Happy Birthday Nathaniel!

Today is Isabella’s little brother’s third birthday!  Head over to our family web site to see a couple short videos for Nathaniel.

The Most Difficult Update Yet

This is probably the most difficult update that I’ve written yet, and sadly, will not be the most difficult I will have to write.  All of Isabella’s doctors believe that the spot in Isabella’s brain is recurrent tumor.  Any hopes we had that this was a mistake or that it was just scar tissue were dashed this week.  In cases of recurrent malignant brain tumors, there is no chance for cure.  Although there are treatment options that may help prolong Isabella’s life for maybe weeks or months, the cancer will eventually spread and kill Isabella. 

We received this news a couple of days ago and it’s taken a couple of days for us to come to grips with the news.  For the past month, even though we saw a bunch of signs that this indeed was recurrent, we at least had a slim glimmer of hope that it may be scar tissue.  But having the absolute certainty of this has been very difficult for us to deal with.  We don’t know how much time is left (personally, I don’t want to know), but the spot did grow slightly in the 4 weeks since we first saw it. 

I mentioned that there are treatment options available, but the thing that we need to consider is quality of life.  Is it worth it to put Isabella through several cycles of chemo for a few extra weeks or months?  Some parents on the support groups when faced with this decision decide to forego any further treatment so that their child can spend their last days happy and not sick and vomiting.  Others want to try everything knowing they may regret leaving an option untried that may have helped their child.  We’ll need to weigh our options soon and make the hardest decision we’ve ever had to make.

If anyone out there is holding onto a miracle, now would be a good time to use it. 

Camp Sunshine

Check out the picture slideshow and videos below from Camp Sunshine.  Camp Sunshine provides a place for children with life threatening diseases to get away with their families.  Each week, they host a different set of diseases, so that the families at camp are in similar situations.  So we went during brain tumor week and were able to meet other families going through the same thing.

Although it was difficult for Julianne and me to enjoy the week, it was well worth the visit as the kids had a great time.

Camp Sunshine - 2010 VIEW SLIDE SHOW DOWNLOAD ALL

 

This video shows the entire camp singing Happy Birthday to Isabella on her 7th birthday!

This video shows Isabella during the camp talent show!

Upcoming Scans

Well we made it back from Camp Sunshine and everyone had a blast.  I hope to post some pictures and videos from the incredible week that we had.  In the meantime, we have a couple scans scheduled for Isabella in the next couple of days.  On Sunday, August 14, we have a PET Scan scheduled that will hopefully provide some more insight into what the new spot in Isabella's brain is.  Then on Tuesday, we have another MRI scheduled which will show whether the spot has grown or not.

We do continue to hope that this is a giant mistake, but our hopes of that were diminished over the past week as Isabella displayed more weakness on her right side in both her hand and her feet.  This is usually a sign of some tumor activity.  But hopefully we'll know for sure in the next few days. 

I think the worst part in the last couple of weeks has been the uncertainty.  If we know definitively what is going on, at least we can formulate a plan.  Until then, all we can do is worry and wait.

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!

 

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!

“A New Baseline”

Last weekend, we went into New York City to have Isabella’s follow-up MRI.  This MRI was scheduled to be six weeks after her radiation ended back in early September.  The reason we had to wait six weeks after radiation is that there is a lot of swelling caused by the radiation that would make the MRI look like a mess. 

It took a few days to get the results, but we are ecstatic to report that the scans are clean and show no new swelling, no new enhancements, and no new mass!  This will be the new baseline that future MRI’s will be compared to check for any new growth.

For the first time in a long time, we’ve been able to let out a sigh of relief.  I’ve used the marathon metaphor a few times, and even though we’ve crossed the finish line in terms of treatments, we will need to keep running.  Isabella will have an MRI scheduled for every 3 months for the next couple of years.  Gradually, if everything remains stable, the MRI’s will move to every 6 months, then to once a year.

It’s really difficult for me to find the words to describe how I feel at this point.  It’s just like a giant jumble of elation, relief, and gratitude.  To think that Isabella was hours from dying – one of the doctors that we spoke with used the very sobering term that Isabella was “checking out” when she had arrived at NYU on that fateful night – and to watch her attending school and running around like a normal kid, all less than a year later – it’s really nothing short of miraculous.

At some point, I may be able to put into words how I feel as I reflect on everything that has happened.  I don’t think that time is now though.  In the meantime, please enjoy these pictures from our trip to New York City.  And again, thank you all for keeping up with us and your support.

View Slideshow

Pediatric Cancer Awareness Month

September is, or should I say, was Pediatric Cancer Awareness Month. The fact that you or I hardly heard anything about it says how woefully unaware we are when it comes to pediatric cancer. As a family, we thank you for following our journey, and hope that we've added even just a little awareness to such a terrible disease. Cancer strikes thousands of families a year, but as with many other things, you never really think about it until it strikes so close to home.

If you've been following the bills that Congress introduced for Pediatric Brain Cancer research this year, you'll see that there has been no activity at all on these bills. (You can track the bills with the widget over to the right.) The bills were introduced on January 22, and have sat there since.

We all know that the pink ribbon symbolizes breast cancer awareness, but do you know what the color is for pediatric cancer? Gold. But this month, we will see pink ribbons everywhere as it is currently breast cancer awareness month.

Julianne read this message from one of the online pediatric cancer support groups, and fittingly, is from a woman who battled breast cancer and lost a child to cancer. Her perspective seeing both sides of a disease, as both a parent and patient, is both tragic and inspiring.

The end of September is approaching and Childhood Cancer Awareness Month has passed, largely unnoticed by society. The rush to shower us with pink in recognition of Breast Cancer Awareness month is reminiscent of the crowding away of pumpkins and scarecrows by Christmas trees and snowmen. Except there's no pushing gold aside. The way is clear for pink.

Even the American Cancer Society -- the outfit that professes to represent all cancers and provide support for everyone affected by the disease -- the organization for which we all come together and raise funds by holding a Relay each year -- has chosen not to recognize Childhood Cancer Awareness Month.

Go to www.cancer.org and what do you see? The banner at the top of the page is pink and touts the ACS' commitment to fighting breast cancer.

Of course, I, among all people, am grateful for the focus of so many foundations and researchers on breast cancer. I know I wouldn't be looking at a future that is likely cancer free (or free of breast cancer, anyway) without the research and the focus on breast cancer during the past decade.

Still -- I'd rather have my son.

What if the focus that remains on breast cancer was turned to pediatric brain cancer?

I know millions of women are affected by breast cancer. But almost all of them are effectively treated.

Only thousands of kids are affected by brain cancer. But many -- perhaps most -- of them die.

This is so politically incorrect, I am hesitant to write it. But, as I write, I am without breasts and sans colon.

And one son short a full house.

If anyone can speak to this issue, I think I can.

I am grateful for the pink that signals the arrival of October in our day and time. I just wish there was a wave of gold -- more in terms of funding for research, but also in terms of awareness -- to usher in the pink.

If you are reading this, you know. You have traveled this tragic journey with us and you are aware of the impact of pediatric cancer on families.

Finally, the following article describes some of the sobering facts of pediatric cancer compared to other cancers, and shares more of the mother's story from a third party perspective.

Gold Ribbon, True Courage On Display

Happy Hour Fundraiser

As most of you already know, my cousin, Adlar, is running in the NYC Marathon on November 1st and he will be running in honor of Isabella. On Tuesday, October 13, they will be holding a Happy Hour Fundraiser for the Race Against Cancer at The Perfect Pint in New York City (on 45th St between 6th Ave and Broadway). The event starts at 6pm. If you are in the City, stop by and have a drink!

Also, Adlar is getting closer to raising enough money for his goal. If you have a couple bucks to spare, please consider donating for this worthy cause. The link to visit Adlar's page is over on the right.

The Healthcare Debate

I normally try not to post anything that can be construed as controversial and steer away from anything political.  But the recent debates on healthcare have hit close to home particularly for us.  As we get hospital bills and insurance claims statements on almost a daily basis, I can’t help but think about what kind of plight we would be in if we didn’t have insurance.  Furthermore, if I were to end up at a new job with a new insurance carrier, Isabella would most likely not be covered because it would then be a pre-existing condition.  

Today, I received an email from Lance Armstrong’s Livestrong Foundation.  The message tells of how Lance did not have insurance when he was diagnosed with cancer, so now he is pushing for Congress that any healthcare bill include the following options:

No American should be denied health insurance coverage because of pre-existing conditions.

No American should lose their insurance due to changes in health or employment.

So please take a minute to visit this link and chime in regarding this important topic.

http://www.livestrongaction.org/campaigns/healthcare

The full email message follows.

Dear LIVESTRONG Friend,

Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don’t know is that at the time, I didn’t have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life—but also for the coverage that I desperately needed.
The legislation currently being debated in Congress is not just words on a page—for many cancer survivors, it’s a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American:
http://www.livestrongaction.org/campaigns/healthcare
No matter what side of the healthcare debate you're on, I believe we can all agree on two things:
No American should be denied health insurance coverage because of pre-existing conditions.
No American should lose their insurance due to changes in health or employment.
Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We’ll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate:
http://www.livestrongaction.org/campaigns/healthcare
When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.
I was lucky. We can't rely on luck to ensure coverage and treatment for the millions of Americans affected by cancer. Some cannot get coverage because they've already been diagnosed. Others get calls from their insurance companies saying they have been dropped. It happens all the time—and it's unacceptable.
Every year on LIVESTRONG Day, we come together to take action for a world without cancer. In the U.S., a critical step is to make sure cancer survivors can get and keep their health insurance.
It has been 13 years since my diagnosis, but in some ways, not much has changed. No person should have to worry about health insurance while battling cancer. That so many do is an outrage, and we must speak out.
Please sign the petition and forward it along to your friends and family:
http://www.livestrongaction.org/campaigns/healthcare

LIVESTRONG,
Lance and the LIVESTRONG Action Team

The Making Headway Family Cruise

The amazing folks at Making Headway put together another great event for pediatric cancer families: a yacht cruise around New York City! The cruise was on the Skyline Princess and departed from Pier 59 at the famous New York Chelsea Piers. The cruise took us down the Hudson River into New York Harbor, up the East River and back. We were blessed with amazingly warm weather for the three hour tour (the kids looked at us funny as Julianne and I sang the theme to Gilligan’s Island multiple times!) Some of the sights we saw were the New York City skyline, an actual pirate ship, the Brooklyn Bridge, and the Statue of Liberty.

The slideshow below shows some of the fun that we had on that incredible day.

View Slideshow

Quick Update

Isabella’s first grade teacher reports that she’s doing amazingly well at school and fit right in both academically and socially when she returned.  This is really great news considering she missed more than half the school year.

There also isn’t much more to report as we all return to what is now our normal lives.  Isabella’s next MRI is scheduled for October 10th, and we should get the results within a few days afterwards.

One pretty cool thing to report though is that Isabella’s hair is growing back in very nicely, aside from the area that was exposed to the radiation.  They expect this area to start growing back within the next few weeks.  But Isabella is very proud of her new hair growing back.  Last year,  when she went to school, she would prefer to wear a hat.  Now, she doesn’t want to wear a hat so that she could show off her hair!

We’ve read that when cancer patient’s hair grows back, it could grow back a different color, texture, and curliness, so we are very curious to see as her hair gets longer.  The picture below does show that her hair looks like it will return to being curly.  You have to zoom in pretty close, but you could see some of her hair curling up at the back of her head.

Also, if you haven’t already, please take a few minutes to support my cousin, Adlar, as he races the New York City marathon in honor of Isabella.  Click the link over to the right to make a donation online, but if you prefer to mail something in, feel free to contact me (roneil@icatar.com).  The race is scheduled for November 1st.

Back to School (First Grade Edition!)

Isabella was extremely excited to start first grade last week.  So far, Isabella has fit in well in school and she has been excited to see all of her friends again.  Here are a couple pictures from her first day.

Plus here’s a bonus pic of me and the kids that I absolutely love.  We took it this weekend before we went to the Oyster Festival here in Norwalk. 

All Home!

Finally after a long six weeks in Boston, everyone is home. There are no more scheduled treatments for Isabella. The only thing that is planned for now are a bunch of MRIs, with the next one in about 4 weeks. Although we've breathed a sigh of relief for the last treatment, we will still be apprehensive at that MRI to see if there are any cancer cells left. We've learned from the beginning to approach this with cautious optimism, and we will certainly do so for every MRI for the next couple of years at least.

It was 294 days ago when our lives were shattered when we learned of Isabella's tumor. I know that our lives will probably never be back to what it was on November 16 - that was the day when we went to My Three Sons and the kids rode a bunch of rides and won a bunch of tickets to claim for prizes. That was the day before a doctor came into the waiting room at Bridgeport Hospital and told us that there was a 10cm tumor that replaced a large portion of Isabella's brain.

Tomorrow, 295 days after that awful first day, we will try to start back with normal lives. I will go back to work and take my usual train into the city. Julianne will wait with Annalise and Isabella at the bus stop as they go off to school. I'll come home off the train and we'll all be able to have dinner at home together for the first time in a long time. Someone will cry about something, but soon, the controlled chaos will be back in our house.

And that'll be just fine by me.