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Old 03-07-2014, 07:38 PM   #1
starearedkid
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Reese's Pieces makes a wish pre-trip report

My daughter Reese was diagnosed in early January with ALL. She is two and a half.

Due to unlimited television and Disney movies---she has discovered Disney. Particularly Disney World. She wants to go to Disney to meet Mickey and the Lizard from Tangled.

Make a Wish called yesterday to set up a date to meet. For the last few weeks all Reese has been talking about is Disney, so I already know what her wish will be.

I seriously can't wait for Reese to make her official wish. Right now due to doctors, chemotherapy, hospital stays and being under house arrest due to a low immune system, she needs something fun to look forward too.

So I guess this is my official pre-trip report.
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Old 03-07-2014, 07:50 PM   #2
starearedkid
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Reese's story:

For about 4-6 weeks before her diagnosis she had warning signs, but we wrote them off as "the terrible twos". She had SUCH severe separation anxiety from me that I was pretty much a hurricane every day. For me to take a shower was a 20 minute hysterical meltdown. (if DH was home). She was fine at the daycare but if we were home, god forbid I did anything without her attached to me. She always had the "tired" look, but was not napping at the daycare and playing in her crib way too late, so we just assumed that, again she was going through a two year old sleep regression. She had no fever, or no actual sickness.

On Sunday, January 12th we were heading to our friend's to meet her new baby, and she was running away from DH and complaining that she didn't have her pacifier. She turned her head and he noticed a series of lumps on the side of her neck. She has food allergies, so immediately he thought it was an allergic reaction. Into the car and the ER we went. We got there and they ran bloodwork and it came back "concerning". They didn't say that she had leukemia but we had to be transferred to another "semi local" hospital that treats pediatrics. We got there and within the next 36/48 hours she got an official diagnosis: Acute Lymphoblastic Leukemia. We got transferred to the children's hospital where she stayed for a little under 3 weeks. She responded well to treatment but her immune system was so low they didn't feel safe sending her home. (At one point it was 0). During the hospital stay she lost a LOT of muscle strength and had every side of effect of steroids. We got home and then had to go back 36 hours later due to a fever and an infected port. Finally went home again, got off the steroids, achieved remission, and started physical therapy. During that time we were waiting for the port site to heal, and her immune numbers continued to be low. So we were under house arrest for almost 3 weeks and had to delay the next round of chemo. Yesterday her numbers finally went up, she got the new port placed AND started the next phase of chemo. It has been the longest winter ever.
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Old 03-08-2014, 01:33 PM   #3
lazy daisy
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Quote:
Originally Posted by starearedkid View Post
Reese's story:

For about 4-6 weeks before her diagnosis she had warning signs, but we wrote them off as "the terrible twos". She had SUCH severe separation anxiety from me that I was pretty much a hurricane every day. For me to take a shower was a 20 minute hysterical meltdown. (if DH was home). She was fine at the daycare but if we were home, god forbid I did anything without her attached to me. She always had the "tired" look, but was not napping at the daycare and playing in her crib way too late, so we just assumed that, again she was going through a two year old sleep regression. She had no fever, or no actual sickness.

On Sunday, January 12th we were heading to our friend's to meet her new baby, and she was running away from DH and complaining that she didn't have her pacifier. She turned her head and he noticed a series of lumps on the side of her neck. She has food allergies, so immediately he thought it was an allergic reaction. Into the car and the ER we went. We got there and they ran bloodwork and it came back "concerning". They didn't say that she had leukemia but we had to be transferred to another "semi local" hospital that treats pediatrics. We got there and within the next 36/48 hours she got an official diagnosis: Acute Lymphoblastic Leukemia. We got transferred to the children's hospital where she stayed for a little under 3 weeks. She responded well to treatment but her immune system was so low they didn't feel safe sending her home. (At one point it was 0). During the hospital stay she lost a LOT of muscle strength and had every side of effect of steroids. We got home and then had to go back 36 hours later due to a fever and an infected port. Finally went home again, got off the steroids, achieved remission, and started physical therapy. During that time we were waiting for the port site to heal, and her immune numbers continued to be low. So we were under house arrest for almost 3 weeks and had to delay the next round of chemo. Yesterday her numbers finally went up, she got the new port placed AND started the next phase of chemo. It has been the longest winter ever.
Im so sorry that your family is going thru this. Make a wish is a wonderful program. Load up on Disney movies for your daughter to watch while she has to be secluded, they will make her laugh. Best wishes to all of you
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Old 03-09-2014, 02:24 PM   #4
starearedkid
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We definitely have been watching a lot of Disney movies---old AND new. Which is how she found out about Disney World and Cinderella's Castle; many of the movies in the previews had an advertisement for Disney.

Reese tells me she wants to meet Mickey and the lizard from Tangled, not Tangled.

MAW is coming to our house on the 18th, so I am super excited!
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Old 03-09-2014, 03:20 PM   #5
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Hi Jordyn!

I am so happy to see you there on the Dis!

And very excited for Reese that she will get to fulfill her wish to meet Mickey, after such a long and hard winter for all of you... You deserve something fantastic to look forward to.

Please keep us updated with how the meeting with MAW goes, and if you need any help planning anything.

(((Hugs)))

D~
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Old 03-10-2014, 12:25 PM   #6
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HI!

Jumping over from D's PTR! Can't wait to hear the details...hope she is feeling better soon.


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Old 03-10-2014, 12:29 PM   #7
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I'm over from D~'s PTR too. If you haven't already, go over to the Disney website and order the planning video. Lots of fun Disney World stuff for her to watch there also.

I have an almost 2 1/2 year old, I couldn't imagine keeping her cooped up for long. Any Disney movies Reese needs added to her collection? I'd be happy to send one her way.
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Old 03-10-2014, 01:18 PM   #8
starearedkid
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Originally Posted by lovedonaldduck View Post
I'm over from D~'s PTR too. If you haven't already, go over to the Disney website and order the planning video. Lots of fun Disney World stuff for her to watch there also.

I have an almost 2 1/2 year old, I couldn't imagine keeping her cooped up for long. Any Disney movies Reese needs added to her collection? I'd be happy to send one her way.
That is so sweet but no thank you. Between the classics on Netflix, and my collection of Disney movies she is set. Right now her favorite is the animated short from 1930/40s of the Three Little Pigs.
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Old 03-10-2014, 01:21 PM   #9
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Now that I am at 10 posts--here are some recent pictures of Reese:




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Old 03-10-2014, 06:41 PM   #10
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Hi Jordyn,

I am jumping over from D's PTR also. Reese is adorable. I hope you have a great meeting with MAW. I hope that she is feeling better soon and that you have a great trip to WDW!!
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Old 03-11-2014, 02:36 AM   #11
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Stopping by from D's report. She is adorable!! I also could not imagine keeping a little one cooped up that long!! My 3 1/2 year old would drive us all crazy if I had to do that. Hope she starts to feel better soon and can't wait to hear all about your planning and your cute little girl.
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Old 03-11-2014, 09:05 AM   #12
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She is so cute!
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Old 03-11-2014, 10:05 AM   #13
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Stopping by from D~s Pretrip report. I hope treatment of Reese goes as planned at that you will all be able to go on this wish trip. I can't wait to hear more about your planning for the trip and how your family are doing.
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Old 03-11-2014, 01:32 PM   #14
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Another one coming over from D~'s ptr. Your little one is just precious! I'm so sorry your family is going through this. It must be very frightening at times. I will be praying for your entire family.

Meanwhile, have a wonderful time planning your family's trip to Disney World! Whenever questions come up, just ask and I'm sure someone on here will have the answer. We love to share each other's excitement!

And, BTW, I LOVE the name Reese!
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Old 03-11-2014, 10:12 PM   #15
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I'm sorry to hear what Reece has been going through. We have had periods during which Sophie was restricted to being home but her ANC was never THAT low.

Also, she's seven and while she's had plenty of time to get bored, it's just not the same for a busy preschooler. I'm sure it's very hard on you and Reece, both.

Excited to see another MAW family and eager to hear all about Reece's plans!
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