Livin' on a Prayer

As we head into the kids' winter vacation, I thought I'd post a quick update.  Isabella's "newest" favorite song is none other than Bon Jovi's "Livin' on a Prayer."  That's pretty funny considering the song came out almost a quarter of a century ago and I was still in high school!  (Boy, I just made myself feel old.) Jon Bon Jovi is still going pretty strong as he was just on an episode of 30 Rock and performed at the Grammy's, playing to Isabella's delight, Livin' on a Prayer! 

Anyway, here is a pretty cool rendition that we saw recently of Livin' on a Prayer by the group Face on the NBC show, The Sing Off.


And if you need to see how original Bon Jovi, here's the original music video.

Another Lost Little Soldier

Last year, I posted about a little girl, Jasmina Amena, who was being treated for leukemia at NYU.  We would sometimes see her and her mother in the hallways of the pediatric unit, but it wasn’t very often since she was always in isolation.  I am sad to report that just this past Wednesday, Jasmina lost her fight against the cancer and died.  It had only been just over a year ago that she was diagnosed.

Her story made headlines in the local newspapers and TV stations and attracted celebrities such as Rihanna and Kelly Rowland who would visit her in the hospital.  In what would be Jasmina’s ultimate dream, she was able to meet President Obama at the White House just this past December.

There were a number of bone marrow drives that were held in her honor and last summer, she received a bone marrow transplant from a near-exact donor match.  Unfortunately, this fall, her cancer returned.  On Monday, she developed pneumonia and quickly deteriorated.  Before passing in her mother’s arms, she said to her, “Mama, it’s ok to cry.”

Jasmina was 6 years old.

You can read her mother’s blog at: http://www.caringbridge.org/visit/jasmina

New York Daily News Article

People.com Article

Official January 2010 MRI Results

Today we had our follow-up visit with Isabella’s oncologist to go over the official MRI results.  On Saturday, she reported to us that her preliminary results by taking a quick look at the MRI showed that everything was still good and stable.  Since then, the radiologist (who specializes at looking at MRIs) was able to look at the results, along with some more detailed tests and reported that everything indeed did look good – not only was there no new tumor, but they now suspect that the areas that they thought were tumor on her last MRI are actually just scar tissue from Isabella’s craniotomy.  So basically, what it boils down to is that although our doctor never actually used the word “clear”, she was extremely happy with the results – she remarked that if she felt there was tumor left, that we would have immediately began planning for her next rounds of treatment.  So reading between the lines there, she obviously believes that Isabella requires no more treatments and we will just continue with the periodic scans.  Because of the scar tissue, MRIs will always show enhancement (enhancement is the term they use to show any abnormality in the scan) so I don’t believe we can ever have a truly “clean” scan – that is, this is probably the best report we can expect.
You may also ask yourself if scar tissue and tumor look the same  on an MRI, how can they tell which is which?  Well one of the additional tests that they ran this time (which they were not able to run last time) is something called a “perfusion” scan.  Perfusion measures the amount of blood flow to the enhanced area of the brain.  Tumors, by their very nature, draw a lot of blood compared to normal brain cells.  Right after Isabella’s surgery, a perfusion scan showed that the tumor cells had 8 times the blood flow compared with the blood flow from the surrounding normal cells.  When Isabella completed her chemotherapy, the perfusion scan showed that the perfusion had dropped to just 2 times.  The perfusion scan from this round showed perfusion at 0.9 to 1 times, or normal blood flow from the enhanced areas.
I know that I’ve been through some emotional highs and lows over the last year, but I think a giant weight was lifted off my shoulders when Julianne finally said she was very happy with the results.   Up until now, knowing the grim statistics for pediatric brain cancer, she had taken the cautiously optimistic approach as not to get too high or too low.
But like I said many times before, we will continue to be vigilant even though we’ve past what we hope is the final finish line.  Julianne says that she will continually keep up to date with any advances in pediatric brain tumor research in case Isabella has a recurrence.  She has also remained active in the online support message boards and has been in contact with several parents of newly diagnosed children. 
Throughout the year, we always talked about how lucky we were with the timing of some of the events and how the stars seemed to align in a way that Isabella got the best possible treatment available.  A few times over the last year, Isabella would say something like “When I’m 10…” or “When I grow up, I want to….” or something similar, and I would smile back to her, but in the back of my mind, it made me extremely sad knowing that she might not ever get that chance.  But now, she has that chance.  I don’t think Isabella will ever know how fortunate she was or is, and honestly I hope she never has to know and she can live a full, normal life.
Thank you all for your incredible support.  It won’t be soon, but I hope that one day I will be able to officially close out this blog and that Isabella’s Fight will be finally over.

January 2010 MRI Preliminary Results

We went in for Isabella’s MRI on Saturday and our oncologist informed us that the preliminary results of the MRI looks like everything is still stable and looking good.  Of course, these results aren’t official until delivered formally by the radiologist, but we were happy to hear that.  In addition, they need to run some more detailed analysis of the scans, and the results of  which we’ll learn next week.  And we’ll go through the worry and anxiety again in three months, but for now, we’re satisfied and we will enjoy our three day weekend!  We hope you enjoy yours!

Post # 200 - Upcoming MRI

It's somehow fitting that the first post of the New Year is also post # 200 - or maybe it isn't.  Who knows? :)  Anyway, this upcoming Saturday, we have our next scheduled MRI for Isabella, with the results expected a few days later.  Of course we would be ecstatic if they told us that the remaining tumor cells have disappeared, but we'll settle for "stable".

We've read from many parents of brain tumor children that they're anxious at every MRI, and we certainly feel it ourselves.  For the next couple years, we'll be doing MRIs every three months, then eventually, it'll be every six months, then eventually after that, it'll be once a year.  You would think that it would be easier doing the MRIs less frequently, but some parents have responded that they actually have increased anxiety when there is more time in between MRIs!  I think I will fall into this camp.  I can't imagine having to wait a whole year to get an MRI - but I guess the bright side of that is that it will mean we are several years out and stable.  And in between each of those MRIs, we'll constantly be scrutinizing Isabella - every twitch, every headache, every ache, and every complaint will certainly have us racing.

By the way, as a reminder, we have been posting all of our family related stuff over on our main home page at http://www.icatar.com/.  You'll be able to see some great pictures and videos of Isabella and her siblings there.  We'll keep all of Isabella's treatment related stuff here.  Thanks for keeping up!

Holiday Update

It’s been over a month since our last update, and now seems to be a good time to send out another update as we head into the holiday season.  Isabella has been doing quite well.  She is doing great in school and continues to make improvements in her occupational therapy.  Medically she is ok.  Her immune system is still weakened from the chemo and radiation treatments, but thankfully, she didn’t catch the flu as it made its rounds through the school and even our household.  Her next MRI will be in January so until then, we’re just going to sit back, relax, and enjoy the holidays.  If you haven’t done so, go to our main family home page to see some great photos and videos of our family.  In the meantime, below are some pictures of Isabella – notice how nicely her hair is filling in!

 

Back to School (Flu-Free Version)

Isabella has been out of the school for the last week since the flu has been running rampant through the school.  Yesterday, she went to work with me and had a great day.  All of the people at work were so happy to see her and she actually came home with a few unexpected gifts and office supplies!  Here she is drawing up a grand plan on my whiteboard at work.

The school also notified us that the absences were back down to normal levels so Isabella was able to go back to school today.  So she had an unexpected mini-vacation and got to go on a bunch of field trips with mommy and daddy.  Not a bad deal!

One Year Later

It was exactly a year ago today when our family embarked on this journey, when Isabella began her fight.  It was a year ago when an MRI revealed a giant tumor in Isabella's head.  I just went back and read the blog entries for the first couple months and am amazed at everything that we actually went through to get where we are today.  I was immediately flooded with emotion and relived the emotional roller coaster that we went through in those first few turbulent weeks.

A year ago, we weren't even sure whether Isabella would live to see another year, but here we are a year later, with Isabella done with all of her treatments and back in school - well, technically, she would be in school if the flu wasn't making its rounds through the school.  Immediately after her surgery, Isabella couldn't even move her right arm and couldn't walk.  Today, even though she has "switched" to become a lefty, she is continually improving and strengthening her right hand and she runs like any normal six year old.

We still don't know what lies in her future, but honestly, we don't know what lies in any of our futures.  If this whole ordeal has taught us anything, it's to be thankful and enjoy each day.  A year ago,we spent Thanksgiving at the hospital and one of my wishes was that a year from then, we would be able to spend Thanksgiving home with Isabella.  I am thankful we will be able to to that this year.

Below are just a few of the pictures that show what an incredible year it has been.
Here is Isabella, immediately after her surgery to remove her brain tumor.

Amazingly, this next picture was taken less than week after Isabella had her surgery.
Since Isabella couldn’t walk for a couple weeks after surgery, she used a wheelchair.  Too bad Nathaniel thought it was also to get him around!
This picture was taken by Shira Weinberger during a photo shoot at the hospital.  Notice how chubby Isabella was!

A few weeks after she started chemotherapy, Isabella’s hair started falling out.  But since most of her hair was in a giant, knotted clump after the surgery, her hair stuck around for a while.

Finally, Isabella’s clump of hair fell out (we still have it somewhere), and she was not affected a bit.

After Isabella completed her chemotherapy, she came home and returned to being a regular kid, taking swim lessons and swinging on the monkey bars.

Here is Isabella at her 6th birthday, and you can see her hair growing back nicely!

Here, Isabella rings the bell at Boston Mass General to signify the end of her proton radiation treatment.

Isabella waits with her brother and sister at the bus stop on her first day of school.  Amazingly, Isabella only missed two days at the beginning of the school year due to the radiation therapy.
Here are Annalise, Nathaniel, and Isabella about to go trick or treating.          

A Disappointing Update

It turns out I was premature in stating that Isabella's last MRI was clean.  After a follow up visit with her oncologist today, she revealed that a more thorough review of the MRI revealed that there is still tumor present. I should point out that this isn't new tumor, so everything is still stable from the last MRIs.  The doctor told us that the tumor may stay as it is now or continue to shrink (or grow).  She has seen cases where a tumor was stable for several months and then after a couple years, just completely disappeared. 

We're obviously disappointed at this news, but it really doesn't change much. We'll continue to do periodic MRIs to track progress and there are no plans for further treatment (chemotherapy or radiation).  We'll continue her occupational therapy to continue strengthening her right hand and improve her balance.  Isabella will go back to school as soon as the flu makes it rounds at the school.

Isabella continues to be a vibrant, energetic child that continues to amaze us on a daily basis.  I don't think she's done amazing us yet.

Flu Update

So Annalise did fine with the flu and went back to school today. Nathaniel had a runny nose and a cough for a couple days last week, but he seems to have made it past everything as well. Isabella never got one symptom. However, their school just reported dozens of kids out today. We had asked them to let us know of any large swings in attendance, and we would then take Isabella out assuming that it was the flu going around. So last week, Annalise was out with the flu, and this week (and for who knows how long), we will keep Isabella home until this flu runs its course through the school.

EVERYBODY, WASH YOUR HANDS!!! :)

The Flu Hits Our Home

Yesterday, Annalise was diagnosed with the flu after spiking a fever.  The doctors do not check to see which strain of the flu it is, but since Annalise already received the vaccine for the seasonal flu, we are assuming that she has the H1N1 flu.  Knowing that Isabella is immuno-comprimised and that children are highly vulnerable to this flu, the doctor immediately prescribed tamiflu to all three children, which they will be taking for the next five days.  It's ironic that someone in our family got the flu first since we've been so cautious about washing hands and staying clear of crowds - we're still not quite sure when Annalise could have been exposed.  So far, no one else in the family is exhibiting any symptoms, but we'll still be taking extreme precautions around the house.

UPDATE, 11/4/09, 10:01pm
Annalise felt a lot better today, but still has to stay home from school for the rest of the week.  Fortunately, Isabella hasn't started showing any symptoms yet.  Nathaniel had been coughing and sneezing earlier in the day, but it seemed to get better over the course of the day, but we're still keeping an eye on him.  Julianne and I haven't felt anything yet, although yesterday, I started to feel a scratchy throat (although I may have just been thirsty...)  I'm still working from home for the rest of the week.  Hopefully, we've seen the worst of everything.

Notes Left Behind

An amazingly touching and gut-wrenching story about a six year old girl who lost her battle with brain cancer.  Original article here.

Elena was almost 6 years old when she was diagnosed with Pediatric Brain Cancer. The doctors told her she had only 135 days to live; she survived 255 days until she lost her battle with cancer.

As her cancer progressed she lost the ability to speak and turned to writing and coloring. She would express herself through little notes to her parents, family members and even pets. After Elena passed away her family began finding notes hidden everywhere: briefcases, books, drawers, shelves, etc. and after awhile the Desserich’s realized that Elena had been planting these notes throughout the house to be found after she was gone.

A year after her family found what they thought to be the last note they found another, in a coloring book. Elena’s parents hope that they never stop finding notes.

In tribute to Elena her family has published a book called, Notes Left Behind, which is a collection of these special notes. Proceeds benefit “The Cure Starts Now”.

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NYC Marathon Complete!

Congratulations to Adlar who completed his first New York City marathon today!  Adlar ran the race in honor of Isabella and we brought the entire family in to show our support.  He ran as part of Fred’s Team, a group of about 700 runners who run to raise funds for Memorial Sloan Kettering cancer research.  He mentioned that one of the highlights of his race was when he  ran by Sloan Kettering and a bunch of the kids were sitting outside cheering on the group.  When we  met up with him afterwards and told him how proud we were of him, he pointed to Isabella and simply responded, “She’s the real trooper.”
Click below to see a slideshow of our trip to NYC and the marathon.  Also, check out the video as Adlar takes a quick break to greet the family.

View Slideshow

NYC Marathon Update

I am very pleased to report that thanks to everyone's tremendous generosity, Adlar was able to reach his fundraising goal for the marathon!  Now all that is left is the actual race on Sunday.

Speaking of the race, you will be able to keep track of Adlar as he makes his way through the five boroughs of New York by visiting the following website:  http://athletetracker.ingnycmarathon.org/ (Please note that this link is not active until November 1.)  At the site, just enter "Adlar Simmons" or bib number 59786 to see where he is during the race.

So again, good luck Adlar and thanks for your thoughtful gesture, and thanks to everyone who donated.

Almost Time to Run!

We are now less than a week away from the New York City marathon and my cousin Adlar is extremely excited to be running. The last time we spoke, he had just done a 20 mile run to prepare and he said that he felt pretty good and ready for the real thing. The race will be on Sunday, November 1. You can find more information about the race at the NYC Marathon home page.

Adlar is also very close to reaching his fund raising goal, so if you haven't already donated, please take a minute now and follow the links over to the right in the Fred's Team section. The fund raising will go to cancer research at Memorial Sloan Kettering in New York City.

We all plan on going into the City on that day to cheer him on!