We're Home!

We just got home from the hospital. Isabella couldn't stop smiling the whole ride home, she was so excited. When we got home, her brother and sister were also excited to see her. Nathaniel kept pointing to her and saying something (we think it was "Bella").

Coming Home!

Our string of bad luck continues as a noreaster is going through New
England trying to prevent us from taking Isabella home for the day,
but we're determined! I'm sitting outside the hospital now and
Julianne is bringing Isabella down and we'll be heading home. This
will be her first time being outside in over a month. Isabella will be
able to see the several inches of snow we got in the last few days,
our Christmas tree, Cleo our cat, and her fishes.

We'll be bringing her back early tonight, so we don't have much
planned for the day except a lot of sitting around and relaxing.
She'll be coming home again in a few days for Christmas. We should
have some pics posted later.

First Cycle Complete!

We just finished giving Isabella her last dose of Temodar and she really didn't make it easy. She threw up the first batch that she got, and fortunately, the hospital pharmacy was able to make her a second batch. With lots of patience and water, we were finally able to give her the entire batch with small squirts from the syringe (approximately 0.25 to 0.5 cc's per squirt). We had started with the first batch at 9:20 PM and she took the last squirt at 11:00 PM.

Earlier, they gave her the vincristine, and that went uneventfully as they just pushed it through the port in her chest. They also removed the access from the port, so she no longer has any tubes dangling from her. They'll have to re-access the port next week when she has another vincristine dose.

So round 1 is complete and we just hope that these drugs are doing what they have to be doing and that whatever is left of the tumor is reacting to the drugs.

We also just found out from the attending physician that they will allow Isabella to come home on a day pass on Sunday! We can't wait to have her home, even if it will just be for a day.

Things I Miss (Daddy Version)

I miss...

...coming home off the train and having the kids race over to see who could give me a hug first.

...going to Friendly's and "helping" the kids finish their desserts.

...sleeping in on Saturday mornings, only to wake up being crowded out of bed by all 3 kids (and the cat!).

...doing a triple-piggy-back with Annalise on my back, Isabella on Annalise's back, and Nathaniel on Isabella's back.


...finding Isabella sleeping in unique, precarious positions all over the house. My favorite is still when she fell asleep in bed with a book on her face!

...wrangling up the kids to go shopping at Costco or the mall. Of course, once we get to Costco, filling up on all the food samples.

...doing our "home-run handshake" whenever anyone on the Yankees hit a home run.

...going to Dave and Busters and spending $20 to win tickets on the arcade games. Annalise and Isabella would then spend 30 minutes trying to pick out a prize worth $0.50.

...being a good, ol' regular boring family...

Almost Done With This Cycle

Isabella had some problems taking the Temodar medication. This portion of the chemo is given orally, normally by capsule, but since Isabella can't swallow the capsule whole, they need to open it and dissolve it in water. Isabella had problems taking the medicine because it tasted so bad and she ended up gagging on it and vomiting it back up.

For the cycle, Isabella is supposed to take Temodar once a day for 5 days. She took it fine on Day 1 and 2 (Saturday and Sunday), but threw up Day 3 (Monday) and Day 4 (Tuesday). Since she basically missed the Day 3 and 4 doses, they decided to extend the cycle for two days to make up for it. Last night, Julianne discovered that if we put a couple drops of flavoring in the medicine and give Isabella a lollipop to suck on after taking the medicine, then Isabella is less likely to throw it up. It's been working fine so far since Isabella has been able to take Day 3 on Wednesday and Day 4 today and keep it down. She has one more day of Temodar on Friday and will be done with it until next month.

She also has two more doses of vincristine scheduled for this Friday and next Friday, but this is given intravenously so she shouldn't have any problems taking this. Just for completion's sake, the other medication that's part of the cycle is called carboplatin, and that is administered via IV drip over 4 hours on Day 1 and Day 2 of the cycle, so Isabella is done with that one for now.

Isabella has also been tranfered back to Rusk and just like before, immediately perked up and began playing with her friends again. She should begin her therapy sessions on Friday.

*** IMPORTANT ****

One of the side effects of the chemotherapy is that it reduces your white blood cell count which makes it harder for your body to fight off infections. Isabella's blood count has already dropped dramatically and she will soon begin receiving medication that will help her regenerate her white blood cells. So, not only does that mean that Isabella can't have visitors, but we also need to limit the visitors at our house to make sure that Julianne or myself do not get sick. So please call before dropping by and if you are sick or may even remotely be sick, please postpone your visit until you are sure you are not sick. They expect her blood count to be back to normal within a couple weeks.

Things I Miss

I read somewhere recently that after something so devastating as a cancer diagnosis, people learn to truly appreciate the small things in life. How true this is! Before Isabella’s hospitalization, I would have said, “Yeah, yeah . . .” But now I long for all those little moments.

I miss the constant commotion at home: the kids running after each other, dancing or singing with their shows, arguing over whose turn it was to play with Nathaniel, etc. Now there’s a different kind of commotion – extended family members coming and going trying to keep Annalise and Nathaniel taken care of and entertained, trying to keep everything at home in order, trying to plan who should do what for the next day.

I miss the “stressful” commute home from work: racing from the office to get Annalise and Isabella from the afterschool program just in the knick of time, throwing them in the car and racing down to Stamford to pick Nathaniel up at Lola’s house. We wouldn’t get home until 7PM, but one of my favorite times was sitting in traffic, singing the girls’ favorite songs with them over and over again. (Thank goodness for Sirius radio record and repeat!)

I miss the weekly trips to the library, desperately trying to find Annalise a new series of books to be interested in, while trying to keep an eye on Isabella in the beginning-reader book room, and running after Nathaniel as he grabs books off the shelves and makes a run for the stairs.

I miss our bedtime routine, including the girls’ last-ditch delay efforts requesting one last drink of water, one more back scratch, one more tuck in, and one more hug and kiss.

I miss sleeping in on Saturday mornings, only to wake up being crowded out of bed by all 3 kids (and the cat!).

All of those little things I used to complain about – I would give anything to have them back if that was all I had to worry about.

Not Such A Happy Monday

Isabella had a slight complication on Sunday and the doctors wanted to keep her another day in the Pediatric Unit. Isabella checked out fine medically this afternoon and we are trying to get back to Rusk as soon as we can. Hopefully, we can get back on Tuesday.

Isabella is also starting to feel a little nauseous from the medication. Her appetite is getting slightly affected and her digestion may also be starting to get affected. She also had the 3rd of 5 daily doses of Temodar. This is the only one given orally, instead of through her port, and unfortunately, she vomited both times they tried to give it to her, so they gave up and we will see how this affects this cycle of treatments. Hopefully, she will be able to take the medication tomorrow without vomiting.

Touching Moments

Isabella wrote a letter today:
“Dear family, when are you going to come and see me? I hope you come soon. (Heart, heart, heart) Isabella.”

The letter is really meant for her sister and brother. It was heartbreaking to read this, but it’s really difficult for Annalise and Nathaniel to visit more often. They were just here yesterday, but it’ll be another week before they are likely to visit again. Weekends seem like the only reasonable time to drag everyone in on the train and not feel guilty about getting home so late.

Tonight she asked when she was going to go home. I gave her the usual answer, “When your right arm and leg start working better.” Then I reminded her that we’re supposed to go back to rehab tomorrow morning. When she said, “That’s what I meant,” I realized that she’s now calling Rusk home.

First Cycle of Chemo

Isabella sailed through her first cycle of chemo. She had a dose of vincristine IV push, then a carboplatin infusion over 4 hours both days. For 5 days she’ll also take an oral med, Temodar, that has to be on an empty stomach, can only be crushed and mixed with water, and reportedly tastes horrible. She complains and cries about the oral med, but does take it because I’ve told her how important it is in helping her get better. She’s scheduled to get another dose of vincristine on days 7 and 14 as an outpatient.

Her only complaint was a tummy ache at times. And she really didn’t eat very well on the second day. But at least there was no vomiting. The doctor said in about 2-3 weeks we’ll start to notice some hair falling out, and then it all comes out within a couple of days. I haven’t warned her about it yet – I’m not sure how she’s going to react. (She might not mind - no more crying about combing out the tangles every morning for a while! And I can pull out some really cute hats that I have collected through the years if she wants.)

She really is used to hospital stuff at this point. When the nursing assistants come in, she offers them her arm for a blood pressure check, and then holds her hair aside for them when they check her temp (they use a temporal artery gauge). Her port is no longer so sore, and she even lifts up her shirt to help the nurse check to see if it flushes correctly in a nice, matter-of-fact way. Wow, all of this from a kid who used to refuse to take Tylenol!

She seemed to do well with the inpatient stay this time, too. She spent most of the morning in the playroom. A group “Bryan’s Dream” donated gifts to the kids today and she got this gorgeous soft yellow and orange flowered blanket. She was so happy with it that she had it wrapped around herself most of the evening while we watched TV.

So far, so good

Julianne has a couple blogs to upload later, but I just wanted to give a quick update. Isabella received a couple rounds of chemo over the weekend. So far, we haven't seen any noticable side effects. She has a couple more medications to take for three days. We're hoping to get back to Rusk (the rehab building) on Monday so that she can continue with her physical therapy. More later....

Chemo Begins

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.

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.

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.

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!

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.

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.

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.

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.