Reese's Pieces makes a wish pre-trip report

[vleeth]

Reese immune numbers are still 0 and they show 0 growth. The doctors aren't concerned because that was REAL powerful chemo that she just finished--but it is hard being confined in one room.

Reese hasn't been allowed to leave the room yet---it is 5 days and counting. She can get out of bed and run in the room---she starts off the morning with her morning "exercises" and playing soccer. However, we are SLOWLY going stir crazy. During the day we keep her hospital room door open and she seriously stands at the door frame and waves to every nurse/person walking by.

They are thinking that our visit will be closer to two weeks. We definitely aren't going home this week, because even if her numbers start to show growth they want them to be heading towards 200 which can take 4-5 days in itself.

So we are stuck.

That sucks. Do they bring stuff to the room for her to do? Hope has been in the hospital a couple of times and they would bring board games and sand art and puzzles to the room. But there's only so much of that you can do before starting to go crazy. Hang in there!

 

[starearedkid]

That sucks. Do they bring stuff to the room for her to do? Hope has been in the hospital a couple of times and they would bring board games and sand art and puzzles to the room. But there's only so much of that you can do before starting to go crazy. Hang in there!

They do and I borrow stuff from the playroom as well. My parents came up and raided Target on Friday, and DH brought some toys from home yesterday; but it still gets old quick.

 

[vleeth]

They do and I borrow stuff from the playroom as well. My parents came up and raided Target on Friday, and DH brought some toys from home yesterday; but it still gets old quick.

Do you have a laptop? My dd loves watching youtube videos of people getting surprised with disney trips.

Plus you can pull up maps of the parks and plan which rides to do. Look up pictures and videos of the rides. Maybe watch the movie that goes with the ride.

Oh and games on pbskids.org.

But yeah, you're already 5 days in, so you've probably done most of this already.

 

[starearedkid]

Day 10 and we are still here...still with 0 immunity.

I was talking to DH today and if we are here another week (which seems probable)---she will be here longer than the initial diagnosis stay. Our room got moved to the 9th floor instead of the 3rd---since she isn't getting chemo right now, and just waiting---they need her room on oncology. So we are on the 9th, which is just neurology/general pediatrics. I did hear that there are 5 oncology patients on this floor---who are probably just waiting for their immune systems to come back up again.

 

[DMGeurts]

Oh Jordyn, I am so bummed to hear this... I sure hope you are out of there by now. (((Hugs)))

D~

 

[starearedkid]

We are STILL here in CHOP. 2 and a half weeks later. Hopefully we will be home next week. I asked Reese if she wanted to go home, she told me NO. This is the first time we have been here where the age group skews younger---usually it is 6, 8, 9 year olds or teenagers. For the most part this time it is 2-5 year olds---so she has friends in every room, and is enjoying art and music classes way too much.

 

[starearedkid]

Here are some hospital pictures of Reese:

 

[vleeth]

I can't believe you are still there!!!

But I'm glad to hear she is having fun and isn't feeling bad all the time!

 

[Terkina]

I hope you can go home soon.
I'm glad to hear Reese is having some fun and is not feeling bad all the time.

 

[starearedkid]

We may be heading home from the hospital tomorrow.

I am SO excited!

 

[starearedkid]

So,

I have double great news to share.

We arrived home from CHOP last night at 7:15pm; after 3 weeks. Her immune numbers were still not where they would like them to be, but there was a lot of growth being shown. Because of that the doctors discharged us--with the understanding that we would go back on Friday for bloodwork just to make sure everything was still in the right direction. Otherwise we would stay until her numbers went up. Luckily Reese didn't have a say; she would have chosen to stay at the hospital.


The other great news is the day before we were admitted, I got a message that we were chosen for THE BIG GIVE. I was completely floored and immediately said YES! Of course they needed Reese's measurements, and Reese was not feeling well that night at all. (The next day was the day of her transfusions and fever). So I did what any normal sane, person would do---I packed the measuring tape!

We got our first set of pixie dust while we were away. I waited for this evening to open it because Reese was SO overwhelmed with being home throughout the day she wouldn't even focus on anything. She was just running and inspecting everything. It is a GORGEOUS Cinderella dress--I took some "bad" photos---because having a toddler stay still long enough is impossible. I will upload them tomorrow. She loved it so much she had to model it for Grandma and then wanted to eat dinner in it. (Luckily she was eating plain grilled chicken for dinner!)

I didn't see who it was from, but we THANK YOU so much!

 

[vleeth]

Its so nice to see some good news from you and doubly nice at that!

 

[starearedkid]

Here are the really bad photos. Reese doesn't stay still for a minute.

 

[vleeth]

How very precious!

 

[Terkina]

It's so great to hear some good news from you. I hope the immune system keeps going up. What a cute dress

 

[lovedonaldduck]

The dress is beautiful! So happy to hear the good news!

 

[DMGeurts]

So,

I have double great news to share.

We arrived home from CHOP last night at 7:15pm; after 3 weeks. Her immune numbers were still not where they would like them to be, but there was a lot of growth being shown. Because of that the doctors discharged us--with the understanding that we would go back on Friday for bloodwork just to make sure everything was still in the right direction. Otherwise we would stay until her numbers went up. Luckily Reese didn't have a say; she would have chosen to stay at the hospital.


The other great news is the day before we were admitted, I got a message that we were chosen for THE BIG GIVE. I was completely floored and immediately said YES! Of course they needed Reese's measurements, and Reese was not feeling well that night at all. (The next day was the day of her transfusions and fever). So I did what any normal sane, person would do---I packed the measuring tape!

We got our first set of pixie dust while we were away. I waited for this evening to open it because Reese was SO overwhelmed with being home throughout the day she wouldn't even focus on anything. She was just running and inspecting everything. It is a GORGEOUS Cinderella dress--I took some "bad" photos---because having a toddler stay still long enough is impossible. I will upload them tomorrow. She loved it so much she had to model it for Grandma and then wanted to eat dinner in it. (Luckily she was eating plain grilled chicken for dinner!)

I didn't see who it was from, but we THANK YOU so much!

Here are the really bad photos. Reese doesn't stay still for a minute.

Yay!!! So precious!!! I adore the dress with the rain boots! Glad she loves it! The person who made it is Diane Levene - I can't remember her DIS name though... I will be sure to share your post with her so she sees, she will be thrilled!!!

So glad you are home now, what a relief!

And congrats on the Big Give!!! Such a deserving family!!!

D~

 

[starearedkid]

Reese LOVES her rainboots. I completely forgot she was wearing them when she tried on the dress. She was wearing them because her outfit that she was wearing that day was pink and she needed her shoes to match. And the only pink shoes that she has right now are rain boots.

 

[FaithsWish]

I'm not sure how I missed all the updates on your PTR! I am so very glad Reese is home! And that dress is almost as adorable as she is!

 

[starearedkid]

So, right now I seem to have a tentative itinerary planned. DH wasn't much help except he wanted to do 3 things.

• Eat at Ohana
• Go to Germany in Epcot and buy a Cuckoo Clock
• Go to Animal Kingdom to see Pride rock. (I don't think there is one but won't burst his bubble)

So our schedule seems to be:
Sunday: Arrive early. Hopefully make the afternoon orientation. Have reservations at Rainforest Cafe in Downtown Disney at 5pm. I definitely want to take her to Once Upon a Toy and World of Disney. And the Lego Store.
Monday: Go to Epcot. Have reservations at noon for Biergarten. Go to Halloween at GKTW.
Tuesday: Get to Animal Kingdom early. We have reservations for lunch at Hollywood and Vine at Hollywood at 1:45. See Fantasmic.
Wednesday: Breakfast at Cinderella's Castle. All day in Magic Kingdom
Thursday: Universal and Island of Adventure---primarily spending most of the time in Harry Potter. Christmas at GKTW.
Friday: Sea world and a late dinner at O'hana
Saturday: Go home.