my2girlsrock
Mouseketeer
- Joined
- Nov 5, 2010
- Messages
- 241
Hi everyone,
I am very new to this..... Let me start by introducing my family or the "cast" of this trip...
My name is Teresa I am 33, I married my husband John, 35 in 2001. We have 2 beautiful daughters, Taylor 8 (turns 9 Dec) & Samantha who just turned 7 in Sept. Taylor is our wish child, her oncologist/social worker at the oncologist's office, thought MAW would be a good thing for Taylor. We are still in the very early stages but I have been reading up on the DISboards since we got the call from MAW a couple weeks ago that Taylor was approved. All of the stories amaze me!!! It is so nice to see so many kids that have gone through so much have the trip of a lifetime!!!
I am going to post some background medical info about Taylor & why she is MAW eligible.
Taylor is our beautiful 8 year old daughter & she has Neuro Degenerative Langerhans Cell Histiocytosis, (ND LCH) with Central Nervous System, (CNS) involvement and Diabetes Insipidus. At the age of three and a half Taylor was diagnosed with Diabetes Insipidus, (DI) is an uncommon condition that occurs when the kidneys are unable to conserve water as they perform their function of filtering blood. Once diagnosed with Diabetes Insipidus she was placed on DDAVP daily. The doctor told us there could be a number of different causes for her having DI including head trauma, a growth on the pituitary gland or genetic. Beginning with the year she was diagnosed with Diabetes Insipidus, she underwent an MRI of the brain yearly to watch for any changes with the pituitary gland. Up until March of 2009 all her MRIs came back normal. In March of 2009 the MRI showed subtle thickening of the pituitary stalk & an abnormal lesion on the brain. The word Histiocytosis was mentioned as the reason for the changes on the MRI. Diabetes Insipidus can be diagnosed years prior to Histiocytosis but is in fact caused by it. Since the time Taylor was diagnosed she has had approximately 9 MRIs, 4 X-Rays, 1 Full Body X-ray, 3 Nuclear Bone Scans, a TON of doctor appointments and blood work to many times to count. In March of 2010 she began having some strange neurological symptoms, hand weakness, she could not grip things well pencils, baseball as well as dizziness. The neurologist ordered an EEG & while we were waiting to have the test done, she had a petite seizure. After the EEG and a video EEG, she was placed on Trileptal, an anti-seizure medication. The abnormal lesion on the brain is Histiocytosis and is now beginning to affect her central nervous system. Taylor has had 2 IVIG infusion treatments which gave her many side effects & they did not seem to help her. Her doctors now feel chemotherapy is our only option.
Taylor had her port placed in the beginning of August, she started chemotherapy mid August. She has chemo every 4 weeks for 5 consecutive days Mon - Fri. She will have to undergo chemo for a course of 12 months or 12 cycles, so her last chemo session won't be until August of 2011. During the week of chemo & the week after she is really a mess, emotionally & physically.
Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.
Histiocytosis is not a cancer, in many ways histiocytosis is similar to cancer and is treated by oncologists with chemotherapy and/or steroids. It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an "orphan disease," meaning it strikes too few people to generate government-supported research.
Please learn about this disease & spread the word. More people need to be aware of histiocytosis & how dangerous it truly is. For the past 2 years we have had a Bowling For Histio Fundraiser in honor of Taylor & all the money raised goes to the Hisitocytosis Association of America.
Please keep Taylor in your prayers. Taylor is an energetic, active & fun-loving 8 year old. She loves to play sports especially soccer. She loves to play with her little sister Samantha & they enjoys doing "girly things", like their hair, wearing makeup & they are both really getting into clothes now. She LOVES Justin Bieber & music in general. Taylor & Samantha still really LOVE Disney. She doesn't like to be treated differently or "not normal". She gets frustrated when people try to make a big deal out of what is going on with her, she always tells people "You know there are alot of kids much sicker than me." That is the kind of person she is. Taylor is the strongest 8 yr. old we know, she makes us proud everyday with the strength she has & how positive she is every single day. She rarely complains & never gives up. She is an inspiration to us & because of this we have learned to take one day at a time, cherish EVERY moment & never lose faith.
Our daughter Samantha is 7 and she is having a really hard time with all of this. She is feeling VERY left out. We try to include her as much as possible but she gets scared about what her sister is going through. My husband & myself get worried, scared & upset & we are old enough to comprehend what is going on. I can't imagine being 7 & seeing your sister/best friend go through all of this. Sami tries to be strong & doesn't always express herself in the right way but we are working on getting her to express herself better. It is very hard to balance the attention between the 2 of them to make sure they both get what they need....
I work as a medical biller at a surgeons office & thank God they are understanding because I have missed ALOT of work. I miss at least 1 full week a month, then all the doctor's appointments, testing & everyday sickness that comes up. Vacation time goes towards sitting in a Doctor's office or hospital now
My husband is a warehouse manager & he works LONG hours. He won't admit it to them but our girls have him wrapped around their fingers... 
We heard from Make A Wish about 2 weeks ago saying that Taylor was approved for a wish & when we first told her & asked her we had NO idea what she would say.... we thought she would ask to meet someone like Justin Bieber or something like that. Imagine our suprise when she says "I really wish we could take a family vacation to Disney with GaGa & Pama (my mom & dad)" We were shocked, happy but suprised this is what she asked for. Then she went on to say she wants to get her own autograph book & hve ALL the characters sign it, have a meal with Mickey & Donald & pet the dolphins.... LOL MAW office told me about the DISboards so I have been looking since , I have found ALOT of info. We meet with Taylor's wish coordinator's next Friday so I thought I would post a few ?'s on here before we meet with them. We are so excited to possibly be going on a trip that we don't have to stress over money & how we are going to pay for it, to be able to go on a vacation & let our girls enjoy themselves will be priceless.... It will be a once in a lifetime thing to be able to have us not think about doctor's, chemo, upcoming appointments for a few days....
I do have a few questions if anyone could answer them or give me advice I would appreciate it....
~Taylor's wish is to go with my Mom & Dad, will they be included in the package or would they go on their own vacation but meet up with us?
~We would like to go sometime in Feb or March.... anyone know the weather at that time, also the crowd levels?
~MAW told us that usually the people that go through MAW stay at GKTW, but you can stay at a Disney Hotel.... What is the opinion on this? We have looked into GKTW & it looks amazing, but there are no Extra Magic Hours staying there, do you need the Extra Hours at the Disney Parks?
~I know that this is Taylor's Wish Trip but I would like to try to make sure that Samantha feels included as much as possible with this, how do I ask the MAW people this? Is that something I should not ask?
~Is there anything that we should ask the coordinator's the night we meet them?
I know this is probably alot for a first post but I wanted to try to get it all in... I was going to post a few pics but I have not posted enough post yet
Taylor has a Carepage site if anyone would like to read more about her.... the link is ~ carepages.com/carepages/TaylorR
Thank you all in advance for any advice you can give me....
One more thing I know I probably sound a little stupid but can anyone clue me in as to what all the abbreviations mean???? DD, DH, MVMCP, GAC etc LOL
I am very new to this..... Let me start by introducing my family or the "cast" of this trip...
My name is Teresa I am 33, I married my husband John, 35 in 2001. We have 2 beautiful daughters, Taylor 8 (turns 9 Dec) & Samantha who just turned 7 in Sept. Taylor is our wish child, her oncologist/social worker at the oncologist's office, thought MAW would be a good thing for Taylor. We are still in the very early stages but I have been reading up on the DISboards since we got the call from MAW a couple weeks ago that Taylor was approved. All of the stories amaze me!!! It is so nice to see so many kids that have gone through so much have the trip of a lifetime!!!
I am going to post some background medical info about Taylor & why she is MAW eligible.Taylor is our beautiful 8 year old daughter & she has Neuro Degenerative Langerhans Cell Histiocytosis, (ND LCH) with Central Nervous System, (CNS) involvement and Diabetes Insipidus. At the age of three and a half Taylor was diagnosed with Diabetes Insipidus, (DI) is an uncommon condition that occurs when the kidneys are unable to conserve water as they perform their function of filtering blood. Once diagnosed with Diabetes Insipidus she was placed on DDAVP daily. The doctor told us there could be a number of different causes for her having DI including head trauma, a growth on the pituitary gland or genetic. Beginning with the year she was diagnosed with Diabetes Insipidus, she underwent an MRI of the brain yearly to watch for any changes with the pituitary gland. Up until March of 2009 all her MRIs came back normal. In March of 2009 the MRI showed subtle thickening of the pituitary stalk & an abnormal lesion on the brain. The word Histiocytosis was mentioned as the reason for the changes on the MRI. Diabetes Insipidus can be diagnosed years prior to Histiocytosis but is in fact caused by it. Since the time Taylor was diagnosed she has had approximately 9 MRIs, 4 X-Rays, 1 Full Body X-ray, 3 Nuclear Bone Scans, a TON of doctor appointments and blood work to many times to count. In March of 2010 she began having some strange neurological symptoms, hand weakness, she could not grip things well pencils, baseball as well as dizziness. The neurologist ordered an EEG & while we were waiting to have the test done, she had a petite seizure. After the EEG and a video EEG, she was placed on Trileptal, an anti-seizure medication. The abnormal lesion on the brain is Histiocytosis and is now beginning to affect her central nervous system. Taylor has had 2 IVIG infusion treatments which gave her many side effects & they did not seem to help her. Her doctors now feel chemotherapy is our only option.
Taylor had her port placed in the beginning of August, she started chemotherapy mid August. She has chemo every 4 weeks for 5 consecutive days Mon - Fri. She will have to undergo chemo for a course of 12 months or 12 cycles, so her last chemo session won't be until August of 2011. During the week of chemo & the week after she is really a mess, emotionally & physically.
Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multi-organ involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.
Histiocytosis is not a cancer, in many ways histiocytosis is similar to cancer and is treated by oncologists with chemotherapy and/or steroids. It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is considered an "orphan disease," meaning it strikes too few people to generate government-supported research.
Please learn about this disease & spread the word. More people need to be aware of histiocytosis & how dangerous it truly is. For the past 2 years we have had a Bowling For Histio Fundraiser in honor of Taylor & all the money raised goes to the Hisitocytosis Association of America.
Please keep Taylor in your prayers. Taylor is an energetic, active & fun-loving 8 year old. She loves to play sports especially soccer. She loves to play with her little sister Samantha & they enjoys doing "girly things", like their hair, wearing makeup & they are both really getting into clothes now. She LOVES Justin Bieber & music in general. Taylor & Samantha still really LOVE Disney. She doesn't like to be treated differently or "not normal". She gets frustrated when people try to make a big deal out of what is going on with her, she always tells people "You know there are alot of kids much sicker than me." That is the kind of person she is. Taylor is the strongest 8 yr. old we know, she makes us proud everyday with the strength she has & how positive she is every single day. She rarely complains & never gives up. She is an inspiration to us & because of this we have learned to take one day at a time, cherish EVERY moment & never lose faith.
Our daughter Samantha is 7 and she is having a really hard time with all of this. She is feeling VERY left out. We try to include her as much as possible but she gets scared about what her sister is going through. My husband & myself get worried, scared & upset & we are old enough to comprehend what is going on. I can't imagine being 7 & seeing your sister/best friend go through all of this. Sami tries to be strong & doesn't always express herself in the right way but we are working on getting her to express herself better.
It is very hard to balance the attention between the 2 of them to make sure they both get what they need....I work as a medical biller at a surgeons office & thank God they are understanding because I have missed ALOT of work. I miss at least 1 full week a month, then all the doctor's appointments, testing & everyday sickness that comes up. Vacation time goes towards sitting in a Doctor's office or hospital now
My husband is a warehouse manager & he works LONG hours. He won't admit it to them but our girls have him wrapped around their fingers... We heard from Make A Wish about 2 weeks ago saying that Taylor was approved for a wish & when we first told her & asked her we had NO idea what she would say.... we thought she would ask to meet someone like Justin Bieber or something like that. Imagine our suprise when she says "I really wish we could take a family vacation to Disney with GaGa & Pama (my mom & dad)" We were shocked, happy
but suprised this is what she asked for. Then she went on to say she wants to get her own autograph book & hve ALL the characters sign it, have a meal with Mickey & Donald & pet the dolphins.... LOL MAW office told me about the DISboards so I have been looking since , I have found ALOT of info. We meet with Taylor's wish coordinator's next Friday so I thought I would post a few ?'s on here before we meet with them. We are so excited to possibly be going on a trip that we don't have to stress over money & how we are going to pay for it, to be able to go on a vacation & let our girls enjoy themselves will be priceless.... It will be a once in a lifetime thing to be able to have us not think about doctor's, chemo, upcoming appointments for a few days.... I do have a few questions if anyone could answer them or give me advice I would appreciate it....
~Taylor's wish is to go with my Mom & Dad, will they be included in the package or would they go on their own vacation but meet up with us?
~We would like to go sometime in Feb or March.... anyone know the weather at that time, also the crowd levels?
~MAW told us that usually the people that go through MAW stay at GKTW, but you can stay at a Disney Hotel.... What is the opinion on this? We have looked into GKTW & it looks amazing, but there are no Extra Magic Hours staying there, do you need the Extra Hours at the Disney Parks?
~I know that this is Taylor's Wish Trip but I would like to try to make sure that Samantha feels included as much as possible with this, how do I ask the MAW people this? Is that something I should not ask?
~Is there anything that we should ask the coordinator's the night we meet them?
I know this is probably alot for a first post but I wanted to try to get it all in... I was going to post a few pics but I have not posted enough post yet
Taylor has a Carepage site if anyone would like to read more about her.... the link is ~ carepages.com/carepages/TaylorR
Thank you all in advance for any advice you can give me....
One more thing I know I probably sound a little stupid but can anyone clue me in as to what all the abbreviations mean???? DD, DH, MVMCP, GAC etc LOL
Wow... Welcome to the Dis! 
!!!! 
