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.

Finishing Up the Day

So after Isabella completed her treatment and rang the bell, we served the cakes to the people in the waiting room, as well as the doctors and nurses.  Afterwards, we went up to the Healing Garden on the 8th floor of the hospital.  We then walked a little bit around Cambridge St. to get some lunch, then headed back to the apartment.  After dinner, we walked along the Charles River and finally just got back a little while ago.  You can see some pictures from the remainder of the day below.

We will spend the rest of the weekend here in Boston, then head home on Monday so that Isabella can get ready for her first day of school on Tuesday.

This is our nurse Rachel who spent every morning with Isabella during her treatments.

Roneil sits with the children in the Healing Garden. Julianne, Isabella, and Annalise look out over the Charles River from the Healing Garden.

Isabella and Nathaniel sit by the reflection pool in the Healing Garden.

We found these flowers that matched Isabella’s dress perfectly.

A nice sunset walk along the Charles River was a perfect way to end the day.

Isabella's Last Day of Radiation Treatment

So today is Isabella's last day of radiation treatment. She has been up here in Boston for the last six weeks receiving daily radiation Monday through Friday. Today is almost like a typical treatment day as Isabella woke up smiling and there's the rest of the hustle and bustle as we try to get everyone ready to go over to the hospital. The difference with today is that we will be bringing over a couple cakes (yes, that's right, a couple) to help celebrate this being her last day of treatment. We are due at radiation in 10 minutes so I have to go and finish getting ready. I will keep this post updated with our progress and some pictures and video as we go along the day.

Here is a picture of Isabella getting ready for treatment.

Update 8:40am
Our nurse Rachel just took Isabella into the treatment room and the anesthesiologist just walked in as well. So we should be done in an hour. We were so excited to get here that we forgot the cakes. Fortunately, our place is just across the street so we'll walk back while she is getting treated to grab the cakes.

This is the famous bell that we will be ringing soon!

Update 9:43am

Friday is also a special day here at the radiation treatment in that all the kids getting treated and their siblings get to pick from a room full of toys.  Annalise and Nathaniel have already picked their gifts, while Isabella will pick hers once she gets out.

Here, Annalise can’t decide between a toy gun or a set of finger nails extensions!  Quite a choice, eh?

Update 10:15am

They just called out and said Isabella has woken up from her anesthesia.  Julianne will go back and sit with her.  We will wait until she’s more awake to ring the bell.

Update 10:36am

Isabella just came out of the recovery room and we are now just waiting to meet with the radiation oncologist before we ring the bell.  Here is everyone walking out of the recovery room with all smiles.

Update 10:53am

Her treatments are officially complete!  Here is Isabella ringing the bell.  More updates in a bit (including a video!)

Last Treatment Day Tomorrow!

The whole family is now up in Boston for Isabella's last treatment day tomorrow! I plan on blogging early and often tomorrow. We are scheduled to be at the radiation floor at 8:30am for a 9:00am treatment start. She should be out of treatment and waking up from the anesthesia about an hour to an hour and a half later, then we will record Isabella ringing the bell to signal the end of her treatment. This will then be followed by a small celebration and some cake.

In one of my earliest posts, I likened this journey to a marathon as opposed to a sprint, but although tomorrow may symbolize the finish line, we must continue to run even past that finish line. Even after this last treatment, we will continue to have MRIs and follow ups for years, and we'll watch every move and twitch that Isabella has. It does feel like we are at the end of a very long tunnel and we certainly appreciate the many of you who have followed us from the very beginning and those who joined us along the way.

We're almost there!!!