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!

Done with Chemo, Going Home Tomorrow

Isabella just finished up her last dose of chemotherapy and we are scheduled to go home tomorrow.  She has started to feel a little nauseous, but hasn’t vomited yet.  She also seems to have been hit by the chemo a little harder this time around and is pretty weak.  We’re hoping that this weakness is due to chemo effects and not tumor progression, but we’ll know for sure at her next MRI.

Another Round of Chemo

Isabella’s blood test today showed that her counts are pretty much recovered and back to normal so we will be starting another round of chemotherapy tomorrow (Tuesday).  Hopefully, we’ll be home on Sunday.

The picture below was taken at our local aquarium.

Need Your Help to Sign a Petition

Last year, I wrote about a new device that uses a helmet to send electrical pulses to kill brain tumor cells.  That device was approved in Europe, but not yet in the US.  That device is now going up for approval to the FDA and they are looking for support from you and me to provide compelling reasons for the FDA to approve.  One of the huge benefits of this device is that it doesn’t have the nasty side effects of chemotherapy, such as vomiting and neutropenia (low blood counts making the patient susceptible to infection and fevers).  FDA approval is one of the steps required for this to be covered by insurance companies.  Currently, the treatment costs $10,000 to $15,000 per month.

The link to the petition, along with some supporting articles is below.  The petition is all online, so besides giving a little bit of information about yourself, shouldn’t take too long.

http://www.virtualtrials.com/activism.cfm

Novocure NovoTTF-100A device is up for FDA approval!

We need you to submit your thoughts on the approval, and help us get a lot of responses!

Al Musella, DPM, President of the Musella Foundation, will be one of the patient representatives giving input to the FDA committee, and needs your permission to speak for you - as well as your thoughts to present as a petition. The more people we can get involved, the more effective our presentation will be.
About the NovoTTF-100A: this is an external device - electrodes are applied to the scalp and plugged into a control panel. (You can cover it with a wig or hat!) The device emits an electromagnetic field that interferes with the ability of the cancer cells to divide. I know it sounds like science fiction, but it has been shown to work on cell cultures, mice and people with cancer. If you already know about the device, skip to the questions way below. Otherwise, please take the time to look through the following articles. We will accept negative comments, but only if you have read these articles first.

http://www.virtualtrials.com/activism.cfm

Back to (the new) Normal

Many cancer families use the term the “new normal” to describe how the everyday things in their lives have changed.  After Isabella finished her radiation treatment and showed a few clean scans, we settled into a “new normal” routine as a family.  We knew we could never go back to the way things were before Isabella’s diagnosis, and we knew we had to make the best of our situation.  This new normal included daily nutritional supplements for Isabella, a vastly overhauled diet for the family (lots more natural and organic food), scheduled occupational and physical therapy, anxiety every time it was time for an MRI, and so on.  And for a few months, it was nice to return to normal, albeit a new normal.

Unfortunately, when Isabella’s cancer returned, we immediately got thrown back into the whirlwind of frequent doctors and hospital visits.  We made several trips to Boston, Washington DC, and Philadelphia for consultations.  We would be at the hospital for a week at a time for chemotherapy or for neutropenic fevers.  We had fallen out of our routine.  Even simple things such as eating dinner as a family became a challenge.

However, for the last week or so, we have been back into a sort of routine.  Since Isabella’s blood counts are still slightly depressed, our doctor has suggested we delay this next round of chemo until next week to give her body more time to recover.  Physically, Isabella is doing great and she’ll be able to finish out this week at school.  I have been able to go to work and actually get into a groove to get stuff done.  So even though it’s just temporary, it has been nice to be back to our new normal.

Enjoy these new pictures!

Isabella reads to a dog at a “Read to Rover” event at the local library.

Isabella takes a sip from her “happy cup”.

Isabella and Roneil play some drums on Rock Band.

Nathaniel (and his chocolate goatee) and Isabella try to give their meanest look for the camera.

And finally, Nathaniel gives Isabella a kiss after she gave him a Valentine’s Day card.

There’s a Monkey In My Chair

Isabella has been in school all week, except of course the two days off because of the snow/ice storms.  But when she is out, her desk does not sit empty.  We found this program called “There’s a Monkey In My Chair” that provides a big stuffed monkey that sits in Isabella’s chair while she is out due to treatment.  “Charlie” participates in the classroom activities, and usually one of the classmates is in charge of taking care of Charlie and reporting back to Isabella.  This allows Isabella to keep in touch with her classmates while she is out.  Some of the reports back to Isabella are really cute:

“Charlie went to art but he did not do anything.  He was a little lazy. But he was listening great.”

“Charlie was a good monkey today.”

“Charlie learned about pennies, nickels, dimes, quarters, and half dollars today.”

“Charlie ate his banana at lunch today.”

“At gym, Charlie didn’t run because he didn’t have shoes.”

Unfortunately, Charlie will have to take Isabella’s place again next week.  Our doctors have suggested that since Isabella did not have any severe reactions during this last cycle and that her neurological symptoms have not gotten noticeably worse, that it would be worth another shot for chemo.  After this round, we’ll do another MRI and see what’s going on in there.  After that, we still have no idea what’s next, but we do know that we can’t do this high dose chemo forever.

But Isabella still has another day of school left for her to enjoy before having to go through the chemo again.

Isabella’s Art Work To Be On Display!

As you can imagine, there’s a lot of sitting around and waiting at the hospital.  During that time, Isabella spends some time drawing.  One of her drawings will be on display in a New York City art show that will exhibit art work from sick children.  The exhibit will be on March 13.  Details in the announcement below.  If you’re in the area, stop on by and meet a famous artist!

http://www.artworksfoundation.org/express.shtml

Express Yourself is a creative and performing art exhibition that features the works of children and young adults suffering from chronic and life-threatening illnesses and their siblings.

Express Yourself provides children with the opportunity to be publicly acknowledged for both their struggles and their strengths. In a safe environment, filled with families, friends, healthcare specialists and art therapy patrons, these children sing, dance, recite poetry, play instruments and stand proudly by their works of art.

The process of preparing for the Express Yourself event provides these children with a much needed creative outlet that serves to reduce their stress and anxiety, decrease attention to their pain and normalize their hospital experience.

The exhibition provides all participants with something to look forward to and work towards, taking the focus away from the pain and sorrow of the illness. The event also provides patients and families with social opportunities to interact with other children and families in similar situations and take comfort in shared experiences.

 
Express Yourself - New York
Sunday, March 13, 2011
Kimmel Center for University Life
New York University
60 Washington Square South
(between La Guardia Place and Thompson Street)
New York, NY 10012
Directions
1:30-5:00 p.m.
Performances begin at 3:00 p.m.
Participating Agencies:

• Bellevue Hospital Center
• Blythedale Children’s Hospital
• Brookdale University Hospital and Medical Center
• The Children's Hospital at Montefiore
• Elizabeth Seton Pediatric Center
• Incarnation Children's Center
• Initiative for Women with Disabilities: Young Women's Program at NYU Hospital for Joint Diseases
• Komansky Center for Children's Health at New York Presbyterian Hospital/Weill Cornell Medical Center
• Maimonides Infants and Children's Hospital of Brooklyn
• The Mount Sinai Kravis Children's Hospital
• New Alternatives for Children
• NYU Hospital for Joint Diseases
• NYU Langone Medical Center
• Raymond Naftali Ambulatory Center
• Steven and Alexandra Cohen Children’s Medical Center of New York

If you are a healthcare agency interested in participating in Express Yourself, please call us at (201) 608-0146.

If you would like to submit artwork or perform in our next show, please call us at (201) 608-0146 or submit a contact form.