Saturday, October 8, 2011

Saturday Update–Slow, Steady Improvement

First some housecleaning:  You can sign up to receive e-mail updates for the blog over on the right side of the page, but keep in mind these updates only come once a day.  If you’d like to receive updates closer to when I post them, you can “subscribe” to me on Facebook at

Isabella had an even better day today.  She ate and drank a lot more, spoke a ton, and even walked around a bit, which is yet another thing she hadn’t been doing for a couple days.  Although she continued to have headaches early in the day, she did not require as much morphine today as she did yesterday, so hopefully this means that the pressure is steadily being relieved in her head.

She also had a bunch of visitors as her brother and sister and all grandparents came by to visit for the day.  We tried to get her to take a nap before they got here, but she didn’t.  It didn’t matter though, because she made it through the day with them, which included watching movies and playing in the playroom. 

We also don’t know when we’ll be going home yet,  although we’re pretty sure it won’t be on Sunday.  Due to the high doses of steroids she is receiving to relieve the pressure in her head, we can’t just suddenly stop the steroids all of a sudden.  She will need to be weaned off them over time.  But before then, our doctors will need to evaluate her to make sure that she is headed in the right direction before they let us go home.  In my not-so-professional opinion, she is headed in the right direction, so hopefully we can go home early next week.

Before I let you go, here is a picture of Isabella with Annalise and Nathaniel catching Isabella doing what she hasn’t been doing a lot lately – smiling!  The kids were watching a movie and would not cooperate , that is until I offered them each a dollar to smile for the picture!

Isabella has some special visitors in the hospital!

Quick Friday Update

Today was a relatively quiet day compared to yesterday. Isabella woke up around 5am complaining of another headache so they gave her a dose of morphine which allowed her to get back to sleep. During the course of the day, she continued to have more headaches and got more morphine which pretty much knocked her out for most of the day. At one point, she did wake up and was fully engaged with her grandparents who had come down to visit. But she was only engaged for about 20 minutes before going back to sleep exhausted. Around 7pm, Isabella woke up and again was more talkative. Now when I say she's talkative, I mean she'll say a few words at a time, or a complete sentence, but it's not like she is carrying on a conversation. Even so, this is way better than she was even yesterday when she could only manage grunts and cries. What this does show is that the steroids may be helping to reduce some of the pressure from the speech areas in her brain which is allowing her to speak again. Although we are encouraged by the progress, we are still very concerned, especially since she is still complaining of the headaches, so we will continue with the steroids for a couple more days.

Another encouraging sign is that Isabella drank really well today and ate her first real food for the first time in two days when she ate part of a tuna fish sandwich. We were really concerned that her eating and swallowing were being affected by the tumor, but she was able to eat with no problems. We hope that this trend continues so she builds up her energy and strength. We also hope that we won't need to have her use a feeding tube.

So that's it for today, a relatively modest update compared to yesterday's epic saga. On Saturday, Isabella will have her siblings come and visit which always perks her up.

Have a great weekend everyone.

Friday, October 7, 2011

End of a Loooong Day

It's well past 1am now, and thankfully, Isabella is resting comfortably in her hospital bed now. But the start of the day, and the past couple days had been much more stressful. It all started on Monday when we got a call from her school that she complained of a headache. We thought it was odd, but we noticed no other symptoms. But on Tuesday, she was only able to manage to get single words out instead of full sentences. On Wednesday, she couldn't speak at all, and cried constantly at the frustration of not being able to communicate. She also didn't eat dinner, then threw up during the evening. We contacted Isabella's oncologist who said she would schedule an MRI for Friday, then we would start some chemo treatment shortly thereafter. This made us feel a bit better since at least we were going to be doing something.

I stayed home from work on Thursday because we had a meeting at Isabella's school in the late morning to go over some special therapies she needs. Isabella did not have a good sleep Wednesday night, and because she was feeling pretty cruddy, we thought we'd keep her home on Thursday. Since Isabella couldn't speak, we installed an app on the iPad that allowed her to point to pictures and words to allow her to communicate with us. One of Isabella's other symptoms is that in addition to not being able to speak, she was having difficulty eating. We were extremely worried that Isabella would get even weaker if she didn't or couldn't eat anything. So, in the morning, we decided that after our meeting at the school, we'd take Isabella in to the children's clinic in NYC, where she could get some fluids and figure out what to do about her eating. One of the options is to give her a feeding tube, which is a tube that goes up her nose and down to her stomach through which nutritional supplements would be fed. It doesn't look pretty, but it's an option we'd consider once we met with our oncologist.

But during the course of the morning, Isabella seemed to grow worse. She would constantly cry and complained about her head hurting, which made us worry even more. We decided to cancel the meeting with the school and headed right into New York to have her looked at. We hoped that getting some fluids in her might make her feel better. On our way in, our doctor called us and said that she arranged to have an emergency MRI ASAP, so we drove right to the MRI at NYU. We would go meet with our doctor at the clinic afterwards. This got me anxious right away because I knew that one way or another, we were going to find out what was going on. While we were sitting in the waiting area, Isabella would slip between sleeping and waking up complaining of a headache. I had horrible flashbacks to that night almost 3 years ago when we had the MRI in the same location and sitting in the same seats where a surgeon sat next to us and said he had to remove a 10cm tumor from Isabella's head. Julianne accompanied Isabella into the MRI as I stayed back in the waiting area. When they finally came out, I nervously asked Julianne, "Is that it? Can we go to the clinic?". "Yes," she replied and smiled because she was thinking the same thing as me. If they had seen something drastically wrong, they would have kept us there to discuss a possible surgery or at least be admitted to the hospital. But they let us go and we walked the few blocks to the clinic.

We finally got to the clinic around 2:30 or 3:00. They immediately got us into a treatment bed where they gave Isabella some fluids and Tylenol to help relieve her headache. They were ready to give some morphine if necessary but we were going to see if the Tylenol was enough. At some point, our doctor came in and asked us if we wanted to look at the scans. I immediately didn't get a good feeling, since the last time we had an emergency scan in June, the first thing she said when she saw us was that everything looked stable. Today, she definitely had a more urgent feel. When we went into the room, Isabella's scans were up on the monitor, and one by one, she went through and compared today's slides with June's slides and pointed all the areas of tumor that were noticeably larger. She showed us areas where there appeared to be intracranial bleeding that was being caused by the tumor taking over critical blood vessels. She showed us where the midline of the brain was shifting due to pressure caused by the bleeding. It was this pressure and shifting that was causing Isabella's headaches and preventing her from being able to speak properly.

As she went through each slide, I felt a giant wave of nausea overcome me as I broke into a cold sweat. For a while, I was suddenly a hundred miles away, looking in, as Julianne burst into tears as she asked some questions. How could this be? Isabella was doing so well. Just on Saturday, she took a swim lesson which she proclaimed was "awesome!". I closed my eyes and rubbed my head as I felt my own head start throbbing. We were wondering what our options were and how much time was left? Julianne called her parents to relay the grim news and they immediately started their five hour drive from Vermont. I called Annalise who was just getting out of school to tell her the news, as well as my mother and brother. We began talking about last rites, Hospice care, and funeral arrangements - all things we were hoping not to discuss for a long time. Our doctor had spoken to the neurosurgeon who first operated on Isabella and he felt that she was not a candidate for surgery. That was greatly disappointing to us because this neurosurgeon is one of the best and most aggressive in the world, and if he didn't want a piece of this, then no one would. But although surgery was off the table, not all other treatments (such as chemotherapy) were. But still, we wondered what was next?

Our doctor simplified everything by telling us that we needed to get Isabella stable and comfortable. In addition to the fluids and tylenol, they gave Isabella some steroids, which are used to reduce the swelling and pressure in her brain. It seemed to help a little because Isabella was able to sleep for a little while without waking up because of a headache. We would need to be admitted to the main hospital at NYU so that they could give her steroids at regular intervals for a least a couple days and observe her. We would worry about the tumor afterwards.

We finally got settled into our hospital room around 5:30 or 6:00. What was really nice, but really unsettling was how urgently the nurses were treating us. They're normally really great and responsive when we came in for chemo cycles, but today, they were super attentive and responsive. It's like they knew things were serious this time. We were also originally put into a double room with a roommate, but as soon as a single freed up, they moved us right over. Again, it's nice to get the special attention, but at the same time, it's kinda scary, knowing that they must have seen our situation dozens of times before.

Isabella slept for a couple hours and woke up around 8:30. She said, "I have to go to the bathroom." Julianne and I looked at each other in shock because this was her first complete sentence in a couple days. "OK!" we said and whisked her off to the bathroom. At another point, she walked on her own from the bathroom to her bed, which was another remarkable sign that perhaps the steroids were working to relieve some pressure. Although her appetite is not back yet, she did manage to gobble down two potato chips, which was the first things she ate in over 24 hours. We do expect her appetite to increase since one of the side effects of steroids is an increased appetite.

Finally, I do want to mention the tremendous support that we've gotten not just on this occasion, but over the past three years. Within minutes of my last post, Facebook immediately started hopping with prayers for Isabella requests. I know it may be just a simple gesture, but it does mean a lot to our family. We're still not out of the woods just yet, and even if the steroids do their thing, we still have to contend with controlling the bleeding and the tumor growth.

So when I first started writing this post, it was a little after 1am. It is now after 3 am, and as I mentioned, Isabella is resting comfortably. I thank you for allowing me to share our day with you.

Thursday, October 6, 2011

Worst Update Yet

Today, an MRI of Isabella showed the tumor is bleeding in her brain. On top of that the tumor has grown and together this is causing severe pressure on her brain. This pressure manifested itself over the last couple of days with Isabella having headaches and losing the ability to speak. We are currently back in the hospital (NYU Medical Center) where they are administering steroids to try to relieve the pressure. At this point, they are just trying to make her comfortable and watching her to see how she reacts to the steroids.

Right now, we have no idea if and when we'll be able to take Isabella home. This has hit Julianne and me pretty hard, since it came on all of a sudden over the last couple days. They haven't pulled all treatments off the table yet, but we think we're getting pretty close to that point. We are making plans for last rites. We are also limiting visitors, so please don't feel slighted if you can't visit. We're trying to do what's best for Isabella.

Wednesday, October 5, 2011

Not an Easy Update

It's been over a month since my last post. Since my last post, a lot has gone on, including Isabella's first day of school. She's now in third grade. We also went through another Childhood Cancer Awareness month, with just about as little publicity as previous years, aside from maybe a couple more commercials. I wish I could say that my lack of posting was just a metaphorical representation of the sad state of pediatric cancer awareness, but it wasn't. I wanted to post some stuff, but just couldn't bring myself to it.

We have not gone through any more treatments with Isabella. After the last round of high dose chemotherapy two months ago, she took a bit longer for her counts to recover. Because she had not shown any noticeable improvements, we decided that we needed a change in strategy. At that point, the risk/reward factor for the chemotherapy was just not worth it, since the chemo could end up killing her.

We met with our oncologist at NYU and with the head of pediatric oncology at Tufts (who was formerly the head of pediatric neuro oncology at MD Anderson) to try and develop some alternate plans. These plans involved using different drugs and different dosages. For instance, instead of doing a high dose of chemo every 4-6 weeks, do lower doses constantly. These strategies are mainly used for low grade tumors, which have different characteristics than high grade tumors, which Isabella has. But at this point, there aren't a heck of a lot of options.

To make matters worse, Isabella's symptoms have grown sharply worse over the course of the last few days. Physically she is weaker and her speech is limited to just a couple words at a time now. I am anxious to start any treatment, but I am absolutely petrified to have another MRI done at this point for fear of seeing a dramatic progression of the tumor. Now Isabella has done this a couple times over the past year or so where she shows weakness but then gets better, but I don't know - I just don't have a good feeling about this.

I do know that many people out there continue to pray for us and keep us in their thoughts. We certainly do appreciate that fact as we continue this extremely stressful ordeal.