Happy 7th Birthday Isabella!

Today is Isabella's 7th birthday. Right now, the family is up in Maine at Camp Sunshine (www.campsunshine.org) so we will be celebrating her birthday away from home. Sorry for the brevity of the post, but Internet coverage in the middle of the woods is pretty spotty. I hope to post full coverage with pictures of our week when we get back to civilization.

CHOP Update

Today, we drove down to Philadelphia to visit The Children's Hospital of Philadelphia (CHOP) to speak with another neuro-oncologist. We're hoping to get a fresh set of eyes to look at Isabella's case and hopefully offer up something that can help treat her. So far, most of the requests for second opinions haven't yielded anything useful so we were very eager to get to Philly when they agreed to at least talk with us. Our conversation with Dr. Philips basically had two major topics.

First off, he reiterated that Isabella's tumor is extremely rare and unique. Because of that, it is very difficult to decide on a treatment because there is just not enough historical data to say whether we should do this or do that. Dr. Philips is one of the leading authorities in the country and he has only seen 5 cases similar to Isabella. Five in 30+ years!

Secondly, we still don't know what is showing up on Isabella's scan. He remarked that he has rarely seen a recurrence in the area of the brain where Isabella's is so this lends some credence to the theory that this may just be radiation related scarring. (I should also mention that we heard from the Cincinnati doctor and he also believes that there is no recurrence.) So what he suggested was that we have another scan called a PET scan that will show a different view of the area and possibly provide better clues as to what is in there. He also suggested that we try a different type of MRI scan as well that could provide additional information.

So here is where we are. We're going to head back home and schedule a PET scan for as soon as possible which can reveal some clues as to what is in Isabella's head. If necessary, we will schedule a special MRI which may provide further data. We have another appointment to have a regular MRI in a couple weeks to see if there is any progression of what is there. We have no treatment plans as of yet because we still don't know if there's anything there to treat.

We're still clinging to the hope that this is not a recurrence, but we are still exploring options so that we are prepared just in case. More to come!

Locks of Love

Locks of Love is an organization that provides hairpieces to children who have lost their hair due to some medical condition. We were very fortunate with Isabella in that first of all, she completely did not care when her hair fell out during the chemotherapy.  Secondly, her hair came in so nicely afterwards, and as many of you can attest, has been super curly!

Several months ago, Annalise mentioned that she would like to get her haircut and donate her hair to Locks of Love.  Since they require at least 10 inches of hair, we had to wait a bit to let her hair grow so that it would still be about shoulder length after it was cut.  Well, today was the day she got her hair cut and we captured the entire event. 

Special thanks to Greg and Tony’s salon in Westport, CT who provide the service of cutting and shipping the hair free of charge!

Click on each picture to see a larger version.

Check out how long Annalise’s hair was!

Halfway gone!

Isabella poses with Annalise and her detached hair

Isabella goofs around and imagines what she would look like with longer hair!

Annalise – Before and After!

Check Your E-mail!

I noticed that many of you have used the subscribe feature of the web site over to the right.  This is the most convenient method to get an e-mail when we’ve posted something new without having to visit the site on a daily basis (although you can do that too!) 

Please be aware that the subscription registration process is a multi-step process.  Once you enter your e-mail address and click subscribe, the website will send you a confirmation e-mail message with a link.  You must click on the link in the message in order to begin receiving the website updates.  I’ve noticed a few e-mail addresses that have not yet been confirmed, so if you have not been receiving updates, register again and be sure to look out for the confirmation e-mail.

If you do not receive a confirmation e-mail, check your Junk Mail or Spam folder in case the message ended up there.  I apologize for the inconvenience, but I’ve got to play by the rules of the good folks hosting the website.

Thanks!

August 2nd Update

Well the first set of second opinions that we’ve gotten back aren’t very encouraging.  One high profile hospital responded that Isabella already received high doses of chemo during her treatment and that there was nothing more they could offer.  Most of the surgical options that we pursued agree that the tumor is non-resectable (although we are still following up with a doctor in Cincinnati that uses tiny balloons to remove tumors that were thought to be unresectable).  We are currently planning trips to Children’s Hospital of Philadelphia (CHOP) and possibly Duke who have agreed to perform a second opinion, but only if they can meet Isabella in person.

But what do we currently have as treatment options?

One of the latest advancements in brain cancer treatment is through the use of targeted vaccines.  With this treatment, a portion or all of the tumor is taken out and a vaccine is created based on the resected tumor.  This has shown great promise in adult trials, although unfortunately, they are just beginning trials in children.  There are several vaccine trials out there and we are pursuing them all.  Fortunately, portions of Isabella’s original tumor were frozen and kept at NYU and we are hoping that one of the trials would be able to use that tissue to create a vaccine.  However, we already know that one of the trials requires new tumor cells, and for better or worse, Isabella does not have enough tumor cells to be used (and we don’t even know if think it would be resectable anyway).  The other tricky part is that depending on the treatment/trial, the company can make the vaccine here in the United States, but we would have to go to another country to administer the vaccine.  Also, since this is also considered experimental, none of it would be covered by insurance.

There are also several alternative solutions that we’re looking into.  If you recall, we found a study that showed that a ketogenic diet (an extreme Atkins diet) was able to control the growth of cancer cells.  (Coincidentally, there is an article in today’s MSNBC that describes how cancer cells thrive and proliferate on fructose, a substance found in many common foods:  http://www.msnbc.msn.com/id/38528161/ns/health-cancer/). Unfortunately, Isabella was not able to handle that too well and we couldn’t follow the diet for too long, so we consider this a “last resort” option.  That doesn’t mean that we can’t alter our diets and we have already, reducing many of the preservatives and trying to go as natural as we can.

Finally, there is also the slimmest of slimmest of hope that this may not be recurrent tumor.  Our doctors at Mass General where Isabella received her radiation treatment suggested that we need to rule out necrosis, or scar tissue caused by radiation.  If you recall from one of my previous posts, it is very difficult to tell tumor from necrosis from a standard MRI.  So they have suggested that in two or three weeks, we go in for another MRI and see if and how the “spot” progresses.  We’re not holding out too much hope on this one since it is highly unlikely for scar tissue to just appear out of the blue, however, they did mention that on rare occasions, they have seen that.  Another option that we’ve considered is to have a surgeon go in and biopsy that spot to verify whether it is cancerous or not.

Thanks again for keeping up to date.  I know it’s not too fun reading about this kind of stuff.  We’re going to have some very difficult decisions in the next few weeks/months and it’s nice to know that we have so much support out there.

Weekend Getaway

First off, I’d like to thank everyone for your strong showing of support during this extremely difficult time.  Words can’t explain the appreciation that I feel for everyone who has supported us over the last almost two years.

After we heard the preliminary results from the MRI where they saw a suspicious spot and would take a few days to examine in more detail, we decided to getaway for the weekend.  We knew that we would go crazy if we just sat around the house and did nothing while waiting.  With the extreme heat blanketing the northeast, we decided we would need some water wherever we went.  We decided to spend a day at Lake Compounce and the next day at Coco Key Indoor Water Resort, both in middle Connecticut. 

Lake Compounce is a theme park that includes a water park area and an amusement park area.  During the hot day, we spent that time swimming in the lake.  Later in the afternoon and evening, we went over to the rides area and the kids had fun on all the rides. 

After we were thoroughly tired out from Lake Compounce, we made the 15 minute drive over to Coco Key and checked into our hotel (luckily getting the last available room!).  Coco Key Water Resort is an indoor water park that includes a giant play area for kids, a lazy river, and several tube slides.  We were glad to hit the parks in the order that we did because it was nice to be indoors after getting all the sun we got at the lake. 

All in all, the kids had a great time as we were able to get away for a couple days on our impromptu vacation.  Check out the picture slideshow below to see some of the highlights.

Weekend Getaway - July 2010 VIEW SLIDE SHOW DOWNLOAD ALL

Just Awful News

There’s really no way to sugarcoat this.  Isabella’s doctors believe that she has recurrent tumor in the thalamus area of the brain.  This area is considered to be inoperable.  Her doctor said that treating this will be very difficult because these are the cancer cells that survived the chemotherapy and radiation the first time around.

The hardest part of this is watching Isabella, who continues to function as a normal six year old girl.  Just from looking at her, you wouldn’t think that there was anything wrong with her.

Although Julianne and I have been hit pretty hard with the news, we’re not ready to throw in the towel yet, no matter how bleak it looks.  Ever since Isabella was first diagnosed, Julianne kept up with all the latest research and studies on brain cancer, knowing the high likelihood of recurrence.  When Isabella was showing clear scans, time was on our side and we were hoping that some research out there would find an ultimate cure.  But now, time is against us as we scramble to find a miracle.

So what are we doing now?  We’ve sent her scans and medical history out for second opinions to some of the country’s leading authorities on pediatric brain cancer.  We are looking at all types of treatment, whether it be surgery, chemotherapy, radiation, spiritual, homeopathy or a combination of all the above.  Since time is against us, we don’t have the luxury of trying one thing and seeing if that works, then trying the next thing. 

A “Suspicious Spot”

Isabella’s last MRI showed a new “suspicious spot” in her brain.  We are scheduling a follow-up MRI with a more detailed perfusion scan for early next week.  I really don’t have much else to write at this point…

Another MRI - July 2010

So Isabella went into the City again today for another MRI. I can't believe it's been another three months, but I guess time flies when you're having fun! We should have the results in a few days, but until then, enjoy this recent video of Isabella doing the Cha Cha Slide!

One Year Out From Stem Cell Transplant

It’s hard to believe that it’s been a year since Isabella received her stem cell transplant.   (You can review the blog post that we posted here:  http://isabella.icatar.com/2009/05/stem-cell-transplants.html).  Those days were extremely difficult as she had just received her last and strongest doses of chemotherapy and her immune system was pretty much obliterated.  We would be placed in an isolation room and all visitors would have to wear masks and gloves so that she wouldn’t get sick.  Isabella was so sick during those days that she had a morphine drip attached to her, and she would have to press a button to get some relief. 

But fortunately, Isabella recovered extremely fast.  In fact, the nurses and doctors said that Isabella was the fastest ever to recover.  We could have been in isolation in the pediatric unit for up to 2 months, but we ended up being home in less than 2 weeks!

The clinical trial that Isabella was part of (HeadStart) measures survivorship from the date of the stem cell transplant.  We’re hoping that we will be able to celebrate many more of these anniversaries for years to come.

Another Stable MRI! (4/10/2010)

We just got out of the meeting with Isabella’s oncologist and we are happy to report another stable MRI!  It’s easy to forget about our “situation” on a day-to-day basis, especially since Isabella appears and acts like a normal child.  And I don’t think “forget” is really the right work, because honestly, who can really forget about this?  It’s better to say that it’s easy to push this situation to the back of our consciousness when everything, at least on the outside looks normal.  So it’s back there in our minds, lingering and shows itself every once in a while.  Whether it’s when Isabella has a slightly crooked smile, or if her right hands struggles to do something (I’ll never forget seeing her hand tremble while holding a cup of water the day before she went to the hospital).  But for the most part, we go on with our daily lives.

But when Isabella’s cancer really is brought back to the spotlight is during these MRIs.  It’s like those tests that you took back in school, where you feel like you aced it, but there’s a little nagging part of you that just says “what-if?”  And that’s how it is for the days right before we learn the results.  What if?  I don’t know if we’ll ever get over that nervousness and anxiety as we wait for the results.

But that’s neither here nor there.  This time around, we’re still stable and we don’t have to worry about it for another 3 months.  On Wednesday, Isabella will have her mediport taken out of her chest.  If you recall, the mediport is a small device placed in the chest, just under the skin, and is a direct line right into the heart.  All of Isabella’s medications and some occasional blood draws would be done through the mediport.

The picture below is of Isabella in her Easter dress.  Go visit our family blog (www.icatar.com) for a few more pictures of the family.

See you next time!

Another MRI

We're currently at NYU and Isabella just got out of her MRI. We should have the results early next week.

The kids are out on vacation next week. During the break, Isabella will have her mediport taken out. This will mark another milestone for her, as we hope she'll never need to use it again.

So keep your fingers crossed! We'll report back in next week.
Sent via BlackBerry by AT&T

Another Tooth Bites the Dust

So it didn't take long for Isabella's loose tooth to fall out.  The Tooth Fairy is certainly logging the frequent flyer miles to our house.  At this point, I don't know how she eats anything, but she does!  And look at all that hair!

Have a great Easter weekend everyone!

Random Tidbits

As the saying goes, “No news is good news” and in our case that holds true to an extent.  Isabella has her next MRI in a couple weeks, when she will also get her mediport taken out.  But I thought I’d throw a couple nuggets out there to share with you in the meantime.

The kids got a free week of vacation last week as our town scrambled to recover from the wind and rain storms that tore down a bunch of trees and power lines.  Thankfully, we never lost power, but I can’t say the same about the rest of Norwalk, as some parts did not have power for several days.

Isabella lost a couple more teeth recently and has one more on the way out.  Annalise also lost a tooth recently, so you could say that the Tooth Fairy has been making many visits to our house.  In this picture, the girls show off their toothy smiles, and of course, Nathaniel had to jump into the picture!

Speaking of teeth, Isabella recently had a dentists appointment and was fortunate to be seen by a dentist who had done a study on the affect of chemotherapy and radiation on children’s teeth.  She mentioned that Isabella had the best teeth she has ever seen from a child that underwent chemo and radiation!  Yet another reason to be thankful.

You have got to see the kids sing Lady Gaga’s “Bad Romance” which we just recently downloaded for Rock Band!  Hopefully, I can get a video up soon!

Finally, I think we are all just about tired of winter and ready for spring (except maybe Nathaniel, who we cannot tear away from the Wii!).  My baseball team has been practicing indoors for a few weeks and we are eager to get outside.  Annalise is moving up to the next level of softball where they pitch to each other and play in real games.  And last, but not least, we just bought Isabella a brand new glove because she will start in the beginner’s softball league this year.  We spent some time outside to figure out whether she wants to throw with her left or right hand, and after practicing with each, she settled on throwing with “Mr. Righty”.  In the beginner’s league, the coaches pitch to the girls and they run the bases, but they do not count outs.  The fielders field the balls and practice throwing to the bases.

So, that’s it for now!  Check back in in a couple of weeks where we will hopefully (*cross fingers*) report another good MRI.

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!