computer 3 times to update and each time I got interrupted. So here it is.

We have actually been pretty busy (which isn't always a bad thing). We took little Bryan to see Thomas the Tank Engine in St. Thomas on July 23. It was a nice day. I'm not sure he was excited about it as we thought he would be. But he seemed to enjoy himself. His favourite part of the whole day was playing at the little wooden Island of Sodor train table. The funny thing is, this was his favourite thing to play with at the hospital too. All nurses and Child Life specialist could vouch for that. He also enjoyed the train ride on Thomas. (See photos in photo album for our day with Thomas).

This past Saturday we had my family reunion. It really was a great day. We had all kinds of fun. Bryan went golfing with my Dad, my brother and the rest of my male cousins -no girls allowed at this golf tournament. - The one in the fall will be co-ed. Anyways, before he left, I said to Bryan, maybe you will win the tournament this year, the thought made him laugh. (Bryan hasn't golfed in two years and even before that he only got out maybe once or twice a year). To everyone's surprise Bryan was the proud winner of the Mayea golf tournament (I'm not sure, but I think there must be somehting fishy with this golf tournament). We will now proudly display the Mayea Golf plaque on our wall till next July. It was so nice to see everyone gathered together and enjoying themselves, the kids especially. We are very fortunate to have such a great family. Thank you to my cousin Kim and her husband Brian for opening up their home and yard to us every year.

On Sunday, we celebrated our little friend Braedan's 4th birthday. It was such a nice party, we went to Colosanti's for a private animal viewing, lunch and some rides. Little Bryan had such a fin time.

Tuesday, Bryan went to the Tigers game. Although the game was a loss, he had a great time.

Yesterday was Bryan's actual birthday. Avatar, the company that Bryan works for, has cake on everyone’s birthday. So at about midnight on Tuesday Bryan says to me, "Oh! By the way, they are having cake at work tomorrow for my birthday, do you and little Bryan want to come for a piece?" I said sure, no problem. He then adds, "Oh! And do you think you could make a cake to bring?" Thanks for the heads up Honey. Needless to say, I made the cake and brought it over to his work. Then we headed out to dinner at Tunnel BBQ. Where I had arranged for a few of our friends to meet us. Bryan was under the impression that it was just going to be the two of us. When we went into the restaurant, he was surprised to see Mike, Kim, Matt and Dawn there. We had a very nice evening.

The Birthday festivities continue with a trip to the Tigers game on Friday where 16 of us will gather to celebrate some more.

Well that's it for now, I'll try to update again soon.

Saturday, July 16, 2005 8:35 AM CDT

I figured it was time for an update. We have all been doing ok. I think we try to stay a little busy, so we keep our minds occupied. Bryan went back to work this week. It seems to have gone well, except for the fact that he spent the week trying to get his work computer fixed (it crashed). I've been spending alot of time at my parents, visiting with friends and going shopping (old habits are hard to break). We've also been invited to supper alot, my parents, Bryan's parents, friends and we even stopped for Quizzno's one night and had a picnic supper. We went to watch our nephew Zack play soccer, Katie would have loved that. We went to watch Zack play hockey a long time ago and Katie would often talk about the time we went to watch him. She was always interested in what Zack was doing, I think she really looked up to him.

Today we will be heading out to our friends the Hammonds. We met the Hammonds at the hospital in London when their son Lucas was first diagnosed with ALL in January 2004. We are happy to say that Lucas is doing well and is currently in Long Term Maintenance. If you would like to hear Lucas' story, please visit him at www.caringbridge.org/canada/lucashammond, I'm sure they would love to hear your words of encouragement.

We will also be heading back to London on Wednesday. Every week, Childcan has coffee time for the oncology parents. We haven't been in a few weeks and we are looking forward to seeing everyone there.

Now, I am including two poems that were written for us and Katie. We find them very inspiring, I'm sure you will to. The first was written by Uncle Jake and the second is by my cousin Angela Hamann.

I Just Called To Say 'Hi'!

You left us for a better place
Too soon and just too fast,
You left behind our broken hearts
All we have left now is your past.

Where can I find you for a hug?
A giggle and a kiss or two
Where can I go to find that smile
That could only come from you?

You fought so hard to stay on earth
To show us courage and love
But God said, I need a Cinderella here
I need her here up above.

The memories you left sweet Katie girl
Will last a lifetime through.
The young and old whose lives you've touched
Have a special place in their hearts for you.

I'll just close my eyes and wander off
Through the stars and galaxies.
There will be a sign that you passed by
To live with Jesus in heavenly peace.

With golden wings to share your love
Beyond that big blue sky.
Please don't forget me here below
To call me just say, 'Hi'.

Love Forever, Uncle Jake.
xoxoxo

This is the one by my cousin:

I have forgotten my pain now
And so shall all of you
Jesus is here; I can run to him too
He said my wings would soon be attached
I am a Princess Angel
Be happy for that

Mommy be strong, for my memory lives on
All the courage you have has helped me along
Daddy don't worry, you have protected me so
Your guidance and strength is worth more than you know
Love my brother and shower him with many kisses and hugs
For his smiles and laughter will let you know you are loved

I am your rainbow, your bright shining star,
My spirit will be with you in all that you do
So shed not your tears when you remember my face
I am safe here in heaven, such a beautiful place.

Angela Hamann

Thursday, July 7, 2005 12:49 AM CDT

Thank you to everyone for their acts of kindness and comforting words at this very difficult time. Thank you also to all who were able to attend Katie's funeral. We know many of you were there in spirit as well. For those of you that were not able to attend, Bryan and I shared a few words at the service. So, I thought we would share them with you:

Katie was a beautiful little girl. She had such a warm smile and gorgeous dark brown eyes that would melt your heart when she gazed at you. She loved everything pink. There was barely a stitch of clothing in her wardrobe that wasn't pink. She loved playing with her brother Bryan, her her cousins Zack and Brayden and all of the little friends she made. Of the last 18 months, Katie had to spend almost 14 months isolated in a hospital room. Instead of letting this get her down, Katie chose to make the best of everything. She made beautiful crafts, watched every episode of Dora 3 times over and looked forward to spending time with her many friends at the hospital like Lisa, Melissa, Ollie the Clown and all of the doctors and nurses. In our darkest days, when Bryan and I had been dealt more bad news about her health, it was Katie that consoled us. If she saw us crying, she would flash us her smile and would climb into our arms and give us a big hug. She would then start to sing us one of her favourite songs to take away our pain. We will never forget Katie's Wish Trip to Disney World this year. There was so much bad luck and bad news in Katie's life in the last year and a half. The Wish Trip was the one bit of good luck for her. We had tears of joy in our eyes when our little princess got to meet Cinderella. We will never forget the brightness in her eyes and the huge smile on her face those 5 days last April.

Katie,

It is so painful for Mom, Bryan and I to see you leave us. There is so much you were looking forward to, like swimming in the pool this summer, going to school this fall and making lots of new friends like you always did anywhere you went. We are so proud of you for never letting cancer drag you down. You were a fighter to the end and you made it so easy for all of us to keep on going. Although our hearts will forever hold sadness that your life was so brief, we will go forward and embrace life to its fullest. You taught us to appreciate each day and to never take life for granted. We are blessed to have you in our lives and it is an honour that God chose us to be at your side while you were sick. We love you so much sweetie and we are happy that you will be our little angel watching over us.

Friday, July 1, 2005 3:34 PM CDT

Funeral arrangments have been made:

Visitation will be held at the Marcotte Funeral Home and Chapel 12105 Tecumseh Road, Tecumseh on Sunday from 7-9 pm, Monday from 2-5 and 7-9 pm with parish prayers at 7:30 pm. We invite you to meet us at St. Gregory Church 13789 St. Gregory Road, St. Clair Beach, for Mass of Christian Burial on Tuesday, July 5 2005 at 11:00am

Memorial donations to Make A Wish, Childcan and Children's Health Foundation would be appreciated.

Friday, July 1, 2005 7:31 AM CDT

Thank you for your prayers. Sadly, the infection was too much for Katie. Yesterday at 7am, Katie earned her angel wings. She passed peacefully in our arms.

Thursday, June 30, 2005 0:34 AM CDT

I’m borrowing a line from my aunt here. If it weren’t for bad luck, Katie would have no luck at all. She is in the critical care unit right now.

I will give a brief account of the whirlwind of things that have happened these past couple days.

We were supposed to be on a plane to St. Jude’s hospital in Memphis today. In our last update, we mentioned there was concern she has a fungal infection. She does not. However, St. Jude’s phoned late Monday to say that they made a mistake and that they are not accepting patients for the clinical trial we were interested in right now. This was devastating. They strung us along for two and a half weeks. We delayed Katie’s treatment and her condition deteriorated. They should have told us when we first called that they were not accepting patients to that trial right now so that we could have proceeded with a different option.

After the devastating news from St. Jude’s, we scrambled to submit an application to OHIP so that we could enroll her in a program in Minnesota where they are using “natural killer” cells from a parent donor along with some chemo to induce remission. We enlisted the support of our MPP Sandra Pupatello and her staff has been fantastic in helping us get the application processed quickly. Many of our family and friends have taken it upon themselves to contact various leaders in the provincial government to try and bring attention to Katie’s story. We deeply appreciate your efforts.

Today, things took a terrible turn on us. Katie received a platelet transfusion this morning. It turns out the platelets were contaminated with Gram-Negative Rods (bacteria). Basically, our daughter who has been neutropenic for over 3 months had a bag of bacteria pumped into her today.

After receiving the platelets, her breathing grew extremely laboured and rapid and her blood pressure dipped very low. Her heart rate rose to over 225 beats per minute and stayed there for about 4 hours. She was taken immediately to the ICU. Tonight, we are still battling with her blood pressure and her abdomen is extremely swollen as it is filled with fluids. She finally fell asleep just after 1:00am.

Keep those prayers coming please!!!!!

Thursday, June 30, 2005 0:34 AM CDT

I’m borrowing a line from my aunt here. If it weren’t for bad luck, Katie would have no luck at all. She is in the critical care unit right now.

I will give a brief account of the whirlwind of things that have happened these past couple days.

We were supposed to be on a plane to St. Jude’s hospital in Memphis today. In our last update, we mentioned there was concern she has a fungal infection. She does not. However, St. Jude’s phoned late Monday to say that they made a mistake and that they are not accepting patients for the clinical trial we were interested in right now. This was devastating. They strung us along for two and a half weeks. We delayed Katie’s treatment and her condition deteriorated. They should have told us when we first called that they were not accepting patients to that trial right now so that we could have proceeded with a different option.

After the devastating news from St. Jude’s, we scrambled to submit an application to OHIP so that we could enroll her in a program in Minnesota where they are using “natural killer” cells from a parent donor along with some chemo to induce remission. We enlisted the support of our MPP Sandra Pupatello and her staff has been fantastic in helping us get the application processed quickly. Many of our family and friends have taken it upon themselves to contact various leaders in the provincial government to try and bring attention to Katie’s story. We deeply appreciate your efforts.

Today, things took a terrible turn on us. Katie received a platelet transfusion this morning. It turns out the platelets were contaminated with Gram-Negative Rods (bacteria). Basically, our daughter who has been neutropenic for over 3 months had a bag of bacteria pumped into her today.

After receiving the platelets, her breathing grew extremely laboured and rapid and her blood pressure dipped very low. Her heart rate rose to over 225 beats per minute and stayed there for about 4 hours. She was taken immediately to the ICU. Tonight, we are still battling with her blood pressure and her abdomen is extremely swollen as it is filled with fluids. She finally fell asleep just after 1:00am.

Keep those prayers coming please!!!!!

Sunday, June 26, 2005 9:32 AM CDT

The photo at the top of the page is of Katie and her firefighter friend Erin. You may recall that Katie was on the radiothon a couple months ago. When Andy asked Katie what she wanted to be, she responded (as she always dose) "I want to be a firefighter". Well, apparantly, one of the listeners out there has a daughter that is a firefighter in Ottawa. When she was relaying the interview back to her daughter, her daughter decided she wanted to meet Katie. So, we communicated back and forth a few times by email and finally a couple of weekends ago, we were finally able to meet Erin. She was very kind to come all the way from Ottawa to visit Katie. She even brought a few presents. Of course, Katie played a little shy, but after Erin left, Katie was very excited to have all this cool firefighter stuff. She was especially excited about her fire truck toothbrush. Erin, it was very nice to meet you. It was very kind of you to take the time to come and visit you are an inspiration to many young women.

Katie remains in the hospital and we have spent the last couple weeks gathering information about treatment options. I won't go in to the details of the things he have been debating. I will just leave it that we have decided to join a clinical trial at St. Jude Children's Research hospital in Memphis, Tennessee. We found out late Friday that they have a spot for Katie in a study on doing haploidentical stem cell transplants in relapse. In layman's terms, a haploidentical transplant is a transplant using a parent that is only half matched to Katie. Normally, transplants are only done for patients that are in remission (i.e. less than 5 percent Leukemia blasts in the bone marrow). Katie is nowhere near that, her blasts are around 85 percent. By doing the transplant in relapse, there will be a significantly higher risk of subsequent relapse after the transplant. However, after discussing the results of the study to date with the doctor at St. Jude, we feel this is the direction we want to go, despite the risks. Katie is expected in Memphis on Wednesday.

As excited as we are to be heading to Memphis, there is concern right now that we may be too late and the opportunity to go may disappear. Katie has had a fever for a few days now and is experiencing chest pains, shortness of breath and nausea. She is already on heavy duty antibiotics so there is a concern she has a fungus infection. Our bodies have fungus in them naturally but our immune system is able to control it. Patients that are neutropenic (have no neutrophils) do not have the ability to control the fungus so Katie regularly takes medicine for this. However, the longer you are neutropenic, the less effective the medicine becomes. Katie hasn't had any neutrophils for over 3 months now so we are definitely pushing our luck on that front. We have been told that if she does indeed have a fungus infection, transplant will not be an option. Katie will have testing done early this week to try and figure out if it is indeed a fungus infection and if we can head down to Memphis as planned.

Sunday, June 19, 2005 9:00 AM EST

Happy Father’s Day!

This is Bryan. I am so happy to be a father. Who wouldn’t with two wonderful children like Katie and Bryan? I’ve always said that the day Katie was born and I first became a father that I felt my life truly had meaning now. I could have died the next day and would have known that my life had served a special purpose, that of bringing such a precious person into the world. That feeling was only solidified when Bryan was born.

I would like you to take a good look at the picture at the top of the page of Katie and her grandpa (my dad Rene). My dad has always taken great pride in the fact that he is a blood donor. He has given blood for many, many years. In fact, he has a beautiful framed certificate at home congratulating him on his 100th blood donation. To date, he has donated well over 100 times. He did all of this not knowing that he would ever have a granddaughter that would have such a dire need for the help of people just like him. Earlier this week, I took a look through our records of Katie’s blood transfusions. To date, she has had over 70 blood transfusions. Where would she be without self-giving people like my dad? I heard the other day that of the millions of people eligible to donate blood, only 3 percent actually do. This puts my dad in select company. On behalf of the over 100 people you helped along the way dad, thank you.

I hope all of the father’s out there have a wonderful day.

Friday, June 17, 2005 9:51 AM CDT

We found out yesterday that the drug we tried a few weeks ago, Mylotarg, has failed to induce remission. We haven't done a bone marrow test, but Katie's white blood count was 0.6 yesterday and 0.5 of that was Leukemic blasts. We don't know what we are going to do now, but we continue to pray for a miracle. There are a few different options at this point and we will spend the next few days getting some information.

On the bright side, Katie feels fantastic right now and we are loving every minute we spend with her. Aunt Angie is spending the day with us at the hospital so it should be a fun day.

Please keep praying for us.

Tuesday, June 14, 2005 10:30 PM

Sorry, I know everyone is probably wondering what is going on. The original plan with this round of chemo was to do a bone marrow test after 2 weeks, but as always, things change. After further thought, it was decided to give the second dose of the Mylotarg (see Saturday May 28th journal), then do a bone marrow in 2 weeks. So it is another waiting game.

Katie has been feeling pretty well lately. Today she was dancing all day. Everywhere we went, she was tapping her feet or wiggling her bum. She has really been enjoying music lately. When I went to meet her in the playroom today, I found her sitting on the floor with musical instruments all around her and she couldn't wait to show me how they all worked. When Ollie Pale (Ollie is a clown) came in, she was singing songs so he sat down and started to play the piano. She actually sang along while he played. Usually she just clams up when someone tries to accompany her.

Bryan and Bryan went back to Windsor yesterday morning just to check things around the house and Bryan figured he would put in a couple of days at the office. Bryan will be back in London tomorrow and I will head back to Windsor on Thursday. While I am there, I will be treating myself to a well overdo hair appointment. I think the last time I had my hair cut was in October, needless to say, it needs more than a trim.

Sorry, just a quick update tonight. I'll try not to take so long next time.

Monday, June 6, 2005 10:34 PM

Recently, Bryan and I were given a greeting card and I find myself going back and reading the verse on it at least once a day. I find it very inspiring and so I thought I would share it with you:

What is Hope?

Hope is a happiness held in the heart
When happiness seems to be gone.
Hope is a quiet joy deep within
Encouraging us to go on.

Hope is a guide when we seem to be lost
That can help us in finding our way.
Hope is strong, immovable force
That our doubts and our fears cannot sway.

Hope is a light that burns in the night
In a place where a miracle starts,
And every good thing will come in its time...
As long as there's hope in our hearts.

The day after the last update was quite the eventful day. It started with Katie getting the chills when her fever would spike. When this happens, she shivers uncontrollably and just can't seem to get warm enough. It usually lasts about 5 to 10 minutes then her temperature shoots up and everything settles down. However, on Sunday morning (May 29), when this happened, it lasted about 20 to 25 minutes and her blood pressure dropped quite low. They were considering bringing Katie down to the Peadiatric Critical Care Unit (PCCU). By the time the doctor from PCCU came up, Katie was stabilized and her blood pressure had come up. Everyone agreed that was probably best for Katie to stay up here where the nurses know her so well. It was such a scary time for us. Thank you to all the nurses for your love and support and for taking care of little Bryan. As always, Katie surprised all of us. When Dr. Zelcer came in to check on Katie about an hour later, she was surprised (to say the least) to find Katie sitting up in bed chatting away to Aunt Angie and Uncle Jake.The rest of the week passed without any complications and Katie has been feeling well.

Little Bryan had his own little adventure this week. My aunt (referred to by everyone as Tante) has a trailer near Ridgetown (about an hour from London). She suggested that maybe Bryan would like to spend some time with her there. So, little Bryan spent all day Thursday and Friday at the trailer and was back with us on Friday night.

Everyone always says how quickly kids grow up and it's true. I often find myself wondering if Katie is 3 or 13. Today, while Katie was standing behind the rocking chair pushing it back and forth, I asked her a question. It wasn't a complicated question, it only needed a simple yes or no answer. I had repeat the question 3 times. Finally after the third time, I said "Katie, didn't you hear me?" she said, "yes, I did." Me- "Then why didn't you answer me?" Katie- "I was busy." Me- "Busy? How long does it take to say yes or no?" Katie- "About seven minutes." :)

Saturday, May 28, 2005 6:34 PM CDT

I'm sure everyone has been wondering what we have been up to. Well,we have actually been very busy.

First off, Katie started a new round of chemo. We decided to try using a relatively new drug called Mylotarg. Mylotarg is an antibody that seeks out and destroys the leukemic cells. This drug has been approved for use in the states, but is still in a phase I trial in Canada. So, in order to use it, the doctors had to get approval from the government, which they got without any trouble. The protocol that we decided to do was 4 days of a chemo drug called Mytoxantrone followed by a dose of Mylotarg on day 5. After two weeks time, they will test Katie's bone marrow to see if she is in remission. On Friday, the Mylotarg was administered and Katie seemed to tolerate it fairly well. However, she developed a fever late last night and we are not sure if it is a side effect of the new medicine or if there is an infection brewing. I guess we will just wait and see what the cultures show in the next 48 hours.

As we mentioned in previous journal entries, we decided that Bryan would be Katie's transplant donor. So, on Sunday, Bryan started taking a daily injection of GCSF. This drug was used to stimulate his bone marrow to produce extra stem cells. Since Bryan's appointment to have his stem cells harvested was scheduled for 8:30 on Thursday morning, we decided to head to Toronto on Wednesday evening. We decided to take advantage of the night out, and we had a very nice dinner at The Keg. On Thursday, Bryan had his stem cells harvested at Princess Margaret Hospital. The whole process took about 5 hours. After collecting the stem cells, they performed a T-Cell depletion, which helps to reduce the risk of GVHD. When they perform this process, they lose some of the stem cells that they harvest. And so, we were told that there was the possibility that he would have to return Friday morning. So, we went shopping at the Eaton Centre while we waited to hear back from the hospital. Around 6:30pm, we heard that they had enough stem cells and that we were free to head home. However, since we had already booked the hotel for Wednesday and Thursday night, we decided to stay the extra night. So, we decided to leave Toronto at 6:30 am Friday morning so that we could be back for when Katie would receive the Mylotarg. Thanks Grandma and Grandpa!! Grandma spent the two nights at the hospital with Katie and Grandpa stayed the two nights at Aunt Angie and Uncle Jakes with little Bryan. Katie was so excited to have her Grandma to herself for 2 days. I'm not sure who was looking forward to it more, Katie or Grandma. From what the nurses say, Grandma was pretty excited to be spending the time with Katie.

A few weeks ago, I had made a Dora cake for Katie. Unfortunately, that same day was the day they decided that Katie should not eat or drink anything until her tummy trouble subsided. Well, on Wednesday, we finally got the cake out and had a party. Katie decided that she wanted it to be a Friendship Party. So, we made invitation for the nurses and chidlife specialists, and Katie even called over to PMDU to invite all the staff there to come over. We had a nice turn out, and Katie even got dressed up in her Cinderella dress for the occasion. Thanks to everyone who came over, Katie was very excited to see everyone.

Please say lots of prayers that this round of chemo works out for Katie, as we are running out of options.

Thursday, May 19, 2005 8:06 PM CDT

Just a quick update. First of all, thanks to everyone for their kind thoughts and prayers. Katie has been feeling well the last few days. We have been going for a walk everyday. We wait till after supper as the hospital is not quite as busy at that time. Of course Katie still has to wear a mask, but she never complains, she is just so excited to get out for a bit. Usually we walk over to the London Regional Cancer Centre. They have a really nice fish tank in the lobby. Today, we all took a walk over there, Bryan, Katie, Mom and Dad. It was soooo cute, Katie and Bryan were running down the hall, holding hands (sorry, no pictures, we didn't bring the camera. We just enjoyed the moment). We are still looking at a few options in terms of what is next.

We will update again soon. We are spending alot of time enjoying our children. Thanks for checking in.

Monday, May 16, 2005 3:41 PM CDT

Katie had a bone marrow test today.... 85% Leukemia blasts... hate this disease.

Sunday, May 15, 2005 9:10 AM CDT

The Strength of an Egg

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you'll see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked nor broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That's where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered. Balancing an egg while running a household, going for doctor's visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer will pick themselves up and put themselves back together again.

- Juliet Freitag

Well I must say, our shell seems to be on the verge of cracking. We received the very discouraging news on Friday that Katie is most likely not in remission. They found some leukemia cells in her peripheral blood. Katie will have a bone marrow aspiration on Monday to confirm this and to determine what percentage of her bone marrow is leukemia cells. It looks like Katie's long road ahead was just made even longer. She will now have to undergo more chemotherapy which we are praying with all our hearts will induce remission. She will not be going to Toronto anytime soon. I'm sorry if this entry seems a little down, but it really does reflect how we are feeling.

On a better note, Katie seems to feeling much better. She was given the ok by Dr. Cairney yesterday to go ahead and try eating anything she would like (in moderation). As we suspecting, now that she is able to eat, she really doesn't feel like having anything. Also, Katie had a great day, Grandma and Grandpa came to visit and so did Aunt Miriam, cousin Lisa and her kids Derek and Erin. Although the kids were a little shy at first, once they warmed up to each other, they had a great time bowling. Katie has talked about her visit with Derek and Erin non stop this morning. Thanks.

Sunday, May 15, 2005 9:10 AM CDT

The Strength of an Egg

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albeit flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes, an egg. If you think about an egg, you'll see the point I make.

An egg has a polished smooth outer appearance with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be as smooth and solid as the outside. Most children, at some point in their lifetime, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked nor broken. Yet that same egg, tapped gently at an even slightly different angle will break. The contents, once so neatly concealed inside, will come spilling out, and the no longer perfect shell will be crushed. Then the shell looks so fragile that it seems inconceivable that it ever held any strength.

That's where parents of children with cancer are more like eggs than rocks. A rock is solid all the way through. If you tried to break a rock, it would be almost impossible. If successful, one would find that there was nothing inside but more rock. It takes a lot more than pure hardness to hold the hand of hope. These parents are not solid all the way through. They hurt, they fear, they cry, they hope. It takes a very careful balancing act to keep the shell from being shattered. Balancing an egg while running a household, going for doctor's visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty though, parents of kids with cancer will pick themselves up and put themselves back together again.

- Juliet Freitag

Well I must say, our shell seems to be on the verge of cracking. We received the very discouraging news on Friday that Katie is most likely not in remission. They found some leukemia cells in her peripheral blood. Katie will have a bone marrow aspiration on Monday to confirm this and to determine what percentage of her bone marrow is leukemia cells. It looks like Katie's long road ahead was just made even longer. She will now have to undergo more chemotherapy which we are praying with all our hearts will induce remission. She will not be going to Toronto anytime soon. I'm sorry if this entry seems a little down, but it really does reflect how we are feeling.

On a better note, Katie seems to feeling much better. She was given the ok by Dr. Cairney yesterday to go ahead and try eating anything she would like (in moderation). As we suspecting, now that she is able to eat, she really doesn't feel like having anything. Also, Katie had a great day, Grandma and Grandpa came to visit and so did Aunt Miriam, cousin Lisa and her kids Derek and Erin. Although the kids were a little shy at first, once they warmed up to each other, they had a great time bowling. Katie has talked about her visit with Derek and Erin non stop this morning. Thanks.

Sunday, May 8, 2005 11:43 AM CDT

Happy Mother's Day!

It's a beautiful sunny day here in London, perfect weather for Mother's Day. Katie slept in until 11:00am today, which is a little surprising because she went to bed around 8:30pm or so. I guess the morphine she is on is keeping her pretty darn comfy.

Katie has been feeling really well the last few days. Ever since we put the NG tube in to drain her stomach, the pain has really subsided. Also, she has been fever free for almost 3 days now. We're now 23 days into her chemo cycle so her blood counts could start to recover in the next week or so which is exciting.

We had some nice visits this weekend. On Friday, Uncle Ted from Vancouver was in town and came up to the hospital with Grandma Willy (Bryan's Grandma) and Grandma and Grandpa Bedard. Yesterday, we had a visit from Uncle Jake's daughter Kelly and her kids Andrew and Katie. Little Bryan enjoyed playing dinky cars with Andrew and really took a liking to him. He kept going over to him and giving him hugs and kisses. It was very cute.

We aren't expecting any visitors today and are planning to treat Joanne to a Red Lobster dinner, her choice.

Sorry for making everyone's head spin in the last update. We promise not to talk about HLA typing and KIR mismatching anymore. We'll just leave it that either Joanne or I could be a donor for Katie but the doctor recommended we go with me.

The transplant Katie is going to have is called a haplo transplant which means she does not have a matched donor. This is very risky for her. I would like to point out that had we found a matched donor in the bone marrow registry it would have been a far better option for her. I cannot stress enough the importance of the bone marrow registry. There are far too few people in the registry. Katie should not have to be faced with a haplo transplant as her only option. Society needs to do better for her and for others that need this life saving procedure. We are incredibly thankful and proud of all of Katie's family and friends that rushed to her aid and courageously joined the registry these past few months. However, I know that Katie still has friends and family that meet the criteria to be bone marrow donors but that still have not registered. Please do so as soon as possible. It is too late to help Katie now, but you might be able to help somebody else. As a parent who has had to watch his daugther relapse with disease while waiting to find a donor then suffer through more intense chemotherapy I cannot overstate the urgency of getting on the registry. If you are willing to do it, please do not put it off any longer.

To register in Canada, call 1-888-2DONATE or visit www.bloodservices.ca and look for the "Bone Marrow" link on the side menu.

Thursday, May 5, 2005 10:01 PM

This is just a quick update as lots has happened over the last couple of days.

First off, about the photo above, little Bryan had surgery today to bring down a testicle that has never come down from birth. This surgery was originally scheduled for the week we were in Florida. We rescheduled for June 2, but, I called the doctors office this week and told them that we were in London and asked if they would call us if there were any cancellations. Well they called yesterday and said there was a cancellation for today. So this morning at 10am, Bryan had his minor surgery. After I got him changed into his yellow gown, he stood up and said, "pretty!" I think he thought he was wearing a dress. Then when the porter came to bring him into the operating room, there was Bryan standing in his crib, rolling down the hall saying, "WEEEE!!!" It made it a little easier to leave him knowing he was having a good time. The doctors and nurses all said he was very good. He has been quite sore this afternoon and so has been very quiet. Knowing him, he'll be back to his old self in no time...I hope. Although he can be a handful at times, I would not want him any other way.

The next new development is that we have heard back from Toronto. As many of you may recall, we have been waiting to hear if Bryan or myself is what they call a KIR mismatch to Katie as a KIR mismatch donor gives Katie the best odds of beating the Leukemia. Well, it turns out we are both KIR mismatches. Although either one of us could be the donor, after looking at both our HLA types, the doctor feels that Bryan may be a slightly better donor than myself. I find it very confusing to try to explain the reason, so Bryan will write this part. Bryan and I are 99 percent equivalent in terms of being a candidate donor for Katie. There was nothing compelling to indicate that one of us should be the donor over the other. To help us pick a donor, they pointed something out about our HLA typing.

Everybody has two sets of 3 antigens for a total of six antigens. They
get one set from their mom and one from their dad. Suppose we name all of our sets like this:

(Sorry about the space, not sure how to fix it. Just scroll down a bit)

Set 1 set 2

Joanne A B

Bryan C D

Katie A C One from mom, one from dad

If Joanne is the donor, the A's will play nicely together but B is going to fight with C because they are different.

If Bryan is the donor, the C's will play nicely, but D is going to fight with A because they are different.

They feel that D & A (Bryan as donor) are slightly closer to matching than B & C are (Joanne as donor) so there might be an advantage to using Bryan as the donor.

They said it doesn't make a big difference but if we have to choose someone, it's possible that Bryan's HLA is slightly closer to Katie's. It's all so complicated. They said it's not particularly scientific, just a way to help break the tie. As you can imagine, both of us wanted to be the donor, but we also want Katie to have the best chance to fight.

Katie is still battling her tiphilitis. Her tummy has gotten really big again and the pain has increased also. So we had to increase her morphine again as well. She went for x-rays of her tummy today and although it doesn't look as bad as it was in December, her stomach is very distended. The doctor decided it would be best if put an NG tube in to help drain some of the fluid and air that is causing pressure in her tummy. This is probably one of the worst things Katie has to go through as they have to put the tube through her nose. Once the tube is in, it doesn't seem to bother her, it just while it's going in that sucks. Although she has been sleeping more than usual, she still finds time everyday to get out of bed and play for a while.

I guess it wasn't such a short update after all. But, I should go, it has been a long day. Please keep Katie and all the children battling this dreadful disease in your prayers.

P.S. Thanks to Mrs. Oldridge and her class from St. Louis school for the T-shirt and puppy. It put a great big smile on Katie's face.

Monday, May 2, 2005 12:02 AM CDT

Hello! Despite the fact that Katie went over 24 hours without a fever from Thursday evening to Friday night, she did spike another fever Friday in the night. Her temperature has been up and down since then.

Unfortunately, Katie's tummy pain has progressively gotten worse over the weekend. And this morning we had to start her on a low dose continuous Morphine infusion. We are hoping that this will keep her comfortable throughout the day. We are also hoping that we will be able to keep this at a low dose. For those of you that have been following Katie's story, you may remember that her morphine was turned up to quite a high dose back in December and she had to be weaned off slowly.

Despite her tummy pain, Katie had a good weekend. She was very happy to see her brother on Friday (it's amazing how much she misses him when he isn't around. I often wonder how she will handle it when we go to Toronto as Bryan will not be able to visit her while she is in strict isolation.) On Sunday we had quite a few visitors (Grandma, Grandpa, Aunt Carolyn, and Lisa). Katie was thrilled when everyone agreed to go to the playroom with her. She actually stayed in the playroom for her full hour. Lately she has only stayed in the playroom for about half an hour at a time, she usually gets tired and wants to go back to her room. It was so nice to see her enjoying herself.

Katie continues to make us laugh everyday. As you know, she is not able to eat and drink right now as we need to rest her bowel. In order to keep her nutrition up, she is receiving a continuous infusion of TPN. The other day, Bryan and I ordered Swiss Chalet for supper, when Katie saw the Swiss Chalet, she said, "you know what? That's what I'm getting in my tubies tonight, I'm getting Swiss Chalet too." Needless to say, Bryan and I had a good laugh, but we played along. Now whenever we are eating something she likes, she tells us that she is getting that in her tubes.

I would like to say a special thank you to Gord. Gord lives across the street from Aunt Angie and Uncle Jake, he is 87 years old and the other night, he sent home a cake for Katie. On the cake it said, "To Cinderella, From Gord". he remembered that she likes to pretend to be Cinderella.

Please keep Katie in you prayers, they are working as so far, Katie is not in as much pain as she was in December.

Friday, April 29, 2005 8:59 AM CDT

Good morning. Just a note to say that Katie has been feeling good the past day or so. The inflammation in her abdomen doesn't seem any worse, maybe even a little better. She still has a fever, but she goes much longer between spikes and it doesn't seem to get as high as before. She is still required to rest her bowel, so no food or drink by mouth yet. They started a TPN feed to give her the nutrition she needs until she is able to eat again.

Little Bryan is coming back today. Aunt Mel is coming for a visit so she is bringing him with her. We can't wait to see him!

Wednesday, April 27, 2005 11:16 PM CDT

It was a busy day. It started with a bit of a funny story. When Katie woke up today, she was a bit teary and told us she had a bad dream. We asked her what the dream was about, she said she had dreamed she was playing in the playroom and that a heart attack (yes, a heart attack) walked in and tried to take her away. We tried not to laugh when she told us this because she was obviously upset about it. We asked her what the heart attack looked like and she said it was green and had different coloured ears. She obviously overheard someone saying something lately but we aren't quite sure what exactly.

The Children's Health Foundation radiothon started today. We were interviewed around noon and our piece aired around 2:30pm. Sorry to those that expected to hear Katie around 11:00am, the plan changed a little this morning. We were really proud of Katie for being very brave during the interview. She didn't totally understand all of the questions, but she did her best to answer. We want to express our thanks to Andy, the DJ who interviewed us. Andy took the time to learn about Katie's story before interviewing us. He showed a true concern for what we are going through as a family and it was obvious that he cares and wants to help the children here at the hospital. We were happy to be able to share our story with the radio listeners in the London area. Hopefully Katie inspired some folks to make a pledge and help out the foundation.

One of the highlights of Katie's interview was when she was asked what she wanted to be when she grows up. She answered the question the same way she always does, she said she wants to be a firefighter. We were touched this afternoon when Russ, the father of Devon who is a 6 year old patient battling Non-Hodgkins lymphoma, came to see Katie with a special gift. He heard her say she wanted to be a firefighter on the radio. Russ is a member of the fire rescue team at the Nemak (Ford) plants in Windsor. He gave Katie his fire chief helmet (brand new, never worn). It is coloured white because it is a chief's helmet. Fire chief Katie is modeling her new helmet in the photo at the top of the page. Something special about the helmet is that it has the words Nemak E-R-T (emergency rescue team) on the the front. Katie's grandpa Bedard worked at the Nemak (Ford) Essx Aluminum plant for many years (recently retired from Ford after 38 years service). Thanks so much to Russ for giving Katie this special helmet. We ask our friends and family to keep his son Devon in their thoughts and prayers.

Joanne and I had been tossing the idea around of sending Bryan back to Windsor for a few days. This would give us an opportunity to spend a few nights at the hospital together. In the evenings, one of us is always at the hospital with Katie while the other is with Bryan at Aunt Angie & Uncle Jake's. This doesn't give us any quality time together and we know from experience that as the weeks go by it creates distance between us. By arranging a few nights here and there where we can be together, it should help quite a bit. Joanne's parents happened to be up for a visit yesterday and with the radiothon interview scheduled for today, we thought it would be good timing to have him go back to Windsor so they brought him home with them. Meme & Pepe and Grandma & Grandpa love having him and he loves being with them. We really miss him though when he is gone and can't wait for him to come back to be with us.

Tonight, Katie had a visit from Aunt Angie and Aunt Miriam. They stayed with Katie while Joanne and I attended the ChildCan Group meeting downstairs in the PMDU. Aunt Angie has some baby dolls that Katie loves to play with when we go to her place so they brought them up to the hospital. They had lots of fun giving the dolls a bath.

In our last update, we were happy to report that Katie's fever had gone away and that she was sailing along smoothly. Unfortunately, early Tuesday morning, Katie spiked another fever. The problem this time is that the fever was coupled with stomach pain. For those that followed Katie's story at the beginning of the year, she suffered through a condition called typhlitis (inflammation of the bowel) and had a fever for 24 straight days. Her stomach swelled as big as a balloon and she had to be on high doses of morphine to control the pain. It is a very serious condition that can lead to nasty consequences. In her case, the typhlitis was a result of the high dose ARA-C (chemotherapy drug she received). When she recovered from the typhlitis, we prayed she would never need this drug again. Unfortuately, when she relapsed again, ARA-C was the best choice to use to get her back into remission. We knew there was a risk of repeating what she went through before and no guarantees that she would recover from it as easily as before. At this point, most of Katie's symptoms point to a recurrence of typhlitis. She gets really sharp pain in her abdomen and shouts that her "tummy hurts". Her bowel sounds have pretty much stopped (you should always have bowel sounds) which means her bowels are grinding to a halt again. They found graham negative rods (bacteria) in her blood cultures which is likely a result of tearing in the lining of her bowel. On the bright side, her stomach is not swollen and she experiences only brief episodes of pain throughout the day and tolerates it pretty well. Her fever is under control (spikes every few hours but comes down with Tylenol). An X-Ray was done on her abdomen yesterday and there is only mild inflammation. There is nothing that can be done medically to actually heal the typhlitis. It can be managed though by resting the bowel (no food or drink by mouth), staying on heavy duty antibiotics and controlling pain with medication as needed. The only thing that will heal it is the return of Katie's neutrophils, which at this point could be as much as 4 weeks away. We are still clinging to hope that even if it is typhlitis, that it will just be a mild case and that aggressive management will keep her comfortable until her neutrophils return to save the day. There is still the possibility too that it isn't typhlitis and that things will clear up in a few days. However, that's not what her symptoms are saying right now, but we'll just take one day at a time and hope for the best.

It was a long update tonight, thanks for taking the time to read it.

By the way, there have been a lot of requests for us to post the photo of Katie and Cinderella again so I added it back to the photos section.

Monday, April 25, 2005 10:20pm

If you did not catch Thursdays update, please scroll down. If you did catch Thursdays update, here is a follow up. The radiothon is actually Wed. April 27th to Fri. April 29th. We have been temporarily scheduled to be one of the first stories. Probably sometime between 10 and 11am on Wed. They may also do a follow-up or two on the Thur. and/or Fri. We are hoping that Katie will be in the mood to ham it up, we would really like her to speak on the radio. Although the radiothon will be aired only on London stations, you can listen to FM 97.5 by clicking on this link: Q 97.5

Katie had a great weekend. So far she has been feeling really good. Her last fever was around 8pm on Wed. night. The doctor feels that it was probably the chemo she was on because the fevers started around 6 hours after starting it and they ended once it was stopped. The last type of chemo she got is the one that usually causes sore eyes for Katie. Everyday, we have been reducing the number of times she gets eye drops and so far she has had no sore eyes, she will be done the drops on Thur. Thanks for checking in.

Thursday, April 21, 2005 8:21 PM CDT

Katie is featured on the Children's Health Foundation web site. She is also part of their mailout for this year's campaign. We saw a copy of the mailout today. It looks really nice. There are a few photos of Katie and a message from Joanne. There is even information about how to join the bone marrow registry, which we are really happy they included. If you can find the means to donate to Children's Health Foundation, please do so. By donating to Children's Health Foundation, you are contributing to research and special care programs at Children's Hospital of Western Ontario in London, where Katie and many other children go to for the specialized care they need.

Katie will also be featured in next week's radiothon to raise money for Children's Health Foundation. The radiothon is from Tues. April 27th to Thurs. April 29th. In London, it can be heard on AM1290, FM97.5 and FM93. We're not sure yet when she will be on. All we know is that we will be interviewed during the radiothon next week.

Tuesday, April 19, 2005 3:45 PM CDT

Little Bryan and I are back in Windsor. I have a meeting tomorrow for work. Katie and Joanne will be alone at the hospital until Thursday afternoon when we return. Katie has 1 day of chemo left. She has been on eye drops around the clock (every 2-3 hours) so sleep has been a little broken. She spiked a fever on Sunday night and has been up and down with fever ever since. Her blood cultures came back negative though (no bacterial infection), so we assume the fever is from the ARA-C she is receiving (chemo drug). Her white blood count has dropped below 0.5, which is good because it means the chemo is probably working (i.e. the Leukemia does not appear to be resistant to the chemo). It is way too early to get excited though. It will be about 5 weeks before her blood counts recover and they do a bone marrow test to see if she is in remission or not. Things seem to be on track though.

Overall, Katie is feeling pretty well. When her temperature rises, she pretty much curls up in bed, but when it comes down she snaps back to her normal self. She isn't eating very much, but this always happens once she has been on IV fluids for a few days, especially if chemo has been running.

There's a nice story we haven't told from a few weeks ago. It's something that happened a couple days before we found out Katie had relapsed again, which is why we never posted anything about it (kind of got busy). Three gentleman from the Shamrock Club (Mark, Don and Matt) came by our house to bring Katie a wonderful gift basket. It had all kinds of really nice things for a little girl like DVD's, finger paints, Dora bed sheets, Dora underwear and more. They also presented us with a letter explaining that they were making a nice donation to Make a Wish to sponsor Katie's wish trip. At the time, we still thought the wish trip was going to be at the end of May. We had no idea that in less than a week's time, we would find out Katie had relapsed and actually be on her wish trip. The guys from Shamrock were fantastic and we really appreciate them reaching out to us. They run a private golf tournament every year and use the money they raise to help a family from Windsor dealing with childhood cancer.

For those that have been following Katie's story the past few months, there have been a lot of twists and turns lately. I thought it might be helpful to kind of summarize where things stand right now in terms of her medical treatment. The fact that Katie has relapsed a second time puts her in a high risk, poor prognosis category, even if she gets a transplant. The fact that she relapsed so quickly this time means it is critical that she get to transplant as soon as humanly possible. If we can get her back into remission, the plan is to get her to Toronto within a week of confirming remission. This raises the issue of who she will receive the transplant from. Obviously, we are no longer able to proceed with the option of using IVF to have a child that would be a match for her. This leaves us with two options. We can either use the 4/6 umbilical cord that was found or we can choose to use either Joanne or I as a donor (this is called a haplo transplant). Joanne and I had special testing done to determine our KIR type. We are still waiting for the results. If one of us is a KIR mismatch (yes, mismatch, not match) to Katie then that would make us a particularly good candidate to be a donor for her. If neither of us is a KIR mismatch, then we will most likely use the umbilical cord. Unfortunately, because Katie is not in remission right now, they cannot reserve the umbilical cord for her. We pray that if neither of us is KIR mismatched, that the cord is still available when we need it (not that we wouldn't want someone else to benefit from it.... kind of a strange thing to hope for I guess).

That's all for now. Thanks for all of the wonderful messages in our guestbook!

Friday, April 15, 2005 10:02 PM CDT

Just a quick update tonight. We just wanted to let everyone know that Katie had a new hickman line put in today. All went well and her chemo was started this evening. It should run for the next 5 days and then we wait. We will update again soon.

It is getting late, but we just wanted to let everyone know that Katie is doing well. Her temp went up to 37.4 this evening, but was back down to the mid 35s by bedtime. Now we pray that she doesn't develope any fevers.

Wednesday, April 13, 2005 5:48 PM CDT

I know that Bryan updated earlier today, but I just had to share an incredible story with all of you. I have still kept Bryan's earlier entry, just scroll down to read it. You often hear people complaining about today’s youth, but there sure are some amazing kids out there. On April 4th, my nephew Zack celebrated his 8th birthday. Every year, he has a birthday party and invites all his friends, this year was no exception. However, before the invitations went out this year, Zack went to his mom and dad and said, "I have so many toys, I think this year I would like to ask my friends to bring toys for Katie instead." Well, upon further discussion, Zack and his mom and dad wrote up a letter and asked all of Zack's friends to make a donation to Katie instead of bringing a gift for Zack. On Sunday when we came back from Disney, Zack came in to visit and with a big grin handed me a card and an envelope and told me what he had been up to. After reading the card with tears in my eyes, I was speechless. How can you find the words to thank such an incredible act of kindness? Zack if you are reading this, please know what an exceptionally special young man you are. Uncle Bryan and I can't even begin to express how proud we are of you.

Wednesday, April 13, 2005 8:07 AM CDT

We're back from Florida. It was the trip of a lifetime and we'll post more photos soon (there is one new photo of Katie & Belle in the photos section though). Katie continues to feel great. Her white blood count Monday was no higher than it was last week, which means the Leukemia didn't get much worse while we were away which is good.

We are still waiting for a room to free up at the hospital so Katie can start treatment (should be today). We will use her PICC line for the first couple days of chemo. On Friday, she will have a Hickman line put in her chest at South Street hospital. It has to be put in at South Street because they need to use X-Ray during the surgery because none of the "easy" vessels can be used anymore.

Wednesday, April 13, 2005 5:48 PM CDT

I know that Bryan updated earlier today, but I just had to share an incredible story with all of you. I have still kept Bryan's earlier entry, just scroll down to read it. You often hear people complaining about today’s youth, but there sure are some amazing kids out there. On April 4th, my nephew Zack celebrated his 8th birthday. Every year, he has a birthday party and invites all his friends, this year was no exception. However, before the invitations went out this year, Zack went to his mom and dad and said, "I have so many toys, I think this year I would like to ask my friends to bring toys for Katie instead." Well, upon further discussion, Zack and his mom and dad wrote up a letter and asked all of Zack's friends to make a donation to Katie instead of bringing a gift for Zack. On Sunday when we came back from Disney, Zack came in to visit and with a big grin handed me a card and an envelope and told me what he had been up to. After reading the card with tears in my eyes, I was speechless. How can you find the words to thank such an incredible act of kindness? Zack if you are reading this, please know what an exceptionally special young man you are. Uncle Bryan and I can't even begin to express how proud we are of you.

Wednesday, April 13, 2005 8:07 AM CDT

We're back from Florida. It was the trip of a lifetime and we'll post more photos soon (there is one new photo of Katie & Belle in the photos section though). Katie continues to feel great. Her white blood count Monday was no higher than it was last week, which means the Leukemia didn't get much worse while we were away which is good.

We are still waiting for a room to free up at the hospital so Katie can start treatment (should be today). We will use her PICC line for the first couple days of chemo. On Friday, she will have a Hickman line put in her chest at South Street hospital. It has to be put in at South Street because they need to use X-Ray during the surgery because none of the "easy" vessels can be used anymore.

Wednesday, April 13, 2005 8:07 AM CDT

We're back from Florida. It was the trip of a lifetime and we'll post more photos soon (there is one new photo of Katie & Belle in the photos section though). Katie continues to feel great. Her white blood count Monday was no higher than it was last week, which means the Leukemia didn't get much worse while we were away which is good.

We are still waiting for a room to free up at the hospital so Katie can start treatment (should be today). We will use her PICC line for the first couple days of chemo. On Friday, she will have a Hickman line put in her chest at South Street hospital. It has to be put in at South Street because they need to use X-Ray during the surgery because none of the "easy" vessels can be used anymore.

Wednesday, April 6, 2005 9:45 PM CDT

<<< Disney Photos in Photos Section >>>

Greetings from Florida! We are having a fantastic time. The weather is gorgeous and we are being spoiled by Make a Wish. The trip started yesterday afternoon when a stretch limo pulled up in front of our house. Our family and some of our neighbours gathered around and after some tearful goodbyes, waved excitedly as we drove away. We landed in Orlando around 10:00pm and were met by our friendly greeters from Give Kids the World. Originally, we were told that the Give Kids the World Village had no vacancy, but our greeters told us that we would only be spending the first night at the Polynesian resort at Disney World and then we would be transferred in the morning to the GKTW Village. Katie was so excited she ended up staying up until 1:30am. Around midnight, we took a little walk to admire the view from our resort of Cinderella’s Castle at the Magic Kingdom. It was across the lake from our resort and it was all lit up. We couldn’t wait to get there in the morning.

In the morning, we went to the GKTW Village for orientation. This place is amazing. It is kind of like heaven on earth for kids. Each family stays in their own private villa with full kitchen, laundry, enormous bedrooms and an enormous kids-only bathroom. The kids-only bathroom includes a huge standup shower and a giant Jacuzzi bath tub. The bathroom for us grown ups is much smaller, maybe a little bigger than the bathrooms in the rooms on 7 West :)

After our orientation, we headed over to Disney’s Magic Kingdom. It really is a magical place. Katie loved it. The staff was incredible with us. As soon as they recognized us as being a wish family, they rolled out the red carpet and whisked us into the back entrance of whatever attraction we were at. After lunch, Katie finally got her wish. She got to meet the princesses. First up she met Ariel. After meeting Ariel, we went over to “Toontown” and she got to meet Cinderella, Aurora (Sleeping Beauty) and Snow White. Before bringing Katie to meet Cinderella, we got her own Cinderella dress, glass slippers and jewelry (Thanks Grandma!). Katie was so excited that she was dressed just like Cinderella when she finally got to meet her. All of the princesses were incredibly nice and we took tons of pictures with them. Snow White even gave Katie a big kiss on the cheek and left a lipstick print.

After meeting the princesses, we headed over for story time with Belle. Belle told the story of Beauty and the Beast. Some of the kids in the audience got to come on stage and help act out the story. Guess who got picked to help out? Katie did of course. She got to play the role of Chip, one of the teacups from the story. We weren’t sure if she would be intimidated to go on stage, but she wasn’t at all. She grinned from ear to ear throughout.

Before leaving the park, we watched Cinderella’s Celebration show at Cinderella’s castle. It was awesome for Katie. All of the princesses participated and there were fireworks at the end. It was spectacular. We both had tears in our eyes because we were so happy Katie got to see this. She really loved it.

When we got back from the Magic Kingdom, we went for dinner then explored the GKTW Village a little. After Katie got a pink bunny painted on her cheek, we went for ice cream. After that, we rode the carousel about 20 times. They have a bunch of different types of animal on the carousel and Katie pretty much tried them all. She is so happy right now.

It’s been a wonderful day and we’re completely tuckered out. We might not update again until after the trip, but we wanted to check in to let everyone know what a great time we’re having. Bye for now!

PS - In case you are wondering, Bryan did not come with us on the trip. We decided this at the last minute after much debate. We needed to focus on Katie during this trip.

Monday, April 4, 2005 10:31 PM CDT

Today was a big day. Katie had her bone marrow test. The test revealed 80 percent Leukemic blasts in her bone marrow. This means the disease is back in full force. It is a little worse than the last time she relapsed when there was 75 percent Leukemic blasts. We met with Dr. Cairney and discussed the next steps. The plan is to start an intensive round of chemo next Monday. The exact protocol has not been determined yet. If she can achieve 3rd remission, we will head immediately to transplant afterwards (about 6 weeks from now)

The reason treatment isn't starting until next Monday is that the doctor is allowing us to take Katie on her wish trip to Disney. We leave tomorrow. We are thrilled that we are going to be able to do this for Katie. The people at Make a Wish are saviours. We cannot believe how quickly they were able to get everything booked for us today. One phone call to explain the situation and within a few hours they were phoning back to say that a limousine would pick us up Tuesday afternoon to whisk us away. Katie is going to love it.

With all this heavy news, we haven't said much about how Katie is feeling right now. She actually feels fantastic. You wouldn't have any clue she was sick if it wasn't for the bald head. She is eating great and doing all the fun things she likes to do. We haven't told her about her trip yet, because if she gets a fever between now and then it would have to be cancelled. We don't want to have to break her heart. I think we'll tell her as we're boarding the plane.

That's all for tonight. Keep an eye on the web site this week, we'll try and post some pictures from Florida.

Friday, April 1, 2005 9:37 PM CST

Bad news to report tonight. Sorry that some of our family and friends will have to receive the news this way. Katie had her blood counts checked today and her platelets were lower than expected (only 60, expected to be above 100 at this point). When Joanne phoned to tell me this, she was concerned and I tried to reassure her that it was just slow count recovery. Unfortunately, Dr. Jardine called us a few hours later (Dr. Cairney is away right now) to tell us that there was a concern with Katie's blood work. He said that not only were her platelets lower than expected, but they had found Leukemic cells in her peripheral blood. In his oppinion, she has relapsed again. We won't know for sure until she has a bone marrow test done this Monday. It seems that the test is really just a formality, because this is exactly what happened the first time she relapsed (low platelets, Leukemia in the peripheral blood). We have no idea where we are going from here. We will try to post again once there is more news, but forgive us if we don't get to it because we will be dealing with a lot for the next little while.

Monday, March 28, 2005 12:08 AM CST

Happy Easter to all. Just a quick update to let everyone know what we've been up to. This week has been a pretty good week. Not too much new. Katie has been feeling great this week. When we went for blood work last Monday, her counts were still quite low. Her neutrophils were still only at 0.1 which means she must still stay away from crowds, so no shopping for Katie. This is unfortunate, especially because shopping seems to be one of Katie's favourite pass times right now. Good thing she has a great imagination. She love to pretend she is shopping for clothes, she even goes and picks out the dresses (pretend ones) then goes into the dressing room to try them on. The other night we were at my Mom's, after dinner, Katie and I went downstairs to play shopping. After Katie picked out her "dresses", she went into the "change room" (actually the bathroom). I was told that I had to go out and wait for her to come out and show me her dress. I went out and sat in the chair with my back to the door. After what seemed like a really long time, out came Katie, "Hoe do I look" I turned around to see and there was Katie BUCK NAKED.

I hope you all had a nice Easter, I know we did. It was so nice to wake up Sunday morning and actually have a real Easter egg hunt. Both Katie and Bryan enjoyed the hunt. We had a great day visiting relatives and actually had a normal holiday. Enjoy the Easter pictures.

Well we will update again soon. Until then, God Bless.

Sunday, March 20, 2005 10:26 PM CST

Since last Thursday, Katie has been feeling much better. She's back to wanting to play pretend all the time, which means she is feeling herself again. Her 6 weeks of penicilin ended today, so she doesn't have to lug the little IV pump in a backpack around anymore. She was really excited when it came off today. As soon as it was disconnected she said "yeah! I can do summersaults now" and proceeded to do two summersaults immediately.

We had a great visit with Dr. Doyle at SickKids last Wednesday. He was very patient with us and answered all of our questions. There was good news that they have identified another 4/6 umbilical cord with a much greater quantity than the previous one. This means it would have a much better chance of engrafting than the first one they told us about (about an 80hance of engrafting). This cord is probably our best option. The haplo transplant (i.e. transplanting from Joanne or I) is still a possibility though. We are waiting for the results of KIR (Killer Immunoglobulin Receptors) typing on Joanne and I. If one of us is a KIR mismatch to Katie, apparently it would make us an ideal candidate to be a donor for a haplo transplant. Recent studies on haplo transplants with a KIR mismatched donor seem to indicate less severe GVHD and a much greater chance of disease free survival (i.e. beating the AML). The risk of the AML relapsing if there is a KIR mismatch could be as low as 10If you contrast this with a typical transplant (i.e. suppose there had been a 6/6 donor available), the risk of relapse would have been as high as 50So, a KIR mismatch may be quite promising. We should have the test results later this week.

You may be wondering what is happening with the baby we are trying to have that would be a match for Katie. It's still an option, but at this point we are leaning towards doing a transplant sooner. Dr. Doyle strongly encouraged us to take advantage of Katie's remission and to do a transplant while she is in a stable condition. He reminded us that 2nd remissions are usually shorter than 1st remissions and Katie relapsed very quickly the first time. There have already been delays in getting the IVF process started and we hit another roadblock this week that could set us back a few more weeks or even a few months (the details are a tad personal, so we'll just leave it that we've hit a roadblock). Needless to say, the more delays that creep up, the more we feel we need to take a more immediate option.

We should be speaking with a doctor at St. Jude's hospital in Memphis, TN this week about the prospect of doing a haplo transplant there. They have a lot of experience with haplos at St. Jude, so we feel we owe it to Katie to investigate that option. It will be very helpful to hear their oppinion on the cord vs. haplo vs. IVF decision.

While we were taking a tour of the BMT wing at SickKids, we got to see Julia and her parents Mike and Charlene. Julia is in strict isolation so we could not go into her room but Charlene came out to say hello for a bit. Julia seemed to be feeling not too bad when we saw her. She was out of bed and sitting with her dad.

That's all for tonight. We'll try and post again later this week.

Monday, March 14, 2005 10:45 PM CST

We're home right now and if all goes well we will be here for a few weeks. Katie has been having fun, but she really isn't feeling too well. I'll get into that in a little bit but I'll start by talking about some of the things she has been doing.

Last Thursday, we had "pizza night" (as we always do on Thursdays) but we took Katie somewhere special for it. We went to the new Chuck E. Cheese that just opened in Windsor. She had a blast and so did Bryan. We'll get some pictures up soon.

Saturday, Zack & Brayden (Katie & Bryan's cousins) came for a visit. It was the first time we had seem them in a while because kids weren't allowed to come visit when we are at Hotel Dieu for so many weeks and our stay at Hotel Dieu was sandwiched between weeks of treatment in London. The kids had a great time running around, eating popsicles together, playing video games and board games... all the typical kid things.

We had good news today that Katie has been approved for her Wish Trip. We will be taking her to Disney World some time in the next couple of months. Katie is anxious to "see where the princesses live" and to "see what they are wearing". We are thrilled to be able to take her on this trip and we know that it will be very special for her.

On the medical front...

Katie really hasn't felt very well since starting the last round of chemo. It seems like the more chemo she gets, the greater the toll it has on her. It's kind of like a heavyweight fight. The first few rounds she would bounce right back up, but now it sort of takes her until the 8 count to get back up. She has been quite lethargic and spends quite a bit of time laying around on the couch. This is not typical for her at all. Also, she has been vomiting a fair bit and her temperature has been fluttering. Last Friday, her home care nurse suggested we call London because she thought she looked dehydrated. London told us to have a pediatrician see her. I won't go into the details, but it was a crappy night and we ended up in the ER at Hotel Dieu until almost midnight. Thankfully, since her temperature hadn't quite hit the fever point and her neutrophil count was still 0.9 the doctor decided to let us take her home.

Hopefully she will start to feel better soon but it's looking more and more like another hospital stay is in our near future. Her blood counts have basicaly bottomed out (WBC = 0.2, Neutrophils = 0.0, Platelets = 47, Hemoglobin = 90). This is expected of course, because her counts typically bottom out 7-10 days after starting chemo then recover about 3-4 weeks later. However, if she has a bit of a bug, which she seems to, it will be pretty hard to shake without any neutrophils.

Lastly, we are heading to SickKids hospital in Toronto on Wednesday to meet with Dr. Doyle, the head of the transplant team. We are going to discuss our transplant options with him in detail. We are anxious to meet with him and see the BMT facilities.

PS - For anyone that is interested, our good friend Julia (who is actually a few months younger than Bryan) is going through her transplant right now at SickKids. You can follow her progress on her web site. I think you will find it eye opening what a drastic procedure it is and will get a sense of why it is so difficult for parents to choose this for their child.

Tuesday, March 8, 2005 9:00 PM EST

This is just a quick update to let you know what we have been up to the past week. If you have not read the last update dated March 2, please scroll down and read it, it is a very important update and we don't want anyone to miss it. If you have read the last update, then I'm sure you are all wondering how the surgery went. Well, unfortunately, it didn't have the outcome we had hoped. Let me start by explaining how it works. There are 2 veins on either side of the neck that they can use to insert a Hickman line,(the tubes they use to administer Katie's chemo) one is a superficial vein and one is a little deeper. Katie has had two Hickman lines inserted. The first one was when she was first diagnosed and this one was inserted to the superficial vein on her left side. The second line was inserted when she relapsed in October, this one was put into the deeper vein on her right side. At the time the second one was inserted, we were told that the superficial vein on the right side would not take the catheter. So we figured this time they would have to insert the line into the deeper vein on the left side. Well... when they tried to insert the new Hickman line the line could not be inserted far enough as the vein was occluded. So this meant that Katie could not start chemo. We were told that in order to put a new Hickman line in, Katie would have to go to Toronto to have one put in using X-ray technology because it would have to be put under her collar bone. Unfortunately, Toronto did not have any availability within a reasonable amount of time. Remember, it is not wise to hold off on giving her chemo for fear that she may relapse. We were sent back to Windsor where on Friday they inserted a PICC line into her arm. Thanks to Nurse Barb for pushing to get this done, you can only imagine how relieved we were to hear that Katie would be able to start chemo again. Barb, we are forever in your debt.

So on Saturday morning we headed back to London to start chemo. We were on the 7th floor Saturday and Sunday as the clinic is closed on the weekend. But, Katie was so happy to see her nurse friends up there, and I think they were just as thrilled to have her back for a visit. The rest of the week, we have been in clinic and all has been going well. We should be done chemo tomorrw around 3pm and we should be able to head back to Windsor. We hope that the next 3 to 4 week will be fever free and we will be able to enjoy some long awaited time at home.

Thanks for keeping us in you prayers.

Wednesday, March 2, 2005 9:17 PM CST

We had an off day today while we wait for Katie's surgery tomorrow to replace her central line. We felt a substantial update was in order and the timing happens to be good, because there have been some significant new developments. We'll break the update into two again, a section about Katie and a section about her medical news. Don't skip the medical section though, because that is where our big news is. (By the way, this update is a joint effort between Bryan and Joanne, we each wrote parts of it).

What has Katie been up to?

Katie continues to feel fantastic. She has been full of energy lately and is bouncing all over the place. She has had a chance to catch up with many of her friends at the hospital this week. On Monday, we were happy to see a very special old friend, Katelyn Spithoff from Thunder Bay, one of Katie's "AML sisters". Katelyn finished her treatment for AML the same week that Katie was originally diagnosed. She is coming up on 2 years in remission and looks great. Check out her web site if you have a minute, there is a picture of the two Katelyn's on the main page.

We really wanted to do something special with Katie today since she starts chemo tomorrow and lately, chemo has led to long stays in the hospital. We decided to use the off day from the hospital as an opportunity to go to the Children's Museum here in London. It is a really fun place for kids. They have exhibits for all ages. Katie said that her favourite part was the miniature McDonald's they have setup (Check out the photos section). After a few hours at the Children's Museum, we took the kids to a real McDonald's for lunch. After that, even though it was an "off day", we still had to make a quick pit stop at the hospital to get her antibiotic pump adjusted (see the medical section). Afterwards, we had to drive to Chatham to bring Bryan to Grandma and Grandpa. They live in Windsor too so Chatham was a nice central place to meet. Bryan is going back to Windsor with them for a few days while Katie has her surgery to replace her line and gets settled into her chemo. After a very brief visit with Grandma and Grandpa and a sad goodbye to Bryan, we headed back to London and stopped for dinner at Jack Astor's. Katie had lots of fun colouring on the paper tablecloths. Her eyes lit up when we told her it was OK to colour on the tables at this restaurant. After dinner, Katie made me (Bryan) realize just how much she stops to smell the roses. It was very cold outside and the snow was blowing in our faces. Joanne and I focused on getting to the car quickly and we bee lined for it. I was carrying Katie and as we were dashing for the car I could hear her chattering away, oblivious to the nasty weather. She was saying to me "Dad, look at the sky. The clouds are breaking up. I can see a cloud shaped like a “dolphint” (I think she meant dolphin). Look dad!". It's times like this that you realize how important it is to slow things down and not let life pass you by.

On the medical front...

Before all of the big news (it's coming, just be patient), we realized we didn't mention that Katie is on IV antibiotics even while she is away from the hospital right now. She has to wear a backpack that contains a battery operated IV pump. Because her central line is broken, she has an IV site in her arm right now. Home care comes once a day to change the IV bag and to make sure the IV site looks OK. We are amazed how well she has adapted to lugging this thing around all the time. We weighed it today and it is about 8 pounds, which is pretty heavy for a 3 year old to haul around all day. Believe us, it hasn't slowed her down one bit.

OK, time for the heavy stuff. What we have for you today is a mixture of both encouraging and discouraging news. We are currently faced with some major life and death type decisions that no parent should ever have to be faced with. First off, there is a lot of information to absorb and really, there are more questions than answers. We will do our best to explain it all clearly. We apologize that many of you will have to hear this news through a web site.

It seems the best way to explain everything is to just tell the story of what has been going on the past few months. Parts of the story have already been described on this web site, but some of it we have kept quite private about. It is nice to be able to come out with everything now and we hope that some of this information will actually be helpful to other families faced with Leukemia and or a bone marrow transplant.

As you may know, Katie's search for a bone marrow donor has not gone well at all. The initial search of the registry turned up no matches whatsoever. We were told that this was unexpected and that there was no explanation for it. We were left with hoping that someone new would join the registry that was a match for Katie.

While we waited, we started to investigate other options. One of our good friends Mike Brennan put us on the trail of something very special that just might lead to a bone marrow donor for Katie. He asked us one day if we would consider having another baby in hopes that it would be a match for Katie. We explained that any new child would only have a 25hance of being a match. Given this somewhat poor chance, we felt that bringing a new child into the world while dealing with such heavy things was not the best idea. He then went on to say that he thought he heard of a technology where they could help you conceive a child that would be a match. Our doctors have never mentioned anything like this to us, so we started to do a little research on the Internet. Some woman named Emma from the UK read a post we made to the Leukemia & Lymphoma message board and pointed us to a clinic in Chicago called Reproductive Genetics Institute. This clinic can offer in vitro fertilization combined with preimplantation genetic diagnosis to select embryos that would be an HLA match for Katie. To be clear, we would be able to have a child that is guaranteed to be able to be a bone marrow donor for Katie.

After some investigating and a conversation with our doctor about it, it was decided that this was our best option. Our doctor was quick to point out that the IVF process could take up to a year's time and that there is no guarantee that Katie has that kind of time available. Understanding this, we decided to proceed anyway. We had a few consultations with the clinic in Chicago and started the IVF process, which begins with a bunch of blood tests, ultrasounds etc.

About 2 weeks ago though, we got word from Chicago that they had done DNA testing on both kids (Bryan and Katie) and had determined that one of them is what is called a "crossover". We will do our best to explain what a crossover is. Each parent has two sets of genes. Normally, you give an entire set of genes to your child. Since the mother has 2 sets and gives 1, and the father has 2 sets and gives 1, there are 4 possible combinations of genes that a child can have. This is why a sibling has a 25hance of being a match with another sibling. When a crossover occurs, one of the parents did not give a complete set to the child but instead gave a mix of their two sets. We were being told that this happened to one of our children and that if it was Katie, then they could not proceed because the odds of repeating the combination were next to nil. You can imagine how devastated we were to hear this news because we felt that it was Katie’s only realistic hope. Fortunately, we received the wonderful news today that Bryan is the one with the crossover element and that Katie does in fact have a “typical” combination of genes and that we can safely proceed.

Sounds great right? Well, it is, but as always, the waters are quite muddy. About a month ago, we asked our doctor to get in touch with the transplant team to let them know that we were pursuing this option and to find out if there were any potential matches on the horizon. We didn’t want to embark on something like this if a transplant could be done much sooner. She contacted them and called us back the next day with some exciting news. They had two “leads” for us. They had a candidate that was a 5 out of 6 match (which is usable for transplant) as well as a 4 out of 6 match umbilical cord (you can transplant with stem cells from cord blood). They said it would take a few weeks to screen these two leads. We decided to keep quiet about these leads and to continue the IVF process while we waited for the screening to be completed. If they didn’t pan out we didn’t want to have delayed the IVF process since time is not on our side with that option.

Fast forward to yesterday. Joanne was at the hospital with Katie and I was driving around with Bryan while he was taking a nap. Joanne phoned me on the cell phone to say that Dr. Cairney wanted to talk to us. I had a hunch it was about the bone marrow search and hurried back to the hospital. We met with Dr. Cairney and she explained that Dr. Doyle from SickKids in Toronoto had contacted her. He is the head of the bone marrow transplant program. He had some disturbing news for us. Basicallly, the 5 out of 6 potential match has been ruled out (we aren’t sure why). The 4 out of 6 umbilical cord has been determined to be usable for a transplant, but unfortunately, the quantity of cord blood available is the bare minimum they would consider doing a transplant with. Apparently, if they use this small quantity, there is a high chance that the transplant would fail to engraft. If this happened, Katie would not make it out of Toronto.

Dr. Doyle’s advice at this point is as follows. He says that it is unlikely that a bone marrow donor will be found for Katie. He knows that we are pursuing the IVF option but does not feel this is a good option for us. He feels that the time required to complete the IVF process, the pregnancy, the birth etc. is too long to keep Katie in remission for. His advice is that we pursue a haplo transplant using marrow from either Joanne or myself. A “haplo” transplant means a transplant using marrow that is only partly matched to the recipient. In the case of a parent donating to a child, the parent is a half match (i.e. a 3 out of 6 match). The problem with a haplo transplant is that it is extremely risky. There is a low survival rate and there are major risks of Graft vs. Host Disease (GVHD). As many of you know, our sweet friend Hannah recently lost her life to GVHD as a result of her transplant and her donor was a perfect 6 out of 6 match, which should have reduced her risk of GVHD. We won’t get into the exact statistics, but suffice it to say that the statistics we were given regarding both survival and GVHD for haplo transplant recipients are quite frightening.

To summarize, here are the choices we are faced with:
A) Have a child using IVF that could be a donor for Katie. This is the best transplant option for Katie but has a low chance of success because of the amount of time required for the child to be born.

B) Proceed with the umbilical cord transplant with the "bad cord" as they describe it. This is a good transplant option but has a high risk of failure because of the small quantity of cord blood available.

C) Proceed with a haplo transplant. This is a risky transplant option with great risk of failure. There is also risk of death due to GVHD or even long term suffering due to GVHD. As mentioned, this is the option the transplant team feels is Katie’s best shot.

As you might imagine, we are looking into getting a second opinion from another transplant center. We do not question the analysis we have been given but we will need other perspectives to make our choice with confidence. Please pray for us as we weigh these frightening choices. Sorry for such a long essay. Given the complexity of all of this, there was no short way to say it all.

Wednesday, March 2, 2005 9:17 PM CST

We had an off day today while we wait for Katie's surgery tomorrow to replace her central line. We felt a substantial update was in order and the timing happens to be good, because there have been some significant new developments. We'll break the update into two again, a section about Katie and a section about her medical news. Don't skip the medical section though, because that is where our big news is. (By the way, this update is a joint effort between Bryan and Joanne, we each wrote parts of it).

What has Katie been up to?

Katie continues to feel fantastic. She has been full of energy lately and is bouncing all over the place. She has had a chance to catch up with many of her friends at the hospital this week. On Monday, we were happy to see a very special old friend, Katelyn Spithoff from Thunder Bay, one of Katie's "AML sisters". Katelyn finished her treatment for AML the same week that Katie was originally diagnosed. She is coming up on 2 years in remission and looks great. Check out her web site if you have a minute, there is a picture of the two Katelyn's on the main page.

We really wanted to do something special with Katie today since she starts chemo tomorrow and lately, chemo has led to long stays in the hospital. We decided to use the off day from the hospital as an opportunity to go to the Children's Museum here in London. It is a really fun place for kids. They have exhibits for all ages. Katie said that her favourite part was the miniature McDonald's they have setup (Check out the photos section). After a few hours at the Children's Museum, we took the kids to a real McDonald's for lunch. After that, even though it was an "off day", we still had to make a quick pit stop at the hospital to get her antibiotic pump adjusted (see the medical section). Afterwards, we had to drive to Chatham to bring Bryan to Grandma and Grandpa. They live in Windsor too so Chatham was a nice central place to meet. Bryan is going back to Windsor with them for a few days while Katie has her surgery to replace her line and gets settled into her chemo. After a very brief visit with Grandma and Grandpa and a sad goodbye to Bryan, we headed back to London and stopped for dinner at Jack Astor's. Katie had lots of fun colouring on the paper tablecloths. Her eyes lit up when we told her it was OK to colour on the tables at this restaurant. After dinner, Katie made me (Bryan) realize just how much she stops to smell the roses. It was very cold outside and the snow was blowing in our faces. Joanne and I focused on getting to the car quickly and we bee lined for it. I was carrying Katie and as we were dashing for the car I could hear her chattering away, oblivious to the nasty weather. She was saying to me "Dad, look at the sky. The clouds are breaking up. I can see a cloud shaped like a “dolphint” (I think she meant dolphin). Look dad!". It's times like this that you realize how important it is to slow things down and not let life pass you by.

On the medical front...

Before all of the big news (it's coming, just be patient), we realized we didn't mention that Katie is on IV antibiotics even while she is away from the hospital right now. She has to wear a backpack that contains a battery operated IV pump. Because her central line is broken, she has an IV site in her arm right now. Home care comes once a day to change the IV bag and to make sure the IV site looks OK. We are amazed how well she has adapted to lugging this thing around all the time. We weighed it today and it is about 8 pounds, which is pretty heavy for a 3 year old to haul around all day. Believe us, it hasn't slowed her down one bit.

OK, time for the heavy stuff. What we have for you today is a mixture of both encouraging and discouraging news. We are currently faced with some major life and death type decisions that no parent should ever have to be faced with. First off, there is a lot of information to absorb and really, there are more questions than answers. We will do our best to explain it all clearly. We apologize that many of you will have to hear this news through a web site.

It seems the best way to explain everything is to just tell the story of what has been going on the past few months. Parts of the story have already been described on this web site, but some of it we have kept quite private about. It is nice to be able to come out with everything now and we hope that some of this information will actually be helpful to other families faced with Leukemia and or a bone marrow transplant.

As you may know, Katie's search for a bone marrow donor has not gone well at all. The initial search of the registry turned up no matches whatsoever. We were told that this was unexpected and that there was no explanation for it. We were left with hoping that someone new would join the registry that was a match for Katie.

While we waited, we started to investigate other options. One of our good friends Mike Brennan put us on the trail of something very special that just might lead to a bone marrow donor for Katie. He asked us one day if we would consider having another baby in hopes that it would be a match for Katie. We explained that any new child would only have a 25hance of being a match. Given this somewhat poor chance, we felt that bringing a new child into the world while dealing with such heavy things was not the best idea. He then went on to say that he thought he heard of a technology where they could help you conceive a child that would be a match. Our doctors have never mentioned anything like this to us, so we started to do a little research on the Internet. Some woman named Emma from the UK read a post we made to the Leukemia & Lymphoma message board and pointed us to a clinic in Chicago called Reproductive Genetics Institute. This clinic can offer in vitro fertilization combined with preimplantation genetic diagnosis to select embryos that would be an HLA match for Katie. To be clear, we would be able to have a child that is guaranteed to be able to be a bone marrow donor for Katie.

After some investigating and a conversation with our doctor about it, it was decided that this was our best option. Our doctor was quick to point out that the IVF process could take up to a year's time and that there is no guarantee that Katie has that kind of time available. Understanding this, we decided to proceed anyway. We had a few consultations with the clinic in Chicago and started the IVF process, which begins with a bunch of blood tests, ultrasounds etc.

About 2 weeks ago though, we got word from Chicago that they had done DNA testing on both kids (Bryan and Katie) and had determined that one of them is what is called a "crossover". We will do our best to explain what a crossover is. Each parent has two sets of genes. Normally, you give an entire set of genes to your child. Since the mother has 2 sets and gives 1, and the father has 2 sets and gives 1, there are 4 possible combinations of genes that a child can have. This is why a sibling has a 25hance of being a match with another sibling. When a crossover occurs, one of the parents did not give a complete set to the child but instead gave a mix of their two sets. We were being told that this happened to one of our children and that if it was Katie, then they could not proceed because the odds of repeating the combination were next to nil. You can imagine how devastated we were to hear this news because we felt that it was Katie’s only realistic hope. Fortunately, we received the wonderful news today that Bryan is the one with the crossover element and that Katie does in fact have a “typical” combination of genes and that we can safely proceed.

Sounds great right? Well, it is, but as always, the waters are quite muddy. About a month ago, we asked our doctor to get in touch with the transplant team to let them know that we were pursuing this option and to find out if there were any potential matches on the horizon. We didn’t want to embark on something like this if a transplant could be done much sooner. She contacted them and called us back the next day with some exciting news. They had two “leads” for us. They had a candidate that was a 5 out of 6 match (which is usable for transplant) as well as a 4 out of 6 match umbilical cord (you can transplant with stem cells from cord blood). They said it would take a few weeks to screen these two leads. We decided to keep quiet about these leads and to continue the IVF process while we waited for the screening to be completed. If they didn’t pan out we didn’t want to have delayed the IVF process since time is not on our side with that option.

Fast forward to yesterday. Joanne was at the hospital with Katie and I was driving around with Bryan while he was taking a nap. Joanne phoned me on the cell phone to say that Dr. Cairney wanted to talk to us. I had a hunch it was about the bone marrow search and hurried back to the hospital. We met with Dr. Cairney and she explained that Dr. Doyle from SickKids in Toronoto had contacted her. He is the head of the bone marrow transplant program. He had some disturbing news for us. Basicallly, the 5 out of 6 potential match has been ruled out (we aren’t sure why). The 4 out of 6 umbilical cord has been determined to be usable for a transplant, but unfortunately, the quantity of cord blood available is the bare minimum they would consider doing a transplant with. Apparently, if they use this small quantity, there is a high chance that the transplant would fail to engraft. If this happened, Katie would not make it out of Toronto.

Dr. Doyle’s advice at this point is as follows. He says that it is unlikely that a bone marrow donor will be found for Katie. He knows that we are pursuing the IVF option but does not feel this is a good option for us. He feels that the time required to complete the IVF process, the pregnancy, the birth etc. is too long to keep Katie in remission for. His advice is that we pursue a haplo transplant using marrow from either Joanne or myself. A “haplo” transplant means a transplant using marrow that is only partly matched to the recipient. In the case of a parent donating to a child, the parent is a half match (i.e. a 3 out of 6 match). The problem with a haplo transplant is that it is extremely risky. There is a low survival rate and there are major risks of Graft vs. Host Disease (GVHD). As many of you know, our sweet friend Hannah recently lost her life to GVHD as a result of her transplant and her donor was a perfect 6 out of 6 match, which should have reduced her risk of GVHD. We won’t get into the exact statistics, but suffice it to say that the statistics we were given regarding both survival and GVHD for haplo transplant recipients are quite frightening.

To summarize, here are the choices we are faced with:
A) Have a child using IVF that could be a donor for Katie. This is the best transplant option for Katie but has a low chance of success because of the amount of time required for the child to be born.

B) Proceed with the umbilical cord transplant with the "bad cord" as they describe it. This is a good transplant option but has a high risk of failure because of the small quantity of cord blood available.

C) Proceed with a haplo transplant. This is a risky transplant option with great risk of failure. There is also risk of death due to GVHD or even long term suffering due to GVHD. As mentioned, this is the option the transplant team feels is Katie’s best shot.

As you might imagine, we are looking into getting a second opinion from another transplant center. We do not question the analysis we have been given but we will need other perspectives to make our choice with confidence. Please pray for us as we weigh these frightening choices. Sorry for such a long essay. Given the complexity of all of this, there was no short way to say it all.

Tuesday, March 1, 2005 10:36 PM CST

Another short update tonight. Things are kind of hectic right now. Hopefully a better update is coming soon. The second repair on Katie's line also failed (leaked again) so it will be replaced on Thursday morning. There is no point in returning to Windsor for one day, so we are going to stay in London. We hope to take Katie to the Children's Discovery Museum tomorrow afternoon as a way to take advantage of the off day away from the hospital.

Monday, February 28, 2005 10:40 PM CST

Ultra-quick update tonight to let you know how today went. We are back in London, but Katie does not have to stay overnight in the hospital so we are at Aunt Angie and Uncle Jake's. The repair job on Katie's line did not work. It leaked when they tried to use it. They repaired it again but we will have to wait until tomorrow to see if it works now. Because of this, chemo was delayed until tomorrow (assuming the line works). She still had her LP (chemo in her spinal fluid) which went off without a hitch. That's all for tonight.

Friday, February 25, 2005 8:11 PM CST

If you haven't read yesterdays entry, you may want to scroll down and read it first before reading on.

Maybe Bryan should change professions and become a fortuneteller. His prediction of good things starting today was right on. First, Katie's neutrophils were up to 1.4 today, which means they are high enough that we should be able to come home tomorrow as long as home care can be arranged.

Second, we did go to London today, but only for the day. We found out this morning that London was going to try to repair her line. We went. We conquered. Well at least we hope we conquered. They have these nifty little repair kits that they use to splice the line back together. They were able to repair her line, but we won't find out if it still works until Monday. Katie was very excited to see all of her friends in London, and I think they were pretty excited to see her and how good she looks.

That brings me to my final good point; we are heading back to London on Monday for treatment. And again it will be outpatient, so we will be sleeping at one of our homes away from home, Aunt Angie and Uncle Jake's.

Funny Katie Story: As some of you know Katie has been eating quite well, she has gained 2 pounds since going to the hospital in Windsor on February 3rd. This is probably due to the fact that she has two of every meal, 2 breakfasts, 2 lunches, 2 diners not to mention snacks in between meals. Well she has heard us talk about this a few times. So tonight when we got back to the hospital, I gave Katie a piece of pizza for her diner. When Bryan came back up, she asked "Dad, did you bring my second supper".

We'll keep you posted

Thursday, February 24, 2005 10:04 PM CST

Katie's central line broke tonight. It snapped in half just above the Y. We're quite upset about it because it means Katie will be getting poked every day until a new one can be put in. Also, she will need to undergo more surgery to get it replaced. I can't believe it broke. Joanne had left the hospital to pick up Bryan at her parents and I was with Katie. When her dinner tray came, I went to lift her into her bed and it must have got snagged under her foot or on the rail of the bed. It snapped immediately. I can't help but think that it was already weakened because there was barely any force. What probably triggered it was that her safety pin came undone. We always pin her tubes to her shirt with a safety pin. This helps to anchor it so that any tugging tugs on the shirt not on the delicate part of the line. How the pin came undone we will never know. It seems that when it rains, it pours.

When the doctor in Windsor learned of Katie's line breaking he phoned London right away. The doctor in London said that they wanted to have Katie come to London right away. This was around 7:00pm and they wanted her there by 10:00pm when her next dose of antibiotics was due. We quickly started to pack. About 7:15pm though, our nurse came by to say that London phoned back and they didn't have a bed available. They are going to try and get us up there tomorrow. We aren't counting on it though. Something tells us we aren't going anywhere before Monday or so.

On the positive front, Katie's neutrophil count has started to trend upwards again. Yesterday they were at 0.6 and today they were at 0.8. This is great news. Hopefully they will stay up this time because this up and down business has been trying our patience. The doctors decided to hold off on giving her her medicine called Septra this weekend, which she normally takes every Friday, Saturday and Sunday. The reason they are holding it off for this weekend is that Spetra causes your bone marrow to get lazy and suppresses blood count recovery a bit. Hopefully by Monday her counts will be back to normal.

A couple short Katie stories to finish off this update... First, we thought it was funny that Katie tried to cheer us up after her line broke. Joanne and I were talking to each other about how upset we were because of the uncomfortable things Katie will have to go through now. Katie waved her hands at us and said "Don't worry mom and dad, it's OK. We'll just pack up our bags and go to the London Hospital. It's fine.". She really knows how to tug at your heart strings. Second, Katie had a really cool visit today from Miss Teen Canada, Amanda Klyn. She is from La Salle and Joanne used to babysit her when she was a little girl. She let Katie try on her crown and even brought her her own little crown. We have some nice pictures of them together which we will post soon.

That's all for tonight. Today is a great example of how insane our lives have become. It's time for some good things to start happening. I think they're going to start happening tomorrow.

Thursday, February 24, 2005 10:04 PM CST

Katie's central line broke tonight. It snapped in half just above the Y. We're quite upset about it because it means Katie will be getting poked every day until a new one can be put in. Also, she will need to undergo more surgery to get it replaced. I can't believe it broke. Joanne had left the hospital to pick up Bryan at her parents and I was with Katie. When her dinner tray came, I went to lift her into her bed and it must have got snagged under her foot or on the rail of the bed. It snapped immediately. I can't help but think that it was already weakened because there was barely any force. What probably triggered it was that her safety pin came undone. We always pin her tubes to her shirt with a safety pin. This helps to anchor it so that any tugging tugs on the shirt not on the delicate part of the line. How the pin came undone we will never know. It seems that when it rains, it pours.

When the doctor in Windsor learned of Katie's line breaking he phoned London right away. The doctor in London said that they wanted to have Katie come to London right away. This was around 7:00pm and they wanted her there by 10:00pm when her next dose of antibiotics was due. We quickly started to pack. About 7:15pm though, our nurse came by to say that London phoned back and they didn't have a bed available. They are going to try and get us up there tomorrow. We aren't counting on it though. Something tells us we aren't going anywhere before Monday or so.

On the positive front, Katie's neutrophil count has started to trend upwards again. Yesterday they were at 0.6 and today they were at 0.8. This is great news. Hopefully they will stay up this time because this up and down business has been trying our patience. The doctors decided to hold off on giving her her medicine called Septra this weekend, which she normally takes every Friday, Saturday and Sunday. The reason they are holding it off for this weekend is that Spetra causes your bone marrow to get lazy and suppresses blood count recovery a bit. Hopefully by Monday her counts will be back to normal.

A couple short Katie stories to finish off this update... First, we thought it was funny that Katie tried to cheer us up after her line broke. Joanne and I were talking to each other about how upset we were because of the uncomfortable things Katie will have to go through now. Katie waved her hands at us and said "Don't worry mom and dad, it's OK. We'll just pack up our bags and go to the London Hospital. It's fine.". She really knows how to tug at your heart strings. Second, Katie had a really cool visit today from Miss Teen Canada, Amanda Klyn. She is from La Salle and Joanne used to babysit her when she was a little girl. She let Katie try on her crown and even brought her her own little crown. We have some nice pictures of them together which we will post soon.

That's all for tonight. Today is a great example of how insane our lives have become. It's time for some good things to start happening. I think they're going to start happening tomorrow.

Tuesday, February 22, 2005 9:04 PM CST

Katie is still in the hospital. When we left for Hotel Dieu 3 weeks ago, we expected a 48-72 hour stay. Funny how things never seem to work out as planned. I'm going to try a new format for tonight's post. I feel the most important part of these posts should be how Katie is feeling and the things she has been up to. Sometimes, that seems to get lost amidst all of the medical talk.

What has Katie been up to?

Katie has been feeling fantastic lately. Really, it's the best she has felt since last fall. She seems to be coping with her hospital stay pretty well. There are definitely signs of cabin fever, but she does really well all things considered. Her latest obsession is playing pretend. It' the first thing she wants to do when she gets up in the morning and she is happy to just keep playing pretend the entire day. She pretends to go shopping, she pretends to be at school, she pretends to go to the zoo and he pretends to be a pirate. Her imagination is incredible. I should mention that pretend isn't a game she likes to play alone. If Katie plays pretend all day long, it means Mom or Dad plays pretend all day long too, depending on who happens to be with her.

Today, we had a special visit from Aunt Karen, who just lost her husband Uncle Mike. She brought Cheryl, Aunt Kay and Aunt Karol along with her. Aunt Kay brought Katie some nice new puzzles and a new Barbie doll. Katie had loads of fun playing with these new toys with Cheryl. Katie knew they were coming and made them each a butterfly earlier in the day. She was very proud to give the beautiful butterflies to them. We want to make special mention of the fact that Uncle Mike asked that any donations made at his funeral be made to Katelyn. We are extremely humbled by this and are truly grateful. Thank you to all of those who made a donation.

On the medical front...

We're impressed with how much Katie has been eating lately. Since being admitted to Hotel Dieu, she has put on over 2 pounds. She tends to double up each meal. Not only does she eat what is on her tray, but she has a bit of whatever we're having too. Considering the trauma her digestive system underwent at the first of the year (Typhlitis) and how frail she had become, it's been wonderful to see her eating like this.

As we mentioned before, Katie is stuck in the hospital because of some bacteria that was found in her central line when she was first admitted to Hotel Dieu. For most infections, 10 -14 days of antibiotics is all that is required. However, the particular strain of bacteria paired with Katie's heart murmur caused the infectious disease doctor recommend that she be on antibiotics for 6 weeks and that she not be allowed out of the hospital until her neutrophils reached 1.0. Well, they still aren't 1.0. To tell you the truth, we are quite concerned with the way her counts have been recovering. Her neutrophils have been up and down. They climbed as high as 0.9 on Saturday, but today they are back down to 0.5. This type of recovery has never happened to Katie before. Typically, she has 0 neutrophils for a period and once she gets to 0.1 it is a steady climb upwards. This up and down pattern is new territory for us. On top of this, her platelets and hemoglobin have started to head south again. Nothing drastic, but we would feel better if they had continued to rise. Her platelets had been up around 200 on the weekend, but have dropped the last few days and are only around 170 right now (normal is 150-400). Her hemoglobin was up around 110 on the weekend but is back down to 103 (normal is 110-140). It is completely normal for platelets and hemoglobin to fluctuate by significant amounts from one day to the next. However, again, this just isn't the normal pattern of recovery for Katie. We are praying that this is just because of the new drug Katie had with the last round or that it's because she has had so much chemo over the past year. We were in touch with Dr. Cairney today and she is going to review her blood work from the past week or so. The plan is that if her counts recover by Monday, she will start her next round of chemo. If not, she will have us come to London for a bone marrow test to make sure the Leukemia isn't back. Please pray extra hard for Katie this week.

A few "hellos" to some of our good friends out there that are battling with us:
Hannah we miss you and we know that you are an angel at Katie's side.
Lucas was at Hotel Dieu with us this weekend. Glad you are home. Hope dad's back is feeling better.
Congratulations Kirsten for completing your treatment. Way to go girl!!!! We're proud of you.
Good luck Julia on your upcoming bone marrow transplant.
Glad to see Katelyn is still doing fantastic. You keep our hope alive!

Did you tell somebody about the bone marrow registry today? If not, please do!!!! www.bloodservices.ca

PS - New photos uploaded to the photos section.

Tuesday, February 15, 2005 10:46 PM CST

Our family received more sad news today. My (Bryan) mother's first cousin Karen Laporte lost her husband Mike to cancer today. He was only 54. We loved Uncle Mike very much and are going to miss him dearly. Our hearts are aching for Aunt Karen and our cousins Brad and Cheryl who are undoubtedly devastated by this loss. My memory of Uncle Mike wll always be of what a genuinely friendly and happy person he was. There were plenty of challenges in his life but you would never know it because of the big smile that was always on his face.

For days now, I have wanted to sit down and write up a decent journal entry about all the things Katie has been up to lately. Unfortunately, life has been really hectic and I just haven't had the energy to get to it. Joanne doesn't have access to the Internet when she is at the hospital and she didn't have a chance to post anything when she was home this past weekend either. We have tons of new photos and I hope to get them off our camera and onto the web site soon. I changed the main photo, but it's from three weeks ago.

For tonight, just an update on where things are at right now. It is official now that Katie will need to be on antibiotics for 6 weeks thanks to the combination of her heart valve problem (something she has had since birth) and the type of bacteria they found in her line a couple weeks ago. She is stuck in the hospital at least until her neutrophils are 1.0 or above. Today, they are at 0.4. Once the neutrophils are above 1.0, they are going to try and arrange home care so that she can receive the antibiotics at home. The reason she would need home care for this is that the antibiotics cannot be taken orally, they must be infused through her central line since that is where the infection was found.

We are due back in London a week from today (Tuesday, February 22nd) for Katie's next round of chemo, provided her neutrophils are above 1.0 by then which we expect them to be.

Bryan

PS - It was Joanne's 30th birthday last Monday (Valentine's Day). We weren't able to celebrate it since we were tied to the hospital but will do something in a few weeks.

Wednesday, February 9, 2005 8:20 PM CST

We haven't posted much news lately so we felt it was time for a little update. Katie is still at Hotel-Dieu in Windsor and feels great. Her temperature never actually hit 38C (a fever). The closest it came was 37.9C. Really, her temperature has been perfectly normal since last Friday or so. What's kept her in the hospital so long is the line infection. She will be on IV antibiotics until at least Saturday.

Tomorrow, Katie is taking a little road trip believe it or not. The type of bacteria in her line dictactes that they need to do some cardio tests on her. Katie, Joanne and nurse Robin will be hopping in an ambulance and heading up the 401 to London. After an EKG & ECG, she will come back to Hotel-Dieu in Windsor. When we first heard about the test in London, we assumed she was just going to be transferred there. Apparently they don't have any beds available so she has to come straight back to the hospital here instead.

Friday, February 4, 2005 10:17 PM CST

We've been spending a lot of time thinking about Hannah today. Hannah was such a sweet little girl and we miss her like crazy. She reminded us so much of Katie. She loved all of the little girl things like pretty colours and pretty dresses. She loved to talk and to read books. She was intelligent well beyond her years and knew the medical terms and procedures so well you could mistake her for a nurse. Her adorable little voice will forever be in our ears and we will never forget the princess of 7 West. We dreamed of a day when Katie and Hannah could spend time together outside of the hospital and be normal little girl together. Although this dream cannot come true, we know that Hannah is happy now and will be a special angel at Katie's side as she continues to fight, just as Hannah fought with all of her might.

By the way, in case you have been looking for us the past few days, Katie was admitted to Hotel-Dieu in Windsor on Wednesday because of a fever. Her blood cultures came back positive (infection) so she is looking at another extended stay. We don't know for how long yet and we might even find ourselves back in London in a few days. She is doing very well and we don't feel there is anything to worry about. This just comes part and parcel with being neutropenic.

Thursday, February 3, 2005 3:04 PM CST

We are stricken with grief today having heard the crushing news that precious little Hannah passed away during the night. We feel such a special bond with Hannah and her parents John and Cathy because Hannah is one of Katie's AML sisters. Our deepest condolences to John, Cathy and their family during this painful time. Hannah battled her disease with the strength of a warrior and the courage of a lion. This is such a cruel world we live in and we mourn the loss of such a precious little life.

If you would like to express your condolences to Hannah's family, sign her guestbook at:

www.caringbridge.org/canada/hannah

Thursday, February 3, 2005 3:04 PM CST

We are stricken with grief today having heard the crushing news that precious little Hannah passed away during the night. We feel such a special bond with Hannah and her parents John and Cathy because Hannah is one of Katie's AML sisters. Our deepest condolences to John, Cathy and their family during this painful time. Hannah battled her disease with the strength of a warrior and the courage of a lion. This is such a cruel world we live in and we mourn the loss of such a precious little life.

If you would like to express your condolences to Hannah's family, sign her guestbook at:
www.caringbridge.org/canada/hannah

Wednesday, January 26, 2005 7:37 PM CST

Well hello to everyone. It's been awhile since I've updated the website. I've left it up to Bryan the last few times. I do read all of your guestbook entries and thank you for all the words of encouragement. I know that Bryan mentioned in one of his entries that I have the better mind for details and I don't like to toot my horn but he is right. I will try filling you in on a few of our adventures over the last little while.

First off I will fill you in on our week here in London. So far all has gone well. Katie has tolerated her chemo well with the exception of a few miner outbursts (darn that Dexamethasone). Sunday night we headed up to London to sleep at Aunt Angie and Uncle Jake’s, as we had to be at the hospital by 9am Monday morning. Katie was pretty excited that we were going to be spending five nights at Aunt Angie and Uncle Jake's. In fact, if you ask you about it, she would say "we're going to Auntie Angie's then to the hospital, then back to Auntie Angie's, then to the hospital, then to Auntie Angie's, then to the hospital, then to Auntie Angie's, then to the hospital..." until I would finally have to interrupt her and ask "what about going home to see Bryan" then she would finish "...then home to see Bryan".

Monday was quite a long day. We got to the hospital for 9am and found out that unfortunately Katie had to have another "back poke" (lumbar puncture). We thought that she was done with those for now. So her chemo didn't start running till 2pm and it takes approximately 5 hours from start to finish. Needless to say, Katie was exhausted when we got out of there at 7:30pm. Tuesday was a shorter day, we didn't have to be at the hospital till 12:30pm but still didn't get out of there till 7pm. Today however we were out of there by 6pm. The challenge of long days in the clinic is trying to keep Katie occupied. Thank goodness for Lisa and Melissa (Child Life specialists) and the Camp Trillium volunteers. They come in and play and do crafts with Katie. We are all looking forward to Friday when we head home to see Bryan. I know we all miss him very much. Katie has shed tears a couple times because she misses him.

Katie is at such a wonderful age. I often find myself just sitting and listening to her talk. Some of the things she comes up with just crack us up. As much as I would love to share every little story with you, I will keep it short. The other day, Katie woke up at 6am. Bryan tried to get her to fall back asleep, but she insisted that she was hungry. So, he got up and made her breakfast. At lunch, we were all sitting at the table and Katie says, "I'm tired! Dad, you should have let me sleep in more". Needless to say, Bryan and I just broke out in laughter. There are many other stories I could tell, unfortunately my brain is tired, it's been a long day. I will try to update again soon.

Thanks again to everyone who has checked in on Katie and please keep Katie and all of these little heroes in your prayers.

Joanne

Sunday, January 23, 2005 11:10 PM CST

Hello all,

We are back in London. Katie starts her next round of chemo tomorrow. It will be outpatient which means we only have to be at the hospital during the day. At night, we will stay at Aunt Angie & Uncle Jake's place. Little Bryan stayed behind in Windsor so it's just the 3 of us up here. It will be so cool to not be tied to the hospital.

We had a wonderful week at home. It was so nice to do normal things, sit on our own couch, sleep in our own beds and breathe the "fresh" Windsor air. We were quite remiss in keeping our web site up to date this week while we were home. Tonight's post is just to let you know that we put some new photos in the photos section.

Friday, January 14, 2005 9:44 PM CST

A short update tonight. Just wanted to share the good news that we are going home tomorrow! We will be home for about a week then will return for more chemo. We still don't know if the next round will be given inpatient or outpatient but we do know that we won't have to wait in the hospital while her counts recover as we did the last two rounds. The bottom line is that we should be home more than not over the next few months which we are really excited about. That's all for tonight. Katie is still feeling great by the way.

Saturday, January 8, 2005 10:50 PM CST

What a difference a week makes. Katie is feeling SO much better than she did this time last week. You can really see those neutrophils doing their job. As of right now, she is almost 48 hours without a fever (after 24 straight days febrile). Although her stomach is still really big, se doesn't complain about it very often. They're slowly starting to scale back her anitbiotics and morphine. She is allowed to drink full fluids and little bites of crackers if she wants. She hasn't shown any interest in either yet but that will come soon enough.

Every day Katie seems to be awake more than the previous. She is back to doing many of her favourite things like playing with Play-Doh, drawing pictures and doing puzzles. She has also opened her own beauty salon. She tells people it is time for their appointment. When they come over to her bed, she uses her princess purse filled with makeup to give them a makeover. She puts lipstick on them, eye shadow, nail polish, perfume and she even combs their hair. All of this is pretend of course but she has a great imagination and tells everyone how pretty they look when she is done.

We can't get over some of the art work she has produced lately. Take a look in the photos section for a few samples. She coloured a fireman in a colouring book. It is the first time we have seen her use multiple colours on the same picture. We are impressed how well she stays between the lines for age. Also, there are doodles of Dr. Cairney and Dr. Leaker that she made. The likeness is stunning :)

That's all for now. There have been lots of great moments this week and so many little stories I could tell. Joanne is way better at remembering them all though so hopefully she will find the time to log on and share them with you at some point.

Bryan

Sunday, January 2, 2005 6:15 PM CST

After 20 straight days of fever and abdominal pain, we finally have some good news to report. Katie has been feeling much better the past two days. She doesn't complain about her stomach hurting as much as she used to. Also, there are fairly long periods during the day now where she is awake and seems more like her normal self. Although the fever persists, her blood counts are finally recovering. Her white blood count was "on the map" this morning, weighing in at 0.6 (anything less than 0.5 is the same as zero). This evening, they did another CBC and her white blood count was 1.1. This is great news. Although they didn't count her neutrophils (a type of white blood cell essential to fighting infections) with this last blood work, more than likely some are there. Even if she does have neutrophils, the count probably won't be very high for a few days because they are being consumed by fighting the infection in her abdomen and lungs. All of this seems to explain why she is feeling so much better the past two days. Another bit of good news is that she has started having "normal" bowel movements again. Sorry to share such a dirty detail, but the past week she had two very bloody diapers that were cause for a great deal of concern. The fact that her bowels seem to be functioning properly again indicates that things are probably starting to heal.
Now, if we can just get this fever to stay down for more than 4 hours we should be in business. I remember how concerned we used to get before Katie was diagnosed with Leukemia if a fever lasted more than 24 hours. I never imagined someone could actually have one for 3 weeks straight.

We were very touched today by some visitors that came knocking on our door, Bob & Lori Thomas. We had never met them before, but they have left us a message before in our Guestbook. Sadly, their daughter Samantha lost her battle with ALL in May 2003, just days before her 3rd birthday. Bob & Lori brought Katie a beautiful quilt made by Bob's mom. Unfortunately, Katie was napping when they came by so we were not able to introduce them to her. We gave her the quilt this evening and she loves it. She is wrapped up in it in her bed as I write this entry. Bob & Lori organize a wonderful event every year called ROCK Ride (Ride for Our Cancer Kids). This is a motorcycle ride in Cambridge, ON that raises money for the Childhood Cancer Foundation of Canada. If you have a moment, please visit their web site: www.rockride.com This year's ride is July 9, 2005.

I'll end this update with a little anecdote from this morning. Joanne and I were fast asleep and it was still dark in the room. We awoke to Katie's little voice saying quite clearly "I want to make some more snow cones" (the kids got a snow cone maker from Grandma and Grandpa Bedard for Christmas). Although we could have used some more shut eye, we were quite glad to stumble out of bed to fetch some ice chips for the snow cone maker. This is a really nice change from being woken up by Katie crying with abdominal pain the past few weeks.

It looks like 2005 is off to a decent start. Here's hoping for even better things to come this year.

Bryan

Friday, December 31, 2004 9:46 AM CST

Katie is feeling pretty good this morning. She doesn't seem to be feeling quite as much pain. As I write this, she is laying in bed watching Blues Clues. Yesterday, she had a CT scan on her abdomen. Thankfully, although her bowel is still quite inflamed, it is still intact and there are no obstructions. The doctors aren't completely sure why so much blood has been showing up in her diaper lately. The best guess is that the lining of the bowel is tearing away a bit which is something that will heal over time.

Joanne's mom & dad and tante came for a visit yesterday. They brought Bryan with them. Even though he has only been back in Windsor for a few days, we miss him a lot and were really happy to see him. There was about a half hour period in the afternoon where Katie actually felt well enough to get ouf bed for a bit and open a few more Christmas presents with Bryan. They had fun playing together with the Little Tikes sports set that Santa brought for him.

That's all for now. Happy New Year!

Bryan

Wednesday, December 29, 2004 9:48 AM CST

Not a lot to report right now. Katie's counts are not recovering yet. In our last message we thought they were showing signs of stirring but they aren't. She had a similar dose of cytarabine last March and it took a full month before her counts started to recover. She started this round on Dec. 1st, so it certainly might take until Saturday or later for them to start coming around again.

We are feeling pretty down right now. Katie is in bed around the clock and we keep having to bump up her morphine dose to control the pain. The fever persists (15 days now) and her abdomen is much more stretched than it was. Also, her diaper this morning had a lot of blood in it. She will have an X-Ray done on her abdomen today to see if there is any major tissue damage. I sound like a broken record, but we really need her neutrophils to come back sooner than later.

Sorry for such a solemn update, but I know a lot of people have been checking the site lately to find out her progress so I at least wanted to post some news. Please keep praying for her.

Bryan

Monday, December 27, 2004 11:53 AM CST

Not much has changed around here in the last little while. Katie's fever persists as does the abdominal pain. Her heart and breathing rates are still very rapid. The good news is that things haven't gotten any worse. We were happy to see her platelet count at 22 this morning. The last 3 days it has been below 10 each morning and she has required a transfusion. In the past, when we have been waiting for blood counts to recover, her platelets have always been the first thing to stabilize so maybe this a sign of good things to come. (apparently it is not common for the platelets to come first, but for some reason that's what happens with Katie).

Joanne's mom and dad, tante (aunt annette) and Jo's sister Carolyn came for a visit yesterday. Katie was actually feeling quite well when they got here so she was able to talk to them a little bit and open a couple presents. In the afternoon though, she became very tired again and fell asleep by around 2:00pm or so. She pretty much slept through until morning after that. In the late afternoon, our friend Gary Billard came by for a visit as well. It was wonderful to see him. It has been a difficult week for him having lost his father to cancer days before Christmas. After dinner (take out from Kelsey's) Joanne's family headed over to the Lamplighter Inn for the night.

Today, Joanne's family came by again and they were joined by Joanne's brother Kevin, his wife Rhonda and their kids Zack and Brayden. Katie was so excited to see them she actually asked to get out of bed for a bit. However, as soon as we started to get her out of bed, she changed her mind and asked to lay back down for a rest.

Mom and Dad Bedard came for a visit today too and brought little Bryan with them since he stayed with them at Aunt Angie's last night. Bryan is walking really well now. He has definitely transitioned from the baby stage to the toddler stage now. Around lunch time, Mom & Dad Bedard headed back to Windsor and brought little Bryan back home with them. He will stay in Windsor now until Katie recovers from her Typhlitis and pneumonia. Given the serious condition she is in, we feel it is best that both Joanne and I are with Katie around the clock.

That's all for now. We're expecting our good friends Mike & Kim this afternoon. They live in California now and we can't wait to see them.

Bryan

Sunday, December 26, 2004 12:01 AM EST

I read a good article tonight that describes exactly what is going on with Katie medically right now (typhlitis or neutropenic enterocolitis). Her condition is a result of the high dose cytarabine she received. The treatment recommended in this article is exacxtly the treatment she is receiving right now. Paste this link into your browser if you are interested:

http://www.current-reports.com/article.cfm?PubID=GR04-4-1-03&Type=Article&KeyWords=

(The link seems to work OK now if you were having trouble before)

Saturday December 25, 2004 1:29 PM CST

Merry Christmas everyone. Katie woke up around 7:00am this morning. She turned to Joanne and said "I don't think Santa came". Joanne was quick to point out to her that the cookies and milk we had left for him were gone and that Santa had left a note behind. Katie got really excited and shouted "He did come!". We asked her if she wanted to open the presents he brought but she was still too tired and decided to back to bed for a few hours. Later, around 9:00am or so, the jolly fellow actually came to her room for a visit and we got to thank him in person (see the photos section). Katie was happy he came but didn't let him come anywhere near her bed. Mom had to pose for the photo with him instead.

We have been on a roller coaster lately and today is no exception. Katie had severe abdominal pain all morning. When the doctor came in to examine her, Katie was in really rough shape. On top of the stomach pain, her breathing was extremely laboured. She was gasping for air and couldn't even get the words out to tell us where it hurt. Her heart rate was extremely fast (185-205 beats per minute) and her breathing rate had dropped quite a bit (because she was having so much trouble getting air). Our doctor had one of the doctors from the ICU come up for a
consultation to see if they wanted to move her down there. By the time the ICU doc examined her though, we had increased her morphine dose again and repositioned her
to a more upright position. These changes seemed to improve her condition dramatically. It was decided to hold off on moving her to the ICU for now and to just keep a close eye on things.

After lunch, we were thrilled because Katie seemed to become more and more comfortable and perked right up. She even felt up to opening some of the gifts that Santa, grandma and grandpa had brought. To tell you the truth, right now she seems the most comfortable and energetic she has looked in days.

We did receive a bit more disturbing news yesterday that we haven't posted yet. Not only is Katie battling the infection in her abdomen, but pneumonia appeared on her
chest X-Ray yesterday. It is becoming more and more critical that her neutrophils come back sooner than later.

We wish you all a wonderful holiday and look forward to posting happier and more encouraging news later this week.

Bryan

PS - There are new photos from Christmas morning in the photos section.

Friday, December 24, 2004 9:44 AM CST

Another short update today. Just wanted to let everyone know that things are about the same for Katie. The fever is still raging and her stomach is round like a balloon (looks like she is pregnant... belly button is popping out). She is on a continuous morphine infusion so the pain is pretty much under control. For the most part she lies in bed quietly. However, we were encouraged yesterday because she got out of bed around 2:00pm and played with Bryan for a bit. Before long though she became quite tired. However, instead of going back to bed she sat in a chair with Joanne all afternoon and into the evening. It was wonderful to see her out of bed for such a long period.

She hasn't gotten out of bed yet today. Hopefully this afternoon she will perk up a bit. We certainly aren't out of the woods yet but we are happy things haven't gotten much worse in the last couple days. Each day that passes without anything serious happening brings us one day closer to neutrophils.

Merry Christmas and thank you for reading this journal. It means a lot that you keep us in your heart.

Bryan

Tuesday, December 21, 2004 9:00 PM CST

Just a short message asking for prayers again. Katelyn had a CT scan on her abdomen today. She has fairly severe Tiflitis (spelling?) which is inflammation in her right large bowel. There are small tears in the lining of the bowel that are allowing E.Coli into her body which is the source of this nasty infection she has. She is burning up with fever and her breathing is very rapid. She spent all day in bed. If the problem in her bowel gets worse she may need surgery to remove part of her bowel. Worse yet, the bowel could rupture and that would be very, very bad. The only thing that can really help now is neutrophils because they can heal the damage to her bowel and fight off the infection she is battling. Unfortunately, her neutrophils aren't expected back for another 10 days or so. She has started taking GCSF to try and encourage them to come back sooner. Let's all pray the neutrophils come back before things get much worse.

Also, our condolences to my good friend Gary Billard and his family. Gary's father lost his battle with cancer today. Our thoughts are with them during this difficult time.

Bryan

Monday, December 20, 2004 8:39 PM CST

Where do I begin? Lets just start by saying sorry for taking so long to update, we have been a little busy. As many of you know, Katie was on the news last Monday in hopes of raising awareness for the need for more bone marrow donors. I think the response has been overwhelming. So much so, that the New PL ran another story on Wednesday to explain the process involved (please read above for information on joining the Unrelated Bone Marrow Regisry).

On Tuesday night, Katie unfortunately spiked a fever and have pretty much been feeling crappy ever since. At first, all the cultures were coming back negative. But finally, the other day a set of cultures came back showing that she has bacteria growing in her central line. The good news is that there is an antibiotic that can treat this bacteria, the bad news is that since this is the second time she has had this same type of bacteria in her lines, they will have to replaced. This means yet another surgery. Although this surgery is relatively routine, we never like the idea of having to put our pour little Katie through it. She has already been through so much and she has so much more to go through. It would be so nice if these little set backs would just stop happening. But if there is one thing we have learned through all this, it is to expect the unexpected. Since coming down with this infection, Katie has really been feeling sick. She has really bad tummy pain and her fever just keeps coming back. Because her body can't fight anything on its own, we have rely on the antibitics and so far they are not making her better, I'm sure they are keeping her from getting worse, but she is not any better. We just pray that nothing more serious is going on. They have done several X-rays of her tummy, and at first were concerned that there could possibly be an infection of some sort in her bowel, they now feel that it is probably just the line infection that is causing all these symptoms. But they continue to run different test in order to rule out other problems. It really is just a waiting game, once her counts start to come up, her body will be able to help the antibiotics to fight and she will start to feel better.

Despite the fact that Katie is under the weather, she is still looking forward to Christmas. I can't say that she is looking forward to Santa coming because she is afraid of him. He has already been to the hospital for is pre-Christmas visit and was allowed to come into Katie's room only if he followed these rules:

1. He was not allowed to come too close.
2. Katie was not going to talk to him, I had to do the talking.
3. He couldn't hand the present to Katie, he had to give it to either myself or Lisa (Child Life Specialist from the hospital and one of Katie's friends).
4. Last but not least, he couldn't say HO! HO! HO! too loud.

Well, Santa was good enough to follow the rules and we even managed to get a picture of the three of us (Katie in my arms on my left hip and Santa standing next to me on the right, but not too close).

I hope everyone has very Happy Holidays. Please keep our little hospital neighbour in your prayers. She had to be taken down to the Critical Care Unit this week. Hannah, we miss you and we pray for you everyday.

Joanne

P.S. You can read Hannah's story on her website www.caringbridge.org/canada/hannah

P.S.S. I deleted the little slide show thing for now. With having to use dial up internet connection at the hospital, it takes too long to load the web page.

Sunday, December 12, 2004 9:10 AM CST

It's starting to look a lot like Christmas around here. We woke up this morning to a light dusting of snow outside, which is always nice this time of year. Yesterday, Katie and Joanne decorated our Christams tree. It's a little fiber optic tree borrowed from Katie's Aunt Carolyn. It fits great in our room and helps to put us in the Christmas spirit.

Thank you so much to all of the wonderful people that came out to the blood drive this week. The event was a huge success. Special thanks to our dear friends Nicholle and Jackie for organizing and promoting this event. They did a fantastic job and their devotion and kindness is deeply appreciated. Special thanks to Canadian Blood Services and their nurses that ran the clinic as well as the team from the bone marrow registry office in Hamilton that attended. Joanne was told they distributed 700 pamphlets about the bone marrow registry (although the Windsor Star reported it as 200... not sure which figure is correct). The blood drive achieved exactly what it set out to.... increase the blood blank and raise awareness about the bone marrow registry.

Katie has been a bit of a media darling this past week. It started with a beautiful column written by Marty Gervais that appeared in the Windsor Star. The Star also covered the blood drive and there was a nice picture of Joanne giving blood in Friday's edition. Prior to the blood drive, AM 800 (CKLW) did an interview with Joanne's brother Kevin encouraging people to come out to the blood drive and to consider joining the bone marrow registry. AM 1550 (CBC) also interviewed Joanne the day of the blood drive and aired the interview on Friday morning. There were also wonderful articles in some of the small town papers such as the Shoreline (written by Bill England) and the Lakeshore Herald (written by Tim Halford). Thank you so much to all of the media outlets that covered this event and published a piece on Katelyn. Spreading the word is all we can do right now and this has helped tremendously.

Katie's little stint in the media isn't quite over just yet. On Monday, the New PL (TV station here in London) is supposed to be coming by the hospital to film a piece on Katelyn. I'm not sure if it will air on the Monday evening news or later in the week. We'll post the air date as soon as we find out. Maybe the New WI (TV Station in Windsor affiliated with the New PL) will run the piece as well.

Katie is doing pretty good right now. Her chemo has been administered and we're just waiting for her blood counts to recover, which should be some time in the next 2 to 3 weeks. Unfortunately, the high dose ARA-C she received has given her really bad eye pain and light sensitivity again. Hopefully she will snap out of this in the next couple days.

That's all for today. 12 days until Christmas Eve!

Bryan

Sunday, December 5, 2004 9:16 PM CST

A few things have happened since our last update. Katelyn returned to London on Dec. 1st. When we met with the doctor, we got our roadmap for the next few months. She will go through a consolidation phase which will last about 6 weeks then move on to a maintenance phase for a few months (at least). The maintenance phase will be administered through the out-patient clinic, which means we will only be in London for short periods and only have to stay in the hospital if she gets a fever.

When we met with the doctor, we also got all of the facts straight regarding the search for a bone marrow donor. She confirmed that a world wide search has indeed been completed and that no 6 out of 6 matches were identified at all. This is not good news. She did say that a handful of 4 out of 4 matches were identified. The 4 out of 4 matches are people in the registry that only had A and B typing done, they did not have DR typing done. DR typing will now be done on the 4 out of 4 matches to see if they are actually 6 out of 6 matches. Unfortunately, the probability of this panning out is quite slim, maybe a 1 percent chance. All of this means that we are basically left to hope for a miracle. We need someone new to join the registry that is a 6 out of 6 match.

Back to treatment.... First off is the consolidation phase. She is receiving high dose Ara-C. She was given 4 doses between Wednesday afternoon and Friday morning. On Friday morning, we were discharged and scheduled to return Wednesday morning for the final doses. After those doses, she will have to stay in the hospital until her blood counts recover, which should take until the first week of January some time. (approx.). This means we will be spending Christmas at the hospital again this year. We aren't as disappointed about this as you might think. As long as we are together as a family, Christmas will be special.

Unfortunately, late Saturday night, Katie started vomitting. By early morning on Sunday, her temperature had reached 38C so we packed our bags and headed for London. Our 5 day break at home got cut short to a day and a half. On top of that, things have sort of fallen apart. It seems that Katie has some sort of stomach virus. Not only that, so do Bryan (Jr.) and Joanne. I am the only to one to dodge the bullet so far. When we spoke with Dr. Salvadori though (the infectious disease doctor) she said it was actually good news that it seems to be just a stomach virus, and not another line infection (Katie had a line infection last month). If she gets another line infection, they will need to replace her line, which would mean another trip to the O.R.

So, instead of a quiet day at home today as originally planned, we have ended up with Katie and I at the hospital, Joanne is at Aunt Angie's recuperating and little Bryan is back in Windsor with Meme & Pepe. Just a typical day for a Leukemia family I guess :)

That's all for now and in case you haven't been asked lately.... PLEASE JOIN THE BONE MARROW REGISTRY!!!!!!

Bryan

Sunday, November 28, 2004 10:37 PM CST

We are home right now and loving it, as expected. Katelyn feels great and has been having fun playing with her brother. Uncle Ted is in town from Vancouver and we were happy to get to visit with him at Grandma's house yesterday.

Last night (Saturday), Joanne and I went out for dinner for our friend Lisa's birthday. She turned 29 (same as us... one year left until we're "old" (kidding)). We went to Spago Ristorante on Erie street. The meal was fantastic. Afterwards we went for drinks at the Beer Market, which is a swanky little pub downtown Windsor. Katie and Bryan were home with Meme & Pepe so they had fun too.

I just wanted to clarify something about my last post. Katelyn is starting an in-patient round of chemo on Wednesday, and she will likely be in London up until Christmas. Right after that though, she should be onto an out-patient program. I think the way I phrased it in the last post gave the impression that the difficulty finding a bone marrow donor meant she would be in the hospital for quite some time, which is not the case. In actuality, we won't know for sure how everything is going to go down until we talk to the doctor on Wednesday. All we've been told so far is to plan for another in-patient stay.

Bryan

Wednesday, November 24, 2004 7:54 PM CST

Remission!

We had wonderful news yesterday. Katelyn is in remission again. She is coming home tomorrow (Thursday) and will be home until next Wednesday, when we she will return to London to start the next round of chemo.

As long as we can keep her in remission and as long as a donor is found, the next step is a bone marrow transplant. Unfortunately, news is not good on that front. The initial search turned up no matches whatsoever. Typically, for a caucasian person, the initial search will turn up a short list of a few dozen people that they can start to bring in for interviews and further screening. Sadly, this was not the case for Katelyn. Because of this, she cannot begin the maintenance (out-patient) chemo program that was planned. Instead, she will most likely start a consolidation (in-patient) chemo program. Eventually she will end up on a maintenance program, just not right now. This is because they will need to keep her in remission much longer than expected. Instead of a few months, it will likely take closer to a year to find a suitable bone marrow donor, if one can be found at all.

Again, we cannot stress enough the importance of having as many people on the registry as possible. Please spread the word about the bone marrow registry and encourage your friends and family to register. It is her only realistic hope for survival.

For more information on the bone marrow registry, see the Canadian Blood Services web site: www.bloodservices.ca.

Bryan

Monday, November 22, 2004 8:32 AM CST

Hello Everyone,

Well things have really started looking up for Katie this week. Her fever broke Monday night and has not returned since. On Monday, she had 0.2 neutrophils and they have continued to climb since. She is now at 0.5 and is no longer neutropenic so now is able to go for walks in the hall. We are feeling very encouraged this morning. Today she will be having a bone marrow aspiration (the test to see if she is in remission). If all goes well, we are hoping to be home possibly at the end of the week. Please say a little prayer that we receive good news today.

As you can see in the photos that we have updated, Katie has lost her hair again. It's funny how little this affects her. She actually will stand there and pull it out herself when it starts coming out. When it did start to come out, I came into the room one morning to find a bag of hair on the play table. When asked Katie what she was saving the hair for, she told me "I want to make hair soup".

We are hoping that we will be back home for Christmas and Katie is looking forward to decorating the tree. Whenever I ask her what she wants, she always says, "I don't know, you tell me what I want." The other day a volunteer came in to offer us a Christmas tree for our room. I thanked her but told her that we were hoping to be home for Christmas. When she left, Katie I had this conversation:

Katie-I like that lady... You should call Santa and tell him I want that lady for Christmas...Do you like that lady?
Mom- Yes, I do, she is a nice lady
Katie- Ok, I'll call Santa and ask him to bring you a lady.

It's the simple things in life that really make me laugh. If she only knew what I really want for Christmas...

Anyways, I should get going; they should be coming to get Katie soon for her test. We will let you know as soon as we find out anything.

Sunday, November 14, 2004 7:27 AM CST

Good morning. It's a beautiful sunny Sunday morning here in London, although the nurses tell me it is rather cold (-4 C). Sorry we haven't been updating the journal very much. That trend will likely continue, since Joanne is usually the one who keeps it up to date and I've got the laptop hijacked for work most of the time. We'll do our best to keep it current.

I've updated the photos on the site today. They are a couple weeks old... the birthday / Halloween weekend. Katelyn looks quite different today than she does in the photos because her hair is gone again. I'm sure you'll see her cute bald head in the next set of photos.

It's been one struggle after another for Katelyn since she was admitted. Week one, she felt lousy while she was on chemo. Week two, the high dose ARA-C she received gave her horrible eye pain (same as last spring). Week three (this past week) she has been up and down with a fever thanks to an infection she is battling. She also has really bad stomach pains and hasn't had anything to eat in over a week. I don't think she has felt this sick since last January when she had pneumonia. She seems to be feeling great this morning though, so hopefullly she is turning the corner and better days are ahead.

Just a short update today. We're still waiting for her blood counts to recover. Once they do, they'll take a look at her bone marrow and see if she is in remission or not. We're still a couple weeks away from all of that.

That's all for now. Since it's Sunday and it's November, I'd be remiss if I didn't throw in a "Go Lions!".

Cheers,

Bryan

Saturday, October 30, 2004 7:01 PM CDT

Hello Everyone,

Thank you to everyone who has taken the time to pray for our little Katie. So far she is doing well. She has finished receiving the chemo she will get for now, now we just wait for her blood levels to return to normal and see if she is in remission. This round of chemo seemed to bother her a little more, or maybe we just noticed it more. She really seemed to be feeling under the weather the first four of five days. Then she picked up again.

As many of you read in the guest book, Katie celebrated her 3rd birthday on Wednesday October 28th. She had a very fun day... too much fun. In fact, she ended up getting sick in the early evening ending her birthday celebrations earlier than expected. After everyone left, she woke up around 8:00pm and decided she wanted to open the rest of her presents. Well of course I couldn't deny her this birthday wish so there we were just the two of us opening gifts until 10:00 (of course she has to either play with each toy or try on each outfit before moving on to the next present).

Now we are looking forward to Halloween tomorrow. Katie has two costumes, a witch and an M&M. Here is the scoop on; when we first started talking about Halloween at the beginning of October, I asked Katie what she wanted to be. Her response was always "a witch". One day while doing groceries, I told her we would look at the costumes, but we were not buying one that day. So we saw some witch costumes, some princess costumes (I tried to convince her to be a princess, it was not happening), a firefighter costume, an M&M costume and many others. Well then Katie decided she wanted to be an M&M. So I told again that we were not buying her costume that day, but that I thought an M&M would be fine. She was fine with this. Well the next day she went back to wanting to be a witch. So when we finally did decide to buy her costume, she picked out a witch costume... ok no problem. We got the witch costume, the next day, someone asked her what she was going to be for Halloween she said "I'm going to be an M&M" I tried to explain that she had already decided to be a witch. There was no changing her mind this time. So needless to say, I bought the M&M costume too (how can you say to such an adorable little girl). My intention was to return the witch costume but I never got around to it. I guess it was good thing after all, now she can be both. My thinking is if you can't go door to door trick or treating, at least you should be able to dress up in more than one outfit.

We have been spending this week just enjoying being a family and spending time with our beautiful children. Thank you to everyone who has kept Katie in their prayers and we ask that you continue to pray for her and all the other children fighting cancer. I would also like to thank all the wonderful nurses, doctors, child life staff and the rest of the staff at Children's Hospital of Western Ontario. The sadness in your eyes, a shoulder to cry on, offering a hug because you couldn't find the words to say...we know that you too are pained by Katie's relapse. You are all wonderful people and you have touched our lives more than you can ever imagine. It is hard to find the words to tell you how thankful we are for the wonderful care that you give Katie. Thank you just doesn't seem to be enough, but it is all we have. Thank you, Thank you, Thank you.

Joanne

Friday, October 22, 2004 9:37 PM CDT

Hello,

Sad news to report today. For those that haven't heard yet, Katelyn has relapsed. We knew she had a significant risk of relapse but we were immensely hopeful that her disease was gone forever. Unfortunately, this is not the case. She will begin chemotherapy tomorrow hoping to induce a second remission. If remission can be achieved and a suitable bone marrow donor can be found she will undergo a bone marrow transplant. Please pray that remission can be achieved and a donor found. It is her only hope.

Bryan

Friday, October 22, 2004 9:37 PM CDT

Hello,

Sad news to report today. For those that haven't heard yet, Katelyn has relapsed. We knew she had a significant risk of relapse but we were immensely hopeful that her disease was gone forever. Unfortunately, this is not the case. She will begin chemotherapy tomorrow hoping to induce a second remission. If remission can be achieved and a suitable bone marrow donor can be found she will undergo a bone marrow transplant. Please pray that remission can be achieved and a donor found. It is her only hope.

Bryan

Tuesday, October 12, 2004 4:25 PM CDT

Hello Everyone,

Sorry it has been so long since our last update, we have been quite busy.

Ok, I think the last time we mentioned anything about our trip, we left you all at the San Diego Zoo. Well the next day we decided to spend at the beach. So off we went to LaJolla, a very beautiful (and expensive) area of San Diego. There we spent the day lounging on the beach building a sand castle. Well Katie and Dad built the castle while Bryan and I lounged. It was a little cloudy that day but we had fun anyways. That was our last day in California. We headed home on Friday October 1st. After a long day of travel, we decided to head straight home once landing in Detroit (we had originally planned on staying overnight in a hotel). We just wanted to get home. As nice as it is to get away, it is always nice to be home.

Since our arrival home, we have been busy planning Bryan's 1st birthday. Yes! Can you believe it; he is already 1 year old. The time flew by. We had a nice little party for him with Bryan's family on Thursday and we celebrated with my family on Monday (Thanksgiving day, his actual birthday). He had so much fun eating his first piece of cake; take a look at the photos on webshots (California pictures link below). Poor little guy, he was sick pretty much all weekend, some sort of virus. He barely slept Friday night or Saturday night, and neither did Bryan or I. Thank goodness it passed and Sunday night was much better and he felt pretty good on Monday and was able to enjoy his own birthday party.

Katie is doing well. She is enjoying life as a normal child. She is such a good big sister. She is always going over to Bryan and giving him kisses and hugs. Whenever he goes up for a nap or to bed, she always says she misses her brother or she wishes she could see her brother. Now don't get me wrong, they have their squabbles, especially when Katie decides she wants the toy Bryan is playing with. He doesn't take this so well and a little tantrum usually follows, either by Bryan because Katie took his toy or by Katie because I told her to give the toy back to Bryan, (or sometimes both). But all in all we are doing well and even the squabbles are a blessing.

Hope you all had a great Thanksgiving, I know we did. After all, we have so much to be thankful for. We have a wonderful daughter who has been through so much and still the most positive outlook on life. We have a beautiful son who enjoys family and friends like no other child I have ever seen. And on Saturday, Bryan's cousin Tim and his wife Janelle welcomed their new son Eden James into the world. Congratulations Tim and Janelle we are saying lots of prayers and we can't wait to meet your new blue bundle of joy.

Thanks for checking in.

Love,

Joanne, Bryan, Katie and Bryan

P.S. Don't forget to look in the photos section and to check out the Califonia pictures link. We have added more photos.

Tuesday, October 12, 2004 4:25 PM CDT

Tuesday, October 12, 2004 3:36 PM CDT

Saturday, October 2, 2004 10:10 PM CDT

Hello to all,

Just a quick note to let everyone know, we are back home safe and sound. We had a very fun vacation. We will update the photos and slide show as soon as I am able to.

If you have been checking our website regularly during our vacation, than I'm sure you heard about the passing of my Uncle. It is with great sadness that we say good-bye to a wonderful man. My uncle Leo Paul (whom we refer to as MonOncle) was a man who loved people. He had this amazing ability to strike up a conversation with anyone, and people just seemed to open up and talk to him (maybe it was because of his uncanny likeness to Santa). MonOncle was a very caring man, if you needed help, he would never turn you down, no matter who you were.

I will miss his little ways: When he would come over for a visit, he would stick his face in the door until the dog would notice and bark his head off instead of just ringing the doorbell or knocking. His infamous wrapping paper (he would collect the Comics from Saturdays paper for a year then he would wrap all his Christmas presents with it). He would just write who it was for in black marker, he never needed to say whom it was from, we always knew. Every time I see a can of Diet Pepsi, I will always think of MonOncle. I could go on and on, I have so many memories. The world was better place because MonOncle was part of it. I will miss him greatly.

Wednesday, September 29, 2004 9:07 PM CDT

<<< Day 8 – Wednesday, September 29, 2004 >>>

Again today, the update will be brief. Today we went to the San Diego Zoo, which was our main destination for the trip (aside from visiting Mike & Kim). The Zoo was awesome as expected. We love San Diego. It’s a beautiful, clean city and it’s been a greats spot to finish our trip.

We fly home on Friday, so tomorrow is the last day of our trip. We plan to hang out at the beach and relax.

Tuesday, September 28, 2004 11:32 PM CDT

<<< Day 7 – Tuesday, September 28, 2004 >>>

Today, we received very sad news. Joanne’s uncle Leo Paul (Mononcle) passed away suddenly. We are deeply saddened by this news. The funeral will be held on Monday, so we will complete our trip but it will be with sadness in our hearts.

I will keep today’s update very brief in light of what has happened. We left Santa Monica this morning and visited Hollywood briefly (just long enough to take a picture of the Hollywood sign). We stopped on the way to San Diego in a beautiful beach town named Oceanside. We had a nice time swimming in the ocean for a couple hours. Afterwards, we continued on and reached San Diego around 5:00pm. We love the hotel we are staying at. It is perfect for families and is super-clean. Definitely our best destination so far.

Tomorrow we visit the San Diego Zoo

Tuesday, September 28, 2004 11:28 PM CDT

<<< Day 6 – Monday, September 27, 2004 >>>

We accidentally posted the wrong link to our Web Shots page where you can see many pictures from our vacation. Paste this link into your browser for the photos:

http://cards.webshots.com/cp-86678031-bCWs-album/192615305HgrVBV

Let us know if it doesn’t work.

Today we traveled from Santa Maria to Santa Monica (LA). On the way to Santa Monica, we stopped in Santa Barbera for a couple hours. Santa Barbera was the prettiest town we’ve seen so far on our trip. It’s a very scenic beach town. It seems like the type of place it would be wonderful to spend a week in relaxing on the beach.

We arrived in Santa Monica around 4:00pm. We’re kind of disappointed with our hotel here. It was recommended by the travel book we have been using and it sounded great when we read about it on the Internet. However, when we saw it in person, it turned out to be pretty beat up. It’s right on Venice Beach which is a pretty big party town so we think there have been one too many parties here.

Tomorrow we reach our final destination… San Diego.

Monday, September 27, 2004 1:40 AM CDT

For some reason, our last couple journal entries got doubled up. If you click on "Read Journal History", all of the journal entries up to day 5 of our trip are posted.

Monday, September 27, 2004 1:40 AM CDT

*** Click on "Read Journal History" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

<<< Day 5 – Sunday, September 26, 2004 >>>

Today we departed on our multi-day road trip to San Diego. Our “tour stop” today was in Monterey. Mike, Kim & Ethan decided to join us since Monterey is only about an hour from Sunnyvale (San Jose).

Monterey is a gorgeous seaside community. There was a lot we wanted to see in Monterey (17 mile drive, Pebble Beach Golf Club etc.) but we really didn’t have much time available. We didn’t get to Monterey until around noon, and we had to leave by 4:00pm so that we could be in Santa Maria by the evening where we were staying for the night.

After grabbing a quick hot dog for lunch, we headed over to one of Monterey’s biggest attractions, the Monterey Bay Aquarium. The aquarium is amazing. It’s setup really well for kids. They have some interactive exhibits where the kids can actually touch star fish and other creatures.

After visiting the aquarium, we sadly said goodbye to Mike, Kim & Ethan. They headed back to San Jose and we continued southward towards Santa Maria. There were 2 good “Katelyn” moments on the way to Santa Maria. The first happened while I (Bryan) was waiting with the kids in the car while Joanne was getting some groceries before leaving Monterey. Katelyn was having a bit of a tantrum and started talked to me in a whiny voice. She has been going through a bit of a whiny phase lately and Joanne and I have been getting a little tired of it. I turned to her and said “Katelyn, I’m sick of your whining”. She looked at me a little puzzled, then after a few moments said “Dad, we need to take you to the hospital”. Surprised, I asked her why she said this. She said, “Because you’re ‘sick’ of me whining”. The second moment came at dinner. We had stopped for a quick supper at Burger King along the highway. I told Katelyn that I wanted her to eat 2 chicken nuggets. She said OK then started to eat. After a couple minutes she asked me “How about 2 french fries?”. I said, “sure, you can eat 2 french fries with your 2 chicken nuggets”. She answered “no, just 2 french fries”. I see she is developing some negotiation skills.

We arrived in Santa Maria after dark so we don’t know how nice it is. We are thrilled with our hotel room though. We’re at the Holiday Inn Hotel & Suites. We’re staying in a really nice 2 bedroom suite that has a kitchenette and breakfast bar. It also has high speed Internet access. We don’t have to check out until noon so we’re thinking of hanging out at the pool here in the morning.

Happy 6th anniversary to our good friends Matt & Dawn.

Joanne posted many more photos from our trip to the Web Shots web site.

Tomorrow we arrive in Santa Monica (Los Angeles / Hollywood).

Sunday, September 26, 2004 11:45 AM CDT

*** Click on "View past journal entries" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

*** Click on the California pictures link at the bottom of this page to see more photos from our trip. Or you can copy and paste this address into your web browser: http://community.webshots.com/scripts/editPhotos.fcgi?action=viewall&albumID=192615305&ran=28421

<<< Day 4 – Saturday, September 25, 2004 >>>

San Francisco

Today, we took a road trip to San Francisco with Mike, Kim & Ethan. We had great weather with gorgeous blue skies and not a cloud in the sky all the way there. Once we got to San Francisco we worked our way down to Fisherman’s Wharf. On our way there, we got to drive on the unbelievably hilly streets of San Francisco. You can’t really appreciate just how ridiculously steep they are until you see them for yourself. It’s kind of surprising that they chose to build a city in this terrain.

Fisherman’s Wharf is the major tourist trap in San Francisco. It’s a really neat place on the waterfront. There are lots of restaurants and shops and a great view of the Bay. Alcatraz is in plain view from the shore. We had lunch on the docks (Pier 41) then walked over to Pier 39, which is basically a boardwalk with a bunch of shops, ice cream stands etc. It has a bit of a carnival feel to it with cotton candy, hot dogs and a giant double-decker carousel. One of the cool things about Pier 39 is that on one side of it, you have a view of a bunch of sea lions lounging in the sun. There must have been a hundred sea lions or more “arfing” away. (By “arfing”, I’m talking about the sound that sea lions make… say it out loud… “Arf”) After checking out the sea lions we took the kids on the carousel.

It’s surprising how much time we spent just wandering about Fisherman’s Wharf. By the time we finished there, it was already 3:00pm. We headed back to our car and decided to check out a couple more attractions before heading home. One of the more unique things we saw was “Crookedest Road” which is a section of Lombard St. that has an extremely steep vertical drop to it. To accommodate the steep slope, they made this part of the street wind back and forth sharply down the hill. It’s only a 30 second ride, but it gives you a stunning view of the Bay and makes you feel like a genuine tourist.

After “Crookedest Road” we headed over to the Golden Gate Bridge to take a few photos. Traffic was really thick so it took us quite a while to get there. Once we got to it, we were rewarded with a breathtaking view of…. incredibly thick fog. The bridge was completely shrouded in fog. If you looked closely you could sort of see one of the footings. Oh well, we assume it isn’t a whole lot different than seeing the Ambassador Bridge in Windsor.

After “seeing” the bridge, we headed for home. It was a great day. On the way home we asked Katie what her favourite part was. She told us that her favourite part was seeing the “Wild Aminals” (not a spelling error, but how she pronounced it). By “Wild Aminals” she was referring to the sea lions.

Tomorrow we visit Monterey.

Arf!

Sunday, September 26, 2004 11:45 AM CDT

*** Click on "View past journal entries" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

<<< Day 4 – Saturday, September 25, 2004 >>>

San Francisco

Today, we took a road trip to San Francisco with Mike, Kim & Ethan. We had great weather with gorgeous blue skies and not a cloud in the sky all the way there. Once we got to San Francisco we worked our way down to Fisherman’s Wharf. On our way there, we got to drive on the unbelievably hilly streets of San Francisco. You can’t really appreciate just how ridiculously steep they are until you see them for yourself. It’s kind of surprising that they chose to build a city in this terrain.

Fisherman’s Wharf is the major tourist trap in San Francisco. It’s a really neat place on the waterfront. There are lots of restaurants and shops and a great view of the Bay. Alcatraz is in plain view from the shore. We had lunch on the docks (Pier 41) then walked over to Pier 39, which is basically a boardwalk with a bunch of shops, ice cream stands etc. It has a bit of a carnival feel to it with cotton candy, hot dogs and a giant double-decker carousel. One of the cool things about Pier 39 is that on one side of it, you have a view of a bunch of sea lions lounging in the sun. There must have been a hundred sea lions or more “arfing” away. (By “arfing”, I’m talking about the sound that sea lions make… say it out loud… “Arf”) After checking out the sea lions we took the kids on the carousel.

It’s surprising how much time we spent just wandering about Fisherman’s Wharf. By the time we finished there, it was already 3:00pm. We headed back to our car and decided to check out a couple more attractions before heading home. One of the more unique things we saw was “Crookedest Road” which is a section of Lombard St. that has an extremely steep vertical drop to it. To accommodate the steep slope, they made this part of the street wind back and forth sharply down the hill. It’s only a 30 second ride, but it gives you a stunning view of the Bay and makes you feel like a genuine tourist.

After “Crookedest Road” we headed over to the Golden Gate Bridge to take a few photos. Traffic was really thick so it took us quite a while to get there. Once we got to it, we were rewarded with a breathtaking view of…. incredibly thick fog. The bridge was completely shrouded in fog. If you looked closely you could sort of see one of the footings. Oh well, we assume it isn’t a whole lot different than seeing the Ambassador Bridge in Windsor.

After “seeing” the bridge, we headed for home. It was a great day. On the way home we asked Katie what her favourite part was. She told us that her favourite part was seeing the “Wild Aminals” (not a spelling error, but how she pronounced it). By “Wild Aminals” she was referring to the sea lions.

Tomorrow we visit Monterey.

Arf!

Saturday, September 25, 2004 0:14 AM CDT

*** Click on "View past journal entries" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

<<< Day 3 - Friday, September 24, 2004 >>>

--- Morning
Today we hung out in the San Jose area. We visited the Children's Discovery Museum in San Jose. This is a really cool place for kids. They have all kinds of exhibits that the kids can climb on, splash in and play with.

--- Afternoon
After the museum, Joanne and Kim took the kids home for a nap. I took a little trip to Lenscrafters. I'm not sure why, but the coating on my glasses has gotten badly scratched in the past couple weeks, to the point that I could barely see. Thankfully, the Lenscrafters in San Jose had the lenses I needed in stock and were able to hook me up within an hour. This was great. Even at Lenscrafters (where they make glasses for most people in an hour), I typically have to wait a few days to get mine because I have such a strong prescription.

--- Evening
We had another great dinner prepared by Kim. After dinner, the girls (Joanne and Kim) took off to do some shopping while Mike & I put the kids to bed. Once the girls got home, Mike & I slipped over to the Barnes & Noble so I could post these updates.

Tomorrow is San Francisco. Can't wait!

Saturday, September 25, 2004 0:04 AM CDT

*** Click on "View past journal entries" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

<<< Day 2 – Thursday, September 23, 2004 >>>

--- Morning
Today, we had to wake up at 4:45am (ouch!) to get to the airport on time. We made great time getting packed up, checked out and shuttled to the airport.Use the Sky Cap service to get our baggage checked and boarding passes printed. This was a quick and convenient way to do it.
At this point, it was only 6am, giving us a couple hours until our plane left. We had breakfast at the airport café then went through security. We had fun watching planes take off for an hour until it was our turn to board the plane.

We boarded our plane on time and were in Phoenix, AZ by 9:30am Phoenix time (12:30pm Windsor time)

--- Afternoon
Had lunch at “The Great Steak & Potato Company” (Philly Cheese steaks). We found a cozy corner to let the kids run and crawl around. We had to wait until 1:14pm for our flight to depart. It was nice to have a break from the plane, but it would have been nice had it been just a little less waiting.

--- Evening
Our flight left Phoenix on time and we arrived in San Jose around 3:00pm. We shuttled over to pick up our rental car.
Originally, we were given a Ford Freestar, which was cool because it had fold down seats in the back giving us tons of room for all of our luggage. However, when the manager went to install our car seats, he said “you don’t want this one”. Puzzled, we asked him why. He said he had found a couple of ants on the seat and that if he’s finding a couple there, it’s possible the van was infested with them. It was nice that he pointed this out. We were then switched to a Dodge Caravan that has built-in car seats. It has less space for luggage because the rear seats don’t fold down but we managed to squeeze everything in.
We arrived at Mike & Kim’s around 5:00pm. Kim made a delicious rib dinner for us. Katie and Bryan had a blast playing with Ethan while we caught up with Mike & Kim.

Saturday, September 25, 2004 0:00 AM CDT

*** Click on "View past journal entries" to see the other installments of our trip to California journal. Also, keep on an eye on the photos section.

<<< Day 1 – Wednesday, September 22, 2004 >>>

-- Morning
Katie had an appointment with Dr. Cairney in London for a checkup (1 month off-treatment). Her neutrophil count was lower than expected (1.0) but the rest of her counts were within normal range. After her appointment, the staff at the PMDU and the Child Life workers came in to the exam room and had a little “end of treatment” celebration. They presented Katie with a banner signed by the staff and a certificate. They sang a special song for her.

-- Afternoon
Drove back to Windsor and picked up Bryan at Meme & Pepe’s

-- Evening
We crossed the border around 6:30pm. We tried to cross at the bridge but it was backed up all the way to the 401 so we decided to take the tunnel instead. We ad no trouble at the border. The customs officer was super friendly and wished us well on our trip.

We arrived at Baymont Inn & Suites in Romulus, MI at 7:00pm
We checked into our room and left for supper. Going for supper was a bit of an adventure because we made a wrong turn and ended up back on the freeway. Somehow, we ended up at the airport. It took a long time to drive up to the terminal and loop back around to the highway. Once we finally got back to the area our hotel was in, we stopped at McDonald's (Katie's favourite) and picked up our supper. After eating, we had a decent night sleep. (Once the kids finally settled down that is... Katelyn wouldn’t settle down until 11:00pm.)

Tomorrow we fly west!

Bryan

Friday, September 24, 2004 11:47 PM CDT

Hello from California!

This is Bryan. We are going to keep a journal of our trip to California, but we might not post every day. It depends on where we find Internet access. Right now I am sitting in a coffee shop inside a Barnes & Noble book store in Sunnyvale, CA. We'll post the entry for each day as a separate entry so you will have to use the "View past journal entries" feature.

<<< Introduction >>>

Katelyn’s treatment is over! She has been so wonderful throughout her treatment that we wanted to do something really special for her. We decided to take her on a trip to California. When we tell people about our trip, a lot of people ask us if this is Katie’s “wish” trip. It’s not. We are going to apply for a “wish” trip soon, but she won’t qualify for this until she is 3 years old. AML patients have about a 50% chance of relapsing after first remission. We don’t know whether she will be cancer-free for a month, a year or for good. If she were to relapse it would mean another extended stay in the hospital. Because of this, we didn’t want to delay in taking this trip.

We want to point out the fact that this trip was made possible thanks to the benefit that was held for Katie last February. Thanks again from the bottom of our hearts to everyone that contributed to the benefit. We are thrilled to be able to provide our own little “wish” trip for Katie.

Bryan

Thursday, September 16, 2004 8:06 PM CDT

Hello everyone,

Just a really quick update today as I am in the middle of watching the Canadian Idol finale.

I just thought this was too important to share with all of you. I know many of you have followed Katie's progress closely and we really appreciate all you love and prayers. We could never get through this with all of you. So I thought you all would be happy to hear that today Katie had her Hickman line removed. As I have mentioned before, that this is really symbolic for us because it finally feels like she is really done her treatment.

I look back and can't believe how quickly life can change. I know we have said this many times but it is something we have learned, don't put off till tomorrow what you can do today. Our journey has been long, but it is not over. Now we start a new way of life. Yes, we will appreciate every day. But most of all, we will appreciate our children, our family and our friends (new and old). We have met many people on our journey and made many new friends. We hope that all of you know how much you mean to us and how much you have touched our lives. Please keep praying for Katie so that she may enjoy a long and joyous life.

I will go for now as Canadian Idol is nearing the end, I don't really have a favourite. I will update again soon.

Love,

Joanne

P.S. This is a poem that I have read many times and it brings a tear to my eyes every time because it hits so close to home. I thought it would be nice to share it with you.

The Littlest Soldiers

The medals on our chests
Are porta-caths for meds
Helmets won't stay on
'cause no hair is on our heads.

Our weapons of destruction
We take every day
We fight the battle within us
While we struggle on to play.

We fight with honor and courage
No marine could do as well
We are only little children
Living in this hell.

So bring on the medals
The Purple Hearts of Wars
The Gold Cross, The Silver Star
To place upon our scars

For We are the Children of Cancer
No one has fought so hard
But every day we struggle on
Our life is our reward.

Cheryl Jagannathan

Thursday, September 9, 2004 1:30 PM CDT

Hello Everyone,

I know Bryan just updated all of you on Monday, so you all know what we have been up to. But, I thought everyone would like to hear more good news about Katie. It looks like she will most likely have her tubes removed before we go on vacation. This is very significant for us for two reasons. The first reason is that although she finished her treatment August 2, it just didn't feel like it was over. But with her tubes coming out, it really seems like her treatment is done. The second reason is that now Katie will be able to go swimming, something she has been looking forward to all summer. Also, Katie and Bryan will be able to play like two normal siblings. Up till now, I have been worried because Bryan is always so curious. Every time he sees Katie with her shirt off, he crawls as fast as he can and tries to get her tubes. Katie never seemed bothered by her tubes, even when we would explain why she couldn't go swimming. She would just accept it (which for those of you that know Katie well, she doesn't usually accept no for an answer).

Katie loves being at home. Since we have been home, her imagination has blossomed. She continues to amuse and amaze me everyday. Today she was sitting in the living room and informed me that she was going to pick up her cousins Zack and Brayden and they were all going to the hospital, because they were not feeling well. Apparently, she said their neutrophils were low. So off she went and before I knew it, they were picking up Auntie Angie and Uncle Jake. Uncle Rhonda and Aunt Kevin (her words not mine) were already in the van. I told her I didn't think everyone was going to fit in the van, but she insisted she had plenty of room. They then proceeded to pick up Meme, Pepe and Aunt Care and Katie said there was still room for me if I wanted to go.

Everyday I catch her talking to one of her imaginary friends. I've caught them arguing who was going to sit in a particular spot on the couch and yesterday I had to baby sit them while Katie went to the Baby hospital to get a baby (I think she was remembering when we had Bryan and she stayed with Grandma). I guess she thinks babies come from the Baby hospital.

Thank you for keeping our family in your thoughts and prayers. Please don't forget to drop us a line either in the guestbook or you can email us at the email address below.

Take care for now,

Joanne

Monday, September 6, 2004 11:01 PM CDT

Hello everyone,

This is Bryan. Here's a little news about what he have been up to lately:

- We had an impromptu BBQ on Saturday afternoon. Katie had a blast playing with her good friends Braedan and Chelsea. Quote of the night.... during dinner Katie stood up on her chair. I told her to sit down and eat. She replied "No, I'm a teacher. Teachers don't eat.". Hmmmm, teachers don't eat, news to me :) Also news that she is a teacher.

- Katie is staying at Grandma's house overnight tonight. Grandma has been looking forward to doing this for a while. I don't know all of the details, but apparently Katie has a fresh coat of nail polish on her finger and toe nails now. She also got to try out her very own tube of lipstick. I imagine the result was similar to the picture that is currently at the top of the home page.

- Joanne and I went to the Tigers game today with our friends Dave and Christina. For those that don't know me very well, I'm a major sports fan with the Lions and Tigers being very close to my heart. Needless to say I was pretty jacked up about going. We had a good time and got a great deal. It was only $8 per seat and that included a hot dog and a Pepsi. Interestingly, we bumped into Shelly on the Tunnel Bus. Shelly is a nurse that works at Hotel-Dieu, and also comes once a week through home care to change Katie's dressing. By the way, the Tigers beat Kansas City 7-3.

- Katelyn's next checkup is scheduled for Sept. 22. She is supposed to get her Hikman line out that day. Hooray!

- As long as everything is cool at the checkup, we're leaving for California on Sept. 23 to visit Mike & Kim, and to take Katie to the San Diego Zoo. Learned a lesson about travelling though.... when you see cheap flights book them right away. The prices we were quoted last week are double this week. Doh!

- Our 1996 Red Ford Taurus is for sale. It has almost 160,000 kms. Asking $4,500 OBO, safetied, e-tested. If anyone is interested let us know ASAP.

Cheers,

Bryan

Monday, August 23, 2004 9:12 PM CDT

Hello everyone,

This is Bryan. I'm not sure very many people read our journal anymore now that Katie's treatment is winding down, but I thought I would post a little news anyway. Katie is still at Hotel-Dieu but should be coming home tomorrow morning. Her neutrophil count was 0.8 today. I think London would have discharged us today but Windsor wants us to wait another day. Oh well, what can you do?

Now that Katie's blood counts are pretty much recovered, this final round of chemo is officially over. Can't wait for her line to come out in a few weeks so she can splash around in the tub and swimming pool the way she used to.

It's sort of a strange feeling right now looking back at the past 9 months. I think we feel a little numb right now... not sure how to feel... not sure what's next for us. We are extremely hopeful that Katie never has to deal with her disease again but in the back of our minds is the very real prospect that this is just an in-between stage. It sounds cliche but it has definitely taught us to appreciate every day we have together and to take joy in the small things in life. Personally, I find I am far lessed stressed about life in general than I used to be. I don't worry about things like work or money anymore. I've definitely learned that worrying about tomorrow only serves to waste away today.

Katelyn is so special to me. One small blessing to all of this happening is that I had an opportunity to spend so many hours with her just the two of us. She has so much charisma and is so full of life. I can spend hours just watching her play and I never get bored of it. I love talking to her and love seeing her grow and learn. She has so much to offer this world. It amazes me that she never complains no matter the circumstances. Even after weeks of being cooped up in a hospital room, she still thinks only of what friends might be coming to visit her that day and what fun there is to be had.

Another blessing to this experience is the dozens of wonderful people we have met. From families going through the same ordeal, to caring doctors and nurses, to family and friends that have reached out to us. I have been especially touched by all the kids I've met that are battling cancer. When I look into these kids eyes I don't see fear, sadness or despair... I see life. They show so much courage and they don't let cancer stop their lives. Really, these kids are my heroes. Anytime little problems creep into my life I think of them and say to myself that things could be a lot worse right now. Those kids don't let their sickness get them down so why should I let something silly like a fender-bender upset me.

I am so excited that my family will be together again soon. I miss Katie, I miss Joanne and I miss little Bryan. It seems silly to say that, because it's not like we haven't been together through all of this. We've spent so much time apart though and you sort of start to feel like strangers after a while.

Anyway, what started out as a little news about Katie has turned into a bit of a ramble. Thanks for reading this and for caring about us. One final note is to ask that you say a little prayer for Hannah Young and her parents John and Cathy. They have been away from home since January of this year. Hannah is still dealing with the complications that came along with her bone marrow transplant. We pray that things will improve for them soon and they can finally head home.

Love and prayers,

Bryan

P.S. We are home now!!

Tuesday, August 17, 2004 2:02 PM CDT

Hello Everyone,

Just a quick update to let everyone know what we’ve been up to. Well on Sunday morning, Katie woke up at 5am with a fever so we called London and were advised to bring into emergency here in Windsor. So off Katie and I went to the hospital. Of course as usual, by the time we got there, Katie's temp had dropped to normal. However, because she did have a fever, they had to admit her and start her on antibiotics. So they took blood cultures and a urine sample and started her IV. We do our best to keep Katie occupied, but she is getting quite restless. He neutrophils are still too low and she has to stay in her room at all times.

We got the results from her cultures back today and it appears that her urine is growing e. coli bacteria. So they switched some of her IV antibiotics and we will have wait for her neutrophils to come up before they will switch her to oral antibiotics and send us home.

It has been a long 2 days so I will keep this short.

Take care for now,

Joanne, Bryan, Katie and Bryan

Saturday, August 14, 2004 7:37 AM CDT

Hello All,

There isn't much to report, Katie is still doing well. Her last round of chemo has kicked in and she is now neutropenic (can't go into crowds). We were lucky however; we were able to go Bryan's family reunion in London on Saturday August 7, as her counts had not yet dropped. We were so glad that we could take her, she had soooo much fun. It was so nice to see her be a little kid again and play with other little kids. From the time that her friend Jenna arrived, then Emily, then Erin and Derek (all cousins really but Katie refers to them as her friends) Katie did not stop. It amazes me that Katie is comfortable playing with children of all ages. She loves playing with the kids her own age, but she also loves playing with older children. On Friday night, the day before the family reunion, we went to Bryan's parents, where we had a great time catching up with Uncle Ted, Aunt Cindy, Ryan and Britany who are here from Vancouver. Katie kept running over to Bryan and I and saying "Mom, Dad, I'm having fun" I think I almost started crying I was so happy, it felt so good to hear her say those words. At the family reunion, we barely saw Katie except for the occasional "Hi mom or dad" she was having too much fun being entertained by the older kids and playing with the younger kids. Sunday was out last day of "freedom" Bryan and I decided that after Sunday, we should probably keep Katie away from crowds as her counts were surely dropping. So on Sunday, Katie, little Bryan and I went with Meme, Pepe and Aunt Care to Amherstburg where my cousin Suzanne was performing in outdoor concert. What a beautiful voice she has, we had a lot of fun. Because it was an outdoor event, Katie was able to run around and dance to her hearts content, it was very cute. The rest of the week we pretty much stayed at home and it is probably a good thing too, as I said at the beginning, she is now neutropenic. Now we just hope she doesn't get a fever or we will be back in hospital for a few days.

Thanks for checking in and feel free to leave us a message of hope. And don't forget, if you have any fun or funny Katie stories, please post them in the guest book.

Love,

Joanne, Bryan, Katie and Bryan

Tuesday, August 3, 2004 8:11 AM CDT

Hello Everyone,

It is with great pleasure that I let all of you know that Katie has finished her last round of Chemotherapy. Now we just have to get through the next month or so and by then her blood levels should be back up to normal. The doctor has warned us that we will probably be back at the hospital within the next few weeks a fever as most kids get fever at some point before their counts recover. But somehow it doesn't seem as bad because we know that if she does get a fever, it will probably mean back in the hospital for only a few days.

We are so thrilled to have Katie home and done her treatments. We would like to thank everyone for their love and support. It really warms our hearts to see that so many of you care for Katie. While Bryan and I are very optimistic that Katie will beat this and will never have to go through this again, we are also realistic in knowing what her future could be. Please continue to keep Katie in your prayers so that she may enjoy a healthy future.

Bryan and I were talking last night and we were thinking about the last 8 months and all the memories we have. I know it may sound strange to many of you, but we have so many good memories. Here a few memories that we thought of: The Rosie doll incident-- Rosie is a teaching doll, she has a Hickman line like Katie and she has removable hair in order to explain to children that they will lose their hair during chemo. Well when Katie was introduced to Rosie, she instantly like her and wanted her to have a sleepover in her crib. That night, before she went to bed, Katie was playing with Rosie and happened to grab her by the hair. Rosie fell to the ground while her hair stayed in Katie's hand. Katie was a little startled (to say the least) and had a good cry. Bryan and I had a hard time trying not to laugh because it really was a funny scene. Needless to say, Rosie spent the night at the nurses’ desk instead of in Katie's crib. Despite this incident, Katie and Rosie did become good friends and Katie would often ask if Rosie could join her in the playroom at playtime. Christmas-- Yes we spent Christmas at the hospital. I know that may sound like a downer to many of you, we actually put in the good memories column. In my family, it is tradition to have a fondue on Christmas Eve so Bryan's mom actually brought everything up to our room and we all enjoyed a fondue diner. We were quite the site with all the stuff we had up there for Christmas. Santa brought all the presents and stored them in the bathroom; the nurses had a good laugh at the site of our bathroom full of presents. If you have other memories you would like to share, please include them in the guestbook.

Although I wish it could have been me going through this rather than Katie, I can't help but feel a little thankful the experience. It really made us realize what is important. The most important thing in this world is FAMILY and the TIME you spend with it. We have learned not put off till tomorrow what you can do today, because you never know what tomorrow will bring.

Well I will quit rambling, I hope you all had a nice long weekend, I know we did.

Love,

Bryan, Joanne, Katie and Bryan

P.S. Today, Bryan turns 29. Lets hope your last year in the twenties beings you much good fortune and happiness.

Wednesday, July 28, 2004 8:27 PM CDT

PHEW!! We got Katie’s blood work done Monday and all is well. Everything is back up YEAH!! Not only are her counts back up, they are high enough to start chemo; finally we start her last round… well maybe. We are heading back to London on Wednesday morning, they will do her blood work again then and as long as her neutrophils are 1.0 or above, we will be admitted for her last round of chemo. The reason I say IF they are above 1.0 is because different machines can yield different results. So we may get to London and her neutrophils may be slightly lower than one. It doesn’t really matter to us, we are just so excited that her counts are up which means she is still in remission. But I will tell you, we were really scared and we found out how hard it will be if we have to go through this again. In some ways it was a little scarier this time than it was at the beginning of December when we were waiting to find out what type of Leukemia she had. Maybe it is because we are both aware of what it means if she relapses and we know that it will be much more difficult for Katie. On the other hand, I think we were a little calmer, only because we know of a few people who have relapsed and have had a bone marrow transplant. We see how they have handled it. In particular, I think of little Hannah and what an amazing little girl she is. Katie and Hannah are the same age and I see Hannah in the hall and talk to her and read the stories that John and Cathy tell about the things that Hannah comes up with and she reminds me so much of Katie and I realize that although it has not been easy for Hannah, she has remained a happy little girl doing a lot of things a typical 3 year old does and a lot of things a typical 30 year old does as well.

The first part of this entry was written on Tuesday, so it is a little out dated. But rather than rewrite the whole thing, I thought I would share my thoughts with you.

We are now in London and have started Katie’s last round of chemo. It was quite a long day, so I will keep the rest of the entry short as I am getting tired. We arrived at the hospital around 8:30 am. Katie had to have an LP (Lumbar Puncture: they inject a drug into her spinal fluid) before she go up to the floor and start her chemo. On LP days, she cannot eat or drink anything before the procedure, and after the procedure, she has to lay flat for at least an hour afterwards (it is suppose to be 2 hours but the doctor gives her a little break: trying to keep a 2 almost 3 year old down is not an easy task). So we got up to Katie’s room around 3 o’clock and we all had a late lunch/early supper. After we ate, Bryan left to head back to Windsor and Katie continued her usual rounds, making sure everyone knew she was back. Because this is Katie’s last round, we decided to give the nurses a little something to remember Katie by. So we made up some fridge magnets and gave them to the nurses, I think they quite liked them. (Don’t worry Connie, I saved one for you and Jamie).

Well I guess I should go, my thoughts are all jumbled now, I think I need sleep. I will update again soon and thanks for checking in. Sorry it took me so long to update, I’m sure many of you have been waiting to hear about Katie’s counts.

Joanne, Bryan, Katie and Bryan

Friday, July 23, 2004 5:35 AM CDT

Sorry it has been so long since my last update. We have been quite busy. The original plan was to have Katie's blood levels tested on Tuesday and possibly start chemo on Wednesday. Well, Katie's body had other plans. On Monday morning, Katie woke up at 5am with a bit of a fever, not very high but a fever none-the-less; a fever for her is anything above 37.5 Celsius, hers was 37.6. The protocol is that when she only has a slight fever, we are to wait half an hour and take it again; if it hasn't gone down we are to call the hospital. When I took it again, it had gone up to 37.8. So we phoned the doctor on call, I think we woke her up. She advised that since Katie's neutrophils were so low last time we had them checked, she wanted us to go to London. So we packed everyone up, dropped Bryan off at my mom and dad's and off to London we went. When she is neutropenic and she gets a fever, the protocol is to have 48-hour blood cultures done. If after 48 hours the blood cultures come back negative and she has been fever free for 48 hours, she can go home. Bryan and I both thought that we would get there, find out that her neutrophils were high enough to start chemo and she would start her next round. BOY WERE WE WRONG! It turns out that her neutrophils were at zero. I know that last week her neutrophils were at 0.1 and it may not seem like a big difference, but there is a big difference between zero and 0.1 neutrophils. When the doctor came in she looked quite distraught as she explained about Katie's blood levels and how they should have at least started to recover by now. She didn't come right out and tell us at first, but Bryan asked point blank "does this mean that she has relapsed?" These are the words I most fear. Looking very concerned, the doctor explained that this was quite possibly the reason her body had not yet recovered. They wouldn't know until they did a bone marrow aspiration, but this could not be done until the results from the blood cultures were back. Needless to say, Bryan and I were... I'm not even sure how to explain it, we were scared, sad, angry, and I think I was somewhat in denial. Maybe I just didn't really believe that she had relapsed. Anyways, we were admitted and were brought up to our old stomping grounds at 7 west. Everyone was happy to see Katie again as most of them had not seen her for at least a couple of months. Although we were quite distraught, were very happy to see everyone upstairs. I know I’ve said this before, but I will say it again; the people that work in the clinic (PMDU) and on 7 west truly are special people. They always make Katie feel very special.

On Tuesday morning, the doctor came in and gave us a little hope. She explained that on Monday when she came in to talk to us, she had thought (as did we) that it had been three weeks since Katie had finished her chemo medication when in fact it had only been two weeks. She explained that two weeks is still within normal recovery time. She also explained that the rest of her counts were normal (which we knew), so if it was a viral infection that caused the fever, it was possible that any neutrophils she had were fighting that infection and so were not showing up in her blood work. And then on Wednesday, we got the results back from her blood work and there were 0.1 neutrophils. We could hardly contain our excitement. After careful consideration, we, along with the doctors decided to hold off on doing the bone marrow aspiration since it seems as though her body may be recovering. Although the bone marrow aspiration is a fairly simple procedure, it means that Katie would not be aloud to eat or drink anything until after the procedure (which usually gets done in the early afternoon). And also, it was explained to us that even if they did the procedure and it showed that Katie was still in remission, if her counts do not recover by next week, they will have to do the procedure again. Rather than having to possibly put her through it twice, we opted to wait and see what this week will bring. We are still nervous though as she still has a long way go, those neutrophils have to climb to 1.0 before they can start the next round. But we are breathing a little easier now, although I still catch myself holding my breath at times. We have to take her to Hotel Dieu hospital on Monday for blood work and I’m sure it will be an extremely long morning until we get those results back. For now, all we can do is pray.

Please say a little prayer for Katie and I will let you know as soon as possible what we find out on Monday.

Joanne, Bryan, Katie and Bryan

Thursday, July 15, 2004 8:39 AM CDT

Hello all,

Well, here is the verdict; we are still at home. On Tuesday, Katie’s blood counts were not even close to being high enough to start the next round. In fact, she is now neutropenic (her body is not able to fight anything on its own). So now she is not able to go out into large crowds. This is disappointing to us as it seems like a step a backwards. The doctors did say however that this is normal and there is nothing to be concerned about. The rest of her blood work is fine, it’s just those darn neutrophils and unfortunately, this is something her body has to produce on its own (neutrophils can not be transfused). So we just wait.

We did have to go back to London yesterday though, Katie had an Echo Cardiogram scheduled and it could not be rescheduled. So we left yesterday morning at 7am and were back in Windsor by 2pm (I think this was one of our shortest visits).

Although we are happy to have the extra time at home, it is disappointing that we can’t start the next round. We just want to get this last round done with so that Katie can start her recovery and enjoy being a normal little girl.

Speaking of being normal...The other day, Bryan and I were sitting listening to Katie play and I caught a glimpse of myself. For those of you that were at our wedding, you may remember my family mentioning my imaginary friend Johnny. Well Katie has several imaginary friends; they are “the girls”, “the boys”, “the mom” and “the man”. Well on this particular day, “the boys” were in the bathroom going potty and Bryan and I were told not to go in the bathroom. Katie kept going up and down the stairs to check on “the boys”, finally when they were done, Katie turned to us on her way up stairs and said, “I’m going to wipe them”. Well Bryan and I just burst out laughing. I swear Katie thinks these people are real; she even turns to look at them when she talks to them. We sometimes wonder if she is a little crazy, but my mom assures me that I used to do the same thing when I was little. I guess it must be normal than.

Anyways, I better get going. I have to see what Katie is up to, she has been quiet for a while now and as many of you know, Katie is never quiet. She must be into something…

Thanks for checking in,

Joanne, Bryan, Katie and Bryan.

Thursday, July 8, 2004 8:06 AM CDT

Just to keep all everyone updated, we are are still in Windsor. When we had Katie's blood work done yesterday, her neutrophils were still not at 1.0. So, we wait. The plan is to have her counts done on Tuesday again in Windsor and if they are high enough, she will be admitted in London on Wednesday. If you could all say a little prayer that her counts are high enough, we would really appreciate it. We are so close to the end of treatment and would like to get it done as soon as possible.

I will keep Tuesday update posted, as I'm sure many of you didn't get a chance to read it:

Tuesday July 6, 2004

I last updated you on Sunday and at that time; we had hoped that Katie would start her chemo on Wednesday. Unfortunately, when we got the results back from her blood work on Monday, her Neutrophils were not quite high enough to start the next round, (they need to be 1.0, they were only 0.7). We are scheduled to have her blood work done again on Wednesday morning here in Windsor and if they are back to 1.0, we will be headed back to London to start treatment on Thursday. This news is a little disappointing as we are looking forward to getting back to a normal life. Although, it will be a new normal because when you have gone through something like this, your life is forever changed... possibly for the better. I admit that there are days when I wish this had never happened but then I think about all the wonderful people we have met and the friends we have made. Don't get me wrong, I would not wish this on anyone, no child should have to go through what Katie and all the other children suffering from this dreadful disease have gone through. But the people we have met have enriched our life.

I will stop rambling now. Thanks for checking in and please leave us a message, we get so excited when we have a new message.

Joanne, Bryan, Katie and Bryan

P.S. If you missed the update on Sunday, you can read it by clicking on: read past journal entries.

Tuesday, July 6, 2004 8:34 AM CDT

I last updated you on Sunday and at that time; we had hoped that Katie would start her chemo on Wednesday. Unfortunately, when we got the results back from her blood work on Monday, her Neutrophils were not quite high enough to start the next round, (they need to be 1.0, they were only 0.7). We are scheduled to have her blood work done again on Wednesday morning here in Windsor and if they are back to 1.0, we will be headed back to London to start treatment on Thursday. This news is a little disappointing as we are looking forward to getting back to a normal life. Although, it will be a new normal because when you have gone through something like this, your life is forever changed... possibly for the better. I admit that there are days when I wish this had never happened but then I think about all the wonderful people we have met and the friends we have made. Don't get me wrong, I would not wish this on anyone, no child should have to go through what Katie and all the other children suffering from this dreadful disease have gone through. But the people we have met have enriched our life.

I will stop rambling now. Thanks for checking in and please leave us a message, we get so excited when we have a new message.

Joanne, Bryan, Katie and Bryan

P.S. If you missed the update on Sunday, you can read it by clicking on: read past journal entries.

Sunday, July 4, 2004 3:28 PM CDT

Finally, I am able to sit down and update all of you. Although we really haven’t been that busy, it just seems difficult at times to get things done. So here is what we have been up to. Last time I wrote, the kids were heading to their Grandparents and Bryan and I were heading to Niagara Falls. On Saturday, Katie and Bryan had a lot of fun with Meme and Pepe going to yard sales. Katie didn’t quite understand the concept. My mom said every time they would leave a yard sale, Katie would ask where they were going, the reply was always “to another yard sale” and Katie would ask, “where’s the yard sale”. She had fun anyways and told me all about it when we got back home. Saturday afternoon they were off to Grandma and Grandpa’s. To Katie’s delight, they had supper at McDonalds then home to bed. Katie was so excited she got to sleep in the same bed as Grandma. Grandma on the other hand got the short end of the stick, when Bryan woke up at 5:30am, she got up to give him his soother, when she came back to bed, Katie was sitting up in bed and decided she was no longer tired. Needless to say, they both had a nap in the afternoon. We arrived home to find Katie, Bryan, Grandma and Grandpa at the park. Katie was soooo excited when we pulled up at the park; she nearly leaped in to my arms.

As you are all aware, Thursday was Canada Day, we decided to get together with some friends and go to the parade down town. I’m not sure what Katie was more excited about; the fact that we were going to the parade or that we were bringing her wagon (this was the first time we used her wagon). Katie enjoyed the parade despite the fact that she had her hands over her ears almost the whole time (it was a little loud with all the sirens and stuff). She especially enjoyed the marching bands or bandages as she was referring to them. She was thrilled when her cousins Lauren and Dan went marching by (they are both in the Windsor Optimist Youth band). After the parade was done, we had a few friends back to our house for a BBQ. It is always nice to spend time with friends, so nice that on Friday we went to another BBQ at one of our friends house’.

This week Katie will be going back to London for her last treatment (YA HOOOOO!!!) Yes, there is an end in site. She will be admitted to the hospital on Wednesday (as long as her counts are good) and will have to stay in hospital for the duration of her treatment (no going back to Aunt Angie’s at night this time). As long as all goes well, we should be back home by Monday.

That’s all for now, thanks for keeping us in your thoughts and prayers. Please feel free to sign the guest book; we look forward to hearing from all of you.

Joanne, Bryan, Katie and Bryan

Thursday, June 24, 2004 1:42 PM CDT

Wow, what fun we had this past weekend. Saturday was great. I would have to say that the "Mare"-a-thon was a success. I can hardly wait for next year. Lucas and Katie were adorable; I think they both did a great job. We had so much fun riding in the horse and buggy around the track. And after all the walkers and runners were done doing their 5km's, a fire truck showed and gave rides around the track to all the kids who wanted to go. Katie took her turn, but was a little hesitant at first. Lucas got to ride in the front seat and even got to sound the sirens (I think this was the high light of his day). I think one of the highlights of Katie's day was being able to play with Lucas. Everyday since Saturday, she asks, "Where's Lucas?" or "What is Lucas doing?" She then proceeds to tell me what SHE thinks he is doing. According to Katie, today he was sleeping in his bed with his suckie (I'm sure that is what she was secretly hoping she could be doing at the time).

This weekend, Katie and little Bryan are looking forward to spending Saturday with Meme and Pepe and then having a sleep over at Grandma and Grandpa's house. Bryan and I are celebrating our 5-year anniversary by going to Niagara Falls.

Anyways, best get going, I hear little Bryan calling.

Love,

Joanne, Bryan, Katie and Bryan

Friday, June 18, 2004 6:30 AM CDT

Hello Again,

Yes imagine that, I'm actually updating twice in one week.

On Tuesday, Shelley (Katie's home care nurse) came to change her dressing and flush her lines. This must be done once a week in order to prevent infections. Katie always looks forward to having visitors even, especially if they are here specifically to see her, so you can imagine how excited she was. Shelley didn't even have her shoes off and Katie was already saying, "come in, come up stairs".

Wednesday was another exciting day, exciting for Katie that is. We had to go to the hospital here in Windsor to have her blood counts done. This means a poke in the arm for Katie, but I'm actually surprised at how well she does with this. She cried a little but I am usually able to distract her. While we were at the hospital, we met another little girl named Erica. Katie had such a good time playing with Erica that when we were given the green light to go home, Katie didn't want to leave. I eventually convinced her that it was time to go.

We had a very fun evening Last night; we went to the Windsor Raceway to go over what will take place on Saturday. Katie was so excited to see her friend Lucas whom she will be riding in the horse and buggy with. The two of them actually get along very well. They even went down and walked (or in Katie and Lucas' case ran) around the track. Needless to say, Katie was exhausted last night and was actually in bed by 7:30pm.

It sounds like Saturday is going to be a lot fun. So if you are not busy and would like to come out to the event her is the info:

Where: Windsor Raceway
When: Saturday June 19, 2004
Time: Registration for the walk starts at 8:00am, walk starts at 9:30am

For further information go to the Carla Can Sing website at www.carlacansing.com (you will see a picture of Katie and her Carla doll) or you can simply go to the links at the bottom of this page and click on the Carla Can Sing link.

I better get going, Bryan has been "singing" for a bit and he is getting louder.

Hope to see you on Saturday,

Joanne, Bryan, Katie and Bryan

Monday, June 14, 2004 1:23 PM CDT

Hello all,

I know, I know, it’s been so long since my last update, I apologize. I’ve been somewhat busy. We spent the better part of last week in London for Katie’s second last treatment. Everything went well at the hospital, Katie was glad to see her friends at the hospital and had lots of fun playing in the playroom. Despite the extreme heat on Tuesday we were able to go to Storybook Gardens in the afternoon after her treatment. Katie really enjoyed the visit, and was looking forward to going on a ride on the carousel. However, by the time we were done our visit, the carousel was closed for the day. I promised to take her the next day as long as it wasn’t raining. When we left the hospital on Wednesday, it was storming so needless to say, we didn’t get to the carousel. Next time we are in London we are definitely going on the carousel. After her treatment on Thursday, we returned home. And now we wait till July, when Katie will go back to London for her last treatment.

As always, we are enjoying being at home and doing all the normal things that go along with it. Saturday evening, I was able to go out with my girlfriends for a girls night out (it’s been a long time since we have had one of those). And on Sunday we had a BBQ to celebrate my mom’s birthday. Having said this, it reminds me that although we are doing many normal things, we can never be just totally normal. Because of Katie’s situation, we have to be very careful that she doesn’t get sick; one thing in particular that is extremely dangerous for her at this point is the chicken pox. Because the chicken pox is going around at the day care, Katie is not able to see her cousin Brayden and so my brother’s family was not able to make it to the BBQ. I have learned a lot through these past 7 months, and most of the experience, believe it or not, has been a positive one. But the fact that we need to limit who Katie can play with and when she can have visitors really bothers me. I know everyone understands, but it doesn’t make it any easier. Especially when Katie herself is always if so and so can come over and I have to tell her “not today”.

Enough about that, on to something more exciting, this Saturday June 19, Katie will be participating in a walk-a-thon for the Barbara Parry Paediatric Oncology Association. Not only will she be participating, she is going to be the spokes person for her favourite little doll Carla. Katie and Lucas Hammond (a little boy from Amherstburg who’s family we have befriended while in hospital) will be leading the walk-a-thon, riding in a horse drawn carriage. The walk-a-thon will be held at the Windsor Raceway, for more information, go to www.carlacansing.com (there is a link at the bottom of this page). If you are interested in doing the walk, please email me as I have extra pledge sheets. If you don’t want to do the walk, but are free that morning, come on out for a visit.

Well I better get going, I hear Bryan calling. Don’t forget to sign the guestbook, with all this rain we’ve been having, we could use a little sunshine in our lives.

Thanks for all your love and prayers,

Joanne, Bryan, Katie and Bryan

P.S. Don't forget to check out the "more photos" link at the bottom of the page.

P.S.S. I've added a new feature to the page, sorry if takes longer to load. Turn up the volume on your speakers. Leave us a message to let us know what you think.

Tuesday, June 1, 2004 8:00 AM CDT

Hello everyone,

Well last week at home went well. We were able to have a couple of BBQs even considering how much rain we had. On Sunday we left to go to London and had a nice trip up (although Bryan and I drove in separate cars. We took both up so I could have a car to go back and forth to the hospital this week). On Monday we went into clinic to start the next round of chemo, which is going to be out patient (we only have to be at the hospital until she is done her treatment for that day and then we can go back to Aunt Angie and Uncle Jake's.) Unfortunately, they couldn't get any blood return from Katie's lines, so this meant she needed a finger poke. She hates finger pokes, although I was surprised, she only cried until the actual poke was over. She was fine for the retrieval of the blood. Once the results from the blood work came back from the lab, we were told to go home as her neutrophils were only 0.8, not high enough to start the next round of chemo. We were surprised at this news, as we were not expecting this at all. When we went to the hospital here in Windsor on Friday to have her counts done, her neutrophils were 1.2 they only need to be 1.0 to start chemo. However we were assured that this is normal, because she was still taking an oral chemo medication (6TG) this past month at home, it sometimes causes her counts to go up and down. So Dr. Cairney advised us to come home and stop taking the 6TG and to return to London on Monday. By then her neutrophils should be high enough to start the next round. Oh well, we weren't too upset as this gives us another week at home. And we were able to catch up with Aunt Angie and Uncle Jake.

Oh well, I better go for now, the sun is shining and Katie is itching to go to the park.

Take care,

Joanne (Bryan, Katie and Bryan too).

P.S. Checkout this website www.carlacansing.com to see a photo of Katie with her favourite little doll Carla.

Monday, May 24, 2004 10.23am

Hello all,

It has been a pretty quiet week around here, not too much is new since the last time I updated. You know the usual, park, Meme and Pepe’s, play outside.

We decided to have another picnic yesterday. This time, Katie was not bothered by the bugs, but was obsessed with feeding the seagulls (I think the seagulls had more fries than Katie did). And last night, Bryan and a friend of his went to Grand Bend to see a concert and ended up seeing quite the light show, when a nasty storm hit (the concert was an outdoor concert).

We will have to go to Hotel Dieu hospital on Friday to have Katie’s counts done. As long as everything is ok, we will go back to London on Monday May 31 to start the next round of chemo. This round will be 4 days of outpatient, so we will be spending the evenings at Aunt Angie and Uncle Jake’s. Katie is really looking forward to seeing them as she has not seen them for a few weeks. Hopefully the weather will cooperate and we will be able to go to Storybook Gardens one afternoon.

I guess that’s all for now, I will update again soon.

Take care,

Bryan, Joanne, Katie and Bryan.

Wednesday, May 12, 2004 1:42 PM CDT

Hello,

Thank you to everyone for their words of encouragement in the guestbook. It means so much to us to see that we have so many people praying for our little angel. Just a quick update today to let everyone know how we are doing at home. So far, everything has been great. I had very relaxed Mother's Day, we visited family and had a great diner at Mel's (Bryan's sister). On Saturday as we were getting ready to go out, Katie got a little paper cut on her finger, it took me 15 minutes to get it to stop bleeding. I thought for sure her platelets were getting low. But, on Monday, we went to the "Different Hospital" (as Katie refers to Hotel Dieu here in Windsor) to get her blood levels checked. Everything was still within normal range. The only thing that was getting low were her red cells and there were still not low enough to transfuse. So were instructed to go back to Hotel Dieu on Thursday to have her levels done again. I'm sure that this time she will need red cells, and possible platelets (platelets tend to drop quickly). The rest of the week has been pretty relaxed as hope the rest of the week will be.

That's all for now, take care.

Joanne, Bryan, Katie and Bryan

Friday, May 7, 2004 2:35 PM CDT

Hello all,

Just a quick update to let everyone know that we are at home. If all goes as scheduled, we should be home till the end of June. Although, if Katie spikes a fever, we will have to go back to London. If all goes well, we will be back to London at the end of May for 4 days of outpatient chemo then back home again till the end of June. Then we will be back inpatient for most of July and if all goes well, we should be done treatment sometime in August (HIP HIP HOORAY!!!). Please continue to pray that Katie remains well.

We arrived back in Windsor around 4:30 on Thursday and had supper at Meme and Pepe's. Then we came home for a family evening (and an evening of Friends Finale). Today we went outside and coloured on the sidewalk with jumbo chalk and Katie rode her bike (well, I pushed and she sat on her bike, she isn't quite coordinated enough yet to ride it on her own). I got a picture of this so, make sure to look in the photo album and to connect to the more photos link at the bottom of the page.

Well, that's all for now, I will update again soon. Don't forget to sign the guestbook. Thanks to all of you who have signed the guestbook already and to those of you who sign in regularly. We love the messages, they give us hope and a smile.

Happy Mother's Day to all you Moms out there, make sure to relax and enjoy your day.

Joanne, Bryan, Katie and Bryan

P.S. Here is an inspirational Mother’s Day poem for all you Mothers, especially those of you who are a mother of a child with cancer. It is entitled Why Us:

Most women become a mother by accident, some by choice, a few by habit.
Did you ever wonder how mothers of children with cancer are chosen?
Somehow, I visualize God hovering over the earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger . . .
"Armstrong, Beth, son, patron saint Matthew."
"Forest, Marjorie, daughter, patron saint Cecilia."
"Rutledge, Carrie, twins, patron saint Gerard. He's used to profanity."
Finally, he passes a name to an angel and says, "Give her a child with cancer."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."
"I watched her today," said God. "She has that feeling of self-independence that is so rare and necessary in a mother. You see, the child I'm going to give her has its own world. She has to make it live in her world and that's not going to be easy."
"But Lord, I don?t think she even believes in you," said the angel.
"No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a step ordinary."
"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them."
"And what about her patron saint?" asks the angel, his pen poised in mid-air.
God smiles and says, "A mirror will suffice."

Author: Erma Bombeck (May 1980). (Although it was written as mothers of "handicapped" children.)

Tuesday, May 4, 2004 11:20 AM CDT

Hello all,

Sorry it took me so long to update this week, we’ve been quite busy. Because Katie’s count had started to recover early last week, we were able to get out of her room for some walks. On Monday, we had a nice walk with Katie’s neighbour, Hannah and her mom and dad. We were quite a convoy both girls in their masks and IV poles in tow. But Hannah was quite the tour guide, she showed us her favourite spots: we went to the ramp to listen to the birds chirp, then off to the sanctuary to watch the fireplace. Thanks Hannah for showing us all your favourite spots. After we left Hannah and her parents, Katie wanted to go back to the sanctuary where she found a new hiding spot, the coat closet.

Tuesday was such a miserable day outside, but that didn’t stop Tante and MonOncle from visiting. And on Wednesday, Tante came back for a visit and I was able to run to Wal-Mart for a few supplies.

By Thursday, Katie’s neutrophils were up to 0.5 that meant she was no longer neutropenic and she was able walk around without wearing a mask. This also meant that she could be unhooked form her IV except when she had to have her antibiotic. Because they had given her the antibiotics early in the morning, she was unhooked around 10am and didn’t have to get hooked back up until bedtime. We had such a nice day, Meme, Pepe and little Bryan came in around 11:30am and Tante came in not too long after. We all decided that a picnic was in order. So we had our lunch el fresco. What a surprise it must have been for Bryan to see his little girl’s smiling face, waiting for him outside as he got to the parking lot.

It was another Father/Daughter weekend for Bryan and Katie. Because I wasn’t here, I can’t tell you everything they did, but I did hear one story that made me laugh. I guess Katie and Bryan picked up some cookies at Tim Hortons and took them outside with them on their walk. They put the cookies in the bag and put it on a picnic table as Katie decided it was time to have a game of chase Dad. When they went back for their cookies a little while later, they found a squirrel sitting on the table eating the cookies (I wish we had a picture of that). Needless to say, as they walked back to her room, everyone they met along the way heard the story of the squirrel eating her cookie.

We were very lucky on Sunday, Katie was granted an LOA. So we took her to a 20th anniversary picnic that Camp Trillium was having. We had a good time making crafts and meeting some very nice families. After the picnic, the three of us went out for supper, it was so nice to get out for a while. Monday, Katie started her next round of chemo and will be done on Thursday at which time we will be able to go home. YES HOME!! Probably for around 3 weeks or so and the next round is outpatient as well. So, we should be home for the majority of the next couple of months, as long as Katie is well and doesn’t have any fevers. We will update again soon and let you all know how things are doing at home.

Don’t forget the guestbook, the messages are always appreciated.

Always hopeful,

Joanne, Bryan, Katie and Bryan.

P.S. Sorry, no new photos this week. But, we will take lots this week at home with the whole family.

Monday, April 26, 2004 2:18 PM CDT

Hello everyone,

Wow, what a fun weekend we had. Wednesday we started a new project, nurse Heather had a great idea to have everyone who comes in trace their hand. So now whenever someone comes into the room, they have to trace their hand on a piece of construction paper, then we cut it out and put it on the door (see photo in photo album).

Bryan took Thursday off of work so he and little Bryan could spend an extra day with us. Friends of ours were in London because their Daughter had to have an operation on her foot. Before heading back to Windsor, they dropped in to say hi. We spent the rest of Thursday just doing everyday stuff.

Friday, Bryan and Katie spent most of the day just the two of them while the baby and I went shopping with one of my friends. I’m sure that Katie and Bryan did the usual; tea party, puzzles, etc. Saturday when I arrived at the hospital, I walked into the room and there was this amazing fort that Katie and Dad had built (see photo). We had fun playing in the fort for a while and then Dr. Leaker gave us the ok to go outside for a walk for a little while. This was exciting news for Katie as she had not been outside since March 29. When Aunt Care arrived, we got our coats on and headed outside to blow some bubbles. It was such a beautiful day out. I think we were out there for at least an hour. Of course, Katie had to wear a hat as her head is very sensitive with no hair, but she looked so cute in her hat and sunglasses.

Even though Sunday was not very nice weather wise and we were not able to get outside, it was an exciting day nonetheless. Grandma and Grandpa Bedard came for a visit. Katie was so excited to see them. She was very excited about the seashells that they picked up for her in Florida. As Katie sees it, they picked them at the beach when they went swimming in the pond. Later in the afternoon, Aunt Gloria and Uncle Gary came up, and we had very lovely visit with them. It was nice to catch up, as this is the first time we have seen them since they came back from Florida. On Sunday evening, Katie and I walked Dad and Bryan down to the ramp to say our goodbyes. On our way back up, we met up with Stephen the porter and he let Katie call the dispatcher on his radio. Katie informed her that it was time for her to go to bed. After they said good night to each other, Katie asked where “the lady on the radio” was, Stephen pointed and said she was on the other side of the hospital. Katie thought he was pointing at the roof, so now, whenever you ask her where the lady on the radio is, she says she is on the roof. When we got back to our room, Katie decided that it was time to go to “school”. (It is amazing to see her imagination develop). She has been pretending that her crib is the bus and the elevator. We have to go over to her bed, and face the bars. She says, “we’re in the elevator” when she beeps, we get off the elevator and get on the bus (stand in the same spot). When we are on the bus, we stand there and bounce up and down (the riders on the bus go bumpety bump). When we get off the bus, we usually just play, but sometimes we read stories and last night she even slept at school (that was my way of getting her to got to bed). Last night when nurse Stephanie came in to do Katie’s vitals, we were on the bus, so she was informed that she had to wait till we got to “school” to do them. Once we got there, Stephanie then had to wait till Katie showed her the sea shells and then we all had to go wash our hands (Shephanie included) before Katie would stand still long enough to do her “arm hug” (the proper term for blood pressure). The nurses are always so patient with Katie and so willing to play along with her, they truly are very special people and we can’t thank them enough for everything they do for us and for the wonderful care they give Katie and all the children.

That’s all for now, please don’t forget to sign the guest book. And don’t forget to go to the bottom of the page and go to the webshots link for more photos of Katie and Bryan, I’ve added more today.

Joanne

Tuesday, April 20, 2004 9:55 PM CDT

Hello all,

Katie and I have had a lot of fun this week, she always amazes me with the things she comes up with. This week she informed me that she is a nurse, and that she can fix her machine when it beeps. (This was her response to me when I told her to stop trying to touch her machine. I told her only nurses are aloud to fix it). The puzzle craze has subsided a little, she is still doing them 5 or 6 times a day, but at least I got her some new ones on the weekend so now she alternates them. I am still surprised that she is able to do these puzzles on her own, they are around 25 or 30 piece puzzles! We have had a couple of tea parties, but I was informed that Katie likes her tea parties best with Dad. I asked Bryan, but he insists that he doesn’t do anything different than I do. I’m not sure, but I think he must fill her kettle to the max so she has more water to make a mess with.

Please note that below there is a link to a new website where we have added a few more photos of the kids. When you have a minute, please check it out. (just click on the 3rd link, the one entitled community.webshots.com/album/...) Last night, when I decided to add this link to the website, I was up late downloading the photos, it was around 1:30 am when I finally went to bed. Around 2:00 am I awoke to the sound of Katie’s voice- “Mom, I pooped” then her exact words were “Oh sorry, did I say pooped, I mean I peed.” It amazes me that a 2 year old could form this sentence at the best of time let alone at 2 in the morning. After this, though she was quite awake and had a difficult time trying to fall asleep. So needless to say, I did not get a whole lot of sleep last night and it is now getting late. So, I will say good night for now and I will update again soon. Please don’t forget to sign the guestbook, even if it’s just to say hi. And please let us know what you think about the new link.

Thanks,

Joanne

Monday, April 19, 2004 6:38 AM CDT

Hi All,

This is Bryan. I am back in Windsor today. I had a great weekend with Katie. Joanne was right about the puzzle craze. It's pretty much what we did all weekend. I'm very impressed with the complexity of the puzzles she is doing. The fact that she is patient enough to spend so many hours working on them, is testament to the fact that she isn't exactly the typical two-year-old.

On Sunday, we had a nice surprise when Tim & Janelle came to visit. Tim dropped in by himself at first, because Janelle was out shopping for maternity clothes. (We're really excited for their baby to get here!) After she was done her shopping, Janelle came up too. They brought us some beautiful flowers, fresh from their garden.

The Brennan's (Mike, Kim & Ethan) also came by on Sunday. Katie had a blast playing with Ethan. I think she really enjoyed having someone her own age to hang out with for a few hours. Finally, someone who understands that the ink from her stamps is way more fun when it's all over your fingers than when it's on the paper :)

Joanne came back from Windsor around 3:00pm or so. Katie was really excited to see her and didn't stop chatting with her until bed time. Apparently there are lots of good stories to tell after a weekend of puzzle making with Dad. I stayed at the hospital a little later than usual, so I could watch the first two periods of the Leafs game before hitting the road. The drive back to Windsor went by quickly, because I got to listen to the third period, and the two overtime periods on the radio on the way home. Too bad the Leafs had to let us all down again, because other than than that, it was a super weekend.

Bryan

P.S. If you would like to see more photos, click on the webshots link below

Thursday, April 15, 2004 2:59 PM CDT

Hello to all,

Not too much excitement this week. Katie has decided that puzzles are the latest craze. I think she spent pretty much all day Monday doing puzzles. Her favorite one this week is her Disney Princess puzzle. I think she was making this puzzle at least two out of the three days that Melissa from Child life came to pick her up to go to the playroom. (Melissa must think this is all I let Katie do). We make the Princess puzzle at least 5 or 6 times a day, I'm just about ready to hide it. I finally remembered to grab a few different puzzles from the playroom yesterday. But, I think I was being a little ambitious, one of the puzzles was a 35 piece puzzle (although Katie is very intelligent and very patient, it is still a little too hard for her), and I grabbed a Scooby-Doo puzzle that is almost all blue, it took Aunt Miriam, Aunt Angie and myself to do this one (Katie in the meantime was riding her horse around the room). Speaking of the horse, she had all of us riding it around the room too. I'm sure we must have been quite a sight, three grown women taking turns pretending to make a horse gallop around the room. As you can see, Katie has everyone wrapped around her little finger.

This weekend, Katie will be having another father daughter weekend while Bryan and I will be having a mother son weekend. I wonder what adventures are in store for us next.

Please don't forget to sign the guestbook, the messages are little rays of sunshine that always put a smile on our faces.

Love,

Joanne, Bryan, Katie and Bryan.

P.S. All the photos in todays update were chosen by Katie.

Sunday, April 11, 2004 10:54 PM CDT

Happy Easter to all,

Ok, this is going to be a long one.

We hope you all had a good Easter, we sure did. The Easter festivities started off on Thursday morning when the Easter Bunny made a visit to the hospital. I thought for sure that Katie would be completely opposed to a visit from the big furry bunny. But she surprised us all and agreed to have the Easter Bunny come and see her under these conditions:

1. The Easter Bunny could not come any closer than the nurse’s station.
2. The door to Katie’s room had to remain closed and we would look at the Bunny through the window.
3. She had to give the gift to Lisa (one of the Child Life workers) who in turn would pass the gift to Katie.

All three rules were followed and Katie was happy that she got to see the Easter Bunny, she even shook her tail for her. Yes, Katie has decided that Easter Bunny is a girl as she was wearing a green apron. So now anytime we refer to the Easter Bunny it is referred to as a she.

Friday was a very eventful day. It started off with Bryan and little Bryan arriving around 11:30am and then just as Katie was starting to get over the excitement of them arriving, in popped Uncle Kevin, Aunt Rhonda, Zack, Brayden and Aunt Carolyn. Katie was so excited to see her cousins and they had all kinds of fun playing together. Then we were told that we would be moving to a new room, one of the suites as we fondly refer to them. This was good news for us as we would be having more company on Saturday. So after a full day of visiting, moving rooms and enjoying some nice family time in the evening, little Bryan and I headed over to Aunt Angie and Uncle Jake’s for the night.

Saturday proved to be another exciting day. The morning was relatively uneventful. But just after 2pm, Grandma Bedard arrived. Katie was soooo excited to see her. We had a lovely visit and before long, Grandma Willy came up with Aunt Angie and Uncle Jake. A little while later, Grandpa showed up with Aunt Mel and Uncle Clayton. It was so nice of them to all come so we could enjoy our Easter diner together, and as you can imagine, it was nice to have a bigger room so that we could all visit together. In the early evening, my friend Lisa showed up for a surprise visit. Before we knew, it was time for everyone to start the trek back home. Once everyone had gone, we got ourselves ready for the big night.

On Sunday morning, we awoke to see that the Easter Bunny had passed and he, oops I mean she, had hidden a bunch of eggs around the room. It took pretty much all morning for us to find them all as Katie would be interested for about 5 minutes at time. As soon as she would find one egg, she would be more interested in playing with what was inside than she was in finding another egg. But, we let her go at her own pace, and I think she enjoyed it. We had a lovely lunch prepared for us by ChildCan, there was sooooooo much food. Thank you to them for the all the time, effort and love that went into preparing and organizing that for us, and for all that they do for us. The rest of the day was pretty relaxed, we just spent the day enjoying some long awaited family time. Katie and I were sad to see Bryan and little Bryan go. But we did enjoy a great weekend together so we thank God for the time we did get spend together.

Well I suppose I should quit rambling on. Again we hope you all had as good a weekend as we did. And please don’t forget to leave us a little note in the guest book, it always brings a little sunshine into our lives.

Joanne, Bryan, Katie and Bryan.

Wednesday, April 7, 2004 5:46 PM CDT

Greetings to all,

Well this week started off very well. Katie eyes were much better and with the exception of a few sleep problems, (darn that time change), she was back to her old self. We were surprised to see Meme, Pepe, Tante and Baby Bryan on Monday afternoon. We had fun playing in the playroom and doing puzzles with them. Katie was sad to see them go.

Tuesday Katie was up at 5:30 am. She decided that she was hungry and demanded that I get her a bagel with butter and some water. Because it is so important for her to keep her weight up, I reluctantly went down to the kitchen to fulfill her request. Once she was done her snack, she decided it was time to start her day. It was another day filled with puzzle making, crafts and playroom time.

Today, thanks to Aunt Angie, I was able to get out shopping for a little while for a few last minute Easter things. In the early evening, Katie started with a fever (no surprise there, considering I’ve been fighting a cold all week). This means an arm poke for Katie, as they need to do blood cultures at the first sign of fever. So we will have to wait and see how she is feeling over the next couple of days. Hopefully she will be feeling ok for Easter, we were looking forward to having an Easter egg hunt this year.

Well that’s all for now, please keep the messages coming, they always put a smile on our faces.

Happy Easter to all,
Joanne, Bryan, Katie and Bryan

P.S. Congratulations to our good friends Jackie, Anthony and Carmen. Carmen welcomed her new baby sister, Miriam, into the world on Monday April 5, 2004.

Sunday, April 4, 2004 2:07 PM CDT

Hello everyone,

This is Bryan. It's Sunday afternoon, and I've had a wonderful weekend with Katie. Joanne went back to Windsor on Friday to spend the weekend with little Bryan. From all accounts, they had a wonderful weekend together too. We are all looking forward to the hospital days being behind us so we can spend our weekends together, instead of in pairs :) Time is passing fairly quickly all things considered... it's already April, and by September we should get a taste of normal life again.

Friday was a bit of a topsy turvy day. Katie's eyes were still bothering her quite a bit, which was compounded by the fact that she didn't sleep very good on Thursday night. Moments after Joanne left, Katie had a little slip and fall and banged her head pretty hard on the floor. Our father / daughter weekend wasn't off to the best start. After some lunch and a good nap though, Katie started to feel a whole lot better. Aunt Angie dropped by in the afternoon to drop off supper and have another tea party with Katie. Katie had a blood transfusion today, which always makes her hyper. Couple that with the extra long nap she had in the afternoon, and it was no suprise that she was up until well after 10:00pm. That's OK, we got to watch the Leafs game together, which is one of our favourite things to do together. Granted, I probably enjoy it a bit more than she does :)

Saturday was sort of a long, boring day for us. It was really quiet around here, and it just seemed like time was passing extra slowly. Things perked up though, when Grandma and Grandpa Bedard came to visit. Katie had a great time doing puzzles with Grandma while Dad and Grandpa went to pick up chinese food. If you're ever in London, we strongly recommend China Town Restaurant in Byron (near Springbank Park), which was referred to us by Aunt Angie. The food is delicious.

Sunday was a fun day. Katie went to the playroom in the afternoon, nad Dad built her a castle (see the photos section). Afterwards, nurses Julie and Andrea had a "Barbie Party" with Katie and they had a great time dressing up the Barbies and singing "Old Mac Donald" together. It's 3:30pm now, and we're anxiously awaiting mom's return around supper time.

Bye for now!

Bryan & Katie

Wednesday, March 31, 2004 9:19 PM CST

Hello to all,

Well, today was the last day of Katie's chemo for this round. Unfortunately, today, Katie also woke up with sore eyes. Although we have been diligent about putting her eye drops in on time and making sure we do not miss any, she still got sore eyes. I felt so bad for her, this morning she wouldn't even open her eyes. She ate breakfast with her eyes closed. Then had a nap for an hour and a half. She got up not too long before lunch but was still not too keen on opening her eyes. After lunch, she was willing to do a little colouring, but after a little while, she was ready for a nap. She slept for about 3 hours in the afternoon. She got up just before supper. After supper, she seemed to perk up a little, and we actually had a normal evening, (we had a tea party and read stories). Considering she slept so much during the day, it was a little later than usual when she got to bed. Tomorrow an eye doctor will come to take a look at her eyes just to make sure every thing is ok and to see if they should maybe change her drops. I think it is safe to say that they will probably continue her drops for a couple more days. Although she did say her eyes were feeling a little better in the evening, they did start to bother her again when she went to bed. Hopefully a good sleep will help.

Not too much else is new, so I will write again soon. I didn't update the photos this time, I will update them again in a few days. Take care for now,

Joanne

Monday, March 29, 2004 3:36 PM CST

Hello,

Well here we are back at the hospital. Aunt Angie dorve us to the PMDU (Pediatric Medical Day Unit) this morning at 9am. She must have been good luck because Katie's lines didn't give us any hassels, we got blood return right away (phew). We waited in the clinic and played in the playroom until her levels came back from the lab. Then we came up to 7 West (our homw away from home). This place has become so familiar to Katie that when we were coming into London last night, we drove by an appartment building and Katie said, with a big smile on her face, "there's the hospital where we live".

So far things are going well, we started her chemo around 3pm. This round requires the frequent eye drops again which Katie does not like. Katie also wanted me to mention the she does not like her Septra (one of the many medications she has to take.) Her chemo will run over the next couple of days and then we wait. We wait for her levels to come up again (hopefully only about 3 or 4 weeks, but it could be longer). I tink it is safe to say that the Easter Bunny will be visiting us in the hospital.

We were saddened to hear of the loss of another one of our friends from 7 West. Please keep Lucas Baillargeon's family and frineds in your thoughts and prayers.

Thank you for the lovely messages, we always like to read them.

Love,

Joanne and Katie

Wednesday, March 24, 2004 9:50 PM CST

Hello,

Well here we are back in Windsor. This time around was a short stay in hospital. Next time will be longer. But for now we are able to enjoy the weekend home. Katie actually enjoys her stays in the hospital, as she is able to go to the playroom. Whenever we tell her we have to go back to the hospital she always says "and I will go to the playroom later".

I have learned so much about Katie through this ordeal, and I continue to learn new things daily. One thing that I have leaned is that she tolerates many things that we as adults would complain about. For one, with this round of chemo, she had to have drops in her eyes every 2 hours during the day and every 3 hours through the night. Although she dose not enjoy having these drops, she tolerates them and just goes right back to sleep in the night. Also, today for the first time, she had to have an injection in her leg. Again although she cried when they did the injection, she was quick to recover.

Because it was the first time she had the injection, we had to wait an hour or so before we could leave to come home. But the time was well spent, Katie had a photo shoot. A photographer from POGO (Pediatric Oncology Group of Ontario) was at the hospital and came in to take some photos of Katie (what a ham). The photos may be used for promotional purposes. We should receive a copy of the photos, so when we do, we will put them up for all to see.

Well I best be going now, it is getting late and Katie is due for some more eye drops soon.

Joanne

Tuesday, March 23, 2004 10:05 AM CST

Hello Everyone,

Just a little update. Katie came back to the hospital on Monday and started her next round of chemo. It started off a little late, as usual, there was trouble from her lines. They couldn't get any blood return. So, after trying just about every pose, they put some TPA in her lines. We said a little prayer and waited about 2 hours. SUCCESS!!! We got blood. So her chemo started around 4:30pm. She has to have drops in her eyes every 2 hours during the day and every three hours at night. She has actually handled the eye drops very well. She only cried a couple of times and now she is really good. So far all is going well with the chemo and as long as everything continues this way, we should be able to go home on Wednesday. We will be back home for the weekend and back to London on Monday. The next stay will be another long stay as we will have to wait for her counts to recover.

Check out the photo album on our page, as I've updated the photos today.

Keep the messages coming, we love to hear form everyone.

Joanne & Katie

Sunday, March 21, 2004 9:59 AM CST

Hello,

We have had another nice week at home. Thank you to all who have come to visit, we have enjoyed your company. Bryan and I were even able to go on a date (diner and a movie). Katie has loved playing with her little brother and little Bryan has loved having Katie around. It is going to be really hard on all of us to be apart this next round.

We will be leaving for London this afternoon sometime as Katie's appointment is at 9am tomorrow. Thanks to Aunt Angie and Uncle Jake for putting us up for the night AGAIN. Hopefully we will only be in hospital for a few days this time and be home by this weekend. It will all depend on how Katie is feeling.

In the words of Katie's favourite talking Bunny "Smile, cause when you smile, the whole world smiles with you"

Joanne

Wednesday, March 17, 2004 8:58 AM CST

Happy St. Paddy's Day to All,

We have been having a good week here at home. Since Monday was such a beautiful day, we thought the rest of the week would be the same and we might even be able to get some work around the yard done. WRONG!!! With all this snow we got, we aren't even going out of the house a whole lot. I think Katie is starting to miss being at the hospital, as she has been a little on the cranky side sometimes. Or maybe she is just going a little stir crazy.

She has been a great big sister though. Maybe a little too helpful. When I put Bryan down for a nap, she is always waiting for him to wake up. So as soon as he make the smallest little sound, she is right there running to his room saying HE"S AWAKWE!!. So even if he was just making a little sound in his sleep, he wakes up because he hears her. That's ok though, I'm glad that they are getting along so well.

We were saddened to hear of the loss of one our friends from 7 West. Crystal Janisse passed away on March 15, 2004 after a long battle with Rhabdomyosarcoma. We ask that you please keep Crystal's family and friends in your prayers.

Thank you again for all the great words of encouragement.

Joanne, Bryan, Katie and little Bryan

Monday, March 15, 2004 4:46 PM CST

Hello to All,

We went to London today, and when we got there, we found out that Katie's counts were not quite high enough to start the next round of chemo. So back to Windsor we came. It was alright though, it was a nice day for a drive (Katie slept all the way home). We don't have to be back in London till next Monday, so now we have an extra week at home. Katie was happy to go back and see all her friends at the hospital. She was having a little too much fun, when we came to leave, she wanted to stay to play with the toys. We convinced her to come home by telling her she could come back and play with her little brother.

So we will enjoy are week at home and hopefully get a chance to do some odds and ends around the house that we haven't been able to do (like take down the outside Christmas lights).

Talk to you all soon.

Joanne, Bryan, Katie and little Bryan

Saturday, March 13, 2004 4:01 PM CST

Hello,

Well here's the scoop. We had a great week at home. Katie loved playing with all her toys and her little brother. And Bryan loved watching his big sister. We were able to go theo Grandma and Grandpa Bedards for pizza on Thursday and were happy to see Grandma Willy, Aunt Mel, Aunt Beth, Uncle Brian and Lauren and Dan. We will also get a chance to go to Meme and Pepe's on Sunday before we head back.

We went to Hotel Dieu Hospital on Friday for Katie to have her levels checked and everything was up. So now we move on to the next phase of treatment. She will go back to London on Monday and as long her neutraphils are up enough, she will start the next round of chemo. The next round will go for around 2 or 3 days followed by a rest period of about 4 or 5 days. As long as Katie is well and is eating ok, we should be able to come home for the rest period. After the rest period, she starts another round of chemo for 2 or 3 days and then we will have to stay in London again until her counts recover.

Keep the messages coming, we love to read them. And please let us know if you have any questions.

Love,

Joanne, Bryan, Katie and little Bryan

Wednesday, March 10, 2004 1:45 PM CST

Hello from home,

Yes, that's right! We are home!!Yesterday morning, the doctor told us we could go home for a few days. Katie's counts are recovering, however, they have not yet recovered enough to start the next round of chemo. We have to go the hospital here in Windsor on Friday morning so they take some blood to see what her counts up to. If they are up enough, we will go back to London on Monday.

It actually worked out really well, my Mom and Dad and Tante were coming up to London on Tuesday anyways. So I just called them and told them to bring Katie's car seat with them and they brought Tante's van and we all came back together.

We had a fun night here at home. It was nothing special, just our usual routine. But it was so nice to be able to spend the evening together like a normal family. And today is a typical day. It feels good to have a normal life (even if it is only for a few days). Katie has been having so much fun playing with all her toys. And, she has been such big help with Baby Bryan. He loves to watch her play. She is so cute, if she hears him cry, she tells me she has to go shhhhhhh him. She will go over and give him a toy or talk to him and he just looks at her and smiles. It's amazing how quickly he has become used to having her around. Just this weekend, he would cry every time she would get excited around him. Not anymore, he actually looks around the room for her.

Well I should get going, I have to wake Katie up from a nap or else she won't sleep tonight.

Love,

Joanne

Monday, March 8, 2004 2:48 PM CST

Good Afternoon,

Katie enjoyed spending the weekend with Bryan and her baby brother. It was a fairly relaxed weekend, Grandma Bedard and Aunt Mel visited on Sunday and as usual Grandma spoiled her little Katie. We had some good news, finally, Katie's counts are starting to climb up. We may be able to get home before the next round starts, but we're not sure yet. I will talk to the doctor and see what the plan is. They have discontinued her antibiotics for now because her counts are recovering. Not too much els new, so I will talk to you all again soon as Katie will be back from the playroom soon.

Take care,

Joanne

Friday, March 5, 2004 6:36 AM CST

Hello to All,

Although we've had another laid back week, we did move to a larger room. The extra space is nice considering Katie takes a new toy from the playroom everyday and refuses to return the one she took the day before. However, this means that we may be there for a little longer than we had originally anticipated. I guess we assumed that since her levels came up so quickly last round, they would come up quickly again. Don't be alarmed, the doctors had told us from the begining that it would take longer for her counts to recover this round. And they continue to assure us that this is normal and that Katie is still doing well. We were so happy to hear that Lucas, one of Katie's little friends from the hospital who was diagnosed with ALL in January, is in remission. He and his family still have a long road of treatment however, so please keep them in your thoughts as well.

Thank you to all who have shared their thoughts and prayers with us. And please keep signing the guestbook, we love to read all the encouraging words.

Well I better get going, Baby Bryan is calling.

Love,
Joanne

Saturday, February 28, 2004 2:50 PM CST

Hello to Everyone,

Let me just start by saying THANK YOU!!!!! to everyone who came out to support us last night and to those who couldn't attend but sent us your prayers. Bryan and I can't even begin to express how touched we are. It really was an uplifting evening. Thank you, thank you, thank you to our families who put so much time and love into this event.

Katie is doing well. She had another great week, we are still waiting for her counts to recover, it's just a matter of time.

Thank you again from the bottom of our hearts,

Joanne & Bryan

Saturday, February 21, 2004 2:24 PM CST

Hello everyone,

Although it was a pretty laid back week, Sunday was a very eventfull day. Grandma & Grandpa Bedard, Grandma Willie and Aunt Beth came to visit, and Aunt Care surprised us with a visit. On Sunday evening around 8pm, when the nurses came in to do Katie's vitals, she had a bit of a temperature. Which, off the bat, gets our hearts beating a little faster as this could be the first indication of an infection. So they followed the usual protocol, and had to start her on antibiotics right away. However, before they started the antibiotics, her temp went back to normal on its own within the hour. And thankfully, no temps the rest of the week. However, they continue the antibiotics any way just in case.

Meme, Pepe, Tante and Baby Bryan came to visit on Wednesday, and Pepe and I went shopping while everybody else got to have fun in the playroom. The rest of the week was pretty uneventfull. I came home to Windsor this weekend, and Bryan and Katie get a Father-Daughter weekend.

Hope all is well with everyone. Keep the messages coming, I love to hear from everyone.

Love,
Joanne

Sunday, February 15, 2004 8:32 AM CST

Hello Everyone,

Just a little update on our weekend. Katie sure did enjoy spending the day with her Meme, Pepe and Tante on Saturday. Bryan and I owe all of them them a great big thanks, they stayed with Katie and Baby Bryan spent the evening with Aunt Angie and Uncle Jake while Bryan and I went on a date. This was the first time we had gone out just the two of us since Katie took sick. Today Katie looks forward to seeing her Grandma & Grandpa Bedard, Grandma Willy and Aunt Beth. She will however be sad to see her Dad and baby brother leave to go back to Windsor.

Well, I better go, the Baby is getting fussy. Take care.

Joanne

Friday, February 13, 2004 7:50 AM CST

Hello Everyone,

We have had a good week here in London. Katie has finished this round of Chemo and now we just wait till her levels come back up (hopefully only about 4 or 5 weeks but it could be longer). Katie is now neutropenic (her body can not fight any infections on its own), so although we encourage visitors, we request that if you are feeling under the weather, please wait till you are feeling better to visit.

Katie received a circle time video from her daycare class. She loves to watch all her friends and teachers sing all there favourite songs. She watches the video about 10 times a day and everytime she has to get her props or "pops" as she calls them out and sing along. She also insists on showing all her visitors circle time. Katie had a few unexpected visitors this week. Her friend Emily came to visit, and of course, Katie had to show her the video. Also, a puppet named Scooter came to visit.

Bryan and Baby Bryan got here last night around 8pm, and baby and I were off to Aunt Angie and Uncle Jake's. We look forward to spending the weekend together as a family. I will try to update the page on Sunday.

Thank you for all your thoughts and prayers.

Joanne

Monday, February 9, 2004 11:45 AM CST

Katie and Joanne are back in London. She was admitted around 11:00am Sunday morning, and had her lumbar puncture at 1:30pm. The lumbar puncture is the procedure where they inject cytarabine (one of the chemo drugs) into her spinal fluid. After the LP, she was back in her room and had to lay flat on her back for one hour. The highlight of the afternoon was when she sang happy birthday to her nurse Kelly. She was still under sedation when she was singing, so it came out really slow and she sounded like a drunk singing in a bar, so we all had a good laugh. She started her IV chemo around 2:00pm. The chemo will last for 4 days, then we wait for her blood counts to recover, which should take 3-4 weeks.

Katie is in room 7184 again, which is the room she was in the week of her diagnosis. It's a small room, but it's definitely better than the closet we stayed in the last couple times (7182).

At this point, she is feeling really good and is bouncing around like her normal self. She was quite excited to see the nurses again

Bryan

Wednesday, February 4, 2004 9:36 AM CST

We have decided to have a lazy day at home today. We came home on Monday February 2 and will be here until Sunday February 8. Katie will start her next 4 days of treatment on Sunday. This means another long stay in London, as we will have to wait for her counts to recover (probably at least another month or longer). So far, all is going well. Her last bone marrow aspiration determined that her bone marrow is in remission. However, she still has a long road of treatment ahead of her. We know she is strong and her courage will help her through.

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