Welcome to my trip report for Elliots 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. Weve 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. Shes 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 its 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.
Elliots Story
Early in 2009, just around the time of his first birthday, Elliot started to run low grade fevers often. Theyd only last a couple days and would never go above 101. Id 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 Childrens 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 daughters 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 215s. 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 Wilms, 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 daughters 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 hed 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, Id love to share them but they might be too graphic for some. He said it was the largest hed 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 MRIs, CT Scans, chest X-Rays and ultrasounds every 3 months but he doesnt 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, hed 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, siblings names and ages and to be told that they were sending in the HIPAA forms to the doctors office. Hopefully I will hear back soon! I know its a long process, but I wont stop thinking about it until it happens. Ideally, Id love for his trip to happen around his birthday in March but thats 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 hed miss so much while he is gone. I do not want to go during Spring Break if its 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 shouldnt worry about that just yet, but its my nature
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.
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. Weve 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. Shes 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 its 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.
Elliots Story
Early in 2009, just around the time of his first birthday, Elliot started to run low grade fevers often. Theyd only last a couple days and would never go above 101. Id 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 Childrens 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 daughters 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 215s. 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 Wilms, 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 daughters 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 hed 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, Id love to share them but they might be too graphic for some. He said it was the largest hed 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 MRIs, CT Scans, chest X-Rays and ultrasounds every 3 months but he doesnt 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, hed 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, siblings names and ages and to be told that they were sending in the HIPAA forms to the doctors office. Hopefully I will hear back soon! I know its a long process, but I wont stop thinking about it until it happens. Ideally, Id love for his trip to happen around his birthday in March but thats 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 hed miss so much while he is gone. I do not want to go during Spring Break if its 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 shouldnt worry about that just yet, but its my nature
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.
I hope you get the dates you want!! 
