PR Roid Rage is surfacing now.

fancynewbeesly · January 2014

One of the treatments for leukemia is steroids, twice a day. Needless to say, if DD's NORMAL meltdowns were at a 5, in the last week they have been bumped up to 500.

I could look at her funny and it will escalate into an hour long tantrum, meltdown.

The nurses tell me to keep on reminding myself it is only 28 days. It is only 28 days. (which is how long the steroids last)

fancynewbeesly · January 2014

@chickenonsunday

Except for the epic, monster meltdowns--we are doing alright. The doctors are so pleased by her response to the chemo and all her medicines---and you can definitely read their body language that they mean it. Once we started to hear that yesterday, it was like a huge weight was lifted off of me.

nancy30005 · January 2014

Oh honey. Hang in there. Could they give her something to mellow her out? (I have no idea what that would be, but it was the first thing that came to mind.)

I'm so sorry for all of this. I'm glad it's just 28 days.

(((hugs)))

fancynewbeesly · January 2014

@chickenonsunday Amazingly it hasn't been too bed. The first few days up until Thursday we got NO sleep. DD is sleeping through the night, which helps--the nurses have been amazingly quiet in taking her vitals.

DH is on the couch and I am sharing the hospital bed. I am not sure which one of us has the more comfortable option.

CHOP also has some sleeping rooms on the 8th floor that are filled by lottery overnight (they tend to give them the ICU people). However they are available during the day for naps and things like that as well. DH got to go home last night to do things around the house. Reese and I were both jealous! She asked to go back to Reesie's house today.

nanabanana06 · January 2014

Is there not a Ronald McDonalds house near you? I know when my cousin's daughter was in the NICU for all her stomach surgeries and stuff they stayed there a lot. They were a really big help.

Anyways, I'm glad that Reese is doing well! I hope you guys can go home soon!

PrimRoseMama · January 2014

I'm so sorry. I hope these 28 days zoom by. It must be so hard on everyone.

fancynewbeesly · January 2014

There is a Ronald McDonald house and we probably would have used it if we were THAT sleep deprived. Unfortunately to get Reese into a hospital bed instead of a crib, one parent HAS to stay in the room with her at all times. And since everything that happened, she has a lot worse separation anxiety with me now. So DH would take advantage of the Ronald McDonald house and he hasn't complained too much yet....

nanabanana06 · January 2014

Starearedkid said:

There is a Ronald McDonald house and we probably would have used it if we were THAT sleep deprived. Unfortunately to get Reese into a hospital bed instead of a crib, one parent HAS to stay in the room with her at all times. And since everything that happened, she has a lot worse separation anxiety with me now. So DH would take advantage of the Ronald McDonald house and he hasn't complained too much yet....

That sucks. I'm sorry. Hopefully you guys can get better sleep. Good luck!

MrsCodeMonkey · January 2014

Many hugs! Hope the time flies by. I'm glad she's responding to treatment.

littlestjerry · January 2014

Ugh, that's tough. I'm so glad to hear she's doing well, and I hope she gets to go home asap. I think about you guys a lot, and I hope the positive vibes from this board help get you through this.

pghmortdoll · January 2014

Glad to hear she is doing so well. Sorry to hear it is so hard on you and your DH. Praying that this month goes fast for you guys! Hang in there.

MrsT0514 · January 2014

Glad to hear she's doing so well aside from the meltdowns. Your attitude despite everything going on, is amazing! Sending all the positive vibes your way...I hope the next 28 days fly by for you guys!

theimpossibleastronaut · January 2014

So sorry you guys are going through this. So glad she is responding well though! Sending lots of thoughts and prayers your way.

Eleventy11 · January 2014

So glad to hear such good news...aside from the 'roid rage! Keeping you in my prayers.

fancynewbeesly · January 2014

Unfortunately, the side effects of the steroids are there for 28 days--they don't lessen. Just like the athletes that take the steroids. But it is temporarily and they ARE working, so I will deal with astronomical meltdowns

HappyMess15 · January 2014

I know I don't know you personally or on here either because I don't post often, but I think about your family everyday since you posted about your dd having leukemia. All of my prayers and positivity is sent your way. I seriously hope and pray that everything will be okay for you all.

PR Roid Rage is surfacing now.

Re: PR Roid Rage is surfacing now.

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