jen-y
Mouseketeer
- Joined
- Sep 25, 2008
- Messages
- 241
My name is Jennifer. I have been married for 13 years and have 2 children. Alyssa 8, and Nicholas (or Nicky) 4. About a year and ½ ago, we moved to the Chicago area (from Michigan) for my husband’s job. We have no family or friends here and literally did not know anybody when we moved out here. Still don’t really.
Here is our little back-story:
Last September, Nicky started acting not right. He was not eating much and he was always saying he was tired and cold. He would get unexplained high fevers (over 104) and night sweats. I took him to the pediatrician and he looked him over and said he did not see anything wrong and that it must just be a virus that would get better on its own. This behavior continued for another couple weeks. My husband and I were both concerned and decided I would take him back to the doctor and demand some answers.
So I took him back to the pediatrician the next day. By this time, he was white as a ghost, but being that I saw him everyday – I did not notice it till the doctor pointed it out. Also, he had Petechiae (bruises that look like a rash, which is caused by low platelets) on his face. I had no idea what Petechiae was, I just thought it was a bruise that happened while he was playing. The doctor took a blood test and then left the room. A couple minutes later a few more people came in the room (looking panicked) and said they had to take it again because something was wrong with the first one. Then they left the room and came back and said he had low hemoglobin and needed to go to the hospital. I think they said normal hemoglobin should be over 10, and his was only 3. I did not know at the time just how dangerously low that was. I asked the pediatrician what could cause that, and she said she was not sure, that is why they wanted me to take him to the hospital. I am pretty sure she knew what it was; she just did not want to be the one to tell me. So I took Nicky and drove to the local ER. They took another blood test and asked me if my husband was on his way. When my husband got there, they just mater of factly told us Nicky had leukemia. They said he needed to be transported by ambulance to Children’s Memorial Hospital in downtown Chicago. He spent a week there just to get stabilized.
I am happy to say he is doing well now. He is in remission, but still undergoes chemo and will continue to for a while. He is a real trooper. All the pokes, shots, and blood tests, he never cries. He has 8 more weeks of intense chemo, and then he graduates to maintenance for 3 more years. He has been handling it well. He occasionally gets fevers and has to go to the ER and also he usually throws up the day of chemo, but is fine by the next day. I don’t really think he understands what’s going on. Being that my husband works long hours and we are out here by ourselves, I take on all of the responsibility of taking care of Nicky (as well as Alyssa). I recently came down with some health problems of my own, which I think were brought on by stress.
Anywho, Nicky’s wish is to go to Disney. He says he wants to meet Mickey Mouse and go to Chef Mickey. I have been there many times in my 38 years. I love it and I think it never gets old! Nicky went once (before he was diagnosed), but the weather was terrible and it was basically a wash out. I mean I know chances are it will rain at some point on your vacation, but no exaggeration, it rained 24/7, morning, noon, and night.
the whole entire time we were there. No parades, fireworks, or characters walking around outside. So basically it didn’t count.
We are really excited. We are in the early stages. We met with our wish granters, but the exact date and details have not been worked out yet.
Jen-Y
We got confirmation on our dates
September 20-26 at GKTH. Also, we booked the 26-29th at he Nickelodeon Hotel by Universal Studio's. Nicky really wants to go there (since he has been seeing the commercial on TV). They have a character breakfast, so I need o call and make reservations for it.
PS. my computer is on its last leg, and I am not sure if we will get a new one right away, so hopefully I can still update and follow DisBoard.
Just made ADR for character breakfast at Nickelodeon Suites Hotel
I left a message w/a manager to see if there is anything special they can do for Nicky - even though we will be staying there after we check out of GKTW, so technically MAW won't be involved, but it does not hurt to explain the situation and ask. I don't know how customer service oriented they are (compared to Disney) We shall see.
Never heard back from anyone at Nick, after several messages. Kinda disappointing, but I'm gonna let it go.
In other news....Nicky is doing great. He is on maintenance now, and other than the hair loss, you would not even know he was sick. His hair is actually starting to grow back (he looks so cute) and will probably be back by the time of WDW. I made ADR's (for our whole group of 20) for Chef Mickey (Nicky's favorite) and for the 4 of us at CRT (my daughter's favorite). My husband and I actually even reserved our favorites (coral reef and tutto italia). Now I am thinking I should have kept something a secret as a surprise to the kids, so I am working w/ wish granters on a surprise and hopefully it works out, but I don't have confirmation on that yet
<a href="http://www.myvacationcountdown.com/"><img src="http://www.myvacationcountdown.com/tickers/gzjruvyccv4btybo.png" alt="www.MyVacationCountdown.com Ticker" border="0"/></a>
Trip is getting closer ! a little over 2 months to go. Nicky's white blood cell counts were low for a couple weeks, so he had to get a transfusion and he had to stop his meds, so he got off his schedule. He also had a fever there for a couple days, but they think that was an unrelated virus. I tend to agree, since his sister came down with the same thing a few days later. I need to get in planning mode, but for some reason, I am not motivated. I need to work on the t-shirts Tebi73 is helping me, so that is my mission for now.
8-17-10 - just got back from trip to Michigan. My parents came back with us, so now we are going to take them sightseeing in Chicago. Nicky has an appointment at the hospital down there tomorrow.
Shirts are done I can't believe it, after all that trying to figure out how to do it, I had a friend of a friend who owns a printing shop who was able to do everything for $5 a shirt! I will take a picture of it and post it on in a few days.
My sister gets down there a few days before us, so she is going to get Nickys shirt signed by the characters and surprise him with the autographed shirt What do you guys think is the best thing for her to use to get it signed. Is there like a fabric marker or something?
Got some info in from MAW. Our expense card, our flight times, and the limo is picking us up at
4:30am! its a good thing we are all morning people. More info to follow
One more thing? My sister told me something about Dis-boarders put a picture of Mickey Mouse on lime green paper and attach it to their stroller and packpacks, and thats how people know you are a dis-boarder down there??? whats up w/that?
Here is our little back-story:
Last September, Nicky started acting not right. He was not eating much and he was always saying he was tired and cold. He would get unexplained high fevers (over 104) and night sweats. I took him to the pediatrician and he looked him over and said he did not see anything wrong and that it must just be a virus that would get better on its own. This behavior continued for another couple weeks. My husband and I were both concerned and decided I would take him back to the doctor and demand some answers.
So I took him back to the pediatrician the next day. By this time, he was white as a ghost, but being that I saw him everyday – I did not notice it till the doctor pointed it out. Also, he had Petechiae (bruises that look like a rash, which is caused by low platelets) on his face. I had no idea what Petechiae was, I just thought it was a bruise that happened while he was playing. The doctor took a blood test and then left the room. A couple minutes later a few more people came in the room (looking panicked) and said they had to take it again because something was wrong with the first one. Then they left the room and came back and said he had low hemoglobin and needed to go to the hospital. I think they said normal hemoglobin should be over 10, and his was only 3. I did not know at the time just how dangerously low that was. I asked the pediatrician what could cause that, and she said she was not sure, that is why they wanted me to take him to the hospital. I am pretty sure she knew what it was; she just did not want to be the one to tell me. So I took Nicky and drove to the local ER. They took another blood test and asked me if my husband was on his way. When my husband got there, they just mater of factly told us Nicky had leukemia. They said he needed to be transported by ambulance to Children’s Memorial Hospital in downtown Chicago. He spent a week there just to get stabilized.
I am happy to say he is doing well now. He is in remission, but still undergoes chemo and will continue to for a while. He is a real trooper. All the pokes, shots, and blood tests, he never cries. He has 8 more weeks of intense chemo, and then he graduates to maintenance for 3 more years. He has been handling it well. He occasionally gets fevers and has to go to the ER and also he usually throws up the day of chemo, but is fine by the next day. I don’t really think he understands what’s going on. Being that my husband works long hours and we are out here by ourselves, I take on all of the responsibility of taking care of Nicky (as well as Alyssa). I recently came down with some health problems of my own, which I think were brought on by stress.
Anywho, Nicky’s wish is to go to Disney. He says he wants to meet Mickey Mouse and go to Chef Mickey. I have been there many times in my 38 years. I love it and I think it never gets old! Nicky went once (before he was diagnosed), but the weather was terrible and it was basically a wash out. I mean I know chances are it will rain at some point on your vacation, but no exaggeration, it rained 24/7, morning, noon, and night.
the whole entire time we were there. No parades, fireworks, or characters walking around outside. So basically it didn’t count.
We are really excited. We are in the early stages. We met with our wish granters, but the exact date and details have not been worked out yet.
Jen-Y
We got confirmation on our dates
September 20-26 at GKTH. Also, we booked the 26-29th at he Nickelodeon Hotel by Universal Studio's. Nicky really wants to go there (since he has been seeing the commercial on TV). They have a character breakfast, so I need o call and make reservations for it. PS. my computer is on its last leg, and I am not sure if we will get a new one right away, so hopefully I can still update and follow DisBoard.
Just made ADR for character breakfast at Nickelodeon Suites Hotel
I left a message w/a manager to see if there is anything special they can do for Nicky - even though we will be staying there after we check out of GKTW, so technically MAW won't be involved, but it does not hurt to explain the situation and ask. I don't know how customer service oriented they are (compared to Disney) We shall see.
Never heard back from anyone at Nick, after several messages. Kinda disappointing, but I'm gonna let it go.
In other news....Nicky is doing great. He is on maintenance now, and other than the hair loss, you would not even know he was sick. His hair is actually starting to grow back (he looks so cute) and will probably be back by the time of WDW. I made ADR's (for our whole group of 20) for Chef Mickey (Nicky's favorite) and for the 4 of us at CRT (my daughter's favorite). My husband and I actually even reserved our favorites (coral reef and tutto italia). Now I am thinking I should have kept something a secret as a surprise to the kids, so I am working w/ wish granters on a surprise and hopefully it works out, but I don't have confirmation on that yet
<a href="http://www.myvacationcountdown.com/"><img src="http://www.myvacationcountdown.com/tickers/gzjruvyccv4btybo.png" alt="www.MyVacationCountdown.com Ticker" border="0"/></a>
Trip is getting closer ! a little over 2 months to go. Nicky's white blood cell counts were low for a couple weeks, so he had to get a transfusion and he had to stop his meds, so he got off his schedule. He also had a fever there for a couple days, but they think that was an unrelated virus. I tend to agree, since his sister came down with the same thing a few days later. I need to get in planning mode, but for some reason, I am not motivated. I need to work on the t-shirts Tebi73 is helping me, so that is my mission for now.
8-17-10 - just got back from trip to Michigan. My parents came back with us, so now we are going to take them sightseeing in Chicago. Nicky has an appointment at the hospital down there tomorrow.
Shirts are done
I can't believe it, after all that trying to figure out how to do it, I had a friend of a friend who owns a printing shop who was able to do everything for $5 a shirt! I will take a picture of it and post it on in a few days.My sister gets down there a few days before us, so she is going to get Nickys shirt signed by the characters and surprise him with the autographed shirt
What do you guys think is the best thing for her to use to get it signed. Is there like a fabric marker or something?Got some info in from MAW. Our expense card, our flight times, and the limo is picking us up at
4:30am! its a good thing we are all morning people. More info to follow
One more thing? My sister told me something about Dis-boarders put a picture of Mickey Mouse on lime green paper and attach it to their stroller and packpacks, and thats how people know you are a dis-boarder down there??? whats up w/that?
: Looking forward to following along with your planning and helping if I can 
Glad your son is in remission! That's a good place to be and a trip to Disney will make for something great to look forward to during all those meds!
