WE'RE HOME!!!

We are all home now. Isabella hasn't felt like doing much so we're just going to lounge around and watch TV. We have a follow up appointment on Wednesday and we'll start doing blood checks to watch her blood counts.

 

Here are a couple pictures from the hospital.

 

Looney Lenny visits Isabella in the playroom.

Daddy and Isabella take a nap.

Isabella reads cards that her classmates made for her.

Almost Done with Chemo

So it's been a pretty rough week with Isabella in the hospital. Thankfully, Isabella hasn't had as much nausea as she had in previous cycles (although it was a little worse today). Actually, the worst part has been her frequent urination. Because of some of the toxic effects of the chemo on Isabella's other organs, they are also hydrating her with a lot of IV fluids. They are giving her so much fluid that she has to go to the bathroom every hour or so, which really makes getting any sleep tough on everyone. So the lack of eating plus the lack of sleep has made Isabella really weak (which in turn has been very difficult for Julianne and me to deal with).

Isabella did have a nice pick-me-up yesterday, when two of her teachers from school came to visit her. They brought her a bunch of gifts and activities and also some cards that her classmates made for her. Isabella was very excited to see them as she gave them a tour of the pediatric floor and played games with them in the playroom. That was certainly the highlight of her week.

Well thankfully we're almost done at the hospital. Friday will be the last day of chemo and we're looking forward to being discharged on Saturday. We don't have much planned going forward and don't know what we're doing for Christmas yet. We're just planning on staying home for the next couple of weeks and hoping that Isabella doesn't develop a fever. Since we expect her white cell count to drop significantly, her immune system will be severely compromised, so if she does develop an infection, we'll need to go back to the hospital for at least another week. Our doctor has told us that we should expect her blood counts to bottom out right before Christmas, so we really don't want to take a chance that we'll be in the hospital for Christmas, so we're going to keep visits to a minimum.

A Sad Day of Remembering

Isabella just completed the first day of chemo.  Not much to report yet.  Hopefully, we'll be out of here on Saturday.

The last time we were in the NYU Pediatric Unit was on June 5, 2009, about a year and a half ago.  On that day, we headed home after Isabella completed her recovery from a stem cell transplant.  We were hoping to never have to return here.  As we walked into the unit, we were immediately flooded with emotion as we went through all the routines of hospital admission and treatment.  Overall it's a sad day as we remembered a lot of things we were hoping to forget:

• ...remembering all the nurses, nurse assistants, maintenance crew, and even the lunch ladies and having them remember Isabella
• ...remembering how horrible the elevator banks are at NYU (hint:  during peak times, jump on an available elevator no matter what direction it's heading.  If you wait until it comes back, chances are it'll be full.)
• ...remembering you can save time and keep warm if you're heading uptown by using the Rusk entrance instead of the NYU main entrance (and you can visit the botanical garden on the way)
• ...watching Isabella instinctively offer her arm to have her blood pressure checked and remembering to hold her own shirt up as the nurse checks on her mediport
• ...packing shorts and t-shirts knowing how hot it is in the rooms
• ...remembering that the rooms are so dry that we used to lay wet towels over the radiators to get some moisture in the air
• ...remembering how awful the wifi connection is at the hospital because it kicks you off every few minutes and you have to reconnect
• ...remembering all the items that I used to "spy" as we played I Spy when we walked around the unit
• ...remembering the hopscotch drawn on the floor and how Isabella used to play on it.  She can no longer play hopscotch because her right leg is so weak.
• ...knowing how to work the IV unit
• ...remembering that the DVD Library has odd hours so rushing there as soon as they announced they were open (today, they were opened from 7:30 to 7:45)
• ...remembering how crappy it is to not have the window side of the room

And that was just after being here a few hours.  I'm sure we'll hit a few more before Saturday.

More Chemo This Week

On Monday, we will head into the City to start a second round of chemo.  This round will consist of a different set of drugs than the first round and will consist of higher dosages.  Because of that, the chemo needs to be administered in the hospital and we will be staying there for the next few days.   Hopefully, we’ll be back home by the weekend, and with any luck, Isabella will be done with any nausea or fevers before Christmas.

Speaking of Christmas, we put up our tree today.  Here are a couple pictures from the weekend.  Enjoy, and wish us luck for the week!