My name is Shawna and my daughter Mackenzie has been granted a wish by MAW. We met with our wish granters in December but just found out last week that we are approved to go to Disney in April. Since so much time had passed I was thinking that they would be giving us one of our later dates. We are excited it is so close but there are so many plans to be made so I cant wait to learn from all of you. I have been reading others reports for a few months now and Mackenzie actually has me read her a few posts from different trip reports every night.
Let me introduce you to our family.
I (Shawna) work full time in human resources at our local childrens hospital and have been employed there for nearly 15 years. I am also a full time student and will finish my bachelors degree in human resource management hopefully in May. I had to take a leave of absence when Mackenzie got sick so I am a little off schedule now.
My husband Eric is an undercover narcotics detective for a police department in our area. He is the best husband and father you could ever ask for.
Our oldest daughter is Tyler. She just turned 18 but is a senior in high school so MAW said she is still eligible to come on the trip and have it paid for. She is a wonderful daughter and sister. She is in the marching band, national honors society, and was the world champion of the Soap Box Derby in 2007. She was such a great help when Mackenzie got sick. We saw her grow up overnight and she really stepped up and helped keep the house running. It is nice to know that all the things that you teach them are learned and applied when it really counts.
Our middle daughter is Madison, but almost everyone calls her Maddy. She is 15 and a freshman in high school this year. She is a very accomplished competitive gymnast and has won the state championship in her level the past 4 years in a row. She placed 2nd at Nationals last year and 4th the year before. She is also a straight A student. She had such a difficult time when Mackenzie was sick and told us she would quit gymnastics if we needed the money to take care of Mackenzie or if we couldnt get her to her practices. She is such a sensitive and sweet soul and she totally would have given up anything for Mackenzie to be healthy.
Last but certainly not least is the star of the show, Mackenzie. Mackenzie had her 8th birthday party on September 19, 2011 and we found out the following day that she had a brain tumor. She was a healthy, active, funny, and bubbly girl up until this point with only one symptom. Ironically last April we were in Disney where our oldest daughter was marching with the high school band in the parade. Mackenzie started experiencing what she called a beeping in her ear the first night we were in Disney. We made 2 trips to the urgent care center while we were there because she was so upset and her heart was racing during these episodes. They couldnt find anything wrong and said she may have a virus and to follow up with our pediatrician when we got home. We had to leave the parks several times that week because she was so upset and we couldnt get her to settle down which was very out of character for her. We did see our pediatrician and she couldnt find anything wrong either. Mackenzie is a fish and was taking swimming lessons and had also been in the pool everyday at Disney so they thought maybe she had water in her air. They gave us some numbing ear drops and that seemed to help. She had one episode of the beeping in May and it didnt happen again until July.
Other than when we were in Disney it always happened at night when she was asleep and it would wake her up. We made a few more trips back to the pediatrician and by August they referred us to an ENT. They did a full hearing workup and looked at her ears under a microscope. They told us that her ears and hearing were perfect. They said some people have a ringing in their ears and that there may not be anything to do for it so to make an appointment and follow up in 3 months. Mackenzie was very adamant that it was not a ringing but rather a beeping and told the doctor that there was something wrong. The ENT doctor said that really impressed him and that she was so persistent and consistent in what she was saying that he wanted to get a CT scan. He thought that she might have blood vessels running close to her ear drum and that she was hearing her heart beat through her ear.
They did the CT scan on Friday, September 18 and we had a wonderful and beautiful weekend celebrating her birthday and really didnt think anymore about the CT scan. By this point I had been tracking the episodes and they were happening at least a few times a week and lasting 3-5 minutes. The doctor called me on Monday and told me he had the results of Mackenzies CT scan and that they didnt find anything that related to her ears but they found a mass on her brain and they had to do further testing to determine the exact location and size since they were concentrating on the area around her ears and not on her brain. I dont even remember how I got home from work or how we got through that evening. We told Mackenzie that the doctors thought they found out why her ear was beeping but that they had to do more tests. She was totally fine but inside we were scared to death but somehow had to keep it together for her. She had the MRI the next day which lasted almost 5 hours and they admitted her straight from MRI. We talked to the neurosurgeon who told us that she had a large brain tumor between her brain stem and cerebellum. The beeping in her ear was pressure. The reason it probably happened when we went to Disney was because the flight created even more pressure in her head and there was nowhere for the spinal fluid to go. The reason it usually only happened at night was because when she was laying down it compressed the tumor on the back of the brain and close the path of the spinal fluid draining so basically when she was up and standing gravity was working in her favor so there wasnt as much pressure. They were shocked that she had no balance, or learning issues as many times those are the first symptoms.
She had to have the first surgery the following day to relieve the pressure and they put an external shunt in. She was in the hospital for a week before the pressure was down enough to do surgery. She was in surgery for about 6 hours where they cut the back of the skull and removed the tumor. The tumor was attached to the cerebellum which controls balance and coordination but was also close to the brain stem which controls swallowing and breathing, among other functions. The only time Mackenzie got upset was right before the surgery when she realized that she wasnt going to be in the Nut Cracker as she had just auditioned the week before and got chosen for a part. The surgery went well and they did get the entire tumor but she began having seizures following the surgery and developed Posterior Fossa Syndrome and Cereballar Mutism Syndrome. These are temporary symptoms where the brain doesnt make the right connections and so doesnt send messages to the rights nerves, etc. She did nothing but thrash for the first 72 hours after the surgery and it took my husband, myself and two nurses to hold her down. They didnt want to give her medicine to sedate her because they had to see how the brain was reacting and healing without being masked by the medication.
Following the surgery she has basically had to learn to do everything all over again. She couldnt open her eyes, move her fingers or toes, swallow, eat, use the restroom by herself, sit, stand, or really anything. Her brain had to learn how to make the connections again so they sent her to an inpatient rehab facility. She spent 10 weeks there and after nearly 2 months she started talking again. Shortly after she started talking she got the feeding tube out. She has made considerable strides but she still has a long way to go. She came home right before Christmas which was the best present ever. She started in the day rehab program after Christmas where she went from 8-4 to receive OT, PT, speech, and tutoring for school. It was great that she had just started talking when we met with the wish granters so she was able to verbalize her wish to go to Disney. She just went back to school about 2 weeks ago and is walking with a walker. She still has a lot of problems with her balance and coordination and has ataxia or shakes almost like a Parkinsons patient. This makes it difficult for her to write but she has an aid to help her. Considering where she was and where she is now it is a miracle. We are so excited that she is getting stronger every day. I should say there is still a little more to her story as they found a suspicious spot on her spine at her last MRI. They are just watching it for now so we are praying that this is not anything to worry about.
I'm looking forward to learning from all of your previous planning and trips!
Let me introduce you to our family.
I (Shawna) work full time in human resources at our local childrens hospital and have been employed there for nearly 15 years. I am also a full time student and will finish my bachelors degree in human resource management hopefully in May. I had to take a leave of absence when Mackenzie got sick so I am a little off schedule now.
My husband Eric is an undercover narcotics detective for a police department in our area. He is the best husband and father you could ever ask for.
Our oldest daughter is Tyler. She just turned 18 but is a senior in high school so MAW said she is still eligible to come on the trip and have it paid for. She is a wonderful daughter and sister. She is in the marching band, national honors society, and was the world champion of the Soap Box Derby in 2007. She was such a great help when Mackenzie got sick. We saw her grow up overnight and she really stepped up and helped keep the house running. It is nice to know that all the things that you teach them are learned and applied when it really counts.
Our middle daughter is Madison, but almost everyone calls her Maddy. She is 15 and a freshman in high school this year. She is a very accomplished competitive gymnast and has won the state championship in her level the past 4 years in a row. She placed 2nd at Nationals last year and 4th the year before. She is also a straight A student. She had such a difficult time when Mackenzie was sick and told us she would quit gymnastics if we needed the money to take care of Mackenzie or if we couldnt get her to her practices. She is such a sensitive and sweet soul and she totally would have given up anything for Mackenzie to be healthy.
Last but certainly not least is the star of the show, Mackenzie. Mackenzie had her 8th birthday party on September 19, 2011 and we found out the following day that she had a brain tumor. She was a healthy, active, funny, and bubbly girl up until this point with only one symptom. Ironically last April we were in Disney where our oldest daughter was marching with the high school band in the parade. Mackenzie started experiencing what she called a beeping in her ear the first night we were in Disney. We made 2 trips to the urgent care center while we were there because she was so upset and her heart was racing during these episodes. They couldnt find anything wrong and said she may have a virus and to follow up with our pediatrician when we got home. We had to leave the parks several times that week because she was so upset and we couldnt get her to settle down which was very out of character for her. We did see our pediatrician and she couldnt find anything wrong either. Mackenzie is a fish and was taking swimming lessons and had also been in the pool everyday at Disney so they thought maybe she had water in her air. They gave us some numbing ear drops and that seemed to help. She had one episode of the beeping in May and it didnt happen again until July.
Other than when we were in Disney it always happened at night when she was asleep and it would wake her up. We made a few more trips back to the pediatrician and by August they referred us to an ENT. They did a full hearing workup and looked at her ears under a microscope. They told us that her ears and hearing were perfect. They said some people have a ringing in their ears and that there may not be anything to do for it so to make an appointment and follow up in 3 months. Mackenzie was very adamant that it was not a ringing but rather a beeping and told the doctor that there was something wrong. The ENT doctor said that really impressed him and that she was so persistent and consistent in what she was saying that he wanted to get a CT scan. He thought that she might have blood vessels running close to her ear drum and that she was hearing her heart beat through her ear.
They did the CT scan on Friday, September 18 and we had a wonderful and beautiful weekend celebrating her birthday and really didnt think anymore about the CT scan. By this point I had been tracking the episodes and they were happening at least a few times a week and lasting 3-5 minutes. The doctor called me on Monday and told me he had the results of Mackenzies CT scan and that they didnt find anything that related to her ears but they found a mass on her brain and they had to do further testing to determine the exact location and size since they were concentrating on the area around her ears and not on her brain. I dont even remember how I got home from work or how we got through that evening. We told Mackenzie that the doctors thought they found out why her ear was beeping but that they had to do more tests. She was totally fine but inside we were scared to death but somehow had to keep it together for her. She had the MRI the next day which lasted almost 5 hours and they admitted her straight from MRI. We talked to the neurosurgeon who told us that she had a large brain tumor between her brain stem and cerebellum. The beeping in her ear was pressure. The reason it probably happened when we went to Disney was because the flight created even more pressure in her head and there was nowhere for the spinal fluid to go. The reason it usually only happened at night was because when she was laying down it compressed the tumor on the back of the brain and close the path of the spinal fluid draining so basically when she was up and standing gravity was working in her favor so there wasnt as much pressure. They were shocked that she had no balance, or learning issues as many times those are the first symptoms.
She had to have the first surgery the following day to relieve the pressure and they put an external shunt in. She was in the hospital for a week before the pressure was down enough to do surgery. She was in surgery for about 6 hours where they cut the back of the skull and removed the tumor. The tumor was attached to the cerebellum which controls balance and coordination but was also close to the brain stem which controls swallowing and breathing, among other functions. The only time Mackenzie got upset was right before the surgery when she realized that she wasnt going to be in the Nut Cracker as she had just auditioned the week before and got chosen for a part. The surgery went well and they did get the entire tumor but she began having seizures following the surgery and developed Posterior Fossa Syndrome and Cereballar Mutism Syndrome. These are temporary symptoms where the brain doesnt make the right connections and so doesnt send messages to the rights nerves, etc. She did nothing but thrash for the first 72 hours after the surgery and it took my husband, myself and two nurses to hold her down. They didnt want to give her medicine to sedate her because they had to see how the brain was reacting and healing without being masked by the medication.
Following the surgery she has basically had to learn to do everything all over again. She couldnt open her eyes, move her fingers or toes, swallow, eat, use the restroom by herself, sit, stand, or really anything. Her brain had to learn how to make the connections again so they sent her to an inpatient rehab facility. She spent 10 weeks there and after nearly 2 months she started talking again. Shortly after she started talking she got the feeding tube out. She has made considerable strides but she still has a long way to go. She came home right before Christmas which was the best present ever. She started in the day rehab program after Christmas where she went from 8-4 to receive OT, PT, speech, and tutoring for school. It was great that she had just started talking when we met with the wish granters so she was able to verbalize her wish to go to Disney. She just went back to school about 2 weeks ago and is walking with a walker. She still has a lot of problems with her balance and coordination and has ataxia or shakes almost like a Parkinsons patient. This makes it difficult for her to write but she has an aid to help her. Considering where she was and where she is now it is a miracle. We are so excited that she is getting stronger every day. I should say there is still a little more to her story as they found a suspicious spot on her spine at her last MRI. They are just watching it for now so we are praying that this is not anything to worry about.
I'm looking forward to learning from all of your previous planning and trips!
I also have older children, and they LOVED GKTW. PLEASE let me know if you have specific questions that I can answer. 
