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Old 01-09-2014, 03:22 PM   #1
jkread
Earning My Ears
 
Join Date: Dec 2013
Posts: 20

Kaylenes MAW/GKTW Pre-trip Report

Hello everyone!

I am very glad to have found this amazing community!

A little background on Kaylene (wish child). In late 2012 Kaylene started to have head aches. There was nothing more out of the ordinary, she'd say she had a headache and we'd respond by giving her tylenol and on her way she went. Every couple of weeks she'd say "Mom, I threw up this morning but I'm not sick". I thought that was odd but she said she was good to go to school so again, off she went.

One morning about 530am I received a text form my husband (I work nights). He said Kaylene was crying because of the pain of her head ache and puking from the pain. I got home from work at 8am and gave her some tylenol. She seemed okay again and stayed home from school that day. By noon thought she was wanting to go back. The next day my husband took her to the walk in clinic because something just wasn't feeling right, why would a 10 year old have migraines? She had other symptoms too in relation to her diagnosis but we just pushed that off due to her age.

My husband explained to the doctor what had been going on when he performed a few coordination tests. He found her left side seemed weak and she had a nystagmus with a left lateral graze. He wanted a CT done right away, sadly the earliest appointment we could get was a week away.


When they got home from the doctor I of course still didn't feel right. Of course like anyone I punched her symptoms in to google... I really should not of done that. For the next week I was trying to convince myself that Dr. Google would get it wrong.

On January 30th 2013 she went for her inital CT scan. They said that they may need to two scans, the second with and IV contrast. When the first one was done and they said they needed to do the second I knew something was wrong. I knew my baby girl would be going through the most terrifying time of her life.


After the second scan was complete they gave her a teddy. Here at the hospital usually a small teddy is giving to all kids that are in the ER at some point (I swear we have a collection between all 4 kids). This teddy that they gave her was different, it was huge! almost as big as she was. This confirmed my gut feeling. We were asked to go to the waiting room and wait 15 minutes like you would after immunizations to make sure she didn't have a reaction to the contrast. When in truth it was because they needed to keep us while they frantically called our doctor to let him know the results.


Just as our 15 minutes were up and we were about the leave the hospital a nurse stopped us and asked us to to go the ER and wait my our doctor to arrive. That 1.5 hours was complete hell. I knew something was wrong, trying to keep the tears from flowing was nearly impossible but I managed to keep it in.

As soon as he arrived the look on his face alone told the story. We were taken far back into and isolation room for more privacy. Kaylene was there drawing almost oblivious that her life would never be the same. He asked if he could speak to me alone I said no. Kaylene was 10 years old and needs to know right from the start what is going on.

Cancer. Mass. Children's Hospital. Those are pretty much the main three words I heard the entire time he spoke. He said we'd be flown to Vancouver as we reside in Northern BC. I instantly snapped out of it and requested to be sent to Edmonton as we had family there and I knew no one in Vancouver.
He said he would see what he could do.


From here to when we arrived in Edmonton was pretty much a blur. All I wanted to do and did was cry. Yet Kaylene didn't. She understood to a point what would happen, but still no tears.


We arrived in Edmonton late that night via medivac where they started some blood testing. The next day they would perform an in-depth MRI to see what we were dealing with. I layed on the cot next to her all night, just starred at her sleeping. She has 3 other siblings who were still at home with my husband, their life changed forever as well.

The next day while waiting for her MRI it happen, she broke down. As she sat on my lap scared beyond belief the tears started. She looked up at me and said "Mom, I'm only scared because you are". I knew right there I needed to pull up my big girl panties and be there for Kaylene. She is so amazing and is my strength. I needed to be hers.

A few hours after the MRI we found out the results. We were dealing with one of two tumors. Tumor "A" as they called it was bad, malignant but responded well to treatment so the surgical approach wouldn't have to be as fierce. The ping pong ball sized tumor sat right on the base of her brain stem, right on the 4th ventricle. If this was a tumor "A" they could leave a little cushion on the ventricle and not risk damaging the crucial nerves.
The other possible tumor known as tumor "B" (they wouldn't give names because they knew I'd google lol) was bad, malignant and did not respond to treatment so they would need to be more aggressive in their surgical approach. This also meant possibly damaging the nerves on the 4th ventricle.

This is also when we found out she would qualify for MAW. My baby was going to die, this was all I could think about. I couldn't control my tears anymore, and now I needed to tell Kaylene about her possible fate. Thankfully the neurologist ended up speaking to her because I was in no state to do so. Again, no tears from her--she truly is my superstar.

Also at this meeting we found out her surgery wouldn't be until Feb 5/13 (it was Jan 31) and she could have day passes to do what she pleased until then. They were so fascinated with her because children with tumors like these usually come to them in a coma like state. For them to see her in such "good" health was amazing. You'd never know by looking at her.

We did lots of fun things, we went to Galaxyland, Telus Science Centre, Figure skating at West Ed Mall, etc. All the moments were truly bittersweet.












The morning of Feb 5th came. They washed her hair with special disinfecting shampoo and tried to start her IV. She stopped them right in their tracks and said "HEY! they said they'd put that in once I was asleep" haha, scared the poor nurse away.

The porter came to take her down to the OR, her father and I followed. Tears streaming down my face. They parked her right outside the doors of the OR until they were ready for her, during this time she was joking with the nurses. What a kid!

Only one parent could go in with her while she was being put to sleep. As I walked in I was blown away by the OR. They said it was amazing but that was an understatement. It was a intra-operative MRI suite. Massive steel doors hid the amazing MRI that would come out on a track and take as many pictures as the neurologist would need to make sure the tumor was completely removed.

Then the wait began. They had explained before they would open her up and take a biopsy of the tumor so they knew which surgical route to take that would be about 4 hours into the operation. 4 hours came and went and we didn't hear anything. So many thoughts and nerves. I was a complete wreak.

At the 7 hour mark I couldn't take it anymore, I NEEDED information. My husband went to find out, "she'd be out in a hour" that is all we knew.

We went down to the PICU waiting area. I swear that last hour felt longer then the 7 previous to it. Not long after the Nurse Practitioner for the neurology team walked in with a smile on her face. All she said was "benign"

I dropped to my knees in relief, she was given two option. Benign was NOT one of them. She was not out of the woods yet.






She would have what would seem like an easy and fast recovery. She was discharged from the hospital on Feb 14th 2013.

It has been a long road since then. Physio, MRI's, oncology clinics... but my baby girl is okay! She has defied the odds!

She still has a 4mm nodule in her brain that her neurology team is keeping a close eye on. You'd never know now she was ever sick.

We leave for Disney Word March 15-22. We don't have much information other than that. We are supposed to be assigned a wish grantor this week.

If you've made it this far thanks for reading!


Here is all of us


My husband Trent, Johnathon (Kaylenes twin) 11, Kaylene 11, Ashlyn 6.5, Mason 2.

Jennifer
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Old 01-11-2014, 12:47 AM   #2
icecreamforbreakfast
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What a story! I love stories of kids defying the odds - our son was not expected to make it several times through his journey and that changed our perspective on life and helped us to realize we really needed to enjoy every moment together that God had blessed us with!

We travelled from BC to GKTW and Disneyworld, if you have any specific questions feel free to pm me.
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Yes, we had icecream for breakfast ... more then once!!! Joey's Wish Trip Report
http://www.disboards.com/showthread.php?t=2631198
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Old 01-11-2014, 10:20 PM   #3
Redwavess
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Join Date: Nov 2010
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Hi,

Welcome to the Dis boards!!!

Wow what a journey you have all been on!! Prayers and good thoughts for Kaylene and all of you!!!

Hooray for a Make a Wish trip!! You all are in for some amazing magic coming your way!!!

If you have questions I would be happy to share my experience!!!

Happy Planning!!

Madeline
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http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 01-13-2014, 03:37 PM   #4
Lauraatz
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It is nice to read other wish stories. Congratulations on you wish trip! My family is going the end of April.
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Old 01-27-2014, 08:03 AM   #5
Redwavess
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Hey you,

How is trip planning going? Great I hope!!

Here are my top Wish Trip tips!!

Our #1 tip is keep in mind that Give Kids the World is a wonderful place full of great activities!! If we could do one thing differently we would have spent more time at Give Kids the World!! I mean we only got free Ice Cream once... come on that's pathetic!!!

Tip 2 -- Another important tip is if you want to go to all the parks you get free tickets to you will probably have to go to 2 parks in 1 day (unless you get more time in Florida than the standard time).

Tip 3 -- There are lots of really great restaurants but you need reservations for them, so I visited the food thread on the DIS and decided which restaurants we wanted to visit then scheduled reservations.

Tip 4 -- Give Kids the World suggested to us that we have breakfast before we leave and dinner when we get back since meals are free at Give Kids the World. That worked great for us.

Tip 5 -- Make a Plan -- Talk to everyone who is going to see what is on their must do list. Make a rough plan (that is flexible) which includes everyone must do's.

Tip 6 -- Read the Make a Wish Thread and Wish trip reports to use as resources.

Tip 7 -- Universal seems to really roll out the red carpet for many of the families who made Trip Reports (including my family) so save time for these parks if your family is interested in the attractions they have there.

I hope these help!!!

You can also find lots of ideas and suggestions by reading other trip reports if you have time!!

Make A Wish and Give Kids the World really is on top of everything so even if you don't have lots of time to plan or read trip reports they will walk you through everything!!!

Let me know if you have any questions!!

Happy Counting Down,

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 01-29-2014, 06:56 AM   #6
hey_jude
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We'd love to read more about your trip. Have you met with the wish grantors yet?

Judy
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Dec 1972 - offsite visit to Disney World / Dec 1975 - offsite visit to Disney World / Mar 1993 - Dixie Landings / Aug 2008 - All Star Music / Aug-Sept 2009 - All Star Music, Mickey's Not-So-Scary Halloween Party / Aug 2010 - All Star Music, Bay Lake Tower / October 2010 - offsite visit to Disneyland, Mickey's Halloween Party / Aug 2011 - All Star Music / Aug-Sept 2014 - Caribbean Beach, Mickey's Not-So-Scary Halloween Party
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Old 02-02-2014, 12:08 AM   #7
jkread
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Thanks everyone!!

Sadly with only 42 days left to our trip we have not heard anything no wish grantors, no flights... I'm starting to panic. We're a blended family so my ex husband and his wide are paying for their own way and want to fly with us... But it seems that won't be possible anymore and had to book their flights before the prices completely sky-rocketed. I really hope we hear something soon... Thankfully the kids don't think we're going until August so I guess the info will be a huge surprise when it does come!!
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Old 02-05-2014, 10:59 AM   #8
hey_jude
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I hope you get to meet with your wish grantors soon!
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Dec 1972 - offsite visit to Disney World / Dec 1975 - offsite visit to Disney World / Mar 1993 - Dixie Landings / Aug 2008 - All Star Music / Aug-Sept 2009 - All Star Music, Mickey's Not-So-Scary Halloween Party / Aug 2010 - All Star Music, Bay Lake Tower / October 2010 - offsite visit to Disneyland, Mickey's Halloween Party / Aug 2011 - All Star Music / Aug-Sept 2014 - Caribbean Beach, Mickey's Not-So-Scary Halloween Party
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Old 02-07-2014, 08:03 AM   #9
Redwavess
Mallory's Magical Wish
 
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Quote:
Originally Posted by jkread View Post
Thanks everyone!!

Sadly with only 42 days left to our trip we have not heard anything no wish grantors, no flights... I'm starting to panic. We're a blended family so my ex husband and his wide are paying for their own way and want to fly with us... But it seems that won't be possible anymore and had to book their flights before the prices completely sky-rocketed. I really hope we hear something soon... Thankfully the kids don't think we're going until August so I guess the info will be a huge surprise when it does come!!
I hope you get some news soon!!! Have you tried calling? I'm guessing you did. I wonder what the wait if for? Keep us posted!!

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 02-09-2014, 11:50 PM   #10
jkread
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We have our flights! They were unable to book
Because they were waiting on their allocation from West Jet but we're set to go now! Only thing is they misspelt my sons name wrong on his ticket! I sure hope they can change it or customs may be not fun!!
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Old 02-20-2014, 07:46 PM   #11
Redwavess
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Hooray!!!

Glad to hear that you got the plane info!!!

Hopefully they will be able to fix your son's ticket.

How are your plans coming along?

You must be so excited now!!!

Disney here you come!!!

Madeline
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Me Madeline Wife, Mom, & 1st Grade Teacher Extraordinare Husband Jason Michael 15 Mallory 5

http://www.disboards.com/showthread.php?t=2602026 Mallory Makes a Magical Wish! -- UPDATE -- I wish for... Rudolph!? pg. 4 Post #46

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Old 03-12-2014, 10:51 PM   #12
greenjellybean
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Quote:
Originally Posted by jkread
Hello everyone!

I am very glad to have found this amazing community!

A little background on Kaylene (wish child). In late 2012 Kaylene started to have head aches. There was nothing more out of the ordinary, she'd say she had a headache and we'd respond by giving her tylenol and on her way she went. Every couple of weeks she'd say "Mom, I threw up this morning but I'm not sick". I thought that was odd but she said she was good to go to school so again, off she went.

One morning about 530am I received a text form my husband (I work nights). He said Kaylene was crying because of the pain of her head ache and puking from the pain. I got home from work at 8am and gave her some tylenol. She seemed okay again and stayed home from school that day. By noon thought she was wanting to go back. The next day my husband took her to the walk in clinic because something just wasn't feeling right, why would a 10 year old have migraines? She had other symptoms too in relation to her diagnosis but we just pushed that off due to her age.

My husband explained to the doctor what had been going on when he performed a few coordination tests. He found her left side seemed weak and she had a nystagmus with a left lateral graze. He wanted a CT done right away, sadly the earliest appointment we could get was a week away.



When they got home from the doctor I of course still didn't feel right. Of course like anyone I punched her symptoms in to google... I really should not of done that. For the next week I was trying to convince myself that Dr. Google would get it wrong.

On January 30th 2013 she went for her inital CT scan. They said that they may need to two scans, the second with and IV contrast. When the first one was done and they said they needed to do the second I knew something was wrong. I knew my baby girl would be going through the most terrifying time of her life.



After the second scan was complete they gave her a teddy. Here at the hospital usually a small teddy is giving to all kids that are in the ER at some point (I swear we have a collection between all 4 kids). This teddy that they gave her was different, it was huge! almost as big as she was. This confirmed my gut feeling. We were asked to go to the waiting room and wait 15 minutes like you would after immunizations to make sure she didn't have a reaction to the contrast. When in truth it was because they needed to keep us while they frantically called our doctor to let him know the results.



Just as our 15 minutes were up and we were about the leave the hospital a nurse stopped us and asked us to to go the ER and wait my our doctor to arrive. That 1.5 hours was complete hell. I knew something was wrong, trying to keep the tears from flowing was nearly impossible but I managed to keep it in.

As soon as he arrived the look on his face alone told the story. We were taken far back into and isolation room for more privacy. Kaylene was there drawing almost oblivious that her life would never be the same. He asked if he could speak to me alone I said no. Kaylene was 10 years old and needs to know right from the start what is going on.

Cancer. Mass. Children's Hospital. Those are pretty much the main three words I heard the entire time he spoke. He said we'd be flown to Vancouver as we reside in Northern BC. I instantly snapped out of it and requested to be sent to Edmonton as we had family there and I knew no one in Vancouver.
He said he would see what he could do.



From here to when we arrived in Edmonton was pretty much a blur. All I wanted to do and did was cry. Yet Kaylene didn't. She understood to a point what would happen, but still no tears.



We arrived in Edmonton late that night via medivac where they started some blood testing. The next day they would perform an in-depth MRI to see what we were dealing with. I layed on the cot next to her all night, just starred at her sleeping. She has 3 other siblings who were still at home with my husband, their life changed forever as well.

The next day while waiting for her MRI it happen, she broke down. As she sat on my lap scared beyond belief the tears started. She looked up at me and said "Mom, I'm only scared because you are". I knew right there I needed to pull up my big girl panties and be there for Kaylene. She is so amazing and is my strength. I needed to be hers.

A few hours after the MRI we found out the results. We were dealing with one of two tumors. Tumor "A" as they called it was bad, malignant but responded well to treatment so the surgical approach wouldn't have to be as fierce. The ping pong ball sized tumor sat right on the base of her brain stem, right on the 4th ventricle. If this was a tumor "A" they could leave a little cushion on the ventricle and not risk damaging the crucial nerves.
The other possible tumor known as tumor "B" (they wouldn't give names because they knew I'd google lol) was bad, malignant and did not respond to treatment so they would need to be more aggressive in their surgical approach. This also meant possibly damaging the nerves on the 4th ventricle.

This is also when we found out she would qualify for MAW. My baby was going to die, this was all I could think about. I couldn't control my tears anymore, and now I needed to tell Kaylene about her possible fate. Thankfully the neurologist ended up speaking to her because I was in no state to do so. Again, no tears from her--she truly is my superstar.

Also at this meeting we found out her surgery wouldn't be until Feb 5/13 (it was Jan 31) and she could have day passes to do what she pleased until then. They were so fascinated with her because children with tumors like these usually come to them in a coma like state. For them to see her in such "good" health was amazing. You'd never know by looking at her.

We did lots of fun things, we went to Galaxyland, Telus Science Centre, Figure skating at West Ed Mall, etc. All the moments were truly bittersweet.





The morning of Feb 5th came. They washed her hair with special disinfecting shampoo and tried to start her IV. She stopped them right in their tracks and said "HEY! they said they'd put that in once I was asleep" haha, scared the poor nurse away.

The porter came to take her down to the OR, her father and I followed. Tears streaming down my face. They parked her right outside the doors of the OR until they were ready for her, during this time she was joking with the nurses. What a kid!

Only one parent could go in with her while she was being put to sleep. As I walked in I was blown away by the OR. They said it was amazing but that was an understatement. It was a intra-operative MRI suite. Massive steel doors hid the amazing MRI that would come out on a track and take as many pictures as the neurologist would need to make sure the tumor was completely removed.

Then the wait began. They had explained before they would open her up and take a biopsy of the tumor so they knew which surgical route to take that would be about 4 hours into the operation. 4 hours came and went and we didn't hear anything. So many thoughts and nerves. I was a complete wreak.

At the 7 hour mark I couldn't take it anymore, I NEEDED information. My husband went to find out, "she'd be out in a hour" that is all we knew.

We went down to the PICU waiting area. I swear that last hour felt longer then the 7 previous to it. Not long after the Nurse Practitioner for the neurology team walked in with a smile on her face. All she said was "benign"

I dropped to my knees in relief, she was given two option. Benign was NOT one of them. She was not out of the woods yet.





She would have what would seem like an easy and fast recovery. She was discharged from the hospital on Feb 14th 2013.

It has been a long road since then. Physio, MRI's, oncology clinics... but my baby girl is okay! She has defied the odds!

She still has a 4mm nodule in her brain that her neurology team is keeping a close eye on. You'd never know now she was ever sick.

We leave for Disney Word March 15-22. We don't have much information other than that. We are supposed to be assigned a wish grantor this week.

If you've made it this far thanks for reading!

Here is all of us

My husband Trent, Johnathon (Kaylenes twin) 11, Kaylene 11, Ashlyn 6.5, Mason 2.

Jennifer

Wow! How amazing! I'm so very glad to hear your sweet girl is doing well! Benign is a beautiful word!

I can't wait to hear of your wonderful trip!
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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Old 03-13-2014, 07:24 AM   #13
starearedkid
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Wow! How wonderful. Benign is a magical world! We are meeting with our wish grantors for the first time this Tuesday! In January, Reese was diagnosed with leukemia. I am so excited to meet them.
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Old 03-29-2014, 04:41 PM   #14
greenjellybean
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Posts: 127

Just checking in. Hope you've heard some good news regarding your upcoming trip. Love this picture of Kaylene in the shades. You have a beautiful family and I'm sending pixie dust your way!
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WE HAVE A COUNTDOWN! The girls are going to be SOOOO excited!!!!

DH (Scott) Me (Jenni) DD (Savannah age 11) Wish kid (Sophie age 8) or Depending on her mood.

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