Saturday, November 29, 2008

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.

Friday, November 28, 2008

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....

Thursday, November 27, 2008

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.

Wednesday, November 26, 2008

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.

Tuesday, November 25, 2008

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!

Monday, November 24, 2008

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.

Sunday, November 23, 2008

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!