Friday, November 21, 2008

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.

Thursday, November 20, 2008

The Followup MRI Results

We were hoping that the followup MRI would show what we had hoped: the Dr. Wisoff had extracted all of the brain tumor from Isabella and we would be done with all this. When we reviewed the MRI with Dr. Wisoff, he gave us the good news that Isabella's brain was already shifting back to normal and that there was no additional swelling or immediate cause for concern. Unfortunately, he saw some areas where he believed the tumor had infiltrated Isabella's brain stem that needed further testing.

This was not good.

Dr. Wisoff initially thought that the malignant tumor was either a PNET or a glioma. Neither have a very good prognosis, but the PNET can be treated using chemotherapy with success rates from 60 to 80%. On the other hand, a glioma may or may not be treatable and the patient usually only lives for another year or so.

Initial tests on the tumor ruled out a PNET, which caused our hopes to sink even more. Dr. Wisoff suggested that we not worry about it until we know for sure, but it's extremely difficult to function knowing how dire the outlook is. I guess the best we can do is savor every minute we have and still hope for the best.

Wednesday, November 19, 2008

The Day After

They say that children recover amazingly well from surgery compared to adults. We were fully expecting Isabella to be intubated for a few days and for her to be incoherent at best for a few days. But amazingly, Isabella came back from surgery not intubated, and she was pretty lucid the next morning, albeit a bit groggy. The giant bandage around her head looked like a big helmet, with her hair coming out from the top.

The day was pretty quite as Isabella rested in her bed. The only thing we had scheduled was the followup MRI, which we finally did later in the afternoon. Julianne had gone home to see Annalise and Nathaniel, so I was left to be with Isabella while they took her MRI.

Isabella slept through the MRI, which was good so that they wouldn't have to sedate her further to keep still, and she slept most of the day. But sometime in the middle of the night, she woke up and said she was very thirsty. She had been on IV's since she came out of surgery, so this was a big step. Then she said she was hungry and ate a few crackers. We finally got to sleep pretty late on Wednesday night, but all in all, it was a pretty good day.

A Long Day Comes to an End

Dr. Wisoff said the operation should take about 3 hours, and that no news was good news. We ran out and got a quick bite to eat at a local diner. We had left our cell phone numbers in case we needed to run back right away. I'm glad we didn't get any calls, because I know we would have freaked if either of our phones rang. We picked at our meals and tried to eat, but neither of us had much of an apettite. It was a cold night and we walked back quickly to the hospital.

We got back and waited in the Pediatric ICU where they would be bringing Isabella after the surgery. 12:30 AM came and went with no word from the O.R. Again, no news was good news. At 1:30 AM, we began to get a little nervous. If Dr. Wisoff was as good as we hoped he was, we figured he was a perfectionist and was making sure he was getting everything. But of course, there was always that feeling of dread in the back of our heads.

Finally, at 2:30 AM, Dr. Wisoff briskly came into the room and announced that he was done. He said that he had gotten everything that he could see and was extremely pleased with the outcome. A huge wave of relief swept over Julianne and me and we thanked him profusely. They were going to close Isabella up and bring her up as soon as they were done. She would have a follow up MRI the following afternoon just to make sure they got everything and that her brain was shifting back in place.

Around 4:00 AM, they finally wheeled Isabella into her room. She had a giant bandage covering her entire, but amazingly, she still had most of her hair. We were never so happy at that moment to see her come through the surgery. In the Pediatric ICU, there is only room for one parent to sleep bedside with the child, so Julianne stayed. I went to the parents lounge, where I finally got to sleep around 5:00 AM.

Tuesday, November 18, 2008

Isabella Goes to the O.R.

By the time I got to NYU at around 7:00 PM, Julianne and Isabella were already in the MRI area. The Physicians Assistant, Kristen, was extremely friendly and helpful and made us feel as comfortable as we possibly could. In addition, the pediatric neuro-anesthesiologist, Dr. Max, was prepping Isabella for the MRI. Dr. Max was instrumental in saving Isabella because he personally ran up to the Operating Room where Dr. Wisoff was in the middle of another procedure and told him that he needed to do Isabella right after his current operation.

Dr. Max felt that based on Isabella's current condition, she was close to herniating her brain stem. Brain stem herniation is when the brain stem separates from the rest of the brain because of swelling or pressure from a tumor and is fatal.

Around 9 PM, we finally met Dr. Wisoff. The MRI had already confirmed that the brain stem had already shifted due to the growth of the tumor. He also felt that the tumor was malignant, meaning it had penetrated good brain tissue. He would be able to remove most of the tumor, but he wouldn't be able to remove any that had penetrated - that would need to treated with either radiation or chemotherapy or both, depending on the type of tumor. Our hearts immediately sank, because up till now, we were hoping that it was a benign tumor that was completely separate from the rest of the brain and could be completely removed. Obviously, the prognosis for a malignant tumor is far more dire than a benign tumor, but at this point, the priority was to remove the bulk of the tumor.

We walked with Dr. Max as he wheeled Isabella up to the Operating Room. Dr. Wisoff estimated the operation to take about 3 hours. Dr. Max reminded us to give Isabella a kiss, then we watched them wheel her through the O.R. doors. It was 9:30 PM.

Our Family Picture

We took our last formal family picture more than three years ago, before Nathaniel was born. Because I'm usually behind the camera, we have very few pictures of all of us in the same shot. The last one we have is from Nathaniel's 1st birthday back in August. We had an appointment to take a formal portrait this Saturday, November 22. Julianne had found a perfect set of dresses for the girls and a matching suit for Nathaniel. She made me get a haircut exactly 2 weeks ago so that my hair would be the perfect length for the picture.

It was apparent that we wouldn't be able to make our family portrait appointment on Saturday, so we were hoping to maybe take a quick snapshot with our digital camera before they operated on Isabella. We were fully expecting them to shave her head, so we wanted to take this opportunity to take a picture with her beautiful hair intact. As we were preparing to transport Isabella down to NYU so we can treat the tumor in her head, I was putting together a list of items to pick up from home. As Julianne was riding with Isabella in the ambulance, I would pick up the kids at home (my mom and Julianne's mom, who had just come down from Vermont, were watching the kids), pick up all our clothes, and bring everything down to NYU. Hopefully, by the time they got to NYU, Isabella would be lucid enough so that we could take a picture.

Unfortunately, I got a call from Julianne around 5:00 PM after they arrived at NYU. Isabella did not get any better on the ride down, and in fact vomited more and seemed to be getting worse. There was no way we would be able to take a picture. Instead, I gathered some overnight essentials for us, left the kids at home with the grandmas and headed straight for NYU. The medical staff there was extremely concerned about Isabella's condition and was considering operating on her that night.

Off to New York City

Back in May, I brought Isabella into work with me to New York City. She loved taking the train in and loved staring out the window of my office to count all the yellow taxis. While she was in her delirious state on Monday night, she said to me in a slurred sentence, "I want to go to New York City with you".

Ironically, Isabella would get her wish. Julianne rode down with Isabella in the ambulance from Bridgeport to NYU. The EMTs brought medicine along just in case she seized. They wouldn't be riding with the lights on, but would do so if necessary, and would also stop at a hospital along the way if they had to. Aside from some more vomiting, Julianne and Isabella got to NYU at 4:30.

The Best Decision We Ever Made

I got Annalise on the school bus at 8 AM on Tuesday. My mom and brother had come over late on Monday night after hearing the news and they would watch Nathaniel while I went back to the hospital. I gathered some stuff for Julianne since she hadn't been home since Monday morning.

All the doctors in the Pediatric ICU were having a meeting on Tuesday morning to discuss how Isabella should be treated and I wanted to be there for it. When I got to the hospital at 9:30, Isabella was knocked out since she was up and agitated until 6:30. Julianne told me about one of the best neurosurgeons in the country at Yale, but he apparently wasn't available until later in the week. She also received another call from one of her colleagues of a Dr. Jeff Wisoff at New York University who is also one of the best pediatric neurosurgeons in the country. We felt more and more that we had to take Isabella to Yale or NYU, and not just for the neurosurgeon, but because those places had additional dedicated, specialized staff. For example, while Bridgeport has a general anesthesiologist, Yale and NYU would have pediatric anesthesiologists.

We finally met with Dr. Lipow at around 11:00 AM. He agreed that it would be best to transfer Isabella and suggested NYU where he knew Dr. Wisoff. This was quite a relief as we weren't quite sure how to approach the Bridgeport staff to say that we wanted to transfer. We also thought it was fate since she received the call about Dr. Wisoff just minutes before we met with Dr. Lipow. The Bridgeport nurses contacted NYU and Dr. Wisoff and they agreed to accept Isabella that day. They arranged for a transport team and an ambulance to come from New York to bring Isabella to NYU.

Throughout all this, Isabella remained fast asleep. We suspected it was due to being up all night. However, just before the EMT's arrived to bring Isabella down, she began to vomit. We didn't know it at the time, but Isabella was rapidly growing worse. We also didn't know it at the time, but our decision to send Isabella down to NYU saved her life.

Monday, November 17, 2008

What Do We Do Next?

After the MRI, we brought Isabella up to the Pediatric ICU at Bridgeport Hospital. In addition to the sedative, they had given her a steroid to decrease the swelling and pressure in her head. The drugs that they had given her had caused her to become delirious and agitated. The doctors had wanted to get a second MRI so they can better determine how best to remove the tumor, but unfortunately, Isabella would not be able to lay still long enough. So the plan was to continue the steroid pressure to relieve the pressure and do a second MRI in the morning.

In the meantime, we were already making calls all over for referrals (by this time, it was 8 PM or so). We wanted the best treatment for Isabella and felt we had to go somewhere else, perhaps Yale or somewhere in New York City. Julianne's mom called people up at the University of Vermont where she works and where Julianne graduated from Med School. Julianne also called her boss to get some referrals from the Yale. In addition, the word was already going around the hospital on our situation, and since Julianne worked in the hospital, she was receiving calls from other doctors.

Julianne stayed with Isabella overnight, while I went home with Annalise and Nathaniel to get ready for the next day. Isabella had a long night of delirious visions and she said she saw everything from her classmates to Santa Claus. She finally fell asleep at 6:30 AM on Tuesday.

Our Life Changes

At around 5:30 PM, on Monday, November 17, our lives changed drastically and forever.

I was sitting in the Emergency Room of Bridgeport Hospital. A doctor whose name I can't remember came into the room where I was waiting with Annalise and Nathaniel and said, "They found a mass in her brain." It was like somebody punched me in the stomach. The doctor continued to talk, but I didn't hear a thing. Inside my little Isabella's head, there was a tumor growing and if left there, would kill her.

Up in the MRI room, Julianne was sitting with Isabella. We had already suspected that it was neurological in nature. As the MRI scan ran, Julianne comforted Isabella as she lay in the giant machine that was making loud noises. Julianne peeked over at the technicians sitting behind the glass and was immediately devastated by what she saw. As the images of Isabella's head came into view, looks of horror ran across every one of their faces. Julianne herself would not look at the images, but she knew this wasn't good.

The MRI scan found a massive tumor in Isabella's head. It was 10 cm x 7 cm and had replaced her entire left temporal lobe. It had already begun to affect her, as she had been complaining of headaches and just over the weekend, we noticed tremors in her right hand. The tremors affected her so much, that Isabella had started using her left hand for her primary activity including writing and eating.

The remainder of this blog will describe what happened over the course of the next days as our family now deals with the worst scenario that we can imagine.

Growing Concern

I got up early and was at work by 7:30 on Monday so I can get a headstart to the day. But I couldn't get anything done, as I had this bad feeling about Isabella. I googled children, headaches and tremors and none of the hits brought up anything good. Julianne called me shortly after she dropped the kids off at school. She talked with Isabella's teacher who did mention that she just noticed some strange behavior from Isabella just on Friday. Mrs. Stelly brought out some of Isabella's writing samples and up till last week, her handwriting was typical. But on Friday, you could see a noticable change in her handwriting as it was much lighter and much shakier. Mrs. Stelly thought nothing of it at the time, because she thought Isabella may have been sick. She even mentioned that Isabella had been swinging on the monkey bars earlier in the week.

At 9:30, Mrs. Stelly called Julianne because Isabella complained of a headache and had started to walk funny. We had an appointment with the pediatrician at 1 PM, but Julianne wanted to get her in right away. She gave me a call to update me from the doctors office. The doctors suggested that we immediately go to the Emergency Room to have an MRI done. Julianne took Isabella up to Bridgeport Hospital. I made plans to jump on the next train home to pick up Annalise so we can meet up with them in Bridgeport.

When we all finally met up in the Bridgeport E.R., you would never had guessed that Isabella was sick. She was running around with her brother and sister, laughing, and playing. At around 3:30, they came by to give Isabella a small sedative so that she would sit still for the MRI. We even played a game to see who could sit still the longest. At around 4:15, they came by and said they were ready to take her up to the MRI. Isabella had calmed down just a bit from the sedative and Julianne said that she should carry her. "I'm not even tired," Isabella said, as she stumbled off the bed and wobbled toward the door, eyes half-way shut.

Julianne carried Isabella out of the room up to the MRI room, and all Annalise, Nathaniel, and I could do was wait.

Sunday, November 16, 2008

A Fun Weekend

The weekend of November 15-16 started off like every other weekend. We all slept in a little later (me even later than the rest). The kids were up watching cartoons as Julianne made them breakfast. When I came downstairs, though, Julianne asked me to look at something peculiar. She asked Isabella to take a sip of water from a cup, and she did so, but with her left hand. We then asked her to take a sip with her right hand and she did, but this time, her right hand trembled a little as she took a sip.

Julianne also pointed out that Isabella was coloring and writing with her left hand. Odd, we thought, because she was always a righty, and even stranger was that her handwriting was actually pretty good with her left hand. We made note of it and scheduled an appointment with the pediatrician for Monday morning. We would also talk with Isabella's teacher to see if she noticed anything.

The rest of the weekend was typical, with running errands and working around the yard. I had stayed home with Annalise to rake the leaves while Isabella and Nathaniel ran errands with Julianne. As a reward for being good all weekend, we took the kids to "My Three Sons" which is a children's playplace here in Norwalk. Isabella ran around and showed no signs of anything wrong, except for favoring her left hand. In the picture above, she's riding a toy train and holding her brother to make sure he doesn't fall.

We left relatively early after Annalise and Isabella picked out their prizes. They both had school the next day and had to take a bath and I had to get ready for work. Little did we know that the tumor that was growing inside Isabella's head was about to cause much more damage over the next 24 hours.