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Old 02-17-2010, 10:50 AM   #1
jen-y
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Nicky's Wish trip 9-20-10

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?

Last edited by jen-y; 08-17-2010 at 07:00 AM. Reason: updated
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Old 02-17-2010, 11:35 AM   #2
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Jen-Y,

Just wanted to say hi and welcome! My daughter, Elke (3), also has leukemia. She was diagnosed on 11/26/08, and is in Long Term Maintenance. I assume you are about to start Delayed Intensification (DI)? NOT a fun time, but it's that "knock out" punch they want to give those blasts so that they will hopefully never ever rear their ugly little heads again. It will be nice for you to have a wish trip to look forward to while Nicky is going through these treatments. Glad to hear he is handling it reasonably well, too. It's amazing how resilient these children really are. Elke says things like "Momma, when you took the medicine that made you lose your hair, did you...?", and I think assumes that many people have port-a-caths implanted in their chests. She doesn't remember life before cancer. She also laughed when they gave her the H1N1 vaccine in her arm last fall, saying that it felt like an "ant bite." These kids are TOUGH!

We are going on Elke's wish trip to GKTW on 4/17. If you end up going this fall, we have friends with a 4 year old little boy who also has leukemia that may be heading down in September or October. He is just finishing up his second DI and radiation, and hopefully heading to LTM soon!
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Old 02-17-2010, 11:47 AM   #3
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Just wanted to Stop past and say Hi and welcome.
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Old 02-17-2010, 11:58 AM   #4
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Hi Jen! Im so glad you started a PTR and Nicky is getting his Wish. Cant wait to follow along.
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Old 02-17-2010, 12:58 PM   #5
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Hi, my name is Amber and my son James just got his wish too. We joined here a few days ago, and I'm as lost as you are. Do you know your dates?
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Old 02-17-2010, 01:11 PM   #6
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Your family sounds awesome! So glad Nicky is in remission, and I know this trip will be a real boost for all of you. : Looking forward to following along with your planning and helping if I can
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Old 02-17-2010, 01:17 PM   #7
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Great news on remission!!! Can't wait to follow along! We are going on my daughter, Brigitte's, Wish Trip on April 24!! Ask lots of questions! These boards are AWESOME!!!
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Old 02-17-2010, 04:17 PM   #8
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Welcome!

Hi Jen,

WELCOME WELCOME! I'm pretty new here and just love the support and info that everybody here provides. I pray you find the same! So happy to hear Nicky seems to be doing better and that DISNEY was his wish --- yay!

We're going in April and can't wait! So I don't know anything now, but will be happy to share after we get back. In the meantime I look forward to following on with your planning!!

Blessings to you and yours,
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Old 02-17-2010, 05:17 PM   #9
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Just wanted to stop in and say hi. I bet your son is so excited for this trip and I really hope the weather cooperates for you. On our last trip in May '09 it rained the entire time we were there so we didn't get to do all the stuff we wanted to.
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Old 02-17-2010, 05:38 PM   #10
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Just wanted to Pop in and say hi :-)

Hurray for remission :-) Great News!!!!!!

We are waiting on dates for my daughters Wish trip too.. she wants a Disney Cruise :-)
I'll be following along...
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Old 02-17-2010, 09:30 PM   #11
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Just wanted to say Hello!!!

I have put a link to your report on the first page of the Wish Trippers thread! Glad you have joined us!!!
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Old 02-17-2010, 11:53 PM   #12
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Wow! Another pre-trip for me to get into! Welcome! 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!
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Old 02-18-2010, 12:50 PM   #13
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Wow this place is overflowing with new Wish Trippers!! I'm going to have alot of reading to do. So much for the kids and the housework

Welcome aboard!
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Old 02-18-2010, 01:17 PM   #14
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Hi, I'm Mary and my son Brian is getting his wish granted also!! I look forward to following along as well and I am glad that he is in remission!!
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Old 02-18-2010, 04:55 PM   #15
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We requested sometime in September, but we don't have confirmation on an exact date yet. He will be on maintanance by then, so he goes in to the hospital once every 28 days for chemo. I gotta figure out when in September will be that time and work around it.
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