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.

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.

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.

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

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:
http://shiraweinberger.com/photos/IsabellaIcatar/

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

Positive Thoughts

It's difficult to think positively when up till now, we've pretty much gotten the worst news at each stage. We went from thinking benign tumor to malignant tumor. We thought the tumor had been completely removed, only to find out that it had infiltrated the brain stem. We went from thinking it was a slow growing tumor to finding that there are some fast growing cells as well. At this rate, I don't even want to think about some of the cure and remission rates that we've found, or some of the really bad side effects from the chemotherapy.

But we have had a bunch of positives, including:

• Isabella was hours away from herniating her brain stem and dying. We were extremely lucky to have gotten Isabella to NYU when we did and have the right people available to work on her.
• The tumor was massive and completely replaced her left temporal lobe (10cm by 7 cm). The doctors said that they have seen tumors half this size that permanently wiped out a lot of functionality. Amazingly, Isabella's brain rewired itself and made new connections to work around the tumor.
• Aside from the loss of her right hand and leg, she is the same Isabella! She's just as smart, and fun and goofy and grumpy. With any brain surgery, there is always a chance of altering personalities or permanently losing some physical skills.
• Her right side continues to improve on a day by day basis. She can move her right arm and stand up and walk with some assistance. When in the "right mood", she'll do things with her right hand, and we expect her to be able to use her right fingers with more therapy.
• We thought that they would need to cut off all her hair for the surgery, but instead, they only had to shave a small strip for the incision. This is going to allow us to take a formal family picture with most of her hair before she goes to chemotherapy.
• The support that we've received from family and friends have been nothing short of amazing and uplifting.

It's been such an emotional roller coaster that it's hard to enjoy the positives only to know that a negative can be lurking right around the corner. But we have to hold on to these positives and use them to help us through the negatives.

Happy Thanksgiving, Part 2

Julianne, her dad, Annalise and Nathaniel came down to the hospital so that we can all spend Thanksgiving together. The rehab floor had a ton of food with a traditional Thanksgiving dinner. As soon as Isabella saw Annalise and Nathaniel, she immediately lit up and couldn't stop smiling (except of course when we took pictures of her!) We played, ate, and laughed. For the first time in over a week, our family was together and even though we were in the hospital, we felt normal.

And you can definitely tell the difference with Isabella. She wasn't cranky and didn't complain with her therapy. Annalise even accompanied her to one of her therapy sessions and Isabella loved having her sister around. Here are some pictures from our day.

All the kids on the Pediatric Rehab floor gather around the table in the playroom for Thanksgiving dinner.


Isabella loved having her sister around and could not stop smiling as they played all afternoon.


Nathaniel apparently thought that the foot rests on Isabella's wheelchair were made just for him. No matter where Isabella was, Nathaniel would try to sit or stand on the footrests. Here, Isabella tries to eat at the table, but Nathaniel goes ahead and grabs a seat.


Even though our family was together for only a couple hours, we had a ton of fun. Since Isabella refused to smile for posed pictures, we all put on our best grumpy faces for this picture....except for Julianne....

Happy Thanksgiving

Now that it is officially Thanksgiving, I'd like to thank everyone for the tremendous support and outpouring of thoughts and prayers we received. This has been and will continue to be the most trying times of our lives and we'd never be able to get through it without you. In particular, we'd like to thank my mom and Julianne's parents who have helped around the house while Julianne and I stay with Isabella in the hospital. We'd also like to thank my brother, EJ, and Julianne's brother and his wife, Mark and Beth who have stopped by to help around the house.

Thanksgiving for us will be very different this year. Normally, we gather at a relative's house and eat all day until we pass out. This year, we will be spending Thanksgiving in the Rusk Institute with a bunch of other families in similar situations. It will be different, and difficult, but at least we will be together.

I am confident that we are giving Isabella the best treatment possible and giving her the best chance of beating this. I am hopeful that come next Thanksgiving, I will have many more things to be thankful for, especially celebrating Isabella's health at home.

Meeting with the Oncologist

Isabella is beginning to adjust to her new surroundings in rehab. She started out cranky at having to move to yet another location, by not cooperating with the therapists. Finally in the afternoon, she began to adjust and started participating in activities. She got a little cranky late in the day, but that could be because she didn't get a lot of sleep being in a new place and all.

Julianne and I met with the oncologist, who will be treating Isabella. Although they still don't have the final pathology, they show a number of different cancer cells in her tumor, with some of them being aggressive gliomas. This was pretty much our worst nightmare.

We hope to start an aggressive chemotherapy treatment within the next week or two that will last 5 cycles over the course of the next 5-6 months. Over that time, we will have several MRI's taken to track how well what's left of the tumor is reacting to the chemo and hopefully, at the end of the cycles, there will be nothing left.

We know that the prognosis for malignant gliomas are generally not good, but the oncologist pointed out to us that they are still treating this to cure the cancer and not just prolong the inevitable. The next several months are going to be very difficult for us. Please keep us in your thoughts and prayers.

Off to Rehab

Isabella was just discharged from the Pediatric floor and is in inpatient rehab in the Rusk building. This building is adjoining the Tisch building where we were staying.

The rehab regimen here sounds pretty intense and very structured. They have set times for when they will do physical therapy, occupational therapy, and if necessary, speech therapy. Although to be honest, she's been talking fine. They also have teachers from the Board of Ed to keep the brain sharp. They have stuff scheduled from 9 until 4.

Isabella has continued to improve. She can now pick up a chicken nugget with her right hand and feed herself. Although it takes a litlle effort, she couldn't even move her arm a week ago. Everyone here is still amazed at the progress she's making. One nurse commented that she has never seen someone recover so quickly in her 17 years! Wait till the teachers find out she can already read!

Good Ol' Isabella

Here are just a couple pictures of Isabella today. The first shows a couple cookies that her older sister Annalise made for her. The second one is with her goofing around with a chicken nugget in her mouth. And finally, the last one is with her finally smiling. This picture actually took a piece of ingenuity on my part. She still stubbornly refuses to smile for the camera, which resulted in a bunch of goofy, frowning pictures. Finally, I said I wanted to get a good picture of her frowning, then voila! Big smile! :)

What a Week

[Editors Note: I am going to send out a quick update and backfill the details from the previous days, as I am sure people would like to see how Isabella is doing. Be sure to check below when I add some posts from previous days.]

It is now just past 5:30 PM on Monday, November 24. Exactly one week ago, our lives were thrown for a giant loop when we found a massive tumor in Isabella's head. It seems like a million years ago, and yet, it seems just like yesterday. We've had more ups and downs than a roller coaster, but right now, we seem to be cruising right along.

Physically, Isabella's recovery has been amazing. She's been eating and drinking great and been talking a chatting up a storm. Her right arm and leg are still weak, but she can move them a little and she can wiggle her fingers and toes which is a great sign. Unfortunately, Isabella is stubborn for the physical therapist who tried to work with her which could delay her full recovery. Surprisingly, when the pediatric rehab physician stopped by, Isabella was able to raise her right arm straight above her head and stretch out her fingers (even though she says it hurt a little). She was also able to stretch out her right leg and earlier took a few steps on her own.

As far as what's left of the tumor, we still have not heard back the pathology results. So we're still in limbo as far as that is concerned. But as the doctor suggested, there's no need to worry now, but what we do know is that Isabella is getting back to her normal self. And that in itself is enough to make us smile.

Isabella Makes Incredible Progress

Over this past weekend, Isabella has made some incredible progress physically. Immediately after the surgery, she wasn't able to move her right arm or right leg at all, although she could wiggle her fingers and toes a little with some effort. But over the last couple days, Isabella has been moving her right arm and leg and stretching out her fingers. She's still favoring her left side heavily, but we're trying to encourage her to use her right side to build strength. She has also been drinking and eating very well which will contribute to her growing strength.

Just tonight, I was talking in the hallway with another parent. When I looked over at her bed, I noticed that Isabella had climbed out of bed on her own and took a couple steps towards me. Her right leg finally gave out because it was so weak and she fell on her bottom, but we were both extremely excited that she had tried to walk. Her smile was from ear to ear! It turns out that Isabella had to go to the bathroom, which is why she got out of bed, so I guess we just have to find the proper motiviation for her!

We Make A Breakthrough Discovery

We just made an amazing discovery with Isabella. We found that if we take her out of her room, she immediately perks up! The Pediatric department provides some red wagons, and we put her in one and just took a stroll around the floor. Isabella immediately cheered up and began playing "I Spy" with me. We then went over to a lounge area where Isabella sat up and spoke and even smiled a little. We knew she had grown frustrated sitting in her bed, but we didn't know that just taking her out of her bed would have such a positive impact. We must have walked around that floor a dozen times so it was getting more difficult finding new things to "spy".

At one point, I asked Isabella how many times she wanted to walk around. She held up both hands to indicate 10 times. Keep in mind that before this, she had not used her right hand since the surgery.

In the picture below, we came across a magnetic board with a bunch of letters. She helped me spell out a bunch of words, but as you can see, we had to get creative as we ran out of some common letters. You can also notice that they finally took the big bandage around her head. Amazingly, they only had to shave a strip of hair from her head where they made the incision.

Isabella Gets Some Visitors

Isabella had some visitors stop by, first it was my mom and EJ, then it was Julianne's mom and Annalise. Isabella didn't do well with either visits as she just sat in her bed and moped. We at least thought that seeing her older sister would cheer her up, but that didn't work either, as they just sat in bed and watched TV.

It must be very difficult for Isabella, who has grown extremely frustrated with where she is. She has a bunch of IVs in her and tubes running everywhere, plus she has to constantly take all sorts of yucky tasting medicine. We're trying to keep our spirits up as best as we can, but as some of you may know, Isabella is strong headed - if she doesn't want to do something, she will not do it.

We're hoping that this is just part of an adjustment period and hopefully, she'll liven up soon.