A Difficult Year in Review

One year ago, our family was going along our merry way.  Isabella had finished her initial treatments and we had a couple clean MRI scans under our belt.  We were enjoying the summer and everything had just about gone to being normal.  Not the “old” normal from before Isabella’s diagnosis, but the “new” normal, which included nutritional supplements, periodic MRIs, and frequent occupational and physical therapy.

Physically, Isabella was just about back to normal.  Her hair had grown back to a nice thick curly nest and her scar from surgery was buried from sight.  Isabella just finished first grade and a psych evaluation put her right on target for her age, an amazing feat considering how much of her brain is gone and how much school time she missed.

But in the back of the minds of all cancer patient’s parents is the thought of recurrence.  Did she just trip on something from being clumsy or was it something worse?  Did she just jumble words from being tired?  Is that smile a little more crooked than yesterday?

On July 23 last year, we received the worrisome news that a routine MRI scan saw some suspicious spots appear in Isabella’s head.  For the next several weeks, we would go back and forth on whether this was actual tumor or perhaps necrosis (dead cells) caused by radiation.  We made several trips to Philadelphia, Boston, and DC to speak with other doctors to get second and third opinions.

And while we waited, we began to see signs of physical deterioration.  At first, Isabella began having trouble walking as she was no longer able to lift her right foot completely.  Then, her right hand and arm started getting weaker and weaker until it ended up hanging useless at her side.  Then she began speaking funny and drooling more, showing more evidence of neurological issues.

Follow up MRIs not only showed that the spot was growing, but there were new spots that moved to the other side of her head.  The evidence pointed to tumor and the hope of curing a recurrent tumor is infinitesimally small.  We were both physically and emotionally exhausted.  With every event, we thought, would this be her last?  Was this her last birthday, Halloween, Christmas?

Finally, five months after we found the spot, we began multiple rounds of chemotherapy.  We were no longer under any clinical protocols, but we would now basically throw anything at the wall and see what sticks.  We started off with a low dose mixture, but that didn’t seem to have much effect, so we moved to a high dose concoction.  The high dose chemo requires a week long stay at the hospital and would cause nausea and low blood counts.  With low white counts, Isabella would suffer several fevers, which required us to spend another week at the hospital to get treated with antibiotics.  It also made Isabella’s hair fall out again – her beautiful curls giving way to reveal the ugly scar.

But somewhere along the way, Isabella’s symptoms stabilized.  It’s not that they got any better, but they stopped declining at such a rapid pace that had us wondering whether she would live to see Christmas.  Two chemo cycles went by and it was time for another MRI.  Few people can relate to the “scanxiety” that parents feel on the days leading up to an MRI scan, but ours was in full gear.  Thankfully, the scans showed the tumor was stable, so we decided to continue with the chemo.

A person can’t handle too many rounds of this high dose chemo.  At some point, the body will not be able to recover from the poison being injected into the body that not only kills tumor cells, but a lot of other important components, such as the bone marrow that creates the blood components.  Also, at some point, the remaining tumor cells will become resistant to the chemo and either another mixture of drugs will need to be tried or the tumor will continue to grow.

So that brings us to today.

Isabella has a very difficult time walking now because of her severely weakened right foot and leg.  Think of a zombie or a mummy walking, dragging one leg behind them as the other leg walked forward.  We finally ended up getting her a brace for her foot, which has actually helped her walk much better, but her balance is still compromised.  Still, it was a pretty dramatic thing to watch a girl who was running, and hula-hooping, and cha-cha-sliding not be able to walk normally after just a few weeks.

The same goes for Isabella’s right hand and arm.  Although she became a full-fledged lefty after her surgery, she had regained almost all the strength in her right limbs as she was able to do the monkey bars and swing a bat and even swim without a floatie.  But now, her right arm and hand are just about useless.  We work with  her on a daily basis to do exercises and we’ve seen some encouraging signs of strengthening in her arms and legs, but she still needs plenty of assistance with basic tasks such as getting dressed and going to the bathroom.

What’s even more distressing is her decreasing cognitive and verbal skills.  As I mentioned before, a year ago, she was right on track schoolwise, but as the tumor grew, Isabella found it more difficult to concentrate and to form sentences.  We always knew that one of the long term side effects of radiation is decreased cognitive ability, but it hasn’t been easy watching a very bright girl not be able to do simple math anymore.

You’ve heard how some people live paycheck-to-paycheck.  Well, for the last year, we’ve been living cycle-to-cycle.  Everything starts with the first day of chemo when we check into the hospital.  We stay in the hospital for a week as the chemo is administered, then we go home.  For the next couple weeks, Isabella then gets her blood drawn several times to see what her platelet, red counts and white counts are.  In the meantime, she may get transfusions or neupogen shots to help her counts recover.  Once her counts recover, we then start another cycle.  The time for her counts to recover varies from cycle to cycle, which makes any sort of long-term planning impossible.  We can’t plan vacations more than two weeks away, or even simply RSVP to a party because we don’t know where we’ll be in the cycle.

Isabella’s most recent blood work shows her blood counts are back to normal and her doctor is ready to start another round of chemo.  Our dilemma is do we keep doing chemo and for how long?  At some point, the chemo could be what ends up killing her.  But if it is seemingly keeping her stable, what choice do we have?  What other treatments are out there?

I haven’t really posted a lot because frankly, it is difficult to write about certain things.  There are good days and bad days.  I certainly don’t feel like writing on the bad days, and on the good days, I like to enjoy with the rest of the family. The hardest question we get is “How is Isabella doing?”  On the one hand, things may appear stable for now, but brain tumors are like ticking time bombs, waiting to explode.  But the one thing that this whole experience has taught me is to enjoy every day as they come.

Thanks for reading this blog.

A Chance to Help

We’ve all had many opportunities in our lives to help others.  That help may come in many different ways from helping someone open a bottle of ketchup, to helping someone do homework, or helping someone move from one house to another.  Usually, most of our help is offered to people close to us, whether it be family, friends, or other acquaintances.  But it isn’t often that we are given the opportunity to save someone’s life, and it’s probably even rarer to save a complete stranger’s life.

On a couple of occasions, I've posted about the bone marrow donor program (DKMS) and encouraged everyone to become a donor.  Recently, I received the following note from a friend.

Hi Roneil, I wanted to let your family know that I signed up with DKMS back in 2009 when you wrote about the little girl who needed a bone marrow donor. Today I go for a bone marrow blood draw because I have been found to be a potential match for a man with leukemia who needs a transplant. I hope I'll be a match and able to help! I wanted to say Thank You to you for the post, I don't think I would have ever signed up if you hadn't made it so easy. I hope things are going well, and healthy, for you all!! ~Erin

Good luck, Erin.  Even though you’ll be doing all the heavy lifting, I am glad I was able to potentially help save someone.  Hopefully, this note will also inspire others to sign up and become donors.

http://www.dkmsamericas.org/

Home Again

Thankfully, this chemo cycle went with no unexpected issues and we are now all back home.  Isabella is feeling fine so far and has eaten well, with no signs of nausea yet.  Our plan is to take it easy over the weekend, then head back into the City next week for a transfusion.  But now that school is over, we have the rest of the summer to enjoy!

Here are a couple pictures from the week.  It seemed to have a bongo theme…

Gifts from the Heart Update

If you recall, our school held a toy/book drive a couple months back.  “Gifts from the Heart” collected several boxes of toys, book, movies, and arts & crafts.  There was also a significant monetary donation made to the Monkey in My Chair foundation thanks to the money collected from this drive.

The folks that ran the drive timed it so that they could deliver the boxes while Isabella was here at the hospital.  This was especially nice since Isabella got a lot of attention when the giant load of boxes were delivered, and the hospital just completed renovations to the playroom area, so there’s nothing better than having a bunch of new toys to stock it!

We’d like to thank everyone involved in putting the drive together and to everyone who contributed.  Nobody likes being at the hospital, but all of these items will go a long way to helping children like Isabella make the best out of their time there.

Here’s a picture of Isabella standing in front of all the boxes of donated stuff!

Isabella checks out one of the movies that was in the boxes.

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.