A Wish to see Cinderella's Castle--DD's MAW trip

[Iluvmickeymouse!]

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. offtopic: …..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….

 

[mkluvsmickey]

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.

 

[DL55]

I'm so glad your DD4 is doing well. What a rocky start to life I bet she LOVED WDW!

 

[5dwarves]

How precious! Even when she is getting chemo she is smiling. So glad you started your TR. Looking forward to more!

~Elisa

 

[Avivasmom]

What a beautiful princess you have there...I cannot wait to read your report.

 

[LeeLee2U]

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!!!

 

[DisneyLaura]

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.

 

[Iluvmickeymouse!]

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!!

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

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.

 

[Iluvmickeymouse!]

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.

 

[Iluvmickeymouse!]

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!!!!

 

[Iluvmickeymouse!]

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!!

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!!!!!!

 

[Disfan3]

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!!

 

[LindaBabe]

Can't wait to read more!

 

[KimAshton]

Ok this TR is going to make me cry. Beautiful daughters.

 

[chiefdragon]

What special wish. I am so glad that your family got to attend.

 

[Momof2wCF]

So glad you've started your TR!!! Can't wait to read more and your babies are just too cute! (I'd best get moving on my TR now, or you'll pass me up!)
I haven't told anyone yet that we had a mini DISmeet! I have to tell everyone your kids are even cuter in real life!

 

[mkluvsmickey]

Thanks for sharing the Wish process - what a great program! How great that they got you into the castle!

 

[PrincessMomto2]

You already have me hooked on your trip report! Your daughters are both so adorable. I also have two girls although mine are 10 and 3. Fantastic news on Koryn being better and also on your trip! Can't wait to read more!

 

[Iluvmickeymouse!]

to all!!!

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!!

Hi neighbor! My sis lives in DM so we are there often!! Well, I am definitely hooked on Disney!!

Can't wait to read more!

Thanks for joining in!

Ok this TR is going to make me cry. Beautiful daughters.

Thank you. I think they are quite cute myself.

What special wish. I am so glad that your family got to attend.

It was a very special wish and a very special trip.

So glad you've started your TR!!! Can't wait to read more and your babies are just too cute! (I'd best get moving on my TR now, or you'll pass me up!)
I haven't told anyone yet that we had a mini DISmeet! I have to tell everyone your kids are even cuter in real life!

Hi Kirsten!!! So glad you could make it!!

Thanks for sharing the Wish process - what a great program! How great that they got you into the castle!

I know....we were looking forward to eating in the castle.

You already have me hooked on your trip report! Your daughters are both so adorable. I also have two girls although mine are 10 and 3. Fantastic news on Koryn being better and also on your trip! Can't wait to read more!

Thank you and thanks for joining in! My Dh is also outnumbered...me, 2DD's, 2 female dogs, 2 grandmas and 2 great-grandmas. Poor guy!

 

[Iluvmickeymouse!]

Going to Minneapolis

We wanted a direct flight to Orlando, so we chose to fly out of Minneapolis. Mpls is around a 3 hour drive for us. Our flight on Tuesday was scheduled to leave at 7:40 a.m. So, MAW paid for a hotel night so we could drive up on Monday.

I think one of the hardest things to do is to wait, especially when you are leaving to go on vacation.

Monday morning was a normal day for us…DH working, I drop the kids off at daycare, I go to work and Koryn goes to preschool. I then pick up the girls at 11 and go home. That is when the waiting began!!! I finished packing what I could while Karmyn slept. I kept Koryn awake in hopes that she would sleep on the way to Mpls. MIL came over around 2 to play with Koryn. I packed as much as I could and then had to wait for DH to finish his packing. He tends to over pack, so I had to watch him closely! So, what did I do to pass the time while waiting…….got on the Disboards of course!!!!!! DH finally came home around 4:30-5:00. I had REALLY wanted to leave around 3. Obviously that didn’t happen. So, instead of eating supper in Rochester or even Mpls, we drove through Mcd’s on the way out of town. Yay. Ok, so off we go.

We hadn’t gotten very far when I hear, mommy I gotta pee. Well, you gotta hold it because we aren’t even close to a town. Luckily we made it to the next town without an accident. About 2 hours into the drive we come upon an accident and they have the road detoured. Ok, no problem, pull out the map to see where we are. DH is driving so I tell him to just follow the cars in front of him. There was a car in front of us and then a semi in front of her. Wait, they just had us turn on a gravel road, from DH….are you sure this is where we are supposed to be going…me….I don’t know just follow the semi. Well, we would have if the lady in front of us would have gone more than 20 miles per hour. We live in the country so we are used to gravel. I figured the lady in front of us had never driven on gravel before in her life. She was driving on the left side of the road!!!! I was praying that no one was coming from the other direction. Then we would have had an accident on the detour from the accident. We finally made it back to the main road with no problems. (it was actually a very good and short detour for us to follow) Sure enough, as soon as we get back on the main road….mommy I gotta pee. Did I mention that Koryn did not sleep AT ALL on the entire way up. So much for not laying her down for a nap. Ok, so we stop to pee again. (got off on an exit ramp and she peed in the ditch! when you gotta go...you gotta go!!!) We finally made it to the hotel without any more incidents. The room is decent. Two queen beds. Koryn decides that she wants to sleep on the floor in between the beds. We have no pack-n-play for Karmyn. We wanted to get to sleep at a halfway decent time since we had to be up early, so off to bed we went. Koryn was the first one to sleep. We tried to have Karmyn sleep with DH and myself, it didn’t work. I finally laid her on the floor with her sister, she fell fast asleep. Go figure. We all had a pretty good night sleep, but I have to laugh because I think around 2-3 I heard Karmyn. I look down to check on her and she wasn’t there…..all of the sudden she comes walking around the end of MIL’s bed. Poor thing had woken up and started wondering around in the dark.

Here are the girls on the bed in the hotel......