Worried/Sad/Disappointed and need to vent

[Kristi391]

Just to note … be sure to check any cancellation/modification rules. At this point you may not be able to “save money” by either option unless you bought some kind of trip insurance. Though any fully-unused ticket will hold as a credit towards new tickets for a future trip.

Good luck to your niece, I hope she’s able to shake this and move on!

Yeah, that is our dilemma. I think at this point if niece can't go, the four of us will probably still end up going since the points would go into holding and have to be used it the use year, and I will take niece another time when she is well enough to travel. I will cancel all the character meals I had planned for her and eat mostly qs to save money for when I can take her. We will also probably just stay at an all-star, which she won't care about. I can take her off the plane reservation and get a credit for a future flight and she has a 4 day park hopper and I will change the dates and pay the upcharge, if necessary. It just makes me so disappointed and sad.

On a positive note, she did say she feels "fantastic" this morning. I am not sure if she had a fever or not when she woke up.

 

[Kristi391]

Monday update.

We should know on Thursday if she can go or not. Apparently one of the things that has been brought up is that if her numbers haven't shown improvement, they might do a bone marrow biopsy. I so hope she doesn't have to go through that. My brother texted me last night saying he was concerned about her going and asking what my plan was down there. I told him if she went I would get a stroller, leave parks in the heat of the afternoon, and not stay out late. I also told him I have cooling towels and have 3 non-park days planned. He was cool with that. So, we will see if she needs any tests/procedures next week and go from there.

Over the weekend she was mostly good. She did her bridging for brownies on Saturday and I don't think she had a fever that night. Yesterday she woke up cranky but rallied and went to her lax tournament. She played a bit in the first game, ran around with her friends and went on bounce houses in between games 1 and 2 and played so well in game 2. Game three she played a little but seemed lethargic, but was still running around when not playing. Fever went up to 101 last night but then went back down (I assume due to Motrin, which the dr said to manage the fevers with) and she went to bed around 6. She woke up fine this morning. Not sure how the rest of the day went. Hopefully the next few days are uneventful. Her last day of school is tomorrow and she really wants to go.

So, now we just wait, which is so hard.

 

[Disneydawg74]

Monday update.

We should know on Thursday if she can go or not. Apparently one of the things that has been brought up is that if her numbers haven't shown improvement, they might do a bone marrow biopsy. I so hope she doesn't have to go through that. My brother texted me last night saying he was concerned about her going and asking what my plan was down there. I told him if she went I would get a stroller, leave parks in the heat of the afternoon, and not stay out late. I also told him I have cooling towels and have 3 non-park days planned. He was cool with that. So, we will see if she needs any tests/procedures next week and go from there.

Over the weekend she was mostly good. She did her bridging for brownies on Saturday and I don't think she had a fever that night. Yesterday she woke up cranky but rallied and went to her lax tournament. She played a bit in the first game, ran around with her friends and went on bounce houses in between games 1 and 2 and played so well in game 2. Game three she played a little but seemed lethargic, but was still running around when not playing. Fever went up to 101 last night but then went back down (I assume due to Motrin, which the dr said to manage the fevers with) and she went to bed around 6. She woke up fine this morning. Not sure how the rest of the day went. Hopefully the next few days are uneventful. Her last day of school is tomorrow and she really wants to go.

So, now we just wait, which is so hard.

Thank you for your generous updates. Hope your niece’s medical condition will resolve and we will hear about her enjoyment of the trip. Sending positive thoughts to all of you.

 

[flyingdumbo127]

Kristi and continuing

 

[BroadwayHermione5]

Continuing to send all the positive vibes your way!

Kids are resiliant- love that she set up a disco ball during all this!

 

[mom25kiddos]

I have been following along and wanted to send a note and wish her well. I hope you receive positive news on thursday!

 

[MamaMermaid]

I hope your niece is okay!! Sending lots of love!

 

[Kristi391]

So we did bloodwork last night and the results came back today and her wbc count went down and it has vastly reduced and probably eliminated the concern for leukemia! She is a bit anemic, which could make her hungry/tired but the dr said to just feed her good food, take a multivitamin and iron and to have fun at Disney!

We are so happy and thank you so much for all the positive messages!

 

[dizneedoll]

That’s wonderful! I hope you all have a great time! Please let us know when you come home how your trip was.

 

[AnnaS]

Great news!! Relax and enjoy your disney vacation!

 

[Giraffe_Zen]

So glad to her this news OP, have fun on your trip!

 

[flyingdumbo127]

What a beautiful picture, Kristi! God Bless that precious child. Have a safe and wonderful tripI also look forward to hearing about your fun

 

[mom25kiddos]

While I am thrilled to hear you can go on the trip, I am even more thrilled to hear her labs are improving and there is less concern! Enjoy!!

 

[Kristi391]

While I am thrilled to hear you can go on the trip, I am even more thrilled to hear her labs are improving and there is less concern! Enjoy!!

Thank you! We are so happy her labs have improved! The trip is just bonus!!

 

[DuckFam21]

So wonderful to hear the positive update. Look forward to hearing how the trip goes!!

 

[gatormom2tots]

Hope you guys have a wonderful trip!

 

[Kristi391]

Trip update!

We returned home yesterday and had a fabulous week. Niece felt good the entire week and never had a fever or needed Motrin. We kept a lot of fruit in the room so she snacked on that and I tried to keep her as hydrated as possible when out. She didn't eat a ton at meals, but she is never a great eater, so I can't really tell if that was a symptom or just her. Her mom called on Monday while we were at Epcot saying they might have a diagnosis (human granulocytic ehrlichiosis) and she would probably have to have antibiotics sent to the hotel but was waiting to talk to the doctor. Turns out the infectious disease doctor wasn't completely convinced that is what is was due to some of the tests results, so no antibiotics were called in. She has another appointment at Children's in Boston later on this week, so we will see what happens with that. Whatever it is/was seems to be so much better now-or maybe it was just Disney Magic!


Again, I really appreciate all the well wishes!

 

[flyingdumbo127]

Beautiful pictures! What a happy update for which I give extra thanks to God for.

 

[popy]

let me just say if you cannot get anything done with you regular doctor. which my experience is very little, except waiting to go to somewhere else. go to the emergency room. they will find out the problem before you leave.
my case my doctor said I had heart burn. went to the er it was heart attack; I had a back ack. dr said it was congestion.
so, I went to the er, they tested me and had cancer. on my kidney. after chemo I thought I had a stroke, because my arm went papalized, went to the er they gave me a scan and found a tumor on the brain.
so don't wait, go to the er , you will know before you leave. i have another story, but results is the same.

 

[Rogue1677x]

let me just say if you cannot get anything done with you regular doctor. which my experience is very little, except waiting to go to somewhere else. go to the emergency room. they will find out the problem before you leave.
my case my doctor said I had heart burn. went to the er it was heart attack; I had a back ack. dr said it was congestion.
so, I went to the er, they tested me and had cancer. on my kidney. after chemo I thought I had a stroke, because my arm went papalized, went to the er they gave me a scan and found a tumor on the brain.
so don't wait, go to the er , you will know before you leave. i have another story, but results is the same.

Wow! I'm so sorry to hear that, it's terrible.

My own health issues pale in comparison to that.