AmberGreenawalt
Mouseketeer
- Joined
- Jun 18, 2008
- Messages
- 318
WE'RE DISNEY BOUND!
Hi All! We are very excited to be sharing our son’s Make A Wish Disney Trip with you! First let me introduce our cast of characters: I'm Amber (25) and my fantastic husband is Brian (35). Brian and I have been married for nearly six years. We were married at the Vatican in Italy-that was my first big adventure in mirco-planning. Brian is an easy going Aero Space Project Manager. In my former (pre-mom) life I was a Corporate Event Planner (surprised?). These days I stay busy as the manager of our crazy-wonderful household and side-line as a professional photographer (check out www.angphotos.com).
We have two wonderful children, Sebastian (3 ½ years) our wish boy, and Siennah (22 months). Sebastian and Siennah are nineteen months apart. They are both ultra outgoing and energetic.
Sebastian is sweet and loving but every bit the feisty imp his red hair suggests.
Siennah is a super funny charmer. She gets into all sorts of two year old mischief but you can’t help but adore her.
We also have another little bundle of joy, Savannah, due to arrive the middle of August 2008 (4 ½ weeks to go!). Judging from all the kicking she does, I think the Lord must be sending us another "spirited" one.
It’s been one wild ride for us this past year! We’ve joked that Episodes of “House” don’t have anything on us
The following is the Reader’s Digest version of Sebastian’s journey:
The week before Christmas, December 2007 we noticed that Sebastian had a nickel sized lump on the back of his skull. He had had no injury to the area and the area showed no signs of bruising. We took him to see his Pediatrician late December, 2007. She said that she believed that the area represented Cutis Aplasia (diagnosis #1) a dermis type of problem, but that we should take him to see a Pediatric Plastic Surgeon because she felt a “bony defect.”
The process of getting an appointment with the single Pediatric Plastic surgeon in our area was painstaking. We were able to finally be seen by him, late February, 2008. After physically examining Sebastian he said that he believed Sebastian had a “cranial defect” (diagnosis #2). He recommended that Sebastian have an MRI because he felt something “soft” coming through the “hole” and that he believed that it could possibly be the sagittal sinus vein that runs between the two hemispheres of the brain.
On March 4th, 2008 Sebastian had an MRI with contrast under general anesthesia. I called the following morning for results and got none. I called the next two subsequent mornings for results and again got none. We were told by the Pediatric Plastic Surgeon’s receptionist that he was tied up in surgery. Finally on the evening of Friday, March 7th, 2008 the doctor called to say that the MRI revealed a “solid soft tissue mass,” and that I should call his Secretary the following Monday to schedule a surgery to remove the mass.
My husband and myself began to seriously question if we were still working with the “right” kind of doctor to be operating on our son’s skull. On the morning of Saturday, March 8th I called the branch of our Pediatrician’s office that offered Saturday hours to ask if we were working with the right kind of doctor before moving forward with scheduling a surgery on Monday.
Meanwhile, the size of the “lump” on the outside of Sebastian’s head had grown from nickel sized to half dollar sized.
I was able to speak with one of our Pediatricians. She was appalled at the length of time it took to get us results and said that she would review the MRI and call us back. Within a half hour she called back and told us that an Oncologist would meet us at Hemby Children’s Hospital in an hour.
Once at the hospital Sebastian had a gamut of blood tests done. He also had a CT scan with contrast. Following the Oncologists review of the blood work, MRI and CT scan he told us that evening that he was 99% sure that Sebastian had a form of cancer called Langerhans’ Cells Histiocytosis (diagnosis #3). Specifically the Eosiniphilic Granuloma kind. He said that a biopsy of the tumor would be done so that we could be 100% sure and recommended that a Port-a-Catheter be placed during the same surgery so that Sebastian could begin Chemotherapy treatments the following week. That same evening (March 8th) we met with the Nuero Surgeon who would be performing the biopsy.
Sebastian had a full skeletal survey on Wednesday, March 12th. The survey revealed a tumor in the center of his upper right humerus about two thirds of the way up from his elbow.
On Friday, March 14th Sebastian underwent surgery to have the Port-a-Cather placed by a Pediatric Surgeon and was then flipped over to have the biopsy done by the Nuero Surgeon. The initial biopsy results done during the surgery came back that the tumor was NOT Langerhan’s Cells Histiocytosis after all. The Nuero Surgeon went ahead and removed the tumor which was larger than a “golf ball.”
We met with another Oncologist from the practice on Monday, March 18th. She explained to us that the Pathologist at Presbyterian Main Hospital thought that the tumor might be a Juvenile Xanthogranuloma (diagnosis #4) and that the specimen had been sent to the Pathologist at Carolinas Medical Center Hospital nearby and they concurred. They were not willing however to “close out” the pathology before having the case reviewed by THEE “World Expert” in bone Tumors, a guy named Dr. Krishnan Unni.
We were told that this expert was retired and out of the country for two weeks but that he agreed to review or case when he returned. In the meantime Sebastian would have a Bone Scan which our oncologists predicted would be negative. Sebastian had the Bone Scan done on Tuesday, the next day. The Oncologist called the day after that with the results of the Bone Scan. The scan confirmed the presence of a tumor in his right arm.
The Bone Tumor Expert determined that the tumor in Sebastian’s head was what is called a Giant Cell Tumor (diagnosis #5). The Expert said that he thought the tumor in Sebastian’s arm was completely un-related. Every other doctor we spoke with concurred. Giant Cell tumors are particularly aggressive and have a 60% recurrence rate. The Nuero Surgeon who removed the tumor didn’t perform the surgery the “right way” for this type of tumor because no-one guessed that this is the type of tumor that it would be.
The reason why no one would have determined it to be a Giant Cell Tumor is because these tumors don’t occur in people with open growth plates (meaning males under the age of 17---Sebastian is 3!). They also do NOT occur in flat bones like the skull. They are usually found in the joint area of the long bones of 20-40 year old females. Sebastian’s case is an exceedingly rare phenomenon.
Six weeks later we took Sebastian for another MRI to see how his head was doing and to get images of the tumor in his arm. He also had a fine needle biopsy done of his right arm at this time. To our dismay the MRI showed that the tumor that had been removed from his head had already started to grow back. The results from the biopsy of the tumor in his arm were inconclusive.
On May 29th he had another surgery to remove the recurrent tumor and to cut away a "radical" margin from his skull, leaving quite a large hole in his head. The Nuero Surgeon who worked on him filled the space with a synthetic calcium paste. He did an amazing job! Aside from a 5 inch incision down the back of his head we think his recovery has been incredible. During the same surgery Sebastian also had an open biopsy done of the tumor in his right arm by a Paediatric Orthopedic Surgeon.
The samples were all sent again to the World Bone Tumor Expert doctor to review. The Pathology report confirmed that the recurrent tumor in his head was another Giant Cell Tumor but to everyone's surprise the tumor in his arm was also a Giant Cell Tumor--making his already exceedingly rare case that much more extraordinary.Giant Cell tumors are usually isolated and do not occur simultaneously throughout the body. His sixth diagnosis is now Multicentric Giant Cell Tumors. So far as any doctor can tell us they can't find another case like it.....EVER!
The treatment for him is repeated surgery. Which means that we wait to see if the tumors grow back or more develop and then cut them out with “radical” margins. The chemotherapy and interferon “modalities” that this type of tumor responds to are highly toxic. Sebastian will have another round of testing done in the next dew weeks. He'll have a CT scan and a bone scan to see if any new tumors are developing. We hope and pray that his tests are clear.
Sebastian has been such a strong and brave boy throughout this whole ordeal. We could not be more proud of him. He is really resilient –heck most of the time I can’t keep up with him and his sister.
Now on to the positive stuff:
Last time Sebastian was staying in the hospital one of the Oncologists told us that they refer all of their “tumor” kids to the Make A Wish Foundation. We’d always been under the impression that Make A Wish was for terminally ill children and were surprised to find out that the majority of “wish kids” go on to lead happy and healthy lives (we hope that’s our Sebastian!). Within a week I was speaking with a woman named Liz from Central and Western North Carolina Make A Wish Foundation. She said they work with Sebastian’s Doctors and the Child-Life specialist at the Blume Hematology and Oncology Clinic all the time…how cool! So I gave Liz all of our family information (Sebastian’s age, siblings, interests, favorite characters-- that sort of thing) and she said they would be in touch after reviewing Sebastian’s case with his Doctors to determine Sebastian’s medical eligibility.
We were so surprised to get that call from a woman named Erin Hess. She said she was from the Make A Wish foundation and was going to be one of Sebastian’s “Wish Granters.” OMG! I started balling. I’d put it out of my mind not wanting to set our hopes for Sebastian on something like that. With three surgeries in three months and another still to come it’s been a difficult year for the little guy. We were so excited to see what he would come up with. Whatever he chose we were sure that it would bring him much joy.
On June 17th, 2008 Sebastian met his “Wish Granter’s” Erin and Shonda. Sebastian was so excited that he waited by the door ready to let them in when they arrived. What a joy to see him and Siennah filled with such delight. I was tearing up and they had not even come through the door yet!
Erin and Shonda arrived at 6:15 p.m. hands full of goodies for the kids. They introduced themselves and gave Sebastian a play-doh set, a stuffed dinosaur and a purple inflatable guitar and Siennah a book called “Elmo Loves You.”
The kids were excited to show Erin and Shonda their rooms and playroom. Then we settled into the bonus room to talk. Sebastian and Siennah dug into the play-doh straightaway. Grandma and Pap Pap came over around 6:30 and helped keep the kids occupied while Brian and I filled out all sorts of paper work and publicity releases. It was all so exciting!
Back on the day that we got the phone call from Erin, as we were driving home from grocery shopping, Brian asked Sebastian what he thought he might wish for if he could have “one wish.” After an explanation of exactly what a wish is, Sebastian said, completely unprompted and without hesitation, “I want to go to DISNEY!! I want to see Buzz Lightyear, Mickey Mouse, and Lightning McQueen. That’s my choice!” Big grin.
With his hero Buzz Lightyear in October 2007
I wish I possessed that kind of self assured decisiveness. My friends and I often joke about how it took me over a month to settle on what color Bumbo seat to order (there were only 3 color choices) and four times that long to choose a double stroller.
It was easy for Sebastian to conjure what would bring him the most joy. I think his happiest memories in his 3 and half year life are from our family trip to Orlando in October 2007. It was a magical time for all of us and it made perfect sense that he would want to go back and see his beloved heros, Buzz, Mickey and McQueen and of course enjoy his favorite past time…RIDES!
Knowing what Sebastian was likely to tell his Wish Granters when we met we started “googling” “Make A Wish Disney Trip” to get an idea of what to anticipate. We found loads of information right here on the DIS forums. We read as many “Wish Tripper” stories as we could. Each and every inspiring story made me choke up.
We found that Disney is actually the number one wish of kids who have faced life threatening condition. Disney fulfilled more than 6,000 Disney-related wishes in 2007 (out of 13,007 total wishes in 2007!) sponsored by Make A Wish. Disney has been a part of over 50,000 wishes since the Foundation started 25 years ago.
With Disney being the most common request the “Disney Wish” process seems to have been made into a smooth and streamlined experience yet personalized and unique depending on each child’s specific Disney wish. We learned that most Wish trip kids stay at a resort called Give Kids the World (GKTW). This resort is like a wonderland that exists solely for wish trips. The whole thing was started by a Holocaust survivor named Henri Landwirth. You have to check it out for yourself at http://www.gktw.org/
From what we found Make A Wish takes care of the transportation to and around Orlando and spending money while Give Kids the World provides accommodations in one of their two bedroom spacious villas” and donated theme park tickets. They offer 3 day park hopper tickets for the four Disney parks, 2 days park hopper tickets for Universal Studios and Islands of Adventure and 1 day tickets for Sea World as well as other are attractions like Bush Gardens.
GKTW also provides all meals at the resort for free. They serve breakfast and dinner in a restaurant called “The Gingerbread House” and frozen delights are available all day long at the “Ice Cream Palace.” The Village also has a carousel, mini golf course, Castle of Miracles, arcade, pool, splash area, train and Movie Theater. They host a plethora of activities during your stay such as horseback riding, pirate and princess parties, character meet and greets and a life size game of Candy Land. They even make it Christmas once a week complete with Santa, carriage rides, snow and twinkling lights! Here I go again with the crying as I type this!
When Erin and Shonda started talking to Sebastian he rattled off the full list of Disney characters he wants to meet. Most importantly, Buzz Lightyear, Mickey Mouse and Lightning McQueen. He has also added Emperor Zurg and Mater to the throng.
Sebastian with his "Wish Granters" Erin and Shonda
Erin and Shonda asked Sebastian his favorite color- green, food- pizza, drink- soda (Ha!) T.V. shows –Mickey Mouse Clubhouse and Buzz Lightyear of Star Command (surprised?) Ice-cream- vanilla/chocolate with “eyes” like at Bruster’s, Candy- giant swirl lolli-pops (wonder where he’s had those?), sports teams –Steelers, Carolina and USF (just like Daddy!)
Erin had Sebastian draw his wish on a specially marked piece of paper. With some assistance he drew Cinderella’s castle with Buzz Lightyear standing in front of it. At least that is what it somewhat resembled.
When Erin asked Sebastian what his “second choice” wish was in case Disney World was not possible he couldn’t even grasp the notion. So his second choice wish is actually Disneyland. He’s determined.
Brian and I requested to make the trip in the early part of December. We have a plethora of reasons for wanting wait. The biggest of which is the impending arrival of baby #3, little Savannah. We figure by December Savannah will be sleeping longer stretches at night and nursing a little less often. Being from Florida, we don’t want to go anywhere near the huge Disney crowds in the hot and humid summer months (especially this pregnant!) “Summer” in Florida lasts well through the end of September so we would like to wait for it to cool off. The weather in December should be pleasant and according to my handy dandy Disney guide books the weeks preceding Christmas are also the least crowded time of the year. Plus, all the theme parks have special holiday themed events and decorations that run throughout the month. Making the happiest place on earth that much more magical. Our second choice was early November, again for the weather and crowds followed by January 2009 around Sebastian’s birthday.
Last week we found out that Sebastian’s wish has been approved. We selected the travel dates of December 6th-14th, 2008.
We asked if it was possible to extend our trip beyond the time at GKTW and move over to another hotel using our Hilton Honors points. Our request was approved. We will be staying at Give Kids the World for the standard five nights and then moving to another hotel. We’ll be traveling with a three and a half year old, a two year old and a three month old. We figure we’ll need time plenty of time for naps and nursing.
Having lived in Florida for most of our lives, I guess you could call us Orlando theme park veterans. We used to buy annual passes for Disney. Our children seem to have inherited our enthusiasm for theme parks. As previously mentioned, last October 2007 before Sebastian got sick, we fulfilled a life-long wish of mine to experience the wonder of Walt Disney World with my children. We spent nine wonderful days touring the four Disney parks, the two Disney water parks and Mickey’s Back Yard BBQ. (I didn’t do a DIS forum “trip report” but I did write all about it on our family blog. If anyone is interested in reading PM me)
I'm sure this trip will be quite different and special. Thankfully Brian and I don't feel any pressure to see any particular attraction since at some point we've covered pretty much everything. We are excited to make Sebastian the star of the show! He has grown over four inches since our last trip and if he grows another ¾ of an inch between now and December he should be able to experience the 40" rides at the parks. I think he will love Soarin!
I am very excited to have started the nitty gritty planning of our trip-- which park to visit on which day, the schedule for each day, where to eat etc. I am an organizational fanatic and really enjoy planning for positive events—almost as much as the events themselves. Oh I can see the big beautiful binder and page protectors in my head already! How absolutely wonderful it will be to spend my time on-line planning a vacation instead of just furiously researching tumors!
I’ve read The Complete Walt Disney World, Passporter’s Walt Disney World, Beyond Disney the Unofficial Guide and The Unofficial Guide Walt Disney World cover to cover. I’ve been using the Touringplans.com website for the crowd calendar to choose which parks to visit on which days. On our last trip to Disney I printed out the live entertainment schedules, character greeting time locations, and menus for the restaurants we would be eating at. I made numbered maps with our touring route. I even had it planned out what each person was wearing each day of the trip as well as check list for what to pack in my diaper bag for each half of the day. Nuts, I know!
While I am always delighted by those unexpected, spontaneous surprises on the trip I find that all the time spent in planning makes the trip itself so much more enjoyable. Who wants to “think” on vacation? I loved knowing what we were wearing, where we were headed when and what we needed to bring. This trip will be a little different with Make A Wish doing a lot of the major planning –like flights and transportation. Much will be “out of our control.” Still I’ve found tons of great information from past Wish Trippers here on the DIS forums. Please keep the great tips coming!
Sebastian’s wish has brought even us adults “hope” and something to look forward to through all the crap. Someday we’ll be riding real roller coasters instead of metaphorical emotional ones!
Stay tuned for our “Rough Draft” Itinerary.
Hi All! We are very excited to be sharing our son’s Make A Wish Disney Trip with you! First let me introduce our cast of characters: I'm Amber (25) and my fantastic husband is Brian (35). Brian and I have been married for nearly six years. We were married at the Vatican in Italy-that was my first big adventure in mirco-planning. Brian is an easy going Aero Space Project Manager. In my former (pre-mom) life I was a Corporate Event Planner (surprised?). These days I stay busy as the manager of our crazy-wonderful household and side-line as a professional photographer (check out www.angphotos.com).
We have two wonderful children, Sebastian (3 ½ years) our wish boy, and Siennah (22 months). Sebastian and Siennah are nineteen months apart. They are both ultra outgoing and energetic.
Sebastian is sweet and loving but every bit the feisty imp his red hair suggests.
Siennah is a super funny charmer. She gets into all sorts of two year old mischief but you can’t help but adore her.
We also have another little bundle of joy, Savannah, due to arrive the middle of August 2008 (4 ½ weeks to go!). Judging from all the kicking she does, I think the Lord must be sending us another "spirited" one.
It’s been one wild ride for us this past year! We’ve joked that Episodes of “House” don’t have anything on us
The following is the Reader’s Digest version of Sebastian’s journey:The week before Christmas, December 2007 we noticed that Sebastian had a nickel sized lump on the back of his skull. He had had no injury to the area and the area showed no signs of bruising. We took him to see his Pediatrician late December, 2007. She said that she believed that the area represented Cutis Aplasia (diagnosis #1) a dermis type of problem, but that we should take him to see a Pediatric Plastic Surgeon because she felt a “bony defect.”
The process of getting an appointment with the single Pediatric Plastic surgeon in our area was painstaking. We were able to finally be seen by him, late February, 2008. After physically examining Sebastian he said that he believed Sebastian had a “cranial defect” (diagnosis #2). He recommended that Sebastian have an MRI because he felt something “soft” coming through the “hole” and that he believed that it could possibly be the sagittal sinus vein that runs between the two hemispheres of the brain.
On March 4th, 2008 Sebastian had an MRI with contrast under general anesthesia. I called the following morning for results and got none. I called the next two subsequent mornings for results and again got none. We were told by the Pediatric Plastic Surgeon’s receptionist that he was tied up in surgery. Finally on the evening of Friday, March 7th, 2008 the doctor called to say that the MRI revealed a “solid soft tissue mass,” and that I should call his Secretary the following Monday to schedule a surgery to remove the mass.
My husband and myself began to seriously question if we were still working with the “right” kind of doctor to be operating on our son’s skull. On the morning of Saturday, March 8th I called the branch of our Pediatrician’s office that offered Saturday hours to ask if we were working with the right kind of doctor before moving forward with scheduling a surgery on Monday.
Meanwhile, the size of the “lump” on the outside of Sebastian’s head had grown from nickel sized to half dollar sized.
I was able to speak with one of our Pediatricians. She was appalled at the length of time it took to get us results and said that she would review the MRI and call us back. Within a half hour she called back and told us that an Oncologist would meet us at Hemby Children’s Hospital in an hour.
Once at the hospital Sebastian had a gamut of blood tests done. He also had a CT scan with contrast. Following the Oncologists review of the blood work, MRI and CT scan he told us that evening that he was 99% sure that Sebastian had a form of cancer called Langerhans’ Cells Histiocytosis (diagnosis #3). Specifically the Eosiniphilic Granuloma kind. He said that a biopsy of the tumor would be done so that we could be 100% sure and recommended that a Port-a-Catheter be placed during the same surgery so that Sebastian could begin Chemotherapy treatments the following week. That same evening (March 8th) we met with the Nuero Surgeon who would be performing the biopsy.
Sebastian had a full skeletal survey on Wednesday, March 12th. The survey revealed a tumor in the center of his upper right humerus about two thirds of the way up from his elbow.
On Friday, March 14th Sebastian underwent surgery to have the Port-a-Cather placed by a Pediatric Surgeon and was then flipped over to have the biopsy done by the Nuero Surgeon. The initial biopsy results done during the surgery came back that the tumor was NOT Langerhan’s Cells Histiocytosis after all. The Nuero Surgeon went ahead and removed the tumor which was larger than a “golf ball.”
We met with another Oncologist from the practice on Monday, March 18th. She explained to us that the Pathologist at Presbyterian Main Hospital thought that the tumor might be a Juvenile Xanthogranuloma (diagnosis #4) and that the specimen had been sent to the Pathologist at Carolinas Medical Center Hospital nearby and they concurred. They were not willing however to “close out” the pathology before having the case reviewed by THEE “World Expert” in bone Tumors, a guy named Dr. Krishnan Unni.
We were told that this expert was retired and out of the country for two weeks but that he agreed to review or case when he returned. In the meantime Sebastian would have a Bone Scan which our oncologists predicted would be negative. Sebastian had the Bone Scan done on Tuesday, the next day. The Oncologist called the day after that with the results of the Bone Scan. The scan confirmed the presence of a tumor in his right arm.
The Bone Tumor Expert determined that the tumor in Sebastian’s head was what is called a Giant Cell Tumor (diagnosis #5). The Expert said that he thought the tumor in Sebastian’s arm was completely un-related. Every other doctor we spoke with concurred. Giant Cell tumors are particularly aggressive and have a 60% recurrence rate. The Nuero Surgeon who removed the tumor didn’t perform the surgery the “right way” for this type of tumor because no-one guessed that this is the type of tumor that it would be.
The reason why no one would have determined it to be a Giant Cell Tumor is because these tumors don’t occur in people with open growth plates (meaning males under the age of 17---Sebastian is 3!). They also do NOT occur in flat bones like the skull. They are usually found in the joint area of the long bones of 20-40 year old females. Sebastian’s case is an exceedingly rare phenomenon.
Six weeks later we took Sebastian for another MRI to see how his head was doing and to get images of the tumor in his arm. He also had a fine needle biopsy done of his right arm at this time. To our dismay the MRI showed that the tumor that had been removed from his head had already started to grow back. The results from the biopsy of the tumor in his arm were inconclusive.
On May 29th he had another surgery to remove the recurrent tumor and to cut away a "radical" margin from his skull, leaving quite a large hole in his head. The Nuero Surgeon who worked on him filled the space with a synthetic calcium paste. He did an amazing job! Aside from a 5 inch incision down the back of his head we think his recovery has been incredible. During the same surgery Sebastian also had an open biopsy done of the tumor in his right arm by a Paediatric Orthopedic Surgeon.
The samples were all sent again to the World Bone Tumor Expert doctor to review. The Pathology report confirmed that the recurrent tumor in his head was another Giant Cell Tumor but to everyone's surprise the tumor in his arm was also a Giant Cell Tumor--making his already exceedingly rare case that much more extraordinary.Giant Cell tumors are usually isolated and do not occur simultaneously throughout the body. His sixth diagnosis is now Multicentric Giant Cell Tumors. So far as any doctor can tell us they can't find another case like it.....EVER!
The treatment for him is repeated surgery. Which means that we wait to see if the tumors grow back or more develop and then cut them out with “radical” margins. The chemotherapy and interferon “modalities” that this type of tumor responds to are highly toxic. Sebastian will have another round of testing done in the next dew weeks. He'll have a CT scan and a bone scan to see if any new tumors are developing. We hope and pray that his tests are clear.
Sebastian has been such a strong and brave boy throughout this whole ordeal. We could not be more proud of him. He is really resilient –heck most of the time I can’t keep up with him and his sister.
Now on to the positive stuff:
Last time Sebastian was staying in the hospital one of the Oncologists told us that they refer all of their “tumor” kids to the Make A Wish Foundation. We’d always been under the impression that Make A Wish was for terminally ill children and were surprised to find out that the majority of “wish kids” go on to lead happy and healthy lives (we hope that’s our Sebastian!). Within a week I was speaking with a woman named Liz from Central and Western North Carolina Make A Wish Foundation. She said they work with Sebastian’s Doctors and the Child-Life specialist at the Blume Hematology and Oncology Clinic all the time…how cool! So I gave Liz all of our family information (Sebastian’s age, siblings, interests, favorite characters-- that sort of thing) and she said they would be in touch after reviewing Sebastian’s case with his Doctors to determine Sebastian’s medical eligibility.
We were so surprised to get that call from a woman named Erin Hess. She said she was from the Make A Wish foundation and was going to be one of Sebastian’s “Wish Granters.” OMG! I started balling. I’d put it out of my mind not wanting to set our hopes for Sebastian on something like that. With three surgeries in three months and another still to come it’s been a difficult year for the little guy. We were so excited to see what he would come up with. Whatever he chose we were sure that it would bring him much joy.
On June 17th, 2008 Sebastian met his “Wish Granter’s” Erin and Shonda. Sebastian was so excited that he waited by the door ready to let them in when they arrived. What a joy to see him and Siennah filled with such delight. I was tearing up and they had not even come through the door yet!
Erin and Shonda arrived at 6:15 p.m. hands full of goodies for the kids. They introduced themselves and gave Sebastian a play-doh set, a stuffed dinosaur and a purple inflatable guitar and Siennah a book called “Elmo Loves You.”
The kids were excited to show Erin and Shonda their rooms and playroom. Then we settled into the bonus room to talk. Sebastian and Siennah dug into the play-doh straightaway. Grandma and Pap Pap came over around 6:30 and helped keep the kids occupied while Brian and I filled out all sorts of paper work and publicity releases. It was all so exciting!
Back on the day that we got the phone call from Erin, as we were driving home from grocery shopping, Brian asked Sebastian what he thought he might wish for if he could have “one wish.” After an explanation of exactly what a wish is, Sebastian said, completely unprompted and without hesitation, “I want to go to DISNEY!! I want to see Buzz Lightyear, Mickey Mouse, and Lightning McQueen. That’s my choice!” Big grin.
With his hero Buzz Lightyear in October 2007
I wish I possessed that kind of self assured decisiveness. My friends and I often joke about how it took me over a month to settle on what color Bumbo seat to order (there were only 3 color choices) and four times that long to choose a double stroller.
It was easy for Sebastian to conjure what would bring him the most joy. I think his happiest memories in his 3 and half year life are from our family trip to Orlando in October 2007. It was a magical time for all of us and it made perfect sense that he would want to go back and see his beloved heros, Buzz, Mickey and McQueen and of course enjoy his favorite past time…RIDES!
Knowing what Sebastian was likely to tell his Wish Granters when we met we started “googling” “Make A Wish Disney Trip” to get an idea of what to anticipate. We found loads of information right here on the DIS forums. We read as many “Wish Tripper” stories as we could. Each and every inspiring story made me choke up.
We found that Disney is actually the number one wish of kids who have faced life threatening condition. Disney fulfilled more than 6,000 Disney-related wishes in 2007 (out of 13,007 total wishes in 2007!) sponsored by Make A Wish. Disney has been a part of over 50,000 wishes since the Foundation started 25 years ago.
With Disney being the most common request the “Disney Wish” process seems to have been made into a smooth and streamlined experience yet personalized and unique depending on each child’s specific Disney wish. We learned that most Wish trip kids stay at a resort called Give Kids the World (GKTW). This resort is like a wonderland that exists solely for wish trips. The whole thing was started by a Holocaust survivor named Henri Landwirth. You have to check it out for yourself at http://www.gktw.org/
From what we found Make A Wish takes care of the transportation to and around Orlando and spending money while Give Kids the World provides accommodations in one of their two bedroom spacious villas” and donated theme park tickets. They offer 3 day park hopper tickets for the four Disney parks, 2 days park hopper tickets for Universal Studios and Islands of Adventure and 1 day tickets for Sea World as well as other are attractions like Bush Gardens.
GKTW also provides all meals at the resort for free. They serve breakfast and dinner in a restaurant called “The Gingerbread House” and frozen delights are available all day long at the “Ice Cream Palace.” The Village also has a carousel, mini golf course, Castle of Miracles, arcade, pool, splash area, train and Movie Theater. They host a plethora of activities during your stay such as horseback riding, pirate and princess parties, character meet and greets and a life size game of Candy Land. They even make it Christmas once a week complete with Santa, carriage rides, snow and twinkling lights! Here I go again with the crying as I type this!
When Erin and Shonda started talking to Sebastian he rattled off the full list of Disney characters he wants to meet. Most importantly, Buzz Lightyear, Mickey Mouse and Lightning McQueen. He has also added Emperor Zurg and Mater to the throng.
Sebastian with his "Wish Granters" Erin and Shonda
Erin and Shonda asked Sebastian his favorite color- green, food- pizza, drink- soda (Ha!) T.V. shows –Mickey Mouse Clubhouse and Buzz Lightyear of Star Command (surprised?) Ice-cream- vanilla/chocolate with “eyes” like at Bruster’s, Candy- giant swirl lolli-pops (wonder where he’s had those?), sports teams –Steelers, Carolina and USF (just like Daddy!)
Erin had Sebastian draw his wish on a specially marked piece of paper. With some assistance he drew Cinderella’s castle with Buzz Lightyear standing in front of it. At least that is what it somewhat resembled.
When Erin asked Sebastian what his “second choice” wish was in case Disney World was not possible he couldn’t even grasp the notion. So his second choice wish is actually Disneyland. He’s determined.
Brian and I requested to make the trip in the early part of December. We have a plethora of reasons for wanting wait. The biggest of which is the impending arrival of baby #3, little Savannah. We figure by December Savannah will be sleeping longer stretches at night and nursing a little less often. Being from Florida, we don’t want to go anywhere near the huge Disney crowds in the hot and humid summer months (especially this pregnant!) “Summer” in Florida lasts well through the end of September so we would like to wait for it to cool off. The weather in December should be pleasant and according to my handy dandy Disney guide books the weeks preceding Christmas are also the least crowded time of the year. Plus, all the theme parks have special holiday themed events and decorations that run throughout the month. Making the happiest place on earth that much more magical. Our second choice was early November, again for the weather and crowds followed by January 2009 around Sebastian’s birthday.
Last week we found out that Sebastian’s wish has been approved. We selected the travel dates of December 6th-14th, 2008.
We asked if it was possible to extend our trip beyond the time at GKTW and move over to another hotel using our Hilton Honors points. Our request was approved. We will be staying at Give Kids the World for the standard five nights and then moving to another hotel. We’ll be traveling with a three and a half year old, a two year old and a three month old. We figure we’ll need time plenty of time for naps and nursing.
Having lived in Florida for most of our lives, I guess you could call us Orlando theme park veterans. We used to buy annual passes for Disney. Our children seem to have inherited our enthusiasm for theme parks. As previously mentioned, last October 2007 before Sebastian got sick, we fulfilled a life-long wish of mine to experience the wonder of Walt Disney World with my children. We spent nine wonderful days touring the four Disney parks, the two Disney water parks and Mickey’s Back Yard BBQ. (I didn’t do a DIS forum “trip report” but I did write all about it on our family blog. If anyone is interested in reading PM me)
I'm sure this trip will be quite different and special. Thankfully Brian and I don't feel any pressure to see any particular attraction since at some point we've covered pretty much everything. We are excited to make Sebastian the star of the show! He has grown over four inches since our last trip and if he grows another ¾ of an inch between now and December he should be able to experience the 40" rides at the parks. I think he will love Soarin!
I am very excited to have started the nitty gritty planning of our trip-- which park to visit on which day, the schedule for each day, where to eat etc. I am an organizational fanatic and really enjoy planning for positive events—almost as much as the events themselves. Oh I can see the big beautiful binder and page protectors in my head already! How absolutely wonderful it will be to spend my time on-line planning a vacation instead of just furiously researching tumors!
I’ve read The Complete Walt Disney World, Passporter’s Walt Disney World, Beyond Disney the Unofficial Guide and The Unofficial Guide Walt Disney World cover to cover. I’ve been using the Touringplans.com website for the crowd calendar to choose which parks to visit on which days. On our last trip to Disney I printed out the live entertainment schedules, character greeting time locations, and menus for the restaurants we would be eating at. I made numbered maps with our touring route. I even had it planned out what each person was wearing each day of the trip as well as check list for what to pack in my diaper bag for each half of the day. Nuts, I know!
While I am always delighted by those unexpected, spontaneous surprises on the trip I find that all the time spent in planning makes the trip itself so much more enjoyable. Who wants to “think” on vacation? I loved knowing what we were wearing, where we were headed when and what we needed to bring. This trip will be a little different with Make A Wish doing a lot of the major planning –like flights and transportation. Much will be “out of our control.” Still I’ve found tons of great information from past Wish Trippers here on the DIS forums. Please keep the great tips coming!
Sebastian’s wish has brought even us adults “hope” and something to look forward to through all the crap. Someday we’ll be riding real roller coasters instead of metaphorical emotional ones!
Stay tuned for our “Rough Draft” Itinerary.
Love the pics 
Your little one has been through sooo much!! I can't wait to read more!!! 
I'm very enivous of when you are going, my dream is to make it to wdw at Christmas time. I'll be waiting for updates.
Cant wait to hear more
