Katie's Journey

Thank you for your concern and interest for the Wilson Family during Katie's courageous battle with cancer. We are continuing to post updates from the Wilson family as they prepare for Katie's Celebration of Life service.

Where do you even begin? I have been so numb since after the funeral, and have done nothing but sit and remember our special Katie. We are so thankful for every card, comment, prayer, donation and meal that is coming our way. I treasure going to the mail box and seeing all the cards and all the cards from the funeral that we have gotten. I treasure every word in those cards. The donations in memory of Katie to Childrens Wish (and other organizations) is a testament to our very strong gal. Thank you. It does make a difference.

I know and understand how busy the visitation and the funeral was and know many of you were there but couldnt get to or didn't see the guest book. If you could please let me know if you were there, I want to add your name to the guest book. thank you to those who have already done so. There were so many of you there and we appreciate it,

If you watched the webcast, please let us know. We would like to know where it was watched from (some of you have let us know) - it is amazing what technology can do. You can still see the webcast if you haven't seen it yet. You can go to http://weaverfuneral.frontrunnerpro.com/runtime/134/runtime.php?SiteId=134&NavigatorId=21713&op=moreinfo&viewOpt=dpaneOnly&ItemId=653525
and follow the link to webcasting.

Again thank you to you all for everything you are doing.

I must say I am very blessed to know that many of you have commented on how Katie's faith and ours is changing how you look at faith. I challange you to continue to discover this special faith that is what has and will continue to get us thru these days. Please if you have any questions regarding faith, I know that I would be happy to chat with you on it ( or I can direct you to someone who is closer to where ever you may be). As I said our faith is a huge part of our life and it is the reason we can face each day.

Jacqui is enjoying her reading week and will head back to school later this week , John will head back to CSS shortly. Thank you for caring for the big sis and bro. It means the world to us.
Brent will head back to work in a couple weeks. I will decide what I am doing in a couple weeks as well ( Of course, I have OVPC Family Camp where I will be doing the kids services. I cant wait :)

Thanks again for everything. Thank you seems so inadequate.

Love

Evelyn, Brent, Jacqui, John and our forever "angel" Katie

Well reality begins to set in ... as tomorrow we begin the public process of saying goodbye to Katie. We have been busy preparing for these days with a roller coaster of emotions as we sift thru pictures and her belongings. what special memories we have.
We are so greatful for all the outpouring of love and support.

wanted to let everyone know that once again Katie is a "guinea pig" this time in the feild of technology. katie's service will be the first one ever on a web cast for Weaver Funeral homes.
Which means that those who are unable to attend can watch the service on the website. So it is neat what technology can do these days.
here is the blurb from the funeral home:

"For all those who are unable to be in attendance here today...we welcome and invite them to share in our service, via live broadcasting through our website...weaverfuneralhomes.com If there is someone you know who's unable to join us....our service today is recorded and will be available for viewing on demand, at a later date..... whenever it is convenient for them."

you go to Katie's page on the website and then look for the link of webcasting.

again thank you to all we are blessed beyond belief and together with all of you we will get thru these days.

Love Evelyn, Brent, Jacqui and John and our forever "angel" Katie

We again say thank you to all for everything you all are doing to make these days easier.

I forgot to mention in my last posting. We were able to donate Katie's beautiful blue eyes for transplant, so her gorgeous eyes will be used to help someone else see .

You can go to www.weaverfuneralhomes.com for all information regarding her celebration of life.

Here is a copy of her obit::

Wilson, Kathleen "Katie"... passed peacefully into the arms of Jesus after a very courageous battle with Osteosarcoma on Thursday February 10, 2011 at the age of 15 years. Precious and much loved daughter of Brent & Evelyn of Carrying Place. Treasured and loved sister of Jacqui and John at home. Beloved granddaughter of Samuel & Marlene Clements of Trenton and Carol Wilson-Rout & Ross of Carrying Place and predeceased by her "Grandpa Wilson" (Gary). Survived by her proud great grandfather Reginald Bowen of Bomanville. Loved and cherished by many aunts, uncles, cousins and friends. Predeceased by Uncle John Clements. A special "Shout Out" to 11 South at Mount Sinai Sarcoma Unit and 8A at Hospital for Sick Children for guiding us through "Katie's Journey". The family will receive friends at the Weaver Family Funeral Home - West Chapel, 170 Dundas St. Trenton on Thursday February 17, 2011 from 1-4 pm & 6-9 pm and again on Friday February 18, 2011 from 11:00 am to 12:00 at Calvary Temple, 679 Dundas St., West Belleville. Funeral Service will be held at Calvary Temple, 679 Dundas St. West, Belleville on Friday February 18, 2011 at 12:15 PM. Rev. Trevor & Rev. Stephanie Headrick officiating. Interment to follow at Carrying Place Cemetery Annex. As expressions of sympathy donations to the Children's Wish Foundation would be appreciated by the family. Online guestbook & condolences at www.weaverfuneralhomes.com

A very special thank you to our worldwide community for supporting us throughout "Katie's Journey."

We so love all of you thank you.

Evelyn, Brent, Jacqui and John and our forever angel, Katie

Katie is now in the arms of Jesus. She went very peaceful surrounded by loved ones.
Details will follow... Thank you for everyone for everything.

Love Evelyn, Brent, Jacqui and John

Katie had a "comfortable night" . She is resting comfortably and is sleeping but aware of when family and friends are around. She even "got irrated with me this morning and yelled at me at bit ...because i didnt hear her question... so it was nice to see her attitude still.

She is comfortable and in no pain. The oncology team here is incredilbe and we are having very special moments with her as she peacefully sleeps and still we communicate.

Thanks again for all your comments, prayers and EVERYTHING. We love it and the whole oncology floor is blown away by Katie and her support system.

Right now only family and very close friends are allowed to visit. Please call ahead.

Katie had a very rough night and the family has been called in .. we are now in a 24 hour bedside vigil..

Please pray for comfort and thank you all for everything.

Won't be responding or on fb for a bit. Please know we value each and everyone of you and your prayers and love.

Katie , Evelyn, Brent, Jacqui and John

Just a quick note as I am on another computer as I accidently dropped Katie's net book and it seems to be destroyed for the time being ..uggggggggg ( I am sure once we get home we can have it looked at )!

Anyways... Katie's breathing seems to be a bit better but she is still having some issues. But they have made her comfortable . The plan is for her on Tuesday to have the catheder (sorry about spelling) inserted tomorrow afternoon which will allow for fluids to be drained at home instead of heading to hospitals. to go in. They have planned for her to take a patient transfer ambulance home on Wed morning. So hopefully by Wednesday afternoon she will be resting in her own bed.

She is looking forward to just going home and enjoying time in her own bed and with family and friends.

Please pray that her lungs and breathing stabilize to get her home where she wants to be. She is a fighter and continues to show an amazing heart and spirit like no other.

Thank you again for all your comments and emails. It may be a day or two before I can respond since as Katie says, "MOM YOU OWE ME A COMPUTER...."

Blessings to you all,

It is hard to believe that it has been almost 8 months since this journey has begun. And the ups and downs continue.

We had a great start to the week. The LEAFS game was amazing , and yes they won! :) Katie had a great time even was on the jumbo tron and after the game got to meet a number of the players and had a wonderful evening.
We stayed in TO due to the storm and enjoyed shopping at the Eaton Centre and relaxing at the hotel.

Wed. evening Katie began to experience severe breathing problems and was running a fever so we called the ambulance and she was rushed to Sick Kids. We got there around 10:30 pm and thruout the evening they helped get her comfortable and got her admitted. On Thursday she had her lungs tapped (drained) and it helped with her breathing. So the plan was to go home today (Friday) but because she was still experiencing some issues ... they were mointering her closely. They decided that they will insert a catherder that will drain her lungs without having to always get it tapped. So we had the option of going home today and coming back on Monday. We decided that it would be more comfortable for her to stay here (espescially if there were any complications this weekend). So we are at Sick Kids till wed... not what we were expecting or wanting but knowing that she is resting comfortabley is more important for us.

We met agian with some of the pallative team who are fabulous. We have a great team ready to help us with what we need. Our homecare nurse Michelle is fabulous and we are so thankful for her gentleness and great care of Katie, Dr Bowler and Pat are so supportive and all the oncology team here is making a very dark time more peaceful and so helpful. Please just pray that Katie will be able to sleep peacefully and that her breathing will stay stablized..

We want to give a shout out to the Sherton hotel which has been so wonderful to us since we left there in the ambulance. They have offered us a free room till next Wed. Wat an amazing gesture from them (Of course they are the same company as the Westin...so please if ever in TO support these wonderful hotels. They both have been such blessings in such stressful times. Their staff is incredible or write their head offices thanking them for being such a blessing to us)

Again thank you to all of you who are being such a support to us, your cards , emails and post s are wonderful. Just know I read them all , I may not answer you but know that i read everyone and really appreciate it all..

Our faith is what carries us thru this. We dont understand why we are where we are at this journey but know that we have a very big God who is carrying us thru this. It is what carries us daily..and right now we go day by day.

Well, what a busy couple weeks. Katie's social calender has been full. It is wonderful to see her laughing and having a wonderful time with family and friends. She has been out and about and is enjoying being much more moblie.
We are so thankful that she has not had to have her lungs tapped yet. We head tomorrow to Sick Kids for a followup appointment from the surgery again ( pain management team) .
We have been blessed with a wonderful homecare nurse (Michelle) who takes amazing care of our girl. :)
We are excited to go the Leaf game - Katie and Brent will be in box seat with Camp Ooch (a camp for kids with cancer) (Leafs Mike Komisarek donated the box) and John and I will also be going to the game thanks to the generosity of some amazing people) (Jacqui has gone back to Peterborough. We miss her but know she is in good hands at Masters with everyone there. :)
We have decided to stay in TO til Thursday due to the pending storm. We got a fabulous deal on Hotwire (We can now use that with Katie as she no longer needs a wheel chair accesible room and she can hop about in the room. :)So, we will have Wed to actually be tourists in TO instead of being at hospitals :) as long as the city doesn't call in the army to clear the snow..lol! We will head home Thursday.

Today was an incredible day for Katie. Her BBall coaches and other staff members at THS and many of her friends put together a party for Katie and the theme was Sweet 16/Survivor. It was an early sweet 16 party for Katie (her B-day is mar 29). It was so amazing .. THANKS TO ALL WHO HELPED WITH IT AND PROVIDED an AMAZING TIME ... IT was wonderful !

Again we are so thankful to all who have done so much for us, we are blessed to have a wonderful support system thru this journey.

We continue to believe in a miracle and thank you for all your prayers, encouragment, gifts, calls, suppers. We thank you!

Blessings,
Katie, Evelyn, Brent, jacqui and John

Thank you to everyone for all your prayers, comments, words of encouragement and calls. We are truly blessed by you all.

Katie's followup appointment yesterday with the surgeon went very well. He is very pleased with how the stump is healing. She is doing very well with gaining strength and using a walker a bit more. She is beginning to experience a bit more of the phantom pain. Please pray that it will not be too bad.

I start todays message with a song that is one of my favourites by Casting Crowns. Someof the lyrics are as follows:

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out
We're reaching out

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out

This is a very hard message to send out.

Katie is recovering very nicely from her surgery and has enjoyed so much the extra mobility. Her spirits have been incredible and she is still has such positive attitude.

The doctor has informed us that in a very short time Katie's lungs have become a very huge issue and that the cancer in her lungs is not improving at all. With that being said, the time has come to begin to prepare for pallative care at home. There is a treatment that they were going to do, but they feel that it will not help at all (it was another experimental drug) and Katie has the choice to go for more treatment or spend the time at home with family and friends.

Katie is still deciding what she will do. The doctor has encouraged her to conitnue with her physio and is very inspired by her spirit and her determination as we all have been.

So as a family we are spending time with one another and will continue to do so as we continue to fight this and believe that the impossible will happen.

We again say thank you to all of you for your prayers and your support, it is because of all of you we are getting thru this.

SCREAMING WORDS OF JOY AND SO MUCH EXCITEMENT!!!!!

Katie is recovering very nicely. Her pain is well under control and SHE WAS UP WALKING TODAY!!!!!!!
For the first time in 7 months, my baby was able to walk on her own. She used the parallel bars and a walker. It was so overwhelming to see her standing tall again. AMAZING. The first of so many miracles ...
The physio was so shocked to learn that Katie has not walked in 7 months. She thought maybe a month but Katie's strength in her legs shocked them and they were blown away by how well she did.

We have had a slew of vistors - it has been wonderful. The nurses are blown away by the support Katie has .. they don't know our family and friends. I don't think they are used to such a support (Sunday there were 16 of them...lol) and it has been steady ever since. Thankfully they are letting us break a few rules of the number allowed..lol

Not sure when we will be released but with Katie's amazing recovery. Thank you to all for your prayers, cards and words of encouragment. This girl is moving forward... we are so very proud. We will also know later this week what the next plan is for the treatment of her lungs. Please continue to pray that they will find the right one to beat this!!!!!!!

I am heading back to the Westin hotel tonight and Brent (he took holidays this week) will stay in the room with Katie. Jacqui is settling in back at college and John is home in bed sick (pray that he will get better soon).

Blessings to you all.. We are so thankful that we serve a MIGHTY GOD and are so excited for things to come. we are believing for many more miracles and fast recovery.

Love Katie, Evelyn, Brent, Jacqui and John

Well, what a whirlwind of events in the last 24 hours.

Friday did not start out well at all. We were at the hotel and Katie had not slept much Thursday night in extreme pain. She woke up Friday morning with some labour breathing and an ache in her shoulder ... that was the same when she had her collasped lung months ago. Because she could not move into her wheel chair, we had to call an ambulance to take her to the hosptial. Her lungs were showing signs of distriss but when we got to Sick Kids, they did a chest x-ray and all was good, but her pain level in her leg was horrible and very unmanagable. The pain also was very bad in her ankle (where they had found a spot) so the Dr. consulted with Dr. Wunder over at Mt. Sinai and it was decided that if Katie was ready they would go ahead and do the amputation right then and there.

So what we thought was going to be a consult turned into surgery and Katie now is very happy. She is not in pain and the leg/knee that was so cubersome is gone. She had told the Dr.s yesterday she would take the knife and do it herself, she was that mentally prepared for it. She is a real trooper and came thru surgery well. We got out of surgery around 7:30 last night and she was out of recovery by 11:30. She then was texting friends and watching tv like a typical teenager till the wee hours. She is doing well this morning. When she saw the stump her first words were "COOL" so we are thrilled with how it all went and how happy she is and knowing she will be able to start getting moblie again is wonderful. We will be at Sick Kids for at least a week as she recovers. For those who can she would love visits ... we are on the 5tth floor and visiting hours are 11-8. thanks for all your prayers and words of encouragement. She will love to have visitors. When I have a phone number in her room i will let you know as well. So we are very much relieved that this part is over. They will be doing tests to ensure that the cancer is no where else but her lungs ... which means now we can concentrate on the lungs and getting them better.

It is snowing heavliy here in Toronto this morning but it is beautiful and as I reflect on the nice snowflakes coming down it reminds me of the wonderful blessings we have recieved thru this journey.

I will do our best to keep you updated. Silly Sick kids doesnt have a stong wireleess system and the computers are only opened during the week. (GUESS they figure people dont need them on weekends.)

Brent is heading home today with Jacqui as she needs to prepare for her second semester at college. John will stay till tomorrow and Brent will come back and forth this week. Please pray that there will be no infections, that Katie wont have phantom pain in her stump and that she will heal quickly so we can get home.

Have a great day

Blessings
Katie, Evelyn, Brent, Jacqui and John

We have had a great time the last month and it has been wonderful to have spent so much time together as a family.
We had a lovely New Year's Eve with Katie having some friends over. It was a nice evening for her - she made it to 11pm ( so she rang in the new year on Maritime time) .

     Jacqui heads back to college on Sunday - it has been wonderful having her home for the last month and John survivied his first week back on the 7 am bus :P
     We head to TO today as we meet with the Dr. tomorrow morning. We have an appointment at 9 am at Sick Kids and then we head over to see Dr. Wunder at Mt. Sinai. We are really praying that they will be able to do surgery as soon as possible to make things easier for Katie. We will also find out what the next plan is for her treatment.
      Please pray that Katie wil be comfortable as we travel, her leg has been in a lot of pain ( thank goodness for the morphine) and also that the weather will be good as we begin travelling back and forth .
     We again our so thankful to everyone for all you are doing for Katie and our family, we are so blessed by everyone's generosity and support.
     We really couldnt have come this far in this journey without the love and prayers of all..
     At this time, the only thing I can say is: Be Still and Know that I am God... It is really hard to do that but somehow with the help of all of you.. it is easier .. thank you

Blessings to all

Love,

Katie, Evelyn, Brent, Jacqui and John

Hello to all, hope you are having a wonderful time with family and friends. We certainly are. We had a wonderful Christmas and are so blessed. We had a wonderful time at my family on Christmas Day, lots of family and, of course, yummy food!!! We then travelled to Ottawa to have Christmas with the Wilson family - another great day of family and food. Incredible and so fun!

We then headed off to the Sens game ... of course not to see the Sens but to see the Pens and Sidney Crosby. It was an incredible evening (except for the fact the Sens won.) :( But i can not thank those enough who got us incredible tickets, and went all out for our family to watch any NHL game from right down at rink side was amazing, but to see Sidney Crosby play and to see him keep his scoring streak in tact was wonderful.

After the game the Sens staff went out of their way and in the end, Katie and I met Sidney Crosby. You hear so many stories of professional athletes that only think of themselves. Well I can tell you the Sidney Crosby is an incredible selfless person. He took the time to meet with Katie and have a little conversation with her and me. He was so personable and so down to earth. What an incredible evening for Katie. It topped off a great month for her! We posted pictures as soon as I get home from Ottawa. Thank you to all for all your wonderful wishes, comments, and most of all, your prayers for our family. As we finish out 2010, it has been a year that was not expected, but we are so thankful for a faithful God who has helped us get thru everything. It is also helped to have such incredible family and friends support!!!

Katie is enjoying her time away from hospitals and Dr.'s. We will head back on Jan. 7. so please pray that as we meet with the Dr. to discuss the next plan of attack.

Blessings
Katie, Evelyn, Brent, Jacqui, and John

Well we are back in the great Canadian winter after an absloutely fabulous and most amazing crusie. Our family had a wonderful getaway thanks to CHILDRENS WISH Foundation!
Disney sure does it well and on top of that , they went over and above what we could have ever imagined. katie felt great the whole time and it was a very Magical disney time :)
She met up with everyone of the characters and so much more. Katie and I went and had a great time with the dolphins, Brent and John went on a cross country dune buggy and snorkling and Jacqui well she went shopping :)
we had a very lovely time at all the ports .. the first night was a bit rough as there was a storm ( thankfully we were heading south of it) but it made the boat sure rock back and forth.. after that it was fine. We met some great people - thanks to marianna our special hostess from Italy who was the wish child's personal helper.. and she was incredible , everyday she left a special treat for Katie .
many of the crew members became good friends , Dustin from Canada, Blake, Oscar from Mexico, Steve from Australia and so many more they went over and above any expectations we had.
the weather was wonderful and our last day we spent at the Castaway Cay - disney's private island in the bahamahas.. awesome and we rented a private cabanna and had our private beach area and all kinds of treats, it was perfect way to finsih the trip.
When we got back we met up with another wish family from Stouville whose little guy has leukemia ( he was diangosed when he was 13 months and is now 4 and has completed his treatement) we had seen each other at Sick kids but now have met officially. ( i iwll post some pics soon )
We now are busy trying to do last minute Christmas stuff.. it has been a bit crazy as John was sick then it was passed it to Jacqui and then i had my turn yesterday :( so hopefully it will not be passed to anyone else.
As you get ready to celebrate with family and friends, take time to pause and remember that it is because of a special baby born in a stable that we have this time to celebrate. So many years ago a baby was born that would change the world. We are so greatful for our Saviour not only this time of year but everyday. We could not have made it thru these past 7 months knowing that Jesus is taking us step by step and getting us thru some very difficult days. He is our strength and He is our Hope. Our hope is in our King and this christmas we will once again celebrate with a birthday party for Jesus. THat is our family's special tradtion we have done since the kids were little, with birthday streamers and balloons and pin the tail on the donkey and of course a birthday cake. so remember the reason for the season :)
We once again say thank you to everyone who has done so much for our family . 2010 sure brought some HUGE bumps and mountains our way but with family, friends and community we are climbing them day by day so THANK YOU TO EACH AND EVERYONE OF YOU..we pray that 2011 will be a great year for all.
We will spend christmas at my parents place then
We head to Ottawa on boxing day to see the pittsburg penguins play the sens ( and yes we will be cheering loud for the pens)Katie is very excited to see Sid the kid play. we also will celebrate the Wilson christmas in Kanata.
we then enjoy some more down time and head back to sick kids on Jan. 7 to find out what our next plan of attack is.
so have a very safe and wonderful Merry Christmas and a very blessed New Year!
love and blessings
katie, Evelyn, Brent, Jacqui and John

Well the day has finally arrived.. we leave tonight from Toronto on Katie's Wish trip to the Disney Cruise. WE are all so thrilled to be going and so very greatful to Angela and the team at the Children's Wish . We are looking forward to some amazing family time and just getting away .
please pray that our flight will not be delayed ( there is a storm brewing apparently- but so far as of now they say our flight is a go)
pray that Katie will be comfortable on the plane ( she has never flown before) and that her health will be good during this trip.

Not sure what kind of wifi the cruise has .. but will update with lots of pictures when we can.
We again thank everyone for all your prayers, comments , encouragements and gifts to our family.

Remember to take time to remember the reason for the Season.. have a very Merry Christmas - find a local church to enjoy some great christmas activities. Have a great day.. we are leaving on a jet plane :)

blessings
Katie, Evelyn, Brent, jacqui and John

HOME SWEET HOME!!!!! We are now home and Katie doesnt have to be back to Sick Kids until Jan. 7!!!!

She choose not to have her chemo today and that was fine with Dr.Gupta , this way Katie will be feeling good for her cruise and Christmas. Her levels are all "normal" which is great news. She has been feeling good ( little nauseated this week but mostly feeling ok) . She is so excited that she doesnt have to be back at a hospital till jan. 7. She is busy making her shopping list for the cruise, busy christmas shopping ( she got off the train and went straight to the mall)
We are so thankful that we will be able to have some great family time
Brent has the next 3 weeks off ( he cancelled his holidays in the summer and now it is a great benefit as he is off till boxing day:)
Jacqui is finishing up all her assignments and exams - pray that she wont get too stressed this week-
John is ok with not being mentioned this week :P
I am just looking so forward to spending time with family and friends over the next couple weeks!!!
thank you again to everyone for everything!!! We so appreciate everything :)

blessings
Katie, Evelyn, Brent, Jacqui and John

ps. if you are in the quinte area..
dont miss Christmas Alive at Calvary temple.
7pm Sat and 6pm Sunday night
you dont want to miss it!!!!!

Katie is feeling good!!! She had her first round of the Gemcitabine
on Friday at Sick Kids. On the way home she was hungry and wanted the Mandrin .. go figure
she was sick when we got home ( probably a combination of the chemo and something from the mandrin- there was a smell she did not like) . but after a good nights sleep, she has been feeling great and not sick at all :) thankyou for your prayers
we had a busy weekend- Saturday while I took John out shopping for clothes , Katie and Brent had a daughter/daddy day.. they were out and about for most of the afternoon .
pray for Jacqui as she is coming to the end of her semester at Bible college and has all her assignements and her exams have been bumped a week up so she can enjoy the crusie.. so she is swamped , so please pray for her
Sunday we all went to church and then to grandma and grandpa's , then the Trenton Santa Claus parade. It was a great time. Today we have had a down day- she is enjoying her new I Pod touch ( thank you to a wonderful family friend and family who so generously surprised her - just wish i had a camera when she opened the package)
please know that we are sooooooooooo thankful and greatful for all donations, gifts and everything that we have received in our journey. We so really appreciate it all. It is such a testament of our wonderful family, friends and community. It has made this journey so much easier. As we approach the Christmas season which is a giving season.. we just want to let each of you know how much we so appreciate everything. We know that you are all praying for our family and we do believe in prayer! We may not be seeing all the results we want yet, but please know that the prayers are what has carried us thru this, Our God is a great God who knows exactly what we need when we need it. So as we come to CHRISTmas, take time to celebrate the reason for the Season and a baby born in a stable who is our strength and our families day by day strength.

We head back to Sick Kids on friday for another treatment, then she will have a couple weeks off so we can enjoy our disney crusie!! we are soooooooooo excited to have this time as a family . It will be nice to get away as our family so needs this break.

Here are a few links I would like to share with you
http://payment.csfm.com/donations/cwf/index.php?ac=00003

if you dont know what to buy.. consider the children's wish foundation.

and http://www.facebook.com/event.php?eid=156739841034393

we will be doing this as we have been so blessed!!!

Have a great day

blessings

Katie, evelyn, Brent, Jacqui and John

thank you to all for all your words of encouragement, prayers and everything these past few days as we dealt with the news we were given.It is wonderful to have all of the support we have.
Katie is still feeling very good and went to a Look Good feel good program yesterday and it was amazing for her. She really had a good time.
We will be heading to Sick Kids on Friday to begin a new treatment of chemo ( we are back to tradtional chemo) she will be given Gemcitabine .. this a outpatient treatment so we will go up friday and come home friday afternoon . the dr. says she thinks Katie will not have too many sideeffects from this. but since she is going back on chemo - there could be some sideeffects..
Please pray that there will NOT be as we want to make sure Katie is feeling her best for her cruise in 18 days. She will have two of these treatments before her trip , then we will see about other options and treatments after the trip and Christmas ( there is a possiblitly that she will have treatment on Dec. 24) .

As Christmas season and the busyness of everything that comes with it.. take time this Christmas to reflect on why we have CHRISTmas.
Brent and the kids have to stop me whenever I see a nativity set.. I love them and have a number of them , but to me it is a reminder of a special baby born who is the One who carries us each and everyday. So in all the hustle and bustle , take time to remember the reason for the season.

blessings to you all

love Katie, Evelyn, Brent, Jacqui and John

well today brings another HUGE bump in the road. the results we got were not what we had hoped for or expected. katie has been feeling so well and looking and doing well, but the chest CT showed different. Her spots have grown again ( not alot but they still are growing) so therefore she is pulled off the current experimental drug and now we wait .
They are looking into other treatments and will let us know next week what the plan of attack is.

We do not know why Katie's tumors are not responding to the tumors.. espescially with all the prayers going up, but that is not for us to ask, we believe in a God that even thru the crap times , still holds and carries us thru the storms.. and right now i feel like I have a hurricane, tornado, sunami, blizzard and whatever else attacking .. but I think of the song Praise you in the Storm.. http://www.youtube.com/watch?v=uHdcyue0bSw
we dont know the big picture , but we do know that we will get thru this storm with our wonderful family and firends and community.

Blessings
Love
Katie, Evelyn, Brent, JAcqui and John

We have all had a great weekend .. Brent and I had a wonderful weekend away at an ALS conference.. it was great meeting with people from across canada. WE even decided with 3 friends from Vancouver to go downtown Toronto on Sat. to see about getting tickets ( yes we were going to buy them from the scalpers) for the leaf- vancouver game .. but there was none to be had.. so we watched the game at a restuarant and had a great time. It was nice for brent and i to get away . katie had a great time with her grandma and some of her aunts and cousins.

Tomorrow we head to Sick kids for Katie's checkup and a Chest CT at 1:30 pm . We then wait for them to read the scan and see if she will continue on this expirmental drug. We will know by Wed. morning. I will update the group ONLY after we have had a chance to get ahold of ALL family members first..
Please pray for us, this is very nerve wracking as we wait to see if the spots in Katie's lungs have stopped growing or what is happening. We see many great things on the outside with Katie ( gaining weight, energy level, hair growing back) so we wait for the inside to tell us what is happening. At this point they are only scanning her lungs .. this is more important to deal with lungs first before they relook at the knee.
thank you once again for all your prayers, words of encouragment and all the wonderful gifts , support and everything

Most of you know that our faith is very important to us , I want to share with you a song that tonight is how I feel.. I can do nothing but wait and pray for Katie.. I have always loved this song but now it sure puts a different meaning on our lives.. I am hoping this link is the right one..

http://www.youtube.com/watch?v=H-M7oGrOa2I&feature=related

blessings and love to all
Katie, evelyn, brent , jacqui and john

Katie had a good appointment yesterday , her magniusm level is still a bit lower than it should be but she has pills for that. She is still feeling pretty good. We go back next Tuesday for a chest scan , they will then decide if she will continue on this drug .. so we are praying that the lung liasons will have stopped growing and that she can continue on with this .. as she really seems to be doing better on this one .

we are so thrilled , Make a Wish has called this morning confirming that Katie's wish of a Disney Cruise has been booked.. we are sooooooooo excited. We are all looking forward to a great family vacation and to get away from everything . What a great organization and Angela the gal in charge is wonderful and has been incredible. We feel so blessed.
We go in December , and cant wait :)

John's team is in the COSSA finals on Friday and we are heading to Peterbourough to watch that game which means Jacqui can join us to cheer him on..

then Brent and i are taking off for a weekend away. It is the National ALS walk meetings but it is still a weekend away for Brent and I .. which we are so looking forward to.
have a great day!!!

again THANKYOU TO ALL OF YOU for all your prayers, support and everything !!!

Blessings
Katie, Evelyn, Brent, jacqui and John

hi everyone:
justt a quick note to say a huge thanks to everyone for Kickin With Katie. It was an incredible day ( we got there after John's school won the Bay of Quinte Football championship...yippie- now on to COSSA - Central Ontario championship this friday) .
We want to thank so many who volunteered to make this happen, people/business who donated for the silent auction and the bands who gave of their time. there was a steady stream of people in and out . the bands were wonderful and we want to thank them..
Jacqui did an amazing job singing and she had a great band Stealing Patience to back her up ( these guys are wonderful) .
katie enjoyed herself although she was very exhausted after it all- she ended up staying the whole night.
there are many pictures up in the group from the event.
We were blown away by the support . so far almost $7500 has been rasied and we were also presented with another cheque for $1400 from THS students who brought their change in to the school .. incredible generosity on so many ways. This money will go to help with continuing expenses and to cover things when benefits wont cover it or run out . It is something you dont think about but insurance companies do place a cap on medical expenses . so when that time comes , this will help out so much. It also helps with expenses such as me not working right now, Brent taking days off, and just the incidentals that add up with going back and forth for treatments.
please know that we do not take this generoisty lightly, we are literrallly blown away by how generous all of you have been. It makes this journey so much easier. We truly are blessed and know that each of you have been placed in our lives and that God has a plan for not only us but for all of you. We cannot even begin to thank people for all that has been done but we do thank God each and every night for each of you and ask him to Bless you all for everything you all do.

We head back to Sick kids tomorrow ( on the train - loving via it is so much nicer to travel with them then deal with the traffic) for blood and check up. We will likely have scans next week to see where everything is at.

thanks again
blessings
Katie, Evelyn, Brent, jacqui and John

We had a good trip to Sick Kids. katie 's levels are all good and she gained another pound :)
She is feeling good and still has not had sideeffects with this new drug ( they told us that others on this have been experiencing some serious pain in their bones.joints but Katie has not)
they have also told her that she should be able to attend school for 2 or 3 days a week if she wants.. so we will be gradually getting her back into some routine that way .
we will know after the 20th of Nov when she has more scans to see if this drug is being effective on the tumours. she has another 2 weeks on this round and then they rescan.
Once again thanks for prayers, love and all the wonderful support. We head back to sick kids next tuesday for another checkup. (Blood counts can be done locally this week :)
We hope to see many of you at Kickin with Katie
again we will be there after the football game
GO JOHN and CSS... they play Moria for the championship..
jacqui is scheduled to sing at 6 pm for a couple songs ..
Thanks again to all involved with planning this event. WE LIVE IN AN AMAZING COMMUNITY.

blessings
Katie, Evelyn, Brent, jacqui and John

katie has had a very good week.. she is eating and feels and looks good. She enjoyed being a THS TIGER cheerleader for Halloween and so enjoyed going out and collecting the goodies.

We head back to Sick Kids on Tomorrow ( tuesday) for assesment and blood work. praying that all her levels are good so she can continue on this trial drug.

for those of you in the area here is the link to the event Saturday
http://www.facebook.com/event.php?eid=144267172284403
we are so greatful to everyone for all they are doing.we are truly blessed by our community.

you dont have to be there the whole time- you can come when you are able ( we actually will be late since John's football team CSS will be playing in the Bay of Quinte championships.. so we will be around after 4 pm )
hope to see many of you there :)

blessings to all
Katie, Evelyn, Brent, Jacqui and John

Katie has finished another week of the experimental drug. she is still feeling good. She gained 3 pounds in the last week!!! so in the last 2 weeks she has gained almost 5 pounds which is wonderful. she is eating well again and so far has not had really any major side effects.

Our trip to Sick kids on tuesday went ok.. the MRI couldnt be complete due to some issues so they will have to reschedule that. the trips to kingston were quick for ECG and blood work.. we got some good shopping in :)
we will know results on Tuesday when we go back to Sick kids.

We are busy with some family activites this weekend

John has the bay of quinte football semi's today.. of course it makes it interesting as he plays for CSS which is rival to THS ( Katie's school) so it will be a good game..
tomorrow we head to TO - but for a good reason.. I am humbled to have won a provincial award for excellance in fund rasing and awareness from the ALS society and will be presented with the award tomorrow. I will gladly accept this award in loving memory of my wonderful father in law Gary who passed away 7 years ago this week of ALS.
For those of you in the area.. the KICKIN with KATIE is next week .. hope to see many of you there...
so many people to thank for everything..
we are truly blessed.. even during a very difficult time and season in our lives .. we are so thankful that we have our faith , family , friends and community. We could not do any of this without it.

Blessings

love Katie, Evelyn, Brent, jacqui and John

Tomorrow ( Tuesday) we head back to sick kids for blood work, and assesment of the first week on the new experimental drug. Katie is having a good week, eating lots , spending time with family and friends . Please pray that all her levels are good ( blood, potassium and magnisum and all levels) we need them to be good to continue.
We also have a MRI on her knee- tomorrow so we will know at next weeks appointment the results of that -
Brent has taken tomorrow off work to come with us, we will come home tomorrow night, we then have to go to Kingston on Thursday and Friday for ECG's and blood work.
we once again are so thankful to all that are doing things for our family. Thanks to Bayside Public School for the incredible support last week at the BBQ and cards and gifts. Also to the four corners restuarant for being such a support.. Also to the County way restuarant.
to the Harpells and THS for the upcoming Kickin with katie.. we are blown away by the wonderful community we live in!!!!
To everyone whose names I cant write down - I might miss someone and the list would take up hundreds of pages....
we love each one of you and are thrilled to live in such a wonderful Quinte area!

Believing for a great week for Katie!!!
Blessings
katie, Evelyn, Brent, Jacqui and John

well after a few bumps in the road, katie finally started her new treatment of the trial drug today :)
we have no idea what it will do or bring.. but we are trusting this is the one that will bring a stop to the tumours growing.
we have one more test tomorrow ( ECG ) they have to check her heart after being on the drug overnight and then we go HOME!!!
the nice thing with this drug is it is taken orally, and she takes it days 1-3 has 4 off then another 3 days on then 4 off ect.. for 28 days.
We come to Sick kids every Tuesday for the next month for assesment and blood.. we also have to do blood work every friday but we can do that at home. and for some of the tests we may be able to go the the childrens cancer centre in kingston... so we will be home much more :) it will be nice.

Many of you heard or saw my rant about the hotel costs in downtown TO... we have had to find places to stay since we are out patient.. well the Delta Chelsea says it has a hosptial rate but rarely offers it... we were paying 200 bucks a night this week which is plain highway robbery.. ( we choose this for the convience of walking to the hosptial - which we really need with katie in the wheel chair.. ) price line really didnt offer much of a different rate when i looked and with hotwire we dont know which hotel we would get or if it would be accessible so we really couldnt use them... which is too bad.

long story short- i went to the manager and told them it was highway robbery and that they should offer the rate at all times to families in need from the hosptial.. he said he really couldnt do that .. but in the end he reduced my rate from 200 a night to 119.. and told me that any time i come back to talk to the people at the desk and they will do their very best to get me the best rate available...

While we were waiting for all the tests today and the pharmacy to get the drugs, katie took part in many of the craft and games offered by staff of Camp Oochigeas - which hopefully katie might be able to attend a teen weekend in november..
she had fun and didnt want to leave the hospital while waiting in between tests.. so it was good,.. and she made some cool stuff , ask her about the bandana pillow she made with no sewing involved..

many blessings , check out the group page for the event Kickin with Katie.. it will be a great day ( we will be there .. we will hopefully be late because that is the Bay of Quinte Football Championship Day and we are planning on watching John and his team win that day...)
thanks again for everything!

love Katie, Evelyn, brent, JAcqui and John

just a quick note:

please pray that Katie's magnisum levels come up, the hospital called today and said her levels were not good therefore she is not allowed on the trial..
thankfully the hosptial has re reserved a spot on the registry of the trial and it is good till next week..( there is a small window with these trials and if you get off the list it could be hard to get back on it)
so I had to go to three pharmacies to find the right pills , to get her started to get the levels up
we go back monday to check her levels, so please pray
thank you

love Katie, Evelyn, Brent, Jacqui and John

Hope you all had a great Thanksgiving.. we did ( I have just added group photos of our thanksgiving walk to the big boulder) they are in the photo section of the group.
Katie and I went to Sick Kids today and met with the REsearch Dr. and the team for this experimental drug. It is a phase 1 drug which means Katie is one of the very first children ( anyone under 18) to try this. It has had sucess in test tubes and in anmials.. and they have tried it in some adults.. it is called ADVL0919 phase 1 RO4929097 ( isnt that a fun name)
Today Katie had EKG, x rays, blood work, cat scans to ensure she could be registered in this trial.
We go back next Monday to begin ( we will only have to stay till tuesday but we are considered an outpatient ) so we will be staying at the Delta hotel down the road from Sick kids ( unfortnately the Westin is not available )
we will for the next month head to Sick Kids each week ( usually for a one day or two days depending on the week) . She will take this drug for one cycle ( which is considered 28 days) she takes it for a certain number of days then has some off . after the 28 days they will reaccess her to see if it is doing anything, that it is safe and if she will stay on it or be pulled off.

We are prayign that this will be the drug that will at least stop the tumors from growing and spreading any furthur. It is a scary thing knowing that your child is literrally a guinea pig in a drug trial. but it is what we must do at this point and we put our trust in our God and in the wonderful medical staff that is working so dilligent for Katie.

Again thanks for everything and all that is being done to help our family. We are so blessed !
here is an incredible event that the Harpells and THS are doing for our family.. THANKYOU
http://www.facebook.com/event.php?eid=144267172284403

have a great week!
Love Katie, Evelyn, Brent, Jacqui and John

Happy Thanksgiving!!!!
We have arrived home after a day at Sick Kids.
We met with Dr. Gupta and her team.
they are a wonderful team and have welcomed Katie and us with open arms. We are looking over an experimental drug trial ( we have the paper to read all about it this weekend) . It is literally a brand new trial . We go back on Tuesday to have some pre tests to confirm that Katie is eligible. But it looks very promising. The nice thing about this one is she will be an outpatient and she will need to go up to sick kids for blood work and a few other tests.. but will be able to take the pill
( it is pills and not chemo thru conventional means) at home :) so our trips to TO will hopefully slow down :)
katie is feeling really good and looking forward to Grandma's turkey dinner and lots of family this weekend and a trip to the cottage :)
We stopped in to Mt Sinai to say hi to the gang and 11 South- we love them ! She had a great visit with some of her chemo buddies.
we got out of TO by 4pm and got home by 6:30.

So to everyone HAVE a very BLESSED THANKSGIVING!!! Take time with family and friends and give thanks for what a great country we live in and what wonderful things have blessed your life.

Love Katie, EVelyn, Brent, Jacqui and John

THANKYOUUUUUUUUUUUUUU to all who helped with the bake sale, those who baked, those who bought , those who just gave donations, we are overwhelmed by the support. thank you to Aunt Debe and her co worker Teresa Snarr who first had the idea and then let it burst from the seams. Everyone we so appreciate it. over $2700 was raised and we are so thankful for that! It was a great time, katie enjoyed herself very much so . Thank you to the Trenton Golden Hawks Jr A team for coming out and supporting Katie .. we really appreciate it. thank you to all... words cannot express our thanks enough.

As previously mentioned Katie was suppose to go to Princess marg. for a study/ trial, we have received word that she has been rejected for that due to her age ( she has to be 18) , so we now will be seen by dr. Gupta at Sick Kids . ( she covered for Dr. B. while on holidays) so we know her, but katie will now go to Sick kids and we will see what the next plan of attack will be. We go on Friday to meet with the Dr.

katie has had a great weekend spending time with family and friends.
I have had a great weekend at a ladies conference for Eastern Ontario District of our churches. It was a great time for me and i so enjoyed the worship and the speakers. It was what I needed.
brent and John are in Ottawa ( but NOT cheering for the Sens) and Jacqui was able to go to wonderland with friends ..

again we are overwhelmed and so thankful for the love and outpouring, It really shows us what great family and friends and a great community we live in.

love and blessings
Katie, Evelyn, Brent, jacqui and John

a quick one!!!

KATIE GOT THE CHEST TUBE OUT!!! there is still a little pneomthorax but it is very minimal. She was estatic as i was as it means no Trip to TO..
We then went to Trenton HIgh where they were having the Terry Fox Run and katie spent almost 2 hours with her friends. THANKYOU TIGERS for all you are doing!!!!
Tomorrow is the Bake sale in Trenton- thanks to everyone who is helping with that!!! so appreciate it!
Also JB Printing has given katie an incredible postor... that says ATTITUDE is everything!!! and Katie has a great attitude!!!!

HAVe a great weekend!!!!!!!!!

Blessings
Katie, Evelyn, Brent, Jacqui and JOHn

just a quick message:

Katie had an incredible evening tonight at the ALS hockey game. The OPP officers presented her with two Sidney Crosby jerseys. an auto graph picture of him and one to take to himn to sign for her.. and Mayor John Williams gave her tickets to the PENS vs LEAFS game :)
in March ..how exciting !!!

please pray as we head to our local hosptial in the morning to have her chest tube clamped. pray that her lungs will be ok without the chest tube and that it can be removed and that all will go well so that we dont have to head to TO for any complications.

thanks

love
Katie, Evelyn, Brent, Jacqui and JOhn

Well we are home!!!
Arrived home last night , it was so nice to sleep in our own beds :)
Katie still has the chest tube in, we will go on Thursday to the hospital ( here at home ) and have them re xray her lungs , then clamp the tube , we then wait 24 hours to make sure that the lungs stay clear. so please pray that it stays clear .
We then wait till after Thanksgiving weekend before we go back and meet with the doctor ( He is overseas at a conference or speaking I believe ) to figure out the next plan of attack.
We need here blood counts to stay normal ( she has recovered nicely over the lower counts) and that the pnemothorax in the lungs leaves for good. -
so in the mean time we will enjoy time at home with family and friends.
She had two friends over last night playng monopoly.
The bake sale on Saturday actaully starts at 8 not 9.. it is at the farmers market in Trenton. If she is feeling up to it and weather is good , Katie might show up :)
also hoping this week to get into THS and hopefully in there for the School's Terry Fox run .
so we will enjoy some time at home -
once again thanks to everyone for everything

blessings
Katie, Evelyn , Brent, Jacqui and John

faith is believing in what you cant see Hebrews 11:1

and at this point .. it is our faith that will carry us thru this journey and all that comes with it. We believe in a God, that no matter what, gives us the strength and grace and all we need not matter what is literraly tossed our way.

The news is not what we wanted to hear. The tumor is katie's knee is getting bigger, and the lungs for the most part hav, e not changed . 2 of the liasons have gotten slightly bigger.. but because they have not shrunk and the knee has not shurnk.. it means the lastest drug that katie was on is not working.
there fore at this point surgery is not an option ( they cant do surgery when the tumor is not shrinking- you dont want to go in and create more problems.. too long to describe why but these doctors know wht is best )
so it means we have to look at another treatment
so Dr. Blackstien is going to get uis hooked up with a study .. this is a research way of doing treatment. In Boston and in New York there has been good results with this particular study with osteosarcoma patients, so we try this. we will probably start this the week after thanskgiving.. the reason we are waiting is that katie's white counts must be back up to normal or almost normal..She will be having this treatment done at Princess Margaret hospital.. with Dr. B still being our oncologist.
she was orinigally scheduled to go back oct 6 so it is only 5 days after that she will go back
and Dr. B is away at a conference. so we will have two weeks home to enjoy with katie..
we have the CSS vs THS football game.. ( john's school vs Katie's school) , we have the ALS chairty hockey game the Terry Fox School Run at THS, we have the bake sale for katie that aunt debe and many others are doing.. I have a womens conference.. and we have THANKSGIVING!!! which this year we are very thankful for each day we have with our family and friends.

We will be in Mt. Sinai till Monday. Katie's collasped lung is all better and back to normal but they will re xray it on Monday and then we will go from there. SHe will have the chest tube taken out at home later this week. so that is our life in a nutshell..

once again thank you for all your prayers, words of enouragement ,comments and EVERYTHING.. it helps us get thru all that we are going thru..

blessings to you all
love
katie, Evelyn, Brent, Jacqui and John

well .. another bump in the journey
today we came up for blood work and the chest scan and MRI.
Katie's hemoglobin was extremely low and therefore she needs a blood tansfusion ( which we were kinda expecting)
but the big bump was Katie has Pneumothorax which means she has air in her lungs and she has a a partially collasped lung. they quickly saw that in the chest scan and took her in for a procedure to have a chest tube put in. She came out of that with flying colours and has been resting comfortably since. She watched survivor and we are now awaiting the blood transfusions ( she needs 3 bags )
We are not sure how long we will be in the hosptial -slight chance that we might get to go home tomorrow but we will have to wait and see .
We should have the results of the MRI and chest scan tomorrow and will see both dr wunder and dr blackstien . We just ask that you pray that katie will sleep well tonight as she is in pain from the procedure... and that no matter what the results are... we are still trusting and believing for a wonderful miracle for her. IT has been a tough and long day but Brent and I are holding up ..
Congrats to the CHARGERS for winning their opening football game vs Quinte,,, way to go John and the team!!!!
Jacqui is having a great week at school :)
thank you all for your thoughts comments prayers and words of encouragement
We continue to be blessed by everyone around us.
oh and the doctors ( Bless their hearts ) made sure Katie was admitted on our floor (11south) and not the other floor :)
they are so wonderful here and i love the way they treat and spoil her... she deserves it and it makes a mothers heart feel so much better!!!

love
KAtie, Evelyn, Brent, Jacqui and John

Hi everyone, we are on day 2 of chemo this week and Katie seems to be doing well.. she actually gained 2 pounds :) which is great she has lost almost 45 pounds so the 2 pound gain was wonderful!!!!
         We also have been switched to a 4 day protocal instead of 5 day means we get home on Friday instead of Saturday :)!
         She is enjoying tv at the hosptial ( thank you to those who have contriubted to the "tv" fund it is such a blessing !!!!!!! ). It helps her get thru her treatment watching her favourite shows ( she is so geared up to watch the start of Survivor on wed night .. new night for all you survivior fans :P) Her goal is to one day be on survivior :) she figures she can do it easily which i know she will do!!!
         For those of you in the area ( Trenton- Quinte area) there is lots happening this weekend.. We are once again involved with the Walk for ALS - this is a great cause and we walk on Wilson Warriors team in memory of my wonderful father in law Gary and Katie's grandpa.. it is at Zwicks park at 10 am. Also on Saturday at Calvary Temple Church is a Buck a bag clothing sale and Bake sale. We feel very blessed that they are donating proceeds to Katie's journey. ( if you are cleaning out your closets and need somewhere to take the clothes you can drop them off at the church )
       On Sunday we will be taking part in Trenton's Terry Fox run.. we have always been a huge supporter and for those of you who know me.. Terry Fox is my all time hero and i did speeches , projects and scrapbooks on him.. and of course this year it sure has a very special and different meaning for our family. IT is because of what Terry Did my baby has a much better chance of survival .. so take time to walk or sponser someone who is ( the national school day walk for Terry Fox is on Sept 30 ) so thank you for supporting a great cause..
also on Oct. 2 at the Trenton Farmer's market our aunt Debe and friends is doing a bake sale for our family as well.. thanks so much so if you are looking for great baking.. she is awesome come on down..
      We sure appreciate and are overwhlemed with all the wonderful support and gifts and all that everyone is doing for our family.

     Next week will be a crucial week for Katie as she has a follow up MRI and cat scan.. please pray that it will show improvement with these new drugs and also that her hemoglobin counts will improve - she is on the crucial levels that she will need a blood transfusion.. so please pray that levels rise and that all will go well with the scans.. ( we will find out the results later in that week)

Once again thanks so much for all the prayers, donations, support , cards ( katie loves getting mail) and everything. we are truly blessed..

love Katie, Evelyn, Brent, Jacqui and John

WE ARE ON WAY HOMEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!
they told us on the weekend that she would at least be in till tuesday or wednesday.. but Thank God her levels were all good ( potassium is low but we can take pills for that) and they released her!!!
we rushed to the train station to catch the next train and we are on route as i type :):):):)
cant wait to be home!!!!
thanks for all the support and the comments about the updates and advocating for katie.. it has been a GREAT DAY!!!!!!!!

blessings to you all
love Katie, Evelyn, Brent, Jacqui and John

FIRST OF ALL" if you DONT want these emails... PLEASE leave the group.. this is our way of getting the info out.. please dont send me an email to not send these updates out this is our lifeline connection to our family and friends.. the only way they will stop is for you to leave the group.. THANKYOU
and TO ALL OTHERS.. THANK YOU THAT YOU TELL ME HOW MUCH THESE UPDATES MEAN TO YOU... and for all your support and prayers.

well it sure has been an eventful labour day weekend. We finally got settled at the hospital but not after some nightmare issues/ They said the only bed for katie was on the 17th floor.. basically a gereactic floor, we were roomed with a dear old lady but one who had some serious issues , Saturday night was awful .. katie got absolutely no sleep so therefore i never did, the woman was up all night making nosies, coughing gagging yelling ect so in the morning i just had enough and started to make some noise about moving katie back down to 11South which is "her home" here at the hospital with all her nurses ect and a great enviroment for her, I was told that it was NOT going to happen.. well tough a mother has more power to fight for her kid that a simple no.. so i came down to our floor and again they are awesome and they brought in the supervisor and in the end.. WE WON ( the supervsior from floor 17 was not happy with me at all but tough.. I will do what needs to be done for my baby and will fight tooth and nail for that) so katie was moved and had been comfortable since ... her temperature has disappeared her heart rate has returned to almost normal, her colour in her face has returned, her happy lucky attitude has also come back .. her levels have started to return to normal quicker than they were upstairs.....and last night SHE SLEPT the whole night and is still sleeping and doing much better
we will probably be at least here till tuesday maybe wednesday depending on her white counts so thanks to everyone for their prayers and concerns....she is doing much better
Jacqui got mostly moved up to the dorm, Brent took her up and she is beginning to settle in we will finish moving her up later when we get home but thanks to those who offered to help if need be, but she has got the basics with her for now. we are excited for her to begin this new season in her life.
John well he is going to have to get out of summer mode and be ready for his 7 am bus... and of course there is FOOTBALL SEASON... looking forward to his SR year and bring home the championship kiddo
Brent had to take a couple days off this weekend because of the ER situtation we had and he did lots of driving between home and Toronto and PEterbourough and back to Toronto so please pray for him as he is exhausted from all the driving he has done ..
once again thank you to everyone for all your support and prayers and generosity we sure appreciate it. Hoping to be home soon

love KAtie, Evelyn, Brent, Jacqui and John

well it has not been a good night/day..
after we enjoyed some time at the cottage we came home and around 11pm(Friday night) when we took katie's temperature.. it had spiked..so we had to take her into the ER.. Trenton was wonderful but they really do not have the facilties to deal with chemo patients. They kept her comfortable while we waited for her blood work.. along with a very high temp, katie's blood levels were very low ( she was .68 and she needs to be at least 1.5) so we then were sent to come to the ER at Mt. Sinai. the we got here at around 6:00am ( so needless to say Brent and I did not get any sleep last night) they began to do a battery of tests and blood work and blood transfusions so that they can discover why she ran a fever ( they finally got it under control by noon today - it had spiked as high as 38.9 ) and find any infection .. with this hosptial being a teaching one.. we have seen a few residents and they have asked a million questions and poke and pried all over katie.. but it is nice to know that she is being taken well care of.
we are waiting on results of a chest xray to rule out pneoumia ( sorry cant spell and at this point dont care) .. and now we are also waiting for a bed to open up so we can be moved from ER to a room.
katie is very tired but still cracking jokes with Dad and the nurse.

please pray that they will find out the cause of the fever and that her levels will return to normal.. ( she has recieved so far 2 blood transfusions) .
this is making it very difficult on us as this weekend we are suppose to move jacqui up to her dorms... this is the day that i am really struggling with as i cant be in two places at the same time.. and i should be helping jacqui get ready for a new exciting time in her life and yet i need to be with katie at the hospital..
so please pray that everything will be discovered soon and a bed so we can get rested ...
thanks for all your love and prayers and all the support we sure appreicate it..

love Katie, Evelyn, Brent, Jacqui and John

Hi everyone.. sorry i havent updated everyone this week.. it has been one of those weeks...
plus with Jacqui out of country we needed to deal with her first and foremost... she is having a wonderful trip in africa and has been having a wonderful time , she is on a safari this weekend to finish up the time and will be home next Wednesday...

well the results of the cat scan and MRI were a total kick in the stomach.. they were not what we were hoping for or even expecting.
The tumour in her knee has not shrunk as we thought it was.. the reality is the shrinking was katie's muscle mass .. the tumor is now taken over her whole knee.. and without a major miracle .. Katie will lose her leg. Now katie is ok with that.. she has accepted it and even says" well now i will have only one leg to have to shave " she still has a very positive outlook. She is" planning and thinking" ahead to play on the Canadian wheel chair bball team in the 2016 para olympics :) what a goal for her to have and i will be right there in red and white to cheer her on..

and the lung spots have also not responded to the original chemo.. and some of them have began to grow..
so with that said, they have switched her to another chemo protocol.. ( i will look up the drug name and let you know later) just as i got use to knowing three drugs she is changed.. so Katie really needs your prayers that this new chemo will attack these tumors. We will do this drug protocol for 2 x.. this is a 5 day drug so when we go home on Monday we will have two weeks off and then come back for another 5 day cycle.. they will then do another scan and MRI and deterimine if they will do surgery or give her more of this cycle..
so needless to say.. it has been a week that we didnt expect but we are still keeping a positvie outlook and trusting for a miracle for Katie. Katie does seem to like this drug better as she is not a sleepy during the day and is sleeping well at night.. she also is eating on this drug.. she had a steak and potatoes last night and had the left overs for breakfast today.

with the swtich to this drug.. we will now be having the expensive needle ( $2700) every three weeks now instead of every 5-7 weeks.. some have asked.. yes Brent's benefits cover it .. for now.. there is a cap of $25000 which of course adds up quickly with this drug and another perscription she gets that is not covered by OHIP as well but we will deal with that cap when we have to..
we spoiled katie this week with a tv in her room.. didnt realize it would be $65 for 5 days but to see katie smile and watch some of her favourite shows is worth it..( talk about highway robbery since that is more than we pay for a month of satalitte) but since she cant really go down to the lounge we do what makes her comfortable and less bored.

so with this drug we will be realeased on Monday morning to go home for 2 weeks. so please just pray that this new drug protocol will do the job we need it to do. thank you for all your prayers, support and gifts .. it is a great support system we have and we really do appreciate everything.

blessings to you
Katie, Evelyn, Brent, jacqui and JOhn

well Katie is home now and resting well.. she has had a very good week during this chemo treatment. She didnt eat much at the hosptial. but on the way home last night she texted me ( I had come home earlier as I am officating at Steph and Jesse's wedding) and said she wanted Golden Valley food.. but then Katie decided she wanted the Mandrin.. go figure she hasnt eaten all week and then wants an all you can eat buffet :P
so she ended up eating a fair amount there which is incredible since she usually doesnt eat much on these particular drugs. So that is wonderful.

Dr. Blackstien is very pleased so far as to how Katie and her knee is responding to the chemo , once again thanks to everyone for praying, we sure feel the prayers.
We now have this coming week off - will head back on Monday August 16 for an MRI and cat scan- go up for the day and come back. Katie is scheduled to go back for her next chemo on Wed. August 25.
In the in betwen time we just keep a watch on Katie's temp.and allow her to just have some down time at home and with family and friends.
this week she will be able to help Jacqui get ready for Africa. she leaves on August 16 so that will be exciting for her.

blessings to everyone:
Katie, Evelyn, Brent, JAcqui and John

Subject: August 4

well we are in TO and katie's counts are all good to go. She is on her chemo as we speak ( or i type) . She will be here till Friday and then home for a week . and Aunt Marie came by- nice to have a dr. in family.. she has offered to do katie's needle at home on Sunday which means we dont have to have home care this week :)( that is the needle that costs $2700) . on Monday August 16 - we come back for a chest cat scan and an MRI on her knee/leg. They will see then how everything is coming along. The dr. is very optomestic that everything is going well. He is pleased with the way her knee/leg is looking. And we will know then how the lungs are doing as well. So this is usually her "yucky" week so we are praying that all will go well and she wont feel too bad this week.
Brent will come up tomorrow to relieve me at the hospital as I have a wedding i am officating this weekend. ( congrats Steph and Jesse) , so i will see my honey tomorrow - one day after our 20th anniversary :)
Jacqui is getting last minute things done as she gets ready to head to africa :) and John is having fun at home ( typical teen during summer)
thanks again for all the wonderful love and prayers and support. we sure feel it all..
Blessings
Katie, Evelyn , Brent , Jacqui and JOHn

Subject: july 26

well we came to TO for this week, but Katie cannot do the treatment. Her blood counts were good but her enzymes level is not .. this could affect her liver so they wont do the treatment this week as this weeks drugs are very hard on the liver.. so we are being sent home.. we will try again next week . She has not been feeling well today at all ( I think she had such a great weekend home that she pooped herself out ..but it was a great weekend) so we are waiting for Brent to drive in and get us at the hotel and we will be home later today. Please pray that Katie will have a restful week at home.
thanks for your love and support

Blessings
Katie, Evelyn, brent, jacqui and John

July 23, 2010 at 10:06 pm

Subject: July 23

well we finally got home :) Katie's level was great- very low which means she only had to take some medicine once tonight instead of every 6 hours.We took the GO train home and Uncle Jasonpicked up us i oshawa and we visited with him for abit and now are home till Sunday.So it is a short time home but it is home

Katie arrived home to a wonderful new bedroom that my sister Sarah and my mom redid for Katie with the help of our families. It is wonderful ! Katie is thrilled!

Again for those of you who missed it.. I had another one of those "phone calls you dont want to get" Brent called this morning to the hospital and informed me he had been in a car accident ..
the new ( well new to us) Saturn that we got just a couple weeks ago to replace the car that John totalled.. well this one is totalled to.. but again Brent is fine and cars can be replaced .. the other driver has been charged
but the one thing i am looking forward to is Tomorrow- everyone will be home- jacqui is on her way home from OVPC and for the first time in almost 2 months we are all home together. I look forward to that even if it is only for a day.
sunday is the sarcoma walk in trenton.. if you are around please come to city hall at 1 pm.

and to those of you who helped congrats to ENSS ( yes a rivial high school) but who cares.. TSN is coming and they are getting $25000 towards their new track.. that is awesome..
so take time to enjoy the simple things in life.. and have a great one!

blessigns
Katie, Evelyn, Brent , Jacqui and John

We arrived in TO on Sunday night after a nice visit at Lakeshore with some friends. The Westin hotel is a very nice place to stay - we feel so blessed that they donate a room for the week for us. We enjoyed a lovely time , John is with us and we had a great time in the pool and relaxing in the room.(Jacqui is at OVPC and Brent is home working this week) We checked back into the hospital mon- her blood counts were great. we then have the day off on mONDAY to go and just relax - this week katie wanted to go back to the hotel and we enjoyed a relaxing day. She was hooked up to the fluids Monday night ( they need to ensure that her kidney's are functioning well) and she began the chemo today at noon.She is still eating well and so far not been sick :)
We hope to be out of here on thursday- but that will depend on the levely
of the drug in her system.
There are 5 other chemo patients here this week with her- all but one are under 20 and all have the same osteosarcoma as her. They are lots of fun
and there are a few others here ( Amelia is a friend we met in June and she is a great resource and wonderful support )
once again thanks again for all your love, support and prayers. We really are blessed to have such great family and friends.

love
Katie, Evelyn, Brent, jacqui and JOhn

Subject: july 15

well it has been a great week so far! today it was awesome for Katie as she has recieved a very special package from Pittsburgh Penguins her favourite hockey team. One of her dr's is from pitts.. and he made a very special call to the team- she recieved a number of wonderful gifts from the team , it really made her day.
she has had a really good week at home, she has gone to the movies with family and friends to see toy story 3, she went to a pool party for the youth at the church and has had friends over to the house and is in really great spirits.
She is eating very well.. she is eating lots and often which is really good.
We head back to the hosptial for Monday July 19. We will be heading back on Sunday to Toronto and enjoy an evening in the Westin hotel. ( they are wonderful and donate rooms)
once again thank you to everyone for your prayers and gifts of love, and everything. we feel so blessed.
We know that Katie is doing as well as she is because of the love and prayers and support of everyone

love KAtie, Evelyn, Brent, Jacqui and John

Subject: July 12

Hi everyone- Katie was able to come home on Friday night and has been doing well. I just got home from Ottawa Valley and it was great to see her, she is doing well and we will enjoy a nice week at home. she was able to enjoy some friends visiting and she also attended a birthday party for our special little friend who turned 2. She spent Monday with her grandma and cousins making crafts and playing.
Once again thanks so much for everyone for everything that you are doing. We really appreciate all that is being done for Katie and our family. It will be a quiet week as Jacqui and John have both stayed in the "valley" with friends. Brent will have his break starting wed as he goes on his annual guys fishing weekend ( notice that the weekend will start on Wed..lol) so we are enjoying our summer and know that all the prayers and encouragement is getting us thru this journey.. so once again THANKYOU all for EVERYTHING.. we feel really blessed to have such great familyl and friends and a great community that is surrounding us!

love and prayers to you all
Katie , Evelyn, Brent, Jacqui and John

Subject: july 9

Katie has had a fairly good week, but the drug methotrexate needs to be out of her system before she can be released. Her number was not where it should be so Brent and her will find out today at 4pm if they can go home today. The Dr. also wants to give her body to have more than 48 hrs to recover so she will not be having chemo next week. But the nurses reassure that this happens and katie is not the first patient that this happens to. Brent says she is just anxious to get out of the hosptial and go home. They are giving her lots of IV fluids to help flush it out of her system. She had a lovely surprise phone call from the Dr. Wise who has gone back to Pittsburg... he has been in touch with the Pittssburg penguins ( katie's favourite team) and is working on some speical things for her ( like getting Sid the Kid to phone her) so that is so wonderful that this Dr. has done this for her.. please pray for Dr. wise he fell down stairs and broke his hip and ribs and wrist so he wont be starting his new job soon.. he is the dr. that survived osteosacroma and has been a huge inspiration to us. thank you once again for all your prayers, comments, gifts and everything. It is a day by day journey for us and we know our God is faithful thru it all.. He is what helps us daily go and take the next step and knowing that He is in control and is always there for us.

Blessings to you all
love
Katie, Evelyn, Brent, Jacqui and John

Well I finally am able to get on line- the internet was down at camp .. so i have talked with Brent and Katie .. they are settled at the hospital , they spent the night last night at the Westin harbourfront - what an incredible hotel chain ( they provide free rooms for chemo patients ) what a blessing! they watched movies and spent a great evening of father /daughter time.
they checked into the hospital this morning- her blood count was excellent, the chemo is now starting tomorrow - they have decided to make sure she is hydrated for the treatments .. so Brent and Katie got to go and enjoy the hockey hall of fame.. and some time in downtown Toronto. i spoke with them around 7pm tonight and they were again enjoying some daddy/daughter time.. waiting for the staff to start her IV.. her spirits are still very good .. she is now bald... she finally lost most of her hair and shaved the rest off.. she also shaved daddy's hair with a funky design.. i am waiting for those pictures and will post them when i get them... so this week will be an interesting one for me as i am in the Ottawa Valley at camp and they are in Toronto.. but i have a wonderful support system around me and i know they have one in Toronto... so once again thanks for everything and all the prayers and comments and all the wonderful generous gifts that everyone has done for us.. we are forever greatful for a great family, friends and community that is helping us thru this.
love Katie, Evelyn, Brent , Jacqui and John

Katie has a great week at camp, she has been spolied by all her friends, and has been feeling great. the one issue we have had is that she has broken out in a rash..and we were not sure what it was. We decided to take her into the renfrew hosptial to have it looked at, while we were there they did some blood work to ensure that her white blood cell count was good and that the rash was not associated with treatment or an issue that could turn serious. her blood count came back perfect:) which means her immune system is doing very well. so they are not sure what the rash might be, but as long as she doesn t have a fever or it spreads, she is ok ! I must say that the Renfrew hospital was incredibly wonderful what a great staff and they looked after her beautifully.. they ensured she was comfortable the whole time and were really fabulous.. despite the fact that there are issues in our health care system.. there are some fabulous healthcare workers that sure make patients and their families feel wonderful.. so thank a dr.. a nurse.. any hospital staff member.. they deserve it!
she has mixed feelings about checking into the hopstial on Monday, it means she has to leave family camp at OVPC and this has been such great medicine for her. Brent will take her to Toronto on Sunday and they check into the hosptial on Monday morning. The chemo this week is a Mon- Thursday one. I will be staying at OVPC with Jacqui and John . so hopefully we will be able to up date you as brent will be learning this week how to text .. so he can keep me updated and i will be able to keep you guys all updated during this time. This week begins a 3 week cycle of Mon- Thursday for the first two weeks and a MOn- Wed the 3rd week.. so it will be a greulling next couple weeks but we know that your prayers, comments and encouragement will get us thru this time.
when katie is ready.. we will get some pics up of her new look.. her hair is beginning to really fall out.. and she still has a fabulous attitude..
again thanks to everyone for everything.. We really do appreciate all you have done for us and continue to do so.

Blessings to you all
love
Katie, Evelyn, Brent, jacqui and jOhn

well OVPC is a huge boost for katie's spirts.. she has been doing very well, she is eating well, having fun with all her friends, it is quite fun watching them take turns pushing her wheelchair around and the rest of them all around in a swarm like a harem or a queen surrounded by all her servants.. they are all wonderful and very helpful. this camp is an incredible one and the people are fabulous!!!!!!! it is a great way to spend the time away from the hospital. She is so happy to be in this wonderful place and be surrounded by so many who are loving on her and praying for her.
Her hair is now falling out so we will post the new look soon..
we will take a quick ride home ( well 3 hrs there and back) tomorrow as big sister Jacqui graduates from TRenton HIgh... we are so proud of Jacqui .
once again thank you to all for the comments, prayers, donations, and gifts , it all is a wonderful boost for our family. We have the best family and friends and we are so greatful for all that everyone is doing! It sure makes this journey a lot easier.

Blessings to you all
love
katie, EVelyn , Brent, jacqui and john

Subject: june 23

it has been a fairly good couple days for katie.. today she asked for pizza and coke.. that is a good sign that she is hungry and wanting to eat.. guess she is getting a little tired of just eating rice..lol
she is back to being a bit more of herself today.. she had vistors yesterday of some kids she has babysat for , it was nice to see her smile and laugh with the kids , today some friends from school came over and once again to hear her laughing and telling the "gossip" of high school is a good thing.
her hair is beginning to thin and maybe a few strands starting to fall out.. but nothing major at this point ( they said that would likely happen 10-14 days after the start of chemo. she is really excited about heading to OVPC ( our church camp ) she is thrilled she will be able to see her friends from the Ottawa area..
once again thank you to everyone for everything. We are truly blessed and are so thankful for everything.
on another note katie is getting excited for her sister's Prom on friday night. It will be a great night for jacqui and we are very proud of her and cant believe she is graduating from THS .. GO TIGERS!!!

Katie, Evelyn, Brent, Jacqui and John

Hi everyone.. first of all THANKYOU all for everything!!!!!!!!!!!
We have been blessed by the generosity of everyone. We have been blessed by the many gifts and outpouring of support. We now own a laptop. Katie has one and I now have one.. thanks to those who contributed to that..

I apologize for the delay in the updates.. the hospital has BANNED facebook so I cant get on fb to update..but we are looking into a rogers rocket stick or bell one so that we can override that...

So we are now home for 2 weeks ( well we will be heading to OVPC in 10 days... yippie)
Katie has done incredible this week. She began her chemo treatment on Monday and finished her first week on Wednesday. The drugs she is on this cycle is Doxorubicin and cisplatin. They tell us these are the two toughest of the drugs and the tougest week of all is this week. so she has done absolutely incredible .. she has been sleeping lots and has been nauseated but has not been "sick" which we are very greatful for. Today she got an injection of Neulasta which is a drug that has proven to be very successful in treating those who have chemo .. it is a very expensive drug( $2700 per vile and Katie will need at least 5 of them) ( if you are looking for a cause.. ask your MPP or your MP why such a successful drug for cancer is NOT covered by OHIP)

so once again please continue to pray that when we drive to TO that her counts are good .. it will not be fun driving to TO only to have to turn around and come home. WE are continuing to trust and know that God has everything in control and He has been with us this first couple weeks and we know he will continue to walk with us thru this journey

again we thank each and everyone of you and all your comments, thoughts, donations and mostly your prayers. we are so blessed with a great family and friends. The hospital staff is incredible and they have taken to katie ( they usually dont get them this young ) and they are spoiling her and loving on her wonderfully. They are all so impressed with the outpouring we have recieved. It is a testimony of what a great community we are from...

thanks for your patience in waiting for an update..

on the homefront- thanks to my family and some friends who have come and helped "sterilize" the house
jacqui was asked to perform today at THS year end assembly- she sang a song she wrote ( I am hoping that someone taped it) and has been asked to sing O Canada at her graduation . We are very proud of her

John has recovered nicely from the accident and has been a huge help around the house as well as jacqui! They are sacrificing so much right now and we appreciate those who have been reaching out to them as well so they are not forgotten during this time.

we love you guys

Katie, Evelyn, Brent , jacqui and John

We have had a bit of setback.. they have found some lesions on Katie's lungs but we are going to fight this with everything we have. We appreciate all the love prayers and support thru this all.. the dr. will be in today to discuss chemo and the schedule we are facing. It will be a lot of back and forth to Toronto.
many have asked what you can do.. Katie loves Archie comics, has a DS, Timmies or Subway cards are good.. she is not fond of hosptial food.. once again we are trusting a Great God to get us thru all of this. thanks again..
We are really appreciating of all your encouraging words, prayers and all that is being done.. We are in the best hosptial for this rare form of cancer.. we have Dr. Wunder who is the worldleader in this
We thank you all so much! probably won't have a computer for now a couple days the other patient whose we have been borrowing hers is leaving .

We love you all
Evelyn Brent Jacqui John and Katie

June 11 @ 6:00 pm

Katie was officially diagnosed with osteosarcoma (Terry Fox cancer) on June 7. she is at Mt. Siani and is under the care of Dr. Wunder he is one of the worlds best in the feild.