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Old 11-06-2007, 11:25 AM   #1
Iluvmickeymouse!
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A Wish to see Cinderella's Castle--DD's MAW trip

Well, here goes, my first trip report. I am not a very good writer, so please bear with me as I try and write this.

Cast of characters:

Me—mommy to two wonderful DD’s, lover of characters and all things Disney Age 32
DH—poor man was converted after our first trip to Disney, well ok maybe after the second or third! Age 39
DD4—Koryn (pronounced like Corrinne), our wish child, survivor of HLH (will explain later), loves princesses, Playhouse Disney, wants to see Cinderella’s castle Age 4
DD1—Karmyn, happy child, basically along for the ride! Age 1
MIL—never been to WDW, hardly travels out of the state, we were very happy when she agreed to go along (I actually get along quite well with her, I know…abnormal!!!!! ) Age 61

Koryn wished to see Cinderella’s Castle for her Make-A-Wish trip. (takes after her mommy just a little!)

Please allow me to tell you how we got to this stage in our life. When Koryn was 2 months old she was diagnosed with Hemophagocytic Lymphohistiocytosis, or HLH for short. It is a rare genetic immune disorder. Her body was basically not getting any of the good blood cells that it needed. We started chemo, steroids and all the other fun stuff. Here are a couple pics of that time……

This was the night of her Baptism, because she was on so many meds and immune compromised, we could not do Baptism during regular church services on Sunday. Doesn't look sick, does she???


Koryn receiving a dose of chemo, she is sitting on her Aunt Anne's lap.



Koryn’s only hope of survival was a bone marrow transplant. Her match actually ended up being stem cells from an umbilical cord. ( …..if you know anyone expecting…...please encourage them to donate their umbilical cord…very easy to do!) So, at the age of 7 months she received her transplant.

Shortly after we entered the hospital for her transplant..


We were in the hospital for 6 weeks and then released to the Ronald McDonald House. 2 weeks later we were back in the hospital, actually the PICU, because she now had Autoimmune Hemolytic Anemia. Now, it was her blood that was fighting against itself. When we first went in her hemoglobin was 2, yup just a little low, our doc actually thought she was dead when he walked into the room. She received Rituxin (an IV med) to help cure the anemia.

When she was in the PICU.....notice how pale she is....


We were back out in two weeks and home within two weeks of that.

We surprised everyone the day we came home, the docs told us we could go, so we did and didn't tell anyone! Koryn with her grandma...


Fast forward to today, she is doing quite well. Koryn is not on any daily meds. She does have to get IVIG, and intravenous immune booster, every six weeks. She receives this because the medicine, Rituxin, that she received to cure her anemia caused her immuglobulin levels to be low, go figure. We are 3 years 8 months post transplant, which is very hard to believe but very wonderful. Docs say they want to wait for that 5 year mark before they call her “cured”, but in my mind she is cured, there has been no sign of the HLH since her transplant. To anyone she meets nowadays, she is a normal, happy 4 year old, you would never know what she has gone through.

Now to the trip report….
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Old 11-06-2007, 11:35 AM   #2
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Wow! Great start and thanks for sharing Koryn's story. She looks like such a happy baby in those pictures. I'm so glad she is doing so well now.

Looking forward to your report.
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Old 11-06-2007, 11:42 AM   #3
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I'm so glad your DD4 is doing well. What a rocky start to life I bet she LOVED WDW!
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Old 11-06-2007, 12:41 PM   #4
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How precious! Even when she is getting chemo she is smiling. So glad you started your TR. Looking forward to more!

~Elisa
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Old 11-06-2007, 02:22 PM   #5
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What a beautiful princess you have there...I cannot wait to read your report.
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Old 11-06-2007, 02:30 PM   #6
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What a great start!!
We have a young teen at my church we are very close too. He calls me his bleached out mom and he is my toasted son. He had HLH. When I first read that your DD had HLH, I think on the Wish trippers thread, my heart went out to you. I can remember the weeks of chemo and the uncertainty and just the scariness of it all. I'm so glad she got her transplant and I'm 100% for donating umbilical cords!!!
With D (the friend from church) God healed him on the 13th week of chemo after the family was told that even after chemo (he was supposed to have 54 weeks) and then a bone marrow transplant that he had little hope left! This was 4 years ago. They officially pronounced him Cured and told he didn't have to come back for check ups anymore last month.
Can't wait to hear the rest!!!
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Old 11-06-2007, 02:32 PM   #7
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Your DD is such a beatiful little girl. I agree smiling even while so sick. So glad to hear she is doing well. Can't wait to hear more.
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Old 11-06-2007, 02:33 PM   #8
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Quote:
Originally Posted by mkluvsmickey View Post
Wow! Great start and thanks for sharing Koryn's story. She looks like such a happy baby in those pictures. I'm so glad she is doing so well now.

Looking forward to your report.
She was very happy throughout everything, looking back it amazes me how she handled everything. Thanks for reading!!

Quote:
Originally Posted by DL55 View Post
I'm so glad your DD4 is doing well. What a rocky start to life I bet she LOVED WDW!
A very rocky start indeed. You'll just have to wait and find out if she loved it or not!! and

Quote:
Originally Posted by 5dwarves View Post
How precious! Even when she is getting chemo she is smiling. So glad you started your TR. Looking forward to more!

~Elisa

Hi Elisa, thanks for coming over to my TR. I hope I can do just as well as you previous wish trippers have.
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Old 11-06-2007, 02:37 PM   #9
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Quote:
Originally Posted by DisneyLaura View Post
Your DD is such a beatiful little girl. I agree smiling even while so sick. So glad to hear she is doing well. Can't wait to hear more.
Thank you. She still smiles a lot...but now it is the goofy smiles when I want her to pose for nice pics.
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Old 11-06-2007, 02:49 PM   #10
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Wish process…..(a bit of a pre-trip report)

When I first thought about Koryn and Make-A-Wish, I didn’t know if she would qualify since she is doing so well now. So, I contacted our Child Life lady at UIHC (University of Iowa Hospitals and Clinics) to see if she could find out for us. She looked into it and said that yes she does qualify!! So she nominated us for a Wish. We were contacted by our local wish granter (who happens to be one of Koryn’s preschool teachers!) and she came to our house to talk to Koryn to see what her Wish may be. She told her that she wanted to see Cinderella’s Castle. Woohoo! Now we had to wait to hear if the Wish was going to be granted or not. Waiting is not one of my strong suits. I tend to get impatient waiting to find out certain things (I knew the sex of my children before they were born…just couldn’t wait!!). When we finally found out that we were going to Disney World, we were very excited!

Now, the planning. But, who does the planning?????? Me or MAW (Make-A-Wish) I am a planner, so it is very hard for me to let others plan things. I found out that we can both do the planning. I was nervous at first to contact the wish coordinator at headquarters in Des Moines, but I really needed to know certain things ahead of time. MIL decided to come along with us so we needed to know our flights so that she could buy her ticket too. Then we decided to add two days on to our vacation at our own expense. So, we needed dates!!! Kind of hard to make reservations somewhere when we didn’t know any dates!! Ended up that we were able to rent points from a DVC member and we got reservations at Saratoga Springs. We then needed to get tickets for MIL and another ticket for Koryn. DH and I had days left on our old tickets so we didn’t need anything new. We ended up getting a 10 Park Hopper non-expiring ticket for Koryn, knowing that we would be using the rest of the days on other trips. We also wanted to attend MNSSHP one of the nights that we are there, so we got tickets for the Sunday night of out trip. Since we get tickets from Give the Kids the World and we had our other tickets, we were now set!!

MAW had asked if Koryn’s favorite princess was Cinderella, which it is. I had a feeling that they were going to try and arrange for her to meet Cinderella, but I didn’t want to take any chances and for her to not meet Cinderella. So I made an ADR for 1900 Park Fare for the first park day that we would have. I could not get us in to the castle. 1900 Park Fare would work though, especially since the stepmother and stepsisters are there now!!!

Shortly before we were scheduled to leave, our wish granter came to our house and gave us our package.

Koryn and her wish granter…



Like the black eye….Koryn decided to not listen to mommy one day shopping and she fell out of the shopping cart. Dr. said it would take 2 weeks to go away….that would put it right before our trip!

Koryn received a hat, shirt, stickers, Disney planning DVD, Birnbaum’s planning book, MAW buttons, MAW backpack and a water bottle.

Koryn and her goodies….



Karmyn in her MAW shirt….



We also received a booklet of information from MAW. It had all the important numbers and times that we would need for our trip. In the back of the book they had a sheet in there that said they had arranged for us to eat in the Castle with Cinderella on the night of the 24th, which they stated was a MNSSHP party night, so they had also purchased tickets for DH, me and Koryn. Wait a minute……the 24th is not a MNSSHP night!! I knew this because that was the day I was planning for us to spend all day in MK so we could see Spectro and Wishes. I didn’t say anything to our wish granter because I knew she wouldn’t have any idea if it was right or not. Now that we had our packet, it seemed much more real!!! We were going to WDW!!!

I called the wish coordinator the next morning and asked her about the date of the dinner in Cinderella’s castle. She said it was the 28th. Woohoo! That is a MNSSHP night, in fact the one we were planning on anyway. Wait, now we have two sets of tickets for that night. MAW has some at will call for us and I have some. Oops! We decided that I would call Disney and explain the situation to see if we could return our tickets. They had no problem with us returning the tickets and getting a refund. We kept MIL’s ticket because MAW did not get her one. Oh and the reservations at the castle…just for DH, me, Koryn and Karmyn. I called WDW Dining to see if we could get her in but they were booked! I figured that we would ask when we got to the castle to see if there was room and let her eat with us, here's hoping!!!!

Last edited by Iluvmickeymouse!; 11-06-2007 at 06:46 PM.
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Old 11-06-2007, 02:59 PM   #11
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Quote:
Originally Posted by Avivasmom View Post
What a beautiful princess you have there...I cannot wait to read your report.
Thank you!! Unfortunately I cannot take all the responsibility...she looks like her daddy. Thanks for reading!!

Quote:
Originally Posted by LeeLee2U View Post
What a great start!!
We have a young teen at my church we are very close too. He calls me his bleached out mom and he is my toasted son. He had HLH. When I first read that your DD had HLH, I think on the Wish trippers thread, my heart went out to you. I can remember the weeks of chemo and the uncertainty and just the scariness of it all. I'm so glad she got her transplant and I'm 100% for donating umbilical cords!!!
With D (the friend from church) God healed him on the 13th week of chemo after the family was told that even after chemo (he was supposed to have 54 weeks) and then a bone marrow transplant that he had little hope left! This was 4 years ago. They officially pronounced him Cured and told he didn't have to come back for check ups anymore last month.
Can't wait to hear the rest!!!
Yay LeeLee's here!! It is rare to hear about others with HLH. DD was only the second one diagnosed at UIHC. There have been 3 others since. I also know of one other not to far from us who has been doctoring in Cincinatti (where one of the lead researcher/doctor for HLH is located) There are 2 variations of HLH, one that is genetic and one that can be caused by an infection of some sort. They have always stated that DD's is genetic. So far DD1 is doing well and has shown no signs of HLH. She has another 10 months to go before they will consider her out of the woods for it to onset. (at age 2....the chances of her showing signs decreases significantly)

I am so glad your church friend is doing well. Cured is an AWESOME word to hear!!!!!!
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Old 11-06-2007, 05:36 PM   #12
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Hello!!

I am from the Des Moines area so of course I had to read twice when I saw University of Iowa Hospitals...

Can't wait to hear about the rest of your trip, neighbor!!! Finally...another Iowan who is hooked on Disney. I can't seem to find TOO many out there!!
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Old 11-06-2007, 06:03 PM   #13
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Can't wait to read more!
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Old 11-06-2007, 06:03 PM   #14
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Ok this TR is going to make me cry. Beautiful daughters.
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Old 11-06-2007, 07:07 PM   #15
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What special wish. I am so glad that your family got to attend.
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