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Old 03-08-2011, 08:03 PM   #1
Tonyababyrn
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Smile "Please keep arms inside the CT scan at all times??" Trace's MAW/GKTW PTR-dates TBA

Hi all!! Welcome to Trace's MAW/GKTW pre-trip report. We met with the MAW granters in January to officially make the wish. Trace loves animals/zoos so he wished to stay at the Animal Kingdom Lodge at Disney so he could watch the animals, but MAW said that would be a separate/shorter wish to stay on site. So, we decided to stay at GKTW and MAW is trying to arrange for Trace to be able to do the Behind the Scenes/Safari tour even though he is only 12 and it has an age limit of 16. Hope they come through with that.

A little background on us and Trace:

We are a family from a very small town in central Louisiana. Hubby and I have been married for almost 25 yrs (next week ) and have 3 children--Kathryn 22, Kelsi 17 and our wish child Trace who is 12.

Our family (except Katie who was at college)--taken at a Louisiana Ice Gators Hockey Game where Trace was asked to visit the locker room and meet the players. In pic is Mom, Dad, Trace, massively cute blue-eyed hockey player and Kelsi.


Katie,Kelsi and Trace-at Katie's college graduation last year--2 months before Trace's diagnosis


Trace and the afore-mentioned massively cute blue-eyed hockey player


Our journey started last spring/summer when I noticed what I thought to be a swollen lymph node under Trace's right ear. I am a nurse, so, with no other symptoms at the time, other than a loose molar, I let it go. I knew that lymph nodes can become enlarged with any kind of inflammation on the corresponding side. When it didn't go away after the tooth came out, I brought him to the pediatrician who immediately ordered lab work and an ultrasound.

And the panic set in . I had worked with his pediatrician for years at the hospital and she knew that it was time to get it checked. She later told me that for swollen lymph nodes she usually does some antibiotics and monitor, but that since I had been watching it for a few months, it was then time to get it checked out. So we get the US and labs and wait for reports. She called the next day with a surgeon referral to have it removed. Report said it looked like a cyst intertangled with the lymph nodes. This was on a Thursday and we saw the surgeon on Monday.

Surgeon diagnosed a Brachial Cleft Cyst--a congenital disorder where some embryonic tissue left over from the cleft in the neck in utero didn't completely dissolve away and can reoccur later in adolescence. Being a nurse, I did my research and read that BCC usually is found down on the side of the neck and not up under the jawbone under the ear lobe...where the lump was. But, he was the surgeon, and we scheduled surgery for the end of July...about 2 wks later.

Surgery day was...stressful. Sisters and grandparents all there. It took about 2 hrs and the first thing the surgeon said was.... "well, that's not what we thought it was.". But, he couldn't/wouldn't tell us what he thought...I went in to mommy mode and remember only hearing the word necrotic. He said he would call Tuesday with pathology report.

LONG LONG LONG weekend..... Tuesday came and went with no call. LONG LONG LONG night. Wednesday at noon, we start calling surgeon's office. Finally about 2pm, he calls with report.

He starts with "I was waiting for confirmation from Johns Hopkins and the Mayo Clinic, and it looks like CYSTIC MUCOEPIDERMOID CARCINOMA of the RIGHT PAROTID GLAND.

WAIT!!! WHAT???? Carcinoma??? That's cancer!!! My baby boy has cancer??? Surgeon said it was low grade and that we would discuss it more the next day at his post-op checkup.

We told his sisters, then Trace and then went and told his grandparents. Long evening. I stayed up allll night doing research and reading about prognosis, subsequent surgery, radiation, chemo, etc.

Post-op appointment was uneventful, took off steri-strips and discussed next surgery in which he wanted to remove the entire parotid gland--which is the large salivary gland that sits in front of your ears and hurts when you eat something very sour. I had read that the facial nerve travels through the middle of this gland and it is a very specialized, delicate surgery to which you need a surgeon who does the procedure frequently.

We were referred to MD Anderson Cancer Center--Head and Neck Division. His preliminary ultrasound and CT scan there indicated a small remainder of the tumor left and he had his second surgery on October 15th with clean pathology of the gland and 19 lymph nodes. YAY!!

Here he is in recovery:


He is recovering well from his surgery and has a huge scar. He calls it his Harry Potter scar because it is shaped like a lightening strike...from the top of his ear, down to under is ear lobe, along his jawbone and then straight down his neck.




He just had his 1st 3month scans at the end of Feb--which were clear. Next appointment is end of May.

Sooooo...back to Trace and MAW! He is a very smart, although shy and quiet little boy. He also has some sensory processing problems--too much sound and he freaks out. We are a homeschooling family and he has no interest in sports. He prefers to play by himself, so not a lot of friends. He loves his computer and animals. Loves Star Wars, Indiana Jones and LEGOs. My husband's 5 brothers all went in together and got Trace the LEGO Death Star and gave him a party to celebrate his "cancer free" status in November.

He was so happy!!! It was awesome.



Our MAW granter emailed yesterday and said she needed the dates for sure, that she was working on his wish and that we would get the final confirmation on dates soon. We chose to drive, so no airline reservations. Our oldest will be flying over to join in mid-week and we are staying a few extra days.

Looking forward to this trip! We have a LOT to celebrate--Trace's "cancer-free" status, Katie and Kelsi's graduations from college and high school respectively, and my husband and I's 25th wedding anniversary!!

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Old 03-08-2011, 08:15 PM   #2
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Congratulations on your WISH coming true! Your family is gorgeous!! I will be following along! I am a nurse and a homeschooling Mom as well.
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Old 03-08-2011, 08:37 PM   #3
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So Glad he is getting his wish.
You are going to LOVE GKTW. Since he likes animals I bet he will like feeding the dolphins at sea world too.
WOW a LEGO Death Star I am not showing this thread to my 13yr old son
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Old 03-08-2011, 08:59 PM   #4
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So Glad he is getting his wish.
You are going to LOVE GKTW. Since he likes animals I bet he will like feeding the dolphins at sea world too.
WOW a LEGO Death Star I am not showing this thread to my 13yr old son
I hope he will like GKTW--I've heard wonderful things about it. We just thought since he was older that he might not. He will love feeding the dolphins. The Death Star is pretty awesome, it took over my living room for a few months. There's only about a kabillion pieces to that thing and a VERY large spiral bound instruction book. He did get it put together, then it tipped and came apart...so he took a break from it...a forced break before he lost his temper.
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Old 03-08-2011, 09:01 PM   #5
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YAY!!! That is so awesome!! What a time you have all been through - hugs to you all!! I know about those scarey scan check ups!! My nephew has been cancer free for a year now (had medullablastoma last yeara) and took his MAW trip exactly a year ago! ITs an AWESOME experience!! Im also an OT, so know alot about sensory processing issues!!!!

When will you know a date?????
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Old 03-08-2011, 09:10 PM   #6
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YAY!!! That is so awesome!! What a time you have all been through - hugs to you all!! I know about those scarey scan check ups!! My nephew has been cancer free for a year now (had medullablastoma last yeara) and took his MAW trip exactly a year ago! ITs an AWESOME experience!! Im also an OT, so know alot about sensory processing issues!!!!

When will you know a date?????

Hopefully soon!! I confirmed our dates yesterday. We had to get a note from the doctor for him not to have to fly. He didn't want to fly and with his anxiety and worry, which is 10 fold now with the cancer, I wasn't going to force him if he didn't want to. That's not a way to start a MAW trip. So, we will drive from Louisiana. Just had to get a note from doctor for MAW to allow it. They received the note and she said she is making reservations now. Hubby and I are also wish granters, so we talk more with the coordinator doing the reservations and stuff than our actual wish granters.

Congrats on your nephew's cancer free status!!
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Old 03-08-2011, 10:18 PM   #7
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Welcome! You have a beautiful family--and will have an awesome trip, especially with regards to all those triumphs that need celebrating! Hope you don't mind if I tag along (I just subscribed to your thread) for the ride.

Congratulations on your son's 'cancer-free' status! We're waiting for my daughter's port to come out so we can celebrate her own recovery from cancer (Wilms tumour). Can't wait!
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Old 03-09-2011, 03:08 AM   #8
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Welcome thank you for sharing your story.
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Old 03-09-2011, 07:26 AM   #9
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Sharing some Disney Smiles!

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Old 03-09-2011, 09:35 AM   #10
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WELCOME
Thanks for sharing Traces story! Also, great photos! It's great to hear those words...cancer free! Yay! I look forward to following your PTR!
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Old 03-09-2011, 11:39 AM   #11
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Welcome! Can't wait to read about your planning when you get dates. You must put LEGO store in Downtown Disney and Star Tours-The Adventures Continue opens May 20 2011 in now in 3D on your list for your ds. Little info when picking dates if your ds loves Star Wars:
Fridays through Sundays
May 20 to 22, 2011
May 27 to 29, 2011
June 3 to 5, 2011
June 10 to 12, 2011

Star Wars Weekends is an annual special event at Disney's Hollywood Studios theme park that celebrates the legendary Star Wars Saga and the animated television series, The Clone Wars. Join Jedi Knights, Sith Lords and Star Wars celebrities for special shows, presentations and memorabilia.
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January's MAW/GKTW PTR and first time to WDW

TR:
http://www.disboards.com/showthread....1#post41110444

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Old 03-09-2011, 12:50 PM   #12
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Originally Posted by mommy2girlswv View Post
Welcome! Can't wait to read about your planning when you get dates. You must put LEGO store in Downtown Disney and Star Tours-The Adventures Continue opens May 20 2011 in now in 3D on your list for your ds. Little info when picking dates if your ds loves Star Wars:
Fridays through Sundays
May 20 to 22, 2011
May 27 to 29, 2011
June 3 to 5, 2011
June 10 to 12, 2011

Star Wars Weekends is an annual special event at Disney's Hollywood Studios theme park that celebrates the legendary Star Wars Saga and the animated television series, The Clone Wars. Join Jedi Knights, Sith Lords and Star Wars celebrities for special shows, presentations and memorabilia.
We are really looking forward to Star Wars Weekend. We "should" be there for the last weekend.
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Old 03-09-2011, 06:46 PM   #13
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Originally Posted by Tonyababyrn View Post
Hopefully soon!! I confirmed our dates yesterday. We had to get a note from the doctor for him not to have to fly. He didn't want to fly and with his anxiety and worry, which is 10 fold now with the cancer, I wasn't going to force him if he didn't want to. That's not a way to start a MAW trip. So, we will drive from Louisiana. Just had to get a note from doctor for MAW to allow it. They received the note and she said she is making reservations now. Hubby and I are also wish granters, so we talk more with the coordinator doing the reservations and stuff than our actual wish granters.

Congrats on your nephew's cancer free status!!
My DH and I are also working on becoming wish granters in the state of DE. I have all my info ready, but DH is being SLOW!!!!! What was the training like?
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Old 03-09-2011, 06:52 PM   #14
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My DH and I are also working on becoming wish granters in the state of DE. I have all my info ready, but DH is being SLOW!!!!! What was the training like?

Training was easy peasy!! Since we are currently a wish family, we had to get permission to be wish granters. Once that was cleared, we signed up for the training session and we were invited to bring the whole family as guests of honor. Trace was presented with a "magical blue wand" as a very special wish kid. It was a powerpoint presentation at a restaurant, went over all the necessary paperwork and then q/a session. We have our 1st meeting with a family this week. Soooo excited to be on both ends of this wonderful organization.
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Old 03-09-2011, 06:59 PM   #15
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Training was easy peasy!! Since we are currently a wish family, we had to get permission to be wish granters. Once that was cleared, we signed up for the training session and we were invited to bring the whole family as guests of honor. Trace was presented with a "magical blue wand" as a very special wish kid. It was a powerpoint presentation at a restaurant, went over all the necessary paperwork and then q/a session. We have our 1st meeting with a family this week. Soooo excited to be on both ends of this wonderful organization.
THat sounds AWESOME!! I wonder if that training is standard across the country!! I want to be on the other side of it now too!!! Are you going to stay at GKTW for sure? ITs AMAZING!!!!
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