Back to the Hospital for More Chemo

After an awesome Father's Day weekend, we are now heading back to NYU for another round of chemo. We are hoping for another uneventful week and should be home on Friday. This would have been Isabella's last week in school, so instead her last day of school for the year was on Friday. Once she's done this week, we'll have the rest of the summer to enjoy.

Big Sigh of Relief

So after two days of being sent home from school for vomiting, we scheduled Isabella for an MRI today. Our doctor must know the immense anxiety that parents go through when awaiting the results, so as soon as she saw us in the waiting to tell us the results, the first thing she said was that everything looked stable. We immediately breathed a sigh of relief then went back to her office to take a closer look at the scans. We were fully expecting to see tumor growth which accounted for Isabella's vomiting. However, it could have been a stomach virus or anything else (we may never know), as long as it wasn't tumor.

In addition, her blood counts are also steadily improving, but not yet at levels to continue with the next round of chemo. We won't start another round until possibly the week after next.

So enjoy your weekend, I know ours will be much more enjoyable now!

Troubling Signs

On Wednesday and Thursday, Isabella vomited at school and was sent home. This is a very troubling sign that may indicate tumor progression. We have an appointment to have an MRI on Friday to see what is going on, but needless to say, Julianne and I are very anxious.

There's not much more to write until we get the results on Friday afternoon.

Updated: Attn: New Jersey Coffee Drinkers!

5/20 - Updated with Pictures Below!

Attention New Jersey coffee drinkers (and anyone in the tri-state area, I guess).  Isabella’s artwork, that was recently on display at a New York City exhibition, is now on display at the Starbucks in Englewood, NJ until May 31.  Her “Rainbow House” is in the back right corner of the café.  The address of Starbucks is:

17 East Palisades Ave.
Englewood, NJ 07631

So while you sit sipping your frappucino, you can brag to your friends that you know that artist!

5/20 – I was able to get to the Starbucks today and saw Isabella’s artwork on display.  It was pretty cool when I walked in and told the people around that Isabella drew the one drawing.  Here are some shots!

Home Sweet Home!

After a relatively uneventful week of chemotherapy, Isabella is now home relaxing in front of the TV.  So far, her appetite hasn’t been affected yet and she hasn’t had any nausea.  She felt good enough to participate in several activities all week.  In previous cycles, she didn’t feel like doing anything during the chemo.  As you can see from the picture below, she felt good enough to at least walk part way from the hospital to Grand Central Terminal.

So our plan is to enjoy the weekend, and potentially go to school next week, depending on how her blood counts are.  Have a great weekend all and enjoy these pictures.

Isabella sits on her food tray to draw on the whiteboard in her room.

Although Isabella’s right leg is still weak and she’s unable to jump very high, she played hopscotch with her physical therapist.

Isabella plays “Sorry!” with a volunteer as her nurse checks the chemo hanging from her IV pole.

Isabella walks with mommy and grandma from the hospital, free from any tubes and poles!  Nathaniel is concentrating on Angry Birds on the iPad.

Another Round of Chemo

So we checked into NYU Medical Center today for another round of chemo.  We are using the same concoction from last month, which Isabella seemed to tolerate fairly well.  Her blood counts recovered relatively quickly compared to the chemo blend from the previous rounds.  This doesn’t necessarily mean the chemo is working less or more, but what it does do is allow us to start another round sooner than we had before.

In the last couple of weeks, we have noticed some signs that Isabella has gotten weaker physically.  This really has us worried because this could mean that the tumor is progressing.  This is why we were glad to get back in sooner rather than later to start the chemo.

So as far as this round is concerned, we should be done and going home on Friday, then we’ll stick to trying to avoid any fevers and infections that would land us back in the hospital.  Sadly, we are so used to being at the hospital that everything is practically routine at this point.  Hopefully, these next few days will fly by and it’ll be Friday before we know it.

A Special Mother’s Day Weekend

In addition to this being Mother’s Day weekend, Isabella had her first communion today.  We’ll be sure to enjoy the remainder of this weekend since we’ll start another round of chemo on Monday.

So to all you mothers out there, enjoy your day!

“Isabella” Top Name for Baby Girls in 2010

Maybe this will generate more traffic to the web site.  Isabella actually owns two of the top three names on the list.  I believe that would make us trend-setters.

http://today.msnbc.msn.com/id/42912883/ns/today-parenting/

The 2010 baby name list is out, and the
classics are reigning supreme once again. But
new parents are also finding name
inspiration in interesting places, including the
"Teen Mom" reality show, "Twilight" and even
Angelina Jolie's kids.
The Social Security Administration, which
tracks baby names in the U.S., announced the
top baby names of 2010 exclusively on
TODAY. The most popular names for girls
are:

1. Isabella
2. Sophia
3. Emma
4. Olivia
5. Ava
6. Emily

7. Abigail
8. Madison
9. Chloe
10. Mia
And the top boys' names are:
1. Jacob
2. Ethan
3. Michael
4. Jayden
5. William
6. Alexander
7. Noah
8. Daniel
9. Aiden
10. Anthony

FDA Approves New Medical Device for Form of Brain Cancer

I recently wrote about a new medical device that uses a helmet to send electrical impulses to disrupt tumor cells from spreading.  The device was just approved by the FDA to be used to treat brain cancer in adults, which is usually the first step before they begin testing in pediatric brain cancers.  Although this device doesn’t extend the patient’s life significantly above traditional chemotherapy, the helmet does not have some of the severe side effects such as nausea, vomiting, and neutropenia (low white cell counts leading to infections).  Thanks to all who signed the petition to get this passed.  Here is the press release.

SILVER SPRING, Md., April 15, 2011 /PRNewswire-USNewswire/ -- The U.S. Food and Drug Administration recently approved the NovoTTF-100A System, a new device to treat adults with glioblastoma multiforme (GBM) that recurs or progresses after receiving chemotherapy and radiation therapy.
(Logo: http://photos.prnewswire.com/prnh/20090824/FDALOGO)
Brain tumors are the growth of abnormal cells in the brain tissue. According to the National Cancer Institute, each year about 19,000 people in the United States are diagnosed with primary brain cancers. In 2010, there were 13,140 deaths from brain and other nervous system cancers in the United States.
GBM is the most common primary brain cancer. The brain tumor is highly resistant to standard treatments such as surgery, radiation and chemotherapy.
When using the NovoTTF-100A System, a health care professional places electrodes on the surface of the patient's scalp to deliver low-intensity, changing electrical fields called "tumor treatment fields" (TTFs) to the tumor site. The unique shape and electrical characteristics of dividing tumor cells make them susceptible to damage when exposed to TTF, which could stop tumor growth.
The device is portable and can be powered with batteries or plugged into an electrical outlet. Patients can use the device at home, allowing them to continue their normal daily activities.
"Recurrent glioblastoma multiforme is a devastating form of brain cancer that often eludes standard treatments," said Jeffrey Shuren, M.D., J.D., director of the FDA's Center for Devices and Radiological Health. "The agency's approval of the NovoTTF-100A System shows FDA's commitment to innovative new devices that provide patients with other treatment options."
The FDA based its approval of the NovoTTF 100A System on results from a single international clinical study in 237 patients with recurrent GBM or with GBM that hadn't responded to traditional therapy. Patients in the study were randomly assigned to receive either the NovoTTF-100A System or chemotherapy treatment.
The study showed comparable overall survival rates between patients treated with the NovoTTF-100A System and those who underwent chemotherapy.
Patients treated with the NovoTTF-100A System experienced a slightly higher incidence of neurological side effects including convulsions and headaches compared to patients receiving chemotherapy. However, they did not experience the significant side effects associated with chemotherapy, including nausea, anemia, fatigue and serious infections.
A survey of patients in the study suggested an improved quality of life in the NovoTTF-100A recurrent GBM patients compared to patients receiving chemotherapy.
Patients should not use the NovoTTF-100A System if they have an implanted medical device or a skull defect, or have a known sensitivity to conductive hydrogels, such as those used with electrocardiograms. The NovoTTF-100A System is not intended to be used in combination with other cancer treatment. The device should only be used after other treatments have failed.
The NovoTTF-100A System is made by Novocure of Portsmouth, N.H.

Creating Hope Act

There is another bill in Congress that is designed to provide incentives for companies to develop better treatment for rare pediatric diseases such as cancer.  The Creating Hope Act of 2011 (S.606) is described here by the Children’s Brain Tumor Foundation (CBTF).

http://www.cbtf.org/blog/2011/04/11/creating-hope-act

Creating Hope Act

By Erin Puck

Monday, April 11, 2011

Children’s Brain Tumor Foundation is part of the Alliance for Childhood Cancer. TheAlliance provides a forum of national patient advocacy groups as well as medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.

In March through the Alliance, CBTF participated in a cancer advocacy and rally day on the Hill. CBTF shared personal stories and facts related to a pediatric brain tumor diagnosis with lawmakers and discussed the importance of supporting the newly introduced Creating Hope Act of 2011 (S.606). This legislation is intended to encourage drug development for rare pediatric diseases, including cancer. The bill would allow pharmaceutical companies that develop and obtain FDA approval for a new pediatric rare disease drug to receive a voucher, granting speedier FDA review for any of a company’s other drugs in development. Companies would be entitled to sell the “priority review voucher” to another company, resulting in a potential gain of millions of dollars over its initial investment. The proposal has bipartisan support and offers a new incentive for industry to invest in drug development for small markets. Children with cancer are currently treated with drugs developed for adults in the 1950s, ‘60s, and 70s. The priority review voucher proposal offers a new approach to potentially attracting industry investment.

For the Full Text of the bill:  http://thomas.loc.gov/cgi-bin/query/z?c112:S.606:

Orlando Vacation–April 2011

A couple weeks ago, we went down to Florida to get away from the nasty Northeast weather before Isabella’s next chemo cycle.  We had our own house with a pool which we took full advantage of!  We spent a couple days at Sea World and at Universal’s Islands of Adventure.  Below is a quick slideshow of our vacation along with a couple videos.  Enjoy!

 

Orlando Vacation - April 2011 VIEW SLIDE SHOW DOWNLOAD ALL

Here is a tour of our vacation home.

Here we are hanging out in the pool.

Isabella flies on the Pteranadon ride at Islands of Adventures.

We ate with the sharks at Sea World!

Annalise and Isabella feed the stingrays at Sea World.

Feeling Better and Getting Ready to Go Home

Isabella has felt much better today and has actually eaten and drank normally.  When Isabella woke up today, she gobbled up a hash brown, then for lunch, she requested a pizza.  We’re glad they decided to discontinue the one medication that we thought was causing her nausea.  Best of all, she has been able to smile all day!

She also had a busy day, participating in physical therapy (PT), occupational therapy (OT), in house school teacher, and wrote a poem.  As the cherry on top for a busy day, her favorite clown Looney Lenny paid her a personal visit in her room.

So the last of the chemo is hanging now and we’ll be discharged hopefully early tomorrow.  Then, we’ll just be hanging out at home again, and hoping that she doesn’t get a fever.

Rough Start to This Chemo Round

In the previous rounds of chemo, Isabella has done pretty well with the side effects.  She’s had a bit of nausea and general lack of appetite, but hasn’t really had any vomiting.  Those symptoms would subside shortly after we left the hospital.  With the new batch of drugs being used in this round, Isabella unfortunately has been throwing up quite a bit.  They changed things around a little bit yesterday, which seems to have had a positive effect so far as her vomiting has subsided, although she still says she feels dizzy when she stands up.

It was quite a stark contrast to compare Isabella from when we got admitted to the hospital on Monday and after she got her chemo.  When we first got to the hospital, Isabella was in such a good mood, she was literally skipping around the hallways and everyone mentioned how great she looked.  Then, less than half an hour after she got her chemo dose, she started throwing up.  If I haven’t said it before, this chemo stuff, which is basically poison, is some nasty stuff.

But the good news is that we are now halfway through the treatments and we are scheduled to go home on Friday.  I’m hoping the rest of the week goes by uneventfully and we can enjoy some nice weather this weekend.

Hmmm…It’s Been A While

So it’s been a couple weeks since we had an update.  I just realized that because tomorrow, we’re going back into the City to start another round of chemo.  The last couple of weeks haven’t been all boring as we did spend a week in Florida to get away from the horrendous weather here in the Northeast.  I hope to get some pictures up shortly, but as you can imagine, I have many pictures to go through.

Anyway, as I said, Isabella starts another round of chemo tomorrow.  Her blood counts actually took longer than expected to recover, so she had an extra week to spend in school.  The doctors are putting together a different group of drugs in this round to see if we could get a better response.  As I mentioned in a previous post, tumor cells have a tendency to build resistance to chemo so it’s good to mix things up once in a while.

The good news (if there could be good news) is that this round is only expected to last 4 days, a day shorter than the previous cycles, so we should be home on Friday.  But to whet your appetite for our vacation pics, here is a teaser!

Isabella McIcatar

Happy St. Patrick’s Day.  Isabella shows her Irish side by taking a sip of some green milk.  Yummy!

MRI Update

So we went back into the City today to get Isabella’s MRI results.  To cut to the chase, our doctor told us that the MRI “essentially looked stable.”  She mentioned that the radiologist did point out an area that may have progressed (i.e. grew) but she wasn’t overly concerned about it and stated that the difference could be due to the way the MRI takes scans.  An MRI takes scans basically one slice at a time as it moves from the top of the brain to the bottom.  If the scan started off by a millimeter or if Isabella laid down at a slightly different angle, it would be difficult to compare exact sections with previous scans.  Our oncologist also did mention that some areas actually looked better, but again, this could be due to some measuring areas.

In any case, she believes that it is worth it to continue treatment, but maybe this time, mix up the chemo cocktail again since tumors have the ability to grow resistance to certain chemo.  Sure, we would have been ecstatic if the MRI showed a dramatic decrease in tumor size, but at least we didn’t see significant growth which probably would have ended any more chemotherapy.  I don’t want to paint a rosy picture since there is still a lot of tumor present, but this was the next best thing, and we’ll take it and be cautiously optimistic.

Isabella Expresses Herself!

Today, one of Isabella’s drawings that she worked on while at the hospital was on display during the Express Yourself art exhibit.  The exhibit is for children who suffer from chronic or life threatening illnesses the chance to have an outlet.  In addition to art and drawings, children were able to sing, dance, recite poetry, and play instruments.  It was truly inspirational to watch these kids, most of whom have only known suffering for most of their lives, to be able to display their creativity.  Isabella was really excited to see her art work on display.  Here are some pictures.

There were several dozens works of art on display at the exhibit.

Isabella stands proudly beneath her piece of work.

Here is a close-up of Isabella’s work, “The Rainbow House”.

Here’s a shot of when they were showing all the kids’ work as a slideshow to the whole room.

Random Tidbits and a Couple Reminders

On Tuesday, Isabella felt good enough to participate in a field trip at school to see a play.  She couldn’t do a full day at school yet because her blood counts were still low and we had to get a transfusion in the city.  However, we are comfortable that her counts are ok now and we will be sending her to school tomorrow.  You may ask what we’ve been doing for the last couple of weeks with her.  Her school has made accommodations for a home school teacher to visit on a daily basis which has been nice.  But still, Isabella is excited to see her classmates again.

We have an MRI scheduled this Saturday and we should know the results on Monday.  Obviously, it will be an anxious few days this weekend.  However….

If you’re in or around New York, don’t forget that Isabella’s art work will be on display at an art exhibition this Sunday, March 13.  You can see the details in the post below.

Isabella’s Art Work To Be On Display!

Also, if you’d like to donate some gifts or money for her school’s toy drive to benefit NYU’s pediatric care unit, visit this link for the details.

Gifts from the Heart

And finally, I mentioned that Isabella’s hair finally completely fell out.  We also got her a couple new Yankees hats.  Here she is in one of her new hats absorbed with TV which allowed me to snap the picture (notice the Tivo remote in her hand!)

February Update

On Friday, Isabella went into the clinic for a standard blood count.  As expected, Isabella’s white count was zero (meaning she is neutropenic and highly susceptible to infection), and her red cells and platelets were low as well, so they gave her an infusion of both.  Typically, Isabella spikes a fever within a couple days of being neutropenic and we were fully expecting to be back at the hospital by now.  Thankfully we are still home since Isabella has not spiked a fever yet. And not only that, but she’s actually feeling pretty good.  She’s had pretty good energy and her appetite has picked up.

One thing we asked our doctor to do is to prescribe some antibiotics so that we may be able to prevent an infection.  Once Isabella gets an infection, which are accompanied by a fever, then we need to stay at the hospital for a minimum of 5-7 days.  So we’re keeping our fingers crossed that these antibiotics, and frequent hand washing will keep us home until her blood counts recover.

Since Isabella is neutropenic, she will not be going to school, so Charlie will be sitting in her spot.

Finally, Isabella’s giant clump of hair, which had been clinging to her head by just a few strands of hair, finally came off today.  She wouldn’t let me take a picture of her afterwards, so she’s definitely feeling more self conscious about it than the first time she lost her hair, but she definitely hasn’t lost her beautiful smile.

I hope to be able to show that in an upcoming post.

Gifts from the Heart

As you could imagine, it could get pretty boring sitting in a hospital room all day if you don’t have anything to do.  After all, you could only watch so much TV.  Fortunately, the Child Life services at NYU Medical Center provide a myriad of activities to help keep the patients active and stimulated so that the kids don’t get bored.  Many of these activities and games are donated.

Our school’s PTO will be holding a toy/book drive over the next few weeks to donate to the NYU pediatric unit in Isabella’s name.   If you would like to donate something, please review the guidelines below and drop off or send your donation to:

Marvin School
15 Calf Pasture Beach Road
Norwalk, CT 06855

Dear Marvin Families,

Our Marvin PTO and staff are continuing to educate ourselves and support our Marvin families who are dealing with pediatric cancer.  Throughout the next several weeks, we will be having a toy/book drive with donations to be sent to the Pediatric Acute Care Unit at Tisch Hospital of NYU Medical Center in support of Isabella Icatar.  We will be collecting items with the following guidelines:

• All donations must be in original packaging to protect patients from outside germs (no stuffed animals, please).
• Infant and toddler toys like manipulatives, rattles, pop-ups, toys that make sounds, etc.
• Arts and crafts materials including paper, washable markers, crayons, child scissors, colored pencils, glue sticks, craft kits.
• Books for all ages, including board books for toddlers, and activity books.
• Interactive board games, DVDs, audio books.

There is a collection box in the Marvin School office.  If you prefer, we will also accept monetary donations (made out to Marvin PTO) which we will use to purchase special supplies.

Thank you!