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Old 12-10-2010, 08:40 AM   #1
jj0plin
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Elliot's Wish Trip... Video of our entire trip posted! (post 492)

Welcome to my trip report for Elliot’s Make-A-Wish Trip!


Trip Report
Day One
Day Two
Walk for Wishes
Day Three Part One
Day Three Part Two
Day Three Part Three
Day Four - Hollywood Studios
Real Life Update
Make A Wish Welcome Back Party
Naples, Florida pictures
Video of whole trip






Pre-Trip Report
Make A Wish Packet Received
A Visit from the Wish Granters
Make A Wish FAQ's and a few of my own
Disney Potatoes
We Have Dates!
A Little Mickey Magic!
HELP! Have I overplanned?
Tenative Itinerary
Big Give from Lisa (mommy2mrb)
Big Give from Neal and Diane L.
Big Give from Michelle (miprender)
Big Give from the Laxton Family
Big Give from Kristi (kjmommie/disneyanytimer)
Big Give from Flora (PurpleEars)
Big Give from Chiara (cogero)
Big Give from Tim (that's nice)
Big Give from Dania (DisneyCP2002)
Big Give from Kendra (effervescent)
Big Give from Ballet Mom
Big Give from AKSunshine
Birthday Party Post

__________________________________________________ _______________

My name is Christy and I am mom to 3 wonderful kids, Trevor, Addison and Elliot, the wish child. I work in technical support on third shift over the weekend (Thursday night through Sunday night) so I can stay home with the kids as much as possible. My husband, Craig, does interior remodeling. We’ve been together almost 12 years, married for 6. We live in Kentucky.
Here is a picture of all of us from last year, it's a little blurry because it came from my phone

Our Kids


Elliot and I this past fall


My oldest son is Trevor and he's 15 years old. He is a freshman in high school, in all advanced classes. He has a great sense of humor and is always making everyone laugh. He loves soccer and this year he played on both JV and Varsity school teams. The rest of his spare time is spent texting, on the internet or the Wii… go figure! LOL


Addison is our middle child and only daughter. She’s 5 and in all day kindergarten this year. She is very outspoken and often makes sure she is the center of attention. Thankfully she is adorable and funny and it’s hard to ignore her


Elliot is our youngest, and is our Wish kid. He will be 3 in March. He is the sweetest, happiest, most easy going, good natured child who just wants to make everyone smile.



Elliot’s Story

Early in 2009, just around the time of his first birthday, Elliot started to run low grade fevers often. They’d only last a couple days and would never go above 101. I’d take him to the doctor and be told he had a virus, or maybe it was teething, etc. This continued for several months but began to increase in frequency. Finally, in July I was tired of going back to the doctor, I think it was a weekly thing by then, and I requested that they do a full panel of blood work to rule out anything else. All of his blood work came back fine. The following week on July 23rd I took him back again and this time the doctor felt his stomach, the same way they always did each week, but this time he felt something different. He said he thought he felt the tip of his liver. I was under the impression he thought he could be ‘backed up’. He sent me to Kosair Children’s Hospital (thankfully only about 20 minutes away) to have x-rays done. It was lunch time by then and once the x-rays were done we were told we could leave. I made it almost home (less than 3 minutes away) and the doctor called me back on my cell phone. He told me I had to go back to the hospital for further testing. I went home and got my mom, who thankfully was in town for my daughter’s birthday. We went back to the hospital, this time with all my kids in tow. He then had a very long and intensive ultrasound done. I was told to wait in that room. His pediatrician called me and told me that he would be admitted to the hospital for further testing, to rule out cancer. I lost it at that time. I called my husband and he left work to join me.

That night we met with the oncologist and were told that they believed he had hepatoblastoma, which is a cancerous tumor on his liver. The next day he had to be sedated and have an MRI and a chest CT done to confirm cancer and to rule out it spreading to his lungs. After scans they said that they believed it was a Wilm's Tumor on his kidney, but it was possibly neuroblastoma. However, instead of it being tennis ball size like they thought, it was actually the size of a football! His blood pressure was out of control and even up into the 215’s. He was moved to the ICU and ended up having to get an A-Line. He fought everyone and everything by this point, which only made the BP worse. They put him on 2 medications to control the BP.

Once the blood pressure was under control they did a biopsy and confirmed that it was stage 2 Wilm’s, which was the better of the two to have and cure but having the biopsy upstaged it to stage 3. While doing the biopsy they put a port in his chest for chemo. It was decided that he would start chemo and have the tumor removed after 6 weeks because of the size and how high it was driving his blood pressure. This was also the day of my daughter’s 4th birthday, which she had to spend without her parents, though she did get to visit us and have cake and presents in ICU. I convinced my mom, my aunt and the rest of our friends and family to take hre to Chuck E Cheese to celebrate without us.

He started to get sicker and weaker, refused to eat, quit walking, pretty much just gave up. Every time I gave him medicine or supplements he’d throw them back up. He was put on IV feeds. He started running a high fever. His blood pressure started going up higher and higher. He ended up on a total of 5 medications to control it. They finally decided that they needed to go ahead and get the tumor out, so it was removed on August 11th. The tumor was completely contained but was actually even bigger than they thought and it weighed 3.3 pounds! The surgeon took pictures for me, I’d love to share them but they might be too graphic for some. He said it was the largest he’d ever seen. We went back to ICU and Elliot was on an epidural for 2 days. After that we moved back to the cancer floor and he was back to his old happy self! He had to meet with physical therapy a few times to help getting him walking again (actually took weeks though). He got his second round of chemotherapy on the 18th and then we were discharged to go home. Two days later he had a fever and we were back again, but had a much shorter stay that time. The next week he had to have 6 radiation treatments. He had to have weekly chemo and clinic visits for a few months and then only every other week, then every 3 weeks. Anytime he had a fever we had to go back to the hospital so he was admitted again several times during the following months. I never once left him or the hospital the entire time he was admitted, any of the times. My husband had to go back to work and to take care of the other kids. It was really hard on my daughter, being away from me for so long. She has some jealousy issues, and seems to always be in competition for attention no matter how much she gets. Thankfully Trevor was old enough to be understanding and patient, though I know he was terrified. Elliot ended up going through 7 months of chemotherapy and was a trooper through it all. Never cried when he had his port accessed, his finger poked, never got too sick or complained, always laughed and played with the nurses… they said he was a model patient and better than most of the teens even!

He last received chemo on January 21st and is doing wonderful. His port was removed 2 weeks later. Today he is walking, talking, and playing just like any other kid his age. He still has to have MRI’s, CT Scans, chest X-Rays and ultrasounds every 3 months but he doesn’t mind too much. He just had his latest scans at the beginning of the month and still looks great. Sometimes I look at him and just cannot believe all he went through and that he still managed to come out of it as happy, trusting and friendly as he is.

Some hospital pictures

the day before biopsy


With Daddy in the PICU


notice the huge stomach, just before surgery


this is how skinny he got... they let me take him outside for some fresh air one day


two days after surgery



one day in OMO, receiving chemo



Last Easter/ Spring Break we took a very budgeted, much needed family vacation to Florida to visit family. While we were there we squeezed in a GAD visit to Magic Kingdom and a day at Sea World. Sadly, since it was Spring Break and Easter it was just too packed to be much fun. We never even got to see Mickey and the gang while there! The highlight of the trip was probably our stay at All Star Movies (mom got the resident discount). Elliot was mesmerized by the Toy Story area where we stayed. While we were in the hospital, he’d watch Toy Story every single day, sometimes more than once. He LOVES Buzz and Woody! I'll come back later with a few pictures from this trip



I was given the Make-A-Wish information at his oncologist office on December 1st and I submitted the request right away. While we were at clinic, our favorite nurse showed us an album from another patient full of GKTW and Disney pictures. Elliot was so excited and all the way home he talked about going to see Mickey and Goofy. Later I asked where he wished he could go and he said “the beach and see Mickey!” I really want him to get to fully enjoy Disney since our trip was so short last year, so hopefully he will stick with that wish! I received a call from Make-A-Wish yesterday to verify my phone numbers, sibling’s names and ages and to be told that they were sending in the HIPAA forms to the doctor’s office. Hopefully I will hear back soon! I know it’s a long process, but I won’t stop thinking about it until it happens. Ideally, I’d love for his trip to happen around his birthday in March but that’s probably too soon. Our Spring Break is April 4-8, maybe that is more realistic? I have no idea how long this takes! I am also unsure about pulling the other kids out of school, mostly just my freshman since he’d miss so much while he is gone. I do not want to go during Spring Break if it’s going to be half as packed as it was last year, but I was hoping it would be better since Easter is not until the end of the month this year… guess I really shouldn’t worry about that just yet, but it’s my nature :D


If you made it this far, thanks for reading! I am going to go back to reading more Wish Trip reports while I anxiously wait to hear back from MAW again.

Last edited by jj0plin; 08-10-2011 at 10:28 AM.
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Old 12-10-2010, 10:17 AM   #2
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No words can express how much I enjoyed reading your pre trip report. It was well done. Merry Christmas.
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Old 12-10-2010, 12:01 PM   #3
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Oh my goodness, what a cutie pie! I don't think it's out of the question to go when you hope to. We got all of our plans arranged quickly for our daughter's wish trip. We had our meeting at the beginning of October and are going during Christmas week.

So glad to hear he is doing so well now, what a trooper!
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Old 12-10-2010, 03:48 PM   #4
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Hi..Glad you started the PTR. Man...You have some cutie kiddos. March is still not out of question. We are going March 13 and staying 4 extra days. I have 2 kids in High school..one of them is the wish child. They will be missing a week of school. They will go on indepentant study for that week. The following week is there Spring break, so they will have that time to make up the work. Usually school go a little bit easier since they know it's a wish trip. At least that is what they did the last time. I hope you hear something soon.
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Old 12-10-2010, 07:25 PM   #5
jj0plin
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thank you! I fixed the picture of the family, added one of me and updated my signature with Disney photo's (one Halloween too)!
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Old 12-10-2010, 07:29 PM   #6
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I am so sorry your son had to go through that. You have such a beautiful family! Hugs to you!
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Old 12-12-2010, 10:11 AM   #7
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I just read your story... (followed from my TR )


Wow another 1 yr old with Willms. Our doctor said it was rare to have someone so young with Willms. They were sure it was another cancer, just like they told you. I noticed that Elliot's incision goes on an angle while my DD's goes from left to right. Maybe because Elliot's tumor was bigger.

I'm glad he is doing well and I know you guys are going to have a blast at GKTW!!!! Make sure you post any questions you have on here or the Wish Trippers thread http://www.disboards.com/showthread.php?t=2356343 I can't remember if I have seen you post on there or not.

BTW... your kids are adorable! Well, except for your oldest- he is handsome. LOL

Tim
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Old 12-12-2010, 06:44 PM   #8
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poor baby.. Look forward to reading your pre-trip report
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Old 12-12-2010, 07:22 PM   #9
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what a little trooper
so glad he is going to get his wish
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Old 12-13-2010, 10:08 AM   #10
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Hi!

I sure hope his wish comes true!!! It would be really awesome for you to be able to go back and really enjoy it all!!!
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Old 12-13-2010, 11:00 AM   #11
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Joining in! What a lovely start to your pretrip! You have a beautiful family. Your littlest one is too adorable, what a sweet little face he has! Poor thing, he's obviously been through a tremendous ordeal. I'm always amazed by the strength and resiliency of the children who have to go through sickness like that. It's so wonderful that you will all be able to go to Disney through MAW! Then you'll be able to spend more time there this trip, soaking it all in. I'm sure you'll be on pins and needles till you learn all the details! How exciting!
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Old 12-13-2010, 07:53 PM   #12
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Joining in on your PTR you have such a cute family. I am so glad Elliot is getting his wish! I totally related to when you said "Sometimes I look at him and just cannot believe all he went through and that he still managed to come out of it as happy, trusting and friendly as he is." I feel the same way about my daughter...even today when we go in for follow up of any kind she smiles and chats as they poke her arm to get blood. Kids are amazing. I can't wait to hear more about your trip plans.
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Old 12-13-2010, 08:55 PM   #13
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Love reading your story. I am hoping that everything falls into place & you get to go soon. We are also going March 13 on our daughter's wish trip. I can't wait to follow along on your PTR!!!!
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Old 12-13-2010, 09:44 PM   #14
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WOW ur story is amazing.. what a strong little guy Elliot is.. he and I can compare scars, I have one very similar to him.. Isn't it strange how in one day so much can change?
Last July, I thought that I had hip pain that was probably arthritus.. After 12 hours in the ER a physcians assistant decided just diagnosing me with possible arthritus wasnt sufficient.. because of him I am alive and will get to see my son grow up.. I ended up having a tumor on gallbladder.. my gallbladder was taken out.. I ended up bleeding internally and required another surgery emergency surgery.. 4 days after my second surgery I was told it was gallbladder cancer.. so rare in a woman and even more rare in a woman my age.. I had a 3rd surgery a week later.. very serious and painful surgery to make sure the cancer hadnt spread.. I was very lucky it hadnt.. and because of that reason we are heading back to WDW in May..
I am so happy for your family.. not because of what you had to go through but to be able to bring little Elliot to the world.. it takes all your worries away and makes the real world seem not so bad.. What doesn't kill you makes you stronger.. you have a fighter on your hands.. and you as his parents should be so proud of yourselves.. its amazing how much strength you have when you really need it..
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Old 12-14-2010, 05:18 AM   #15
jj0plin
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Thank you all!

Quote:
Originally Posted by loganpaulsmom View Post
WOW ur story is amazing.. what a strong little guy Elliot is.. he and I can compare scars, I have one very similar to him.. Isn't it strange how in one day so much can change?
Last July, I thought that I had hip pain that was probably arthritus.. After 12 hours in the ER a physcians assistant decided just diagnosing me with possible arthritus wasnt sufficient.. because of him I am alive and will get to see my son grow up.. I ended up having a tumor on gallbladder.. my gallbladder was taken out.. I ended up bleeding internally and required another surgery emergency surgery.. 4 days after my second surgery I was told it was gallbladder cancer.. so rare in a woman and even more rare in a woman my age.. I had a 3rd surgery a week later.. very serious and painful surgery to make sure the cancer hadnt spread.. I was very lucky it hadnt.. and because of that reason we are heading back to WDW in May..
I am so happy for your family.. not because of what you had to go through but to be able to bring little Elliot to the world.. it takes all your worries away and makes the real world seem not so bad.. What doesn't kill you makes you stronger.. you have a fighter on your hands.. and you as his parents should be so proud of yourselves.. its amazing how much strength you have when you really need it..
Thank you! I liked hearing your story and it's great to know that you are doing well! Hope you have an incredible time at Disney!
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