Isabella just received the first dose of chemotherapy at 5:10 PM. One of the medications was a straight push through the port, and the other is a 4 hour drip that will finish shortly after 9 PM. Then at 8 or so, a third medication will be given orally. We will do the same thing tomorrow night, then hopefully, go back to rehab at Rusk on Monday.
Here's an inspirational scene from Lord of the Rings and hope that the remaining tumor cells are treated how the orcs are treated.
Saturday, December 13, 2008
Back to the Pediatric Unit
We just got transferred back to the Pediatric Unit, so we will be starting soon. Julianne and I have no idea what to expect. How much nausea will Isabella have? If and when will her hair fall out? The nurse says that everyone reacts differently so we'll just have to wait and see. More in a bit.
Friday, December 12, 2008
Official Official Diagnosis
After further analysis by the neuro-pathologist at St. Jude, he came to the same conclusion as the NYU neuro-pathologist and they completely agree that it is a malignant glioma. We are not even going to bother waiting for the Johns Hopkins pathology results. Isabella is scheduled to begin chemotherapy immediately, tomorrow, Saturday, December 13.
Isabella also had another MRI today and it showed that her brain stem is shifting back to normal (remember that it had been shifted by the original tumor). More importantly, it showed that the remaining tumor cells left in the stem were not growing at any noticeable rate. This is probably one of the first pieces of "good" news we've received since they removed the tumor. If the remaining cells had been growing at a fast rate, it would be a much poorer prognosis.
We're a little disappointed because the rehab doctor said Isabella was doing so well, that he was going to let us take her home on a "day-pass" on Sunday. Since she'll be doing chemo on Saturday and Sunday, she won't be able to go home now. But we are mostly relieved that we definitely now know what we are dealing with and know how we are going to treat it. We will still have many anxious moments over the next several months as we see how the remaining tumor cells react to the chemotherapy.
Isabella also had another MRI today and it showed that her brain stem is shifting back to normal (remember that it had been shifted by the original tumor). More importantly, it showed that the remaining tumor cells left in the stem were not growing at any noticeable rate. This is probably one of the first pieces of "good" news we've received since they removed the tumor. If the remaining cells had been growing at a fast rate, it would be a much poorer prognosis.
We're a little disappointed because the rehab doctor said Isabella was doing so well, that he was going to let us take her home on a "day-pass" on Sunday. Since she'll be doing chemo on Saturday and Sunday, she won't be able to go home now. But we are mostly relieved that we definitely now know what we are dealing with and know how we are going to treat it. We will still have many anxious moments over the next several months as we see how the remaining tumor cells react to the chemotherapy.
Emotional Rollercoaster
I am like a human emotional rollercoaster. You should see me – over the last three weeks, my emotions have changed like the wind.
It is so overwhelming to see my child in distress. I was terrified when Isabella became unresponsive when we first got to NYU. I was relieved to see her wake up from surgery to remove the tumor and speak. (They told us there was a chance that she would not be able to speak.) I was devastated when we found out the tumor was malignant and had spread to an unresectable area in the brainstem. I now feel a little bit better that there is a chance for cure with the Head Start protocol. My emotions vary by the day, sometimes by the hour. Here is just a quick example of how my mood changes.
Maya Manley, the founder of the Making Headway Foundation and a frequent volunteer visitor, came to see me one day in Isabella’s rehab. I was in tears as I told her Isabella’s story. She suggested I talk to one of their therapists. I got a call a couple of days later from the therapist. At the time, Santa had just visited Isabella and given her that precious computer which cheered her up so much. Also, the oncologist had just told me a story of a Connecticut child who had a similar cancer who participated in the protocol and is still recurrence-free 4 years later. So when I spoke to the therapist, I told her I was doing pretty well and didn’t need any help.
Two days later, after sitting with Isabella for 48 hours, watching her lay in bed refusing to cooperate or interact with anyone, I was a mess again. Maya happened to stop by our room, and it was pretty obvious to her what a wreck I was. After going home, and having a break, I returned to see Isabella happily back in rehab. Of course, when the therapist came by to see me, I was doing fine and again told her I didn’t need any help. Maya and the therapist must think they’re each talking to two different people!
It is so overwhelming to see my child in distress. I was terrified when Isabella became unresponsive when we first got to NYU. I was relieved to see her wake up from surgery to remove the tumor and speak. (They told us there was a chance that she would not be able to speak.) I was devastated when we found out the tumor was malignant and had spread to an unresectable area in the brainstem. I now feel a little bit better that there is a chance for cure with the Head Start protocol. My emotions vary by the day, sometimes by the hour. Here is just a quick example of how my mood changes.
Maya Manley, the founder of the Making Headway Foundation and a frequent volunteer visitor, came to see me one day in Isabella’s rehab. I was in tears as I told her Isabella’s story. She suggested I talk to one of their therapists. I got a call a couple of days later from the therapist. At the time, Santa had just visited Isabella and given her that precious computer which cheered her up so much. Also, the oncologist had just told me a story of a Connecticut child who had a similar cancer who participated in the protocol and is still recurrence-free 4 years later. So when I spoke to the therapist, I told her I was doing pretty well and didn’t need any help.
Two days later, after sitting with Isabella for 48 hours, watching her lay in bed refusing to cooperate or interact with anyone, I was a mess again. Maya happened to stop by our room, and it was pretty obvious to her what a wreck I was. After going home, and having a break, I returned to see Isabella happily back in rehab. Of course, when the therapist came by to see me, I was doing fine and again told her I didn’t need any help. Maya and the therapist must think they’re each talking to two different people!
Julianne Will Be Blogging
I told Julianne it is very cathartic to write things down and is very helpful as one of the ways to deal with this tragic event. It really is inspiring and comforting to know how so many people follow the blog and are genuinely interested. Several people have told me that they follow the blog every day. I convinced Julianne to try her hand at writing and she will be contributing to the blog to provide her perspective on everything going on. Up till now, what you have read on the events is based on my interpretation. I think it will be very interesting for everyone to read another point of view.
Wednesday, December 10, 2008
Santa Visits the Hospital
While Isabella was in the Pediatric Unit, Santa Clause made a surprise early visit to the kids. This was one of the few times that Isabella perked up while there, and who wouldn't if they were being given all sorts of gifts? Isabella got a bunch of gifts, but her favorite is a toy laptop that she got (wow, just like daddy!). It plays games and music. The video below shows her dancing to her favorite song on the laptop.
Isabella Back to Rehab
Finally, Isabella was discharged from the Pediatric unit and back to the rehab center at the Rusk Institute. Since we are waiting on confirmation of the second and third opinions, we've decided to postpone the chemotherapy, so there was no reason for her to be in the Pediatric unit. Plus, she was missing precious rehab time that we could be using to strengthen her right side.
Isabella is so glad to be back at Rusk because she was reunited with all the friends that she has made so far. While in Pediatrics, Isabella was very grumpy and would rarely cooperate with anyone which was very frustrating for everyone. She had been there since Friday, when she had the operation to put the port in her chest. Since Friday, Isabella has refused to walk or pretty much do anything until last night, when she finally started to walk around with my assistance. But today, when she went back to Rusk and met up with her friends, she immediately perked up, began smiling, laughing, and dancing. Julianne and I were so relieved because we thought it would take her a few more days to adjust.
Her rehab regimen begins again on Thursday, and hopefully, they could make good progress before we start whatever treatment we decide on. By the way, the pathology report from St. Jude should be back by Thursday, which will either confirm whether the tumor is a glioma (original diagnosis by NYU), or an ependymoma (new diagnosis by St. Jude). Either way, we have sent the required material to Johns Hopkins for a third opinion, in case the first two opinions end up not matching.
Isabella's Song
The song that Shira Weinberger used for the Family Photo slideshow is called "Isabella" by the Terrible Twos. You can find it at Amazon by clicking the link and download it for $1.29 or 5 Pepsi points.
If you didn't hear the song when you first saw the slideshow, I suggest you go back and watch it again and make sure you have your speakers turned up. It's a perfect song to go along with the slideshow.
If you didn't hear the song when you first saw the slideshow, I suggest you go back and watch it again and make sure you have your speakers turned up. It's a perfect song to go along with the slideshow.
Tuesday, December 9, 2008
Frustrations Setting In
It has now been three weeks since we first discovered Isabella's brain tumor, and what started out as a whirlwind has slowed to a frustrating crawl.
First of all, Isabella has been moved three times in the last three weeks (with one more back to rehab later this week). We already know that she has adjustments issues every time she moves to a new place, but she seemed extra frustrated on this last move from Rehab back to the Pediatric floor after her operation to put the port in her chest. She really has not been making much progress with her right hand, and she hasn't tried to walk since the operation since she's been sore. Not to mention that she's lost a few days of rehab because of the operation.
Secondly, the back and forth from Connecticut to New York City is beginning to take its toll. Juliannne and I haven't been together at home for three weeks since one of us has been staying at the hospital every night. We've been eating a lot of New York pizza and cafeteria food. Our parents and in-laws have done a great job keeping things patched together at home, but we feel bad basically neglecting Annalise and Nathaniel.
Finally, it's extremely frustrating to still not be sure what this thing is in Isabella's head and not being able to do anything about it. The delays in getting the pathology results and the second/third opinions is really driving us nuts. But although we do wish we could start treatment, we do want to make sure that we are treating the right thing with the proper method. In a way, it could be a good thing that Isabella had the fever that delayed the chemo, because it allowed us to get the second opinion.
First of all, Isabella has been moved three times in the last three weeks (with one more back to rehab later this week). We already know that she has adjustments issues every time she moves to a new place, but she seemed extra frustrated on this last move from Rehab back to the Pediatric floor after her operation to put the port in her chest. She really has not been making much progress with her right hand, and she hasn't tried to walk since the operation since she's been sore. Not to mention that she's lost a few days of rehab because of the operation.
Secondly, the back and forth from Connecticut to New York City is beginning to take its toll. Juliannne and I haven't been together at home for three weeks since one of us has been staying at the hospital every night. We've been eating a lot of New York pizza and cafeteria food. Our parents and in-laws have done a great job keeping things patched together at home, but we feel bad basically neglecting Annalise and Nathaniel.
Finally, it's extremely frustrating to still not be sure what this thing is in Isabella's head and not being able to do anything about it. The delays in getting the pathology results and the second/third opinions is really driving us nuts. But although we do wish we could start treatment, we do want to make sure that we are treating the right thing with the proper method. In a way, it could be a good thing that Isabella had the fever that delayed the chemo, because it allowed us to get the second opinion.
Monday, December 8, 2008
Official Diagnosis (...or not)
Last week, we received the official diagnosis for Isabella's brain cancer:
Glioneuronal neoplasm with anaplastic features (which is a type of anaplastic astrocytoma)
There is a clinical trial that specifically treats these malignant gliomas in young children, called Head Start (Phase 3). The protocol for this treatment calls for 4-5 cycles of chemotherapy (4 weeks apart), followed by a final week of extremely intensive chemotherapy. That final dose is so severe that Isabella will require a stem cell infusion to assist her recovery since her white blood cell count will end up being very low. If necessary, we will then use radiation to kill any remaining cancer cells. The purpose of this trial is to eliminate or reduce the requirement to use radiation since radiation has several long term side effects affecting intelligence, growth, and motor skills.
Once we received the diagnosis, we sent the MRI slides and pathology results to St. Jude's Children Research Hospital in Tennessee for a second opinion. Today, we received a frantic call from St. Jude's to ask if we've started chemo yet, and we told them no. It was supposed to start today, but was postponed another day because of Isabella's fever. Apparently, the pathologist from St. Jude came up with a different diagnosis:
Vascular ependymoma (most likely anaplastic)
They need to run some more tests to verify it, which will take a few more days. As such, we will be moving Isabella back to the Rehab center so they can continue with her therapy.
Neither diagnosis carries a prognosis that is necessarily better or worse than the other, but this new diagnosis is significant because an ependymoma does not react well to chemotherapy and is instead treated with radiation. Because of this, we will be holding off on chemotherapy for now until we get the final word from St. Jude.
Unfortunately, we will now have to go for a third opinion, most likely to Johns Hopkins. Since the neuro-pathologist at St. Jude is a nationally recognized pathologist, we expect the findings to match with St. Jude.
You may ask how two pathologists can come up with such varying diagnoses? Well although there are roughly 3400 new brain cancer incidents in children every year, the type that Isabella has is extremely rare with about 50 incidents per year. Because of this, not a lot of people have experience diagnosing it.
Glioneuronal neoplasm with anaplastic features (which is a type of anaplastic astrocytoma)
There is a clinical trial that specifically treats these malignant gliomas in young children, called Head Start (Phase 3). The protocol for this treatment calls for 4-5 cycles of chemotherapy (4 weeks apart), followed by a final week of extremely intensive chemotherapy. That final dose is so severe that Isabella will require a stem cell infusion to assist her recovery since her white blood cell count will end up being very low. If necessary, we will then use radiation to kill any remaining cancer cells. The purpose of this trial is to eliminate or reduce the requirement to use radiation since radiation has several long term side effects affecting intelligence, growth, and motor skills.
Once we received the diagnosis, we sent the MRI slides and pathology results to St. Jude's Children Research Hospital in Tennessee for a second opinion. Today, we received a frantic call from St. Jude's to ask if we've started chemo yet, and we told them no. It was supposed to start today, but was postponed another day because of Isabella's fever. Apparently, the pathologist from St. Jude came up with a different diagnosis:
Vascular ependymoma (most likely anaplastic)
They need to run some more tests to verify it, which will take a few more days. As such, we will be moving Isabella back to the Rehab center so they can continue with her therapy.
Neither diagnosis carries a prognosis that is necessarily better or worse than the other, but this new diagnosis is significant because an ependymoma does not react well to chemotherapy and is instead treated with radiation. Because of this, we will be holding off on chemotherapy for now until we get the final word from St. Jude.
Unfortunately, we will now have to go for a third opinion, most likely to Johns Hopkins. Since the neuro-pathologist at St. Jude is a nationally recognized pathologist, we expect the findings to match with St. Jude.
You may ask how two pathologists can come up with such varying diagnoses? Well although there are roughly 3400 new brain cancer incidents in children every year, the type that Isabella has is extremely rare with about 50 incidents per year. Because of this, not a lot of people have experience diagnosing it.
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