Saturday, December 6, 2008

Isabella Loves Her Sister

It's always a special occassion when Annalise comes to visit Isabella in the hospital. Isabella always perks up and has fun with Annalise. Here is a short video of Isabella and Annalise just goofing around while watching a video.

Chemo Postponed

We are waiting on a second opinion on the diagnosis from St. Jude's Childrens Research Hospital in Tennessee, which should be in on Monday. In addition, Isabella developed a fever overnight after the surgery, so we decided to postpone the chemotherapy until Monday. Isabella will remain on the Pediatric floor until the chemo is given, then she'll probably be transferred back to the Rusk Institute to continue her therapy. We're hoping for a nice, quiet weekend.

Friday, December 5, 2008

Out of Surgery

The operation to put the port in Isabella's chest was uneventful. Isabella is resting comfortably in the recovery area and we are now just waiting to be transferred to the Pediatric floor. During the surgery, we ran out and bought Isabella some chicken fingers and a hamburger, which she requested before she went under. I'm sure she's going to be starving.

To the OR

Yes, almost 3 hours later, they've finally taken Isabella to the OR. Julianne will be going into the OR with Isabella just until she goes to sleep. Then we will both wait in the recovery room until they're done, which could be an hour later.

This picture shows Julianne in an OR gown waiting with Isabella. Of course, Isabella stopped smiling just long enough for me to take the picture.

2PM Operation

Isabella is scheduled to be taken to surgery at 2PM. They will be placing a port in her chest that will be used to administer the chemotherapy. The whole thing shouldn't take more than an hour or so.

The poor thing went to bed early last night, around 8 PM. She isn't allowed to eat anything after midnight, and can only have clear liquids until 10 AM. She's in therapy now, but she's going to be miserable and starving up till the surgery. Here she is in therapy riding a special tricycle.

Wednesday, December 3, 2008

Big Weekend Coming Up (UPDATED with photos)

On Friday, Isabella will be going through an operation where they will implant a "port" in her chest. The port is placed right under the skin and is connected to one of her major arteries and is used to administer the medication during her chemotherapy. Since she will be getting treatments over the course of the next 6 months, this eliminates the need to constantly poke her arms with needles.

Then, during the weekend, she will receive her first round of chemotherapy. (Even as I type it, it still doesn't feel real, but this is as real as it gets.) Some of the side effects of the chemo is hair loss, nausea, and decreased white blood cells which makes it harder to fight off illnesses. Because of that, if you plan to visit Isabella within the next few months, we ask that you not be sick, and we will be passing the Purell around pretty generously. (We are hoping that she'll be home by Christmas.)

On a bright note, Isabella has started to walk on her own. She started standing with our support a couple of days ago, and would take a few steps if we supported her. But then just last night, we took a longer walk down the hall with her clutching my leg for support. Today at breakfast, we made the same walk, but this time, she just held my hand so she was supporting herself for the most part. Finally, tonight, she was so proud of herself that she started taking steps on her own, and would yell at us if we tried to touch her. Obviously, we're nearby to catch her if she falls since her legs are still weak, but we were really happy to see her walking. She still has to work on her right hand though. She can move her right arm, but her hand remains clenched. We're hoping that therapy will work with her more to make progress.

Finally, I apologize for the quality of the pictures. First off, they're taken with my phone camera. Secondly, since Isabella is so elusive towards the camera, I have to play ninja in order to get a picture of her.

Happy Wednesday

With Isabella busy in rehab for most of the day all week, I decided to ease my way back into work today and tomorrow. I stayed overnight in the hospital Tuesday night, got Isabella ready on Wednesday, and walked over to the office afterwards. It was probably the easiest commute I've had in years. The plan was to walk back to the hospital at lunch so I can have lunch with Isabella, then head back after work to spend some time before going home.

When I got to the hospital, I pleasantly found out that it was "Happy Wednesday", where all the kids on the floor get together in the dayroom and they are served a special lunch. It really is something to see the children get together and the appreciation they display. What's even more amazing are the volunteers that show up day in and day out to attend to the kids out of the goodness of their hearts. Last night, Isabella had a great time at a story telling session where some people brought in some books and read them to the kids. They even gave a bunch away. Tonight, some volunteers came in to build gingerbread houses and gingerbread men (or women) with the kids. Their efforts are not only inspiring and greatly appreciated, but extremely humbling.

I even got caught up in it myself during the Happy Wednesday lunch. Unfortunately, there were more children than volunteers, and some of the children are more needy than others. I tried to help out a little myself, by passing out some of the meals, helping a little girl cut her barbeque chicken, making sure someone had ketchup and just talking with the kids to hopefully let them forget for a few minutes where they were. When I finally walked back to the office, I thought to myself if anything I would ever do at work be as appreciated or as rewarding as assisting these children in need.

I would bet no.

Tuesday, December 2, 2008

Charitable Organizations

Many people have asked if they can give anything or do anything to help us out. At this point, there really isn't anything that we need and our family has been assisting us tremendously over the last couple weeks. We would ask that you not send any toys or stuffed animals as we already have a ton of them. The hospital also does not accept flowers or balloons in the children's rehab floor. We may need stuff for long term rehab or for when Isabella comes home, but we won't know that right away.

If you still feel that you would like to contribute something, we suggest you look at Making Headway.

This organization is not only researching cures for brain tumors, but they also provide a large support network for the victims and families, both during treatment and during recovery. They are partnered with the NYU Medical Center and its Stephen D. Hassenfeld Children's Center for Cancer and Blood Disorders.

For more information regarding pediatric brain tumors, visit these sites:
Children's Brain Tumor Foundation
Pediatric Brain Tumor Foundation

Monday, December 1, 2008

Back to Rehab

Isabella had her first full day of rehab today. Up till now, because of the holiday, she had only been getting partial rehab time, and we felt we lost a lot of time because of that. Isabella is still stubborn in using her right hand and in walking and is beginning to get dependent on her wheelchair. She constantly clutches her right hand and we need to get her to open it up and use it more so that she doesn't permanently lose functionality there. She is able to walk a few steps with some assistance, and we need to get her away from the wheelchair so that she can build up strength in her legs. Julianne has been working closely with her and the therapists to properly motivate her to cooperate.

We are trying to get as much therapy in as possible before her chemo treatment, because she'll be very weak afterwards, so the more progress we make now, the less we have to make later on.

Our Family Picture, Continued

You may have read about our family picture in the blog entry Our Family Picture. We were desperately trying to find a photographer who would be able to come to the hospital and take our picture before Isabella begins her chemotherapy this week. Julianne did a quick search of the area on the Internet and found Shira Weinberger. Julianne told her about our situation and Shira was immediately touched and offered to come down and do a photo shoot at no charge.

So on Sunday, we all got dressed up in our Christmas outfits and Shira, who happens to live just a few blocks from the hospital, came down and shot a whole bunch of pictures. And it wasn't easy! Isabella decided to be at her grumpiest, and frankly, I was just about to give up on the whole idea. But somehow after 20 minutes or so, Shira was able to get Isabella to relax so we can get some good pictures.

Shira has already posted a slideshow on her website at:

We can't thank Shira enough for her incredible generosity and patience. Please visit her website at and drop her a message to thank her for her amazing display of compassion.