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!!!

Radiation Week 5 Finished!

Today, Isabella finished her fifth week of radiation. This means that there is only one week left! On the day that someone finishes their treatment, they get to ring a bell when they leave to celebrate the completion of their treatment. We will all be here next Friday to see Isabella ring that bell.

I came up to Boston for the weekend, but unfortunately, the weather may not cooperate as Tropical Storm Danny will be making its way past New England. School will also be starting next week so I'll take Annalise home with me. Isabella will only miss a couple of days of school as she'll be ready to go back to school when we get back after Labor Day.

Christopher's Haven

For the last two weeks and the remaining two weeks, we've been staying at Christopher's Haven. This is another one of the many charity houses around Boston available to families undergoing treatment at local hospitals. Christopher's Haven is a set of apartment/condos located across the street from Boston Mass General and is really convenient for us. It's also right along the Charles River so we have a nice view of the river.

From their website:

Christopher’s Haven was founded in 2001 by Dan Olsen, a local actor, singer-songwriter and three time cancer survivor. While receiving treatments at Massachusetts General Hospital, he met families struggling to care for a child battling cancer while also facing the staggering costs of extended stays near the hospital. After surviving his third bout with the disease, Dan committed himself to doing something to help families like those he’d met. He envisioned a haven for young cancer patients and their families -- a place that would free them from concerns about lodging,and allow them to focus on their child’s treatment and recovery.

Radiation Week 4 Finished

On Friday, Isabella completed her fourth week of radiation therapy. She still feels great and is acting like her usual self. We are beginning to see some physical effects of the radiation, namely, some redness on the left side of her head where the radiation is being applied. In addition, the hair that is growing on the left side of her head is noticably thinner and has a couple bald spots. Truthfully, we're absolutely fine with these side effects because her hair wasn't even supposed to grow back for a couple more months. The fact that her hair even started growing back so soon is another sign of her recovery.

Everyone is also back home in CT for the weekend to celebrate Nathaniel's 2nd birthday! They'll be going back to Boston on Sunday so we don't have that much time together. It is pretty lonely at home alone while everyone is in Boston. Although to an outsider, our home on a normal day may seem like complete and utter chaos, but without it, the house is just an empty shell. I can't wait for another two weeks when the treatments are done and we'll all be home together.

Geeky or Cool?

MSNBC recently ran an article on geeky tattoos.  It’s amazing what some people are willing to put on their bodies.  While I look at some and say “Wow!”, others make me question how that person will feel about their tattoo when they are 50!  My favorite one (being the geek that I am) is the one with the pi symbol made up of binary digits, but I also thought this one was interesting.

From the description, this is “Radiation breaking double helix DNA.  This is the basis of radiation therapy for cancer patients.  More nerdy than geeky I guess!  I am a medical physicist.” Submitted by Jonathan Rogers.

Radiation Week 3 Finished - Half Way Done!

Today, Isabella completed her third week of proton radiation therapy. This also marks the half way point of her therapy. To celebrate, we went to Six Flags New England amusement park, where we spent the afternoon in Hurricane Harbor (their water park), then jumped on a few rides for the evening. I have a bunch of pictures and videos to post from the park and Isabella's birthday, so check back soon!

HAPPY BIRTHDAY, ISABELLA!!!

Today, August 10th is Isabella’s 6th birthday.  She has been so excited that for the last several days, all she could talk about was how she couldn’t wait for her birthday.  We had a small party for her while she was home this weekend with the family and I hope to post pictures soon.  Isabella and the rest of the family are back in Boston to continue her radiation treatment.

Radiation Week 2 Finished!

Isabella completed her second week of radiation today. I stayed home all week for work, while Julianne stayed in Boston with Isabella, Annalise and Nathaniel. They came home today for the weekend and will go back on Sunday to continue for the third week of treatment. There's nothing new to report from the treatment, which is how I like it. Isabella has experienced no side effects from the radiation and continues to enjoy the summer with her siblings.

One thing I should mention is that every single doctor we've seen so far are completely amazed at Isabella's progress. Whether it's the oncologist, or radiologist or therapist, they are amazed how great Isabella looks given the size of her original tumor. They've seen children with tumors half the size with many more problems than Isabella has. So for that, we're grateful. Everything that Isabella has had to go through in her young life is just not fair, but the way Isabella has handled everything is such an inspiration to us.

Ronald McDonald House

As you can imagine, if we had to stay at a hotel in Boston for the entire 6 weeks, it would get expensive really quickly.  Fortunately, there are several charity houses in the area that provide lodging either at little or no cost for families that are receiving treatment at any of the local hospitals.  For the first two weeks of treatment, we are staying at the Ronald McDonald House which is located in Brookline, MA and just a few minutes drive to Mass General Hospital.  The house is a beautiful, old mansion located in a nice, quiet neighborhood.  The house can hold 23 families and includes a special annex for stem cell/bone marrow kids who need to be isolated.  The house has a giant kitchen with two refrigerators, sinks, dishwashers, and islands.  Best of all, on the lower level, there is a children’s playroom complete with all sorts of games and two arcade games.  It was no surprise that Isabella, Annalise, and Nathaniel quickly grew to love staying at the house and couldn’t wait to get back to Boston after going home this weekend.  The only disappointment I had was not being able to get a Big Mac and fries whenever I wanted!  Click the link below to see a slideshow of the house.

View Slideshow

Whale of a Time in Massachusetts

As you’ve read, Isabella is currently receiving proton radiation therapy at Boston’s Mass General Hospital.  A couple of weeks ago, we paid a preliminary visit to meet with the doctors and check out the living quarters.  We also decided to make it a vacation at the last minute as we spent some time enjoying Boston, then proceeded to Cape Cod for a couple days.  The visit to Cape Cod included a Whale Watching tour which was awesome.  Click the pictures below to see a slideshow of our visit, then check out a couple of our videos.

View Slideshow

 

In this video, Julianne and Isabella risk getting soaked by some tricky fountains in downtown Boston.

 

In this video, you can see a great show put on by a humpback whale during our whale watching tour in Cape Cod.

Radiation Week 1 Finished!

Isabella finished her first week of radiation today with very little to report. There were no noticable side effects and Isabella has been acting normal all week. We will be heading home on Saturday for the weekend, then head back up on Sunday for Round 2. I do have a bunch of pictures and other stuff to post so check back in later this weekend.

Radiation Day 1

So we are here in Boston now and Isabella just completed her first day of radiation. We were in the hospital for less than two hours, but the radiation treatment itself only took about 20 minutes. The rest of the time was spent prepping, and Isabella took about an hour in the recovery room to wake up from the anesthesia. Her treatments will continue Monday through Friday for the next six weeks.

I should also note that Isabella's most recent MRI's showed great improvement and although there is still some tumor left, there are only "wisps" of cells. There may be stray cells that the MRI don't pick up which is part of the reason for radiation. We are trying to get rid of what's left to minimize the chance of recurrence.

Summer Fun (updated with videos)

It’s been a pretty strange summer so far here in the Northeast.  After a fairly mild and rainy June, we’ve finally started getting some summer-like weather.  Once Isabella got out of the hospital after her stem cell transplant, it didn’t take her long to get out and start being a kid again.  Click the pictures below to start a slideshow of our summer fun.

View Full Album

Here are a couple videos from this summer.  The first one shows the kids enjoying a nice day at the beach.

 

This video shows Annalise and Isabella “running” on the Wii.

 

Finally, here is Isabella on the monkey bars at the playground.  This shows the tremendous progress she has made with her right hand.

This video is of Isabella at one of her swim lessons at the YMCA. This is excellent therapy for her!

Radiation 101

While survival rates for other types of cancers have improved greatly, the survival rates for pediatric brain tumors have not changed all that much over many years. The traditional treatment for pediatric brain tumors is radiation because the tumors did not usually respond well to chemotherapy or the doses of chemotherapy proved too toxic for the children. Radiation works by blasting a beam of energy (usually x-rays) at the cancer cells. The radiation energy then either kills the cancer cells or jumbles the DNA to stop them from replicating.

Unfortunately, traditional radiation has a host of short term and long term side effects. Radiation cannot distinguish between good cells and bad cells, and some good brain cells can be radiated. This can cause extreme fatigue, permanent hair loss, hearing loss, stunted growth, abnormal puberty, and decreased intelligence. There is also a small chance that radiation causes more cancer.

There is a relatively new type of radiation called Proton Radiation Therapy. With this type of radiation, we can fully control and target where the beam strikes so that we minimize damage to good brain cells. Currently, there are only 6 proton therapy centers in the country, with the closest being in Boston at Mass General Hospital.

Because of these radiation side-effects, the Head Start protocol (currently in Phase 3, which Isabella is part of) was created. The Head Start protocol looks to avoid or minimize radiation in children by using 5 high dose chemotherapy cycles. The last cycle is followed by a stem cell transplant to assist the child's blood counts to recover. Because of the size of Isabella's original tumor, we knew that we would have to do radiation at some point. Although we won't be able to eliminate radiation, we'll be able to minimize it since the remaining tumor has shrunk.

In addition, we will be taking advantage of the proton therapy radiation at Boston's Mass General Hospital. This past week, we were just in Boston meeting with the radiation oncologists to plan Isabella's treatments. Her radiation treatments will start on July 27 and run for 6 weeks. The treatments are done on a daily basis from Monday through Friday.

I do have plenty of pictures and videos from this summer as we all enjoy being home for the summer. I hope to post them soon. Isabella continues to be herself, which is an energetic and brilliant child.

A Trip to the Aquarium (updated with new video)

One of our favorite places to visit is the Norwalk Maritime Aquarium here in Norwalk, CT.  We recently visited the aquarium and took a bunch of pictures and a couple of videos.

Here the girls walking down to the aquarium hand in hand.  Very cute!

One of the new attractions at the aquarium this year are the South African penguins.   

Whenever we go to the aquarium, we have to check out the turtle shells and pose behind them. 

Here we are at the Shark Tank.  One of the shark gets a little too interested in Isabella!

Just as we were about to leave, the normally shy octopus put on quite a show for us.  Enjoy!

NEW! Here is a new video with the kids visiting the penguin exhibit.

Making Headway Family Fun Day

The Making Headway Family Fun Day which was rained out the previous week finally took place on June 28. The event was held at the home of Making Headway co-founders Ed and Maya Manley in Westchester County, New York. The event lived up to its name as we had tons of fun along with dozens of other families that are either currently going through brain cancer treatment or have gone through it. There were several activities tables setup for the children and plenty of goodies for all the children (cancer kids and their siblings). Best of all, there was a heated pool where Annalise, Isabella, and Nathaniel spent most of the afternoon. Click on the pictures below to see a slideshow.

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Updates Soon

I have a bunch of pictures and videos that I will be posting soon (hopefully tonight).  We’ve been pretty busy lately even though the kids are now are “vacation”. 

Some Awesome News

We finally got the results from Isabella's MRI from Saturday and they show that there is "marked improvement" in tumor size. This is great news, especially considering that the previous couple MRIs showed no reduction in size of the tumor. We haven't seen the actual images yet so we're not sure how much is left and where it is, but we're remaining cautiously optimistic. At this point, we are still scheduled for radiation later this summer, but we will still discuss with Isabella's oncologist if there could be any changes in treatment. This news will certainly help the summer days go by more happily.

Not So Busy Weekend

So the rain ended up drenching the tri-state area and ruining our plans for the weekend.  After Isabella’s MRI on Saturday, we were planning on walking around all over New York City, perhaps hitting the Central Park Zoo.  On a nice day, a walk to Central Park would be nice (about 30 blocks) but because of the heavy rain, we didn’t want to walk all the way up to the Park.  Instead, we ended up going to Bryant Park (about 12 blocks away), doing some shopping along 5th Ave., and walking by the Empire State Building.  That’s about all the kids could take in the rain and cold before begging to go home.

All the rain on Saturday caused my baseball game on Sunday to be cancelled, and on top of that, the Making Headway Family Fun Day was also cancelled, so we had nothing planned for Father’s Day.  So, instead, we hung around the house and played in the yard.  We also broke out the golf clubs for the first time all year and went to the driving range.  Below are some pictures from our weekend.

Here is Annalise in front of one of the many bakeries at Grand Central Terminal.  It took us a while to pry her away from the window.

We bought a cake from Juniors bakery and brought it over to Bryant Part.  Here the girls are trying to stay warm and dry while enjoying the cake. Nathaniel looks sharp in his first baseball hat, a nice Yankee hat that we got from the Yankee Clubhouse store on 5th Ave.

Here are the three golfers ready to tear up the driving range. Isabella has her own bag and clubs.

Annalise, Isabella, and Nathaniel each wait their turn to hit.

Here’s a quick video of Isabella taking some swings at the driving range.

Busy Weekend

So we have a pretty busy weekend coming up. Isabella is scheduled to have an MRI on Saturday morning, so we'll drive into the city to have that done. On Sunday morning, I have a baseball game in the morning, then in the afternoon, the Making Headway organization is having their annual Family Fun Day. We've heard that in the past, President Clinton attended the party, so we're excited to see what luminaries may be present. Of course, this is all dependent on the weather cooperating as we are expecting rain this weekend.

Bunch of Updates

So we've had a nice and quiet week at home. Isabella has been doing very well. I've been going to work and Annalise is finishing up the school year. Because of the stem cell transplant, Isabella's immunity system will be compromised for a few months, and they suggest we stay isolated for at least the first month. They will gradually get less strict as time goes on, but this means that Isabella will not be able to go to school again until the fall. So since there's not much new stuff to report, I thought I'd post stuff that I meant to post a while ago, but since I didn't get the chance, will put them all together now.

 

This is Isabella at the last day of school.  This is the attendance board where each of the kids put their pictures in the “At School” or “At Home” sections.

Here Annalise and Isabella show off their artwork at the school art show.  The first one shows Annalise and Isabella under Annalise’s painting called “Stormy Mountains”.  The second shows Isabella’s drawing.

   While at the hospital, we decorated Isabella’s wall with lots of her drawings and other art work.  If you zoom into the picture, you can see a picture that Isabella’s classmates made for her, some mosaic tiles of fairies, and a bunch of bunnies.  The calendar shows a different drawing each day showing Isabella in her treatments.

Finally, here are the kids enjoying a nice warm day with some bubbles!

WE'RE HOME!!!

So after almost 3 hours of the worst traffic that NYC and I-95 could throw at us (the rain certainly didn't help), Isabella is now home! And just in time for us to enjoy what is predicted to be a terrific weekend weather-wise.

And if you thought Isabella had a big smile in the picture below, you should have seen her smile when she walked through the door!

Since Isabella is still immuno-compromised, we have no plans for this weekend (except for a baseball game for me). So we'll just do a lot of nothing and enjoying the sun.

Day +11 Steady Improvement

As expected, and as you can tell from the picture, it's Day +11 and Isabella is starting to feel a lot better. It's been a while since she's felt good enough to smile, so it is definitely a relief to see it. All of her blood counts are good. The only thing we need for her to do is to start eating more and we can then go home. We hope to be able to go home on Friday, or on Saturday at the latest. We've only been here about 3 weeks now, but it has felt like forever and I know Isabella can't wait to get home. By the way, the picture above was taken after she completely destroyed me in Uno, leaving me with 16 cards in my hand!

Fred's Team

A few weeks ago, my cousin, Adlar, made a very touching request. He told me that he was going to be running in the New York City Marathon on November 1 and that he wanted to run in honor of Isabella. He would be running as a member of Fred's Team, which is a collection of runners with the goal of raising money for cancer research. Please take a few minutes to visit his site and if you can, give a couple bucks to show support for this amazing gesture. Below is an excerpt from his web site.

Adlar's Fred's Team Site
Make a Donation

This year, I'm running with Fred's Team to support
The Aubrey Fund for Pediatric Cancer Research at
Memorial Sloan-Kettering Cancer Center. Making
the decision to compete in a marathon was a big
one, and training for the race so far has been
grueling. However, I know that any challenge I
face in completing this personal goal is put into
perspective when I consider what children with
cancer face every day.

As most of you already know, cancer has affected
several members of my family as well as many
friends. Most recently, last November my cousin's
daughter Isabella was diagnosed with a massive
brain tumor. Her details can be found at:
http://isabella.icatar.com/. Her struggle strongly
influenced my decision to run the marathon and to
support a great cause.

Day +9 Update Plus What Next?

Surprisingly, Isabella's white cell count has shot up and she is no longer neutropenic (low white cells, susceptible to infections). This means that her stem cells that we transfused into her 9 days ago are doing their thing and making lots of white cells. Unfortunately, now that the white cells are fighting off all the foreign invaders in her body, she has been feeling extremely bad with lots of pain. The doctors say that this is a normal side effect of a large spike in white cells and that she should start feeling better in a day or two.

As Isabella continues to recover from her final cycle of chemo, we've been planning the next stages of treatment for her. First off, she will have an MRI to see what is left of the tumor. Then, we will be going through radiation therapy in Boston starting in mid-July to blast away any remaining cancer cells. The treatments run once a day for 6 weeks.

Although we wanted to avoid radiation as much as possible, due to the size and infiltration of the original tumor, the chemotherapy was not able to eliminate everything. The Boston radiology folks did review Isabella's history and think that she is a very good candidate for the radiation based on how she's responded to the chemotherapy.

Day +7 Update

So far, Day +5 and +6 have been Isabella's most difficult days. In addition to the nausea and mucositis, she also has been battling a fever so in general she's felt pretty rotten. Since they don't know what exactly is causing the fever, they've been pumping her with all sorts of antibiotics and antifungal medicines. Isabella hasn't really felt like doing much over the last couple of days except to watch TV or listen to music since any sort of motion or activity causes her pain. Because of the pain, Isabella is hooked up to a morphine drip which she can activate with the push of a button.

The good news is that we are hoping that Isabella has turned the corner. Today, Day +7, although she still felt pretty rotten, she didn't have to throw up as often and she sat up more. Also, her temperature came back down to almost normal, so hopefully, she should begin to feel better soon (as in Sunday or Monday).

Day +5 Update

Today is Day +5, i.e., 5 days after the stem cell transplant. Isabella continues to feel the effects of the chemotherapy. In addition to the nausea and lack of appetite, she is also suffering from mucositis. Mucositis is a common side effect of thiotepa where the mucous membranes along the digestive tract become inflamed or ulcerated and slough off. Isabella has been spitting out and vomiting the mucous on a regular basis and it looks pretty nasty. In most cases, the pain caused by the mucositis gets so bad that the patient is given morphine and Isabella is no different.

The good news is that we are halfway through the worst week. The mucositis should clear up within a couple days and her blood counts should start rising which will help her to start feeling better. On Day 11 (which will be Wednesday, June 3), the stem cells that were transplanted on Day 0 should have worked their way to Isabella's bone marrow and should be cranking out new blood cells. After that, they say that the blood counts come up very quickly, after which we would be able to go home.

But until then, we remain in isolation. We've played a lot of Uno and watched a lot of movies and TV. Isabella has also drawn a bunch of pictures that we put up on her wall with a bunch of other inspiring works of art. Since Isabella really hasn't had the strength to walk or move, being in isolation hasn't been has bad as we thought it would be.

Our 12 Year Anniversary

Today was not only a beautiful Memorial Day, but also marked 12 years since Julianne and I were married. In contrast to today, our wedding day was marked by heavy showers throughout the day. Today was also the first time in those 12 years that we did not wake up next to each other on our anniversary day as I was home with Nathaniel and Annalise while Julianne stayed at the hospital with Isabella. Since Julianne's dad is down visiting from Vermont, I was able to go into the hospital today so that we can spend some portion of the day together.

Isabella continues to feel the effects of the chemotherapy. Her doctors say that this upcoming week should be the worst of it (the main reason I chose this week to take vacation). In addition to her nausea, which seems to be increasing, her appetite has also gone to pretty much nothing. On top of that, her blood counts have really dropped and she is now officially neutropenic (low white cells) and she received a red cell infusion yesterday. We also expect her to receive platelets soon. Hopefully soon she'll start to feel less nauseous and sometime next week, her blood counts should start to recover. With any luck, we should be home by late June and be able to enjoy part of the summer before having to do anything else medically.

Stem Cell Transplants

Isabella had her stem cells transplanted back into her today. These were the stem cells that were harvested from her from the last couple of months. I've learned a lot over the last few months and added a few more things on Saturday as I watched her get the procedure.

Stem cells in general are special cells that can divide and turn into other types of cells. The peripheral stem cells that she received can turn into any type of blood cells. This is different from embryonic stem cells which can turn into any other cell including spinal cord or brain cells and the cause of many passionate debates. Once the stem cells are transplanted, it takes about 11 days for them to travel through the blood stream and to the bone marrow in her hip where they will hopefully implant themselves and begin dividing to create new blood cells.

After her stem cells were harvested, they were frozen and stored away. They added a preservative to the blood increase the viability of the cells while they are stored. When the patient is ready to receive the stem cells, the blood is thawed and put into a giant syringe and pushed through a central line (in this case, through Isabella's port). While the blood was being transplanted into Isabella, an interesting thing happened. Even though the push is happening through the port, Isabella got a very strong, weird taste in her mouth. This common occurrence happens because of the preservatives in the blood. The taste was so strong, that for the 10 minutes that the blood was being pushed, Isabella got extremely nauseous and vomited and had to spit several times. The doctors warned us of this ahead of time and we were prepared with lollipops to try and negate the taste, but it only helped a little. The really weird part to watch was that within a couple minutes of the syringe being emptied, Isabella felt better and perked right up.

So for now, we'll remain in isolation for at least a couple more weeks. Isabella is still feeling pretty sick from the chemo, but hopefully, those symptoms will start clearing up soon. Her appetite has been ok, but she hasn't been able to keep anything down, but they are pushing nutrition through her port.

Below are some pictures from a visit from Annalise and Grandpa.

Moved to Isolation

So today we were moved to an isolation room in the pediatric unit. An isolation room is the same as a regular room except that everything was sanitized before we moved into the room. And by everything, we mean everything, as they wiped down all our stuff as well. Moving into the isolation room is in preparation for Isabella receiving her stem cells later today (Saturday).

Also, her blood counts continue to remain steady, although the doctors expect them to drop within the next few days. The stem cells take about 7-10 days to travel through the blood stream to get to the bone marrow before they can start creating blood cells. So although she's not neutropenic yet (low white cells which make her highly susceptible to infections), she will be soon. During that time, all visitors will need to wear masks and gloves.

Isabella is still doing amazingly well. She has thrown up a few more times, and earlier today she didn't eat anything. But later in the afternoon, she started asking for some stuff to eat, including some pudding and chicken noodle soup. Of course, she threw that up a little later, but at least her appetite may be picking up. Later in the evening, she ate some chinese fried rice and pizza and milk and so far has kept that down. Later on Saturday, we also expect a visit from Annalise and Grandpa so that should certainly cheer her up.

Isabella also loves to participate in the many activities that the Child Life services provide here on the pediatric floor. Two of her favorite activities are watching the clowns perform magic and music group therapy. Here are two pictures below. The first is Isabella watching Looney Louie do some juggling. The second picture is with her in music group therapy playing some bongo drums.

Last Day of Chemo!

Today, Isabella got her last dose of chemotherapy, a three hour drip of thiotepa. As I wrote previously, although she is doing much better than in previous cycles, she has started to feel the effects of the chemo. She has vomited a couple times over the last couple days and her appetite has been reduced to almost nothing. Also, she is not yet neutropenic (low white cells count) and her other blood counts are still ok, but they continue to drop and we expect them to bottom out within the next few days.

Today, she also started to feel more tired and did not want to do much. For the last couple of days, she would have the energy to walk around and take part in some of the playroom activities. But today, she didn't feel like walking and took several naps.

So the plan for the rest of the week is to have a two day rest on Thursday and Friday. On Saturday, she is scheduled to receive her stem cells that we collected over the last couple cycles. This will help her blood counts recover. We will also be moved to an "isolation room" within the next couple of days in anticipation of her white counts hitting zero. An isolation room is simply a regular room that the nurses completely sterilize before we move into it. In addition, all visitors to the room (including the nurses, Julianne, and myself) must wear gloves, masks, and gowns. It should take about 10-14 days for her counts to start to recover, then, a few more days when we will be able to go home.

So while we're excited to be done with the chemotherapy, we will be on edge for the next couple weeks as Isabella will be extremely susceptible to infection and her body's immune system will not be able to fight any infections. Since she won't be able to leave the room, we will also need to find a way to entertain ourselves in the room.

Chemo Cycle 5 Continues

Today, Isabella's creatinine clearance was normal so they continued with the third dose of carboplatin. They will check her urine again in the morning just to make sure her kidney functions are still ok. Isabella has started to feel some of the effects of the chemo, but her appetite is still ok and her energy is still good. She receives anti-nausea medication, which seems to help during the times when she starts to feel nauseous. In previous cycles, by now, Isabella would be vomiting several times a day and not have the energy to get out of bed, but that is not the case, at least so far. Also, the anti-nausea drugs would have little effect.

On Monday, she will begin 3 days of thiotepa, a chemotherapy drug that she has not gotten yet. Since everything got pushed a day, she will probably not receive her stem cell transplant until Saturday.

A Slight Delay

Today, Isabella was supposed to receive her third day of chemotherapy, which consisted of carboplatin. One of the side effects of carboplatin is that it may affect kidney functions, so every morning they analyze her urine to check her creatinine clearance. This morning, her creatine clearance was lower than normal, which may indicate an issue, so as a precaution, the doctors decided to skip today's chemo dose, check her urine again tomorrow, and go from there. They didn't seem too concerned about it and have indicated that a high percentage of kids on this chemo cycle have this type of delay.

Other than that though, Isabella is responding surprisingly well to the first two doses of carboplatin. Her appetite has been excellent and she only had a little nausea on Friday morning. She did throw up a little today, but it was after she had just eaten and then played hopscotch about a dozen times! We don't think this vomiting was due to the chemotherapy because immediately after she threw up, she said she was hungry again and ate a plateful of baked ziti! Her energy levels remain high as well as her spirits.

She also got a visit from Annalise and Nathaniel today and the three of them played for a few hours this afternoon. In addition to the hopscotch, they played catch, played on the computer, and ran all around the pediatric unit.

Chemo Cycle 5 Begins

Isabella got her first dose of the last cycle of chemotherapy today, a four hour drip of carboplatin through her new port. It usually takes her a couple days or so before she begins feeling the effects. For now, she's feeling great and her appetite has been pretty good. So one day down, five more to go. Julianne stayed with Isabella last night and tonight, and it will be my shift tomorrow and Saturday. I don't know how we did this for four months before!

Getting Settled In

Once we got back to the Pediatrics unit, Isabella was so hungry she had a couple pudding cups. In this picture, she shows off her brown, pudding smile!
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Out of Surgery

Isabella is out of surgery and resting in the recovery room. The surgery went well, but she is feeling a bit achy. Her appetite is ok as she had a popsicle and some yogurt and is asking for more food. We are now just waiting to be transported to the Pediatric floor.

Last Day of School

Today, Isabella went to kindergarten for the last day. Her teachers and classmates gave her a small party and some gifts as she left.

But tomorrow, as her friends continue with the school year, Isabella returns to the hospital. There she will have surgery to replace the mediport in her chest with a different type of port. She will then receive chemotherapy through the port for 6 days beginning on Thursday. We will probably be in the hospital at least through the first week of June, as it will take that long for her blood counts to recover. For details on this chemo cycle, refer to the post Chemo Cycle 5 Details.

A Word from our Senator

I got the following response from Senator Lieberman regarding the National Childhood Brain Tumor Prevention Network Act. If you haven't contacted your representatives yet, there are links of to the right.

Dear Mr. Icatar:

Thank you for contacting me regarding your support for the National Childhood Brain Tumor Prevention Network Act (S. 305), which was introduced by Senators Charles Schumer (D-NY) and David Vitter (R-LA). Companion legislation (H.R. 653) was introduced in the U.S. House of Representatives by Representative Barbara Lee (D-CA). I support legislative efforts to promote biomedical research so that people can benefit from new treatments, and maybe even cures, for diseases.

As you may know, S. 305 would require the National Cancer Institute (NCI) at the National Institutes of Health (NIH) to establish a National Childhood Brain Tumor Prevention Network. This new network would be tasked with conducting and coordinating research, providing grants, and issuing guidance and recommendations from a panel of research experts with the ultimate goal of preventing and curing pediatric brain cancers.

I understand that very little is known about the causes of brain tumors in children and that the few risk factors that have been identified explain only a small fraction of all such cases. However, this disease clearly inflicts painful heartache on families and cuts short the lives of far too many children who suffer from brain tumors. According to NCI, brain tumors are the third most common type of childhood cancer, after leukemia and lymphoma. Tragically, however, unlike leukemia and lymphoma, childhood brain tumors do not have the same favorable prognosis. Each year, approximately 2,200 children and adolescents are diagnosed with malignant central nervous system disorders, over 90 percent of which are located within the brain. Sadly, children diagnosed with malignant brain tumors have only a 60-percent survival rate; and those who do survive have long-term health problems due to the invasiveness of brain tumors and their treatment.

I recognize that childhood brain tumors present a unique challenge for doctors and researchers since treatment options for children differ from treatment of brain tumors affecting adults. Despite the differences between brain cancers and other childhood cancers, as well as the differences better adult brain cancer and childhood brain cancer, NCI does not have a separate division dedicated to studying childhood brain tumors. The new National Childhood Brain Tumor Prevention Network set forth in S. 305 would help fill this gap in research and treatment, providing a much-needed resource for experts and doctors, as well as grant funding for research programs.

S. 305 is currently pending consideration by the Senate Committee on Health, Education, Labor, and Pensions. To keep track of future actions on this legislation, you can go to the "Bill Tracking" service at http://lieberman.senate.gov/issues/resources. Please be assured that I will continue to keep in mind your support for critical efforts to combat brain tumors in children. We must do all we can to provide NCI with the resources necessary to study and fight this terrible disease and provide new hope for all children to grow up and lead active, happy, and healthy lives.

Thank you again for sharing your views and concerns with me. I hope you will continue to visit my website at http://lieberman.senate.gov for updated news about my work on behalf of Connecticut and the nation. Please contact me if you have any additional questions or comments about our work in Congress.

Sincerely,


Joseph I. Lieberman
UNITED STATES SENATOR

Nothing New to Report

There's nothing new to report. Isabella has been and will be going to school this week and the beginning of next week. It is nice to return to a little bit of normalcy, even if only temporary for now. We are still scheduled to begin the final chemo cycle a week from today, after which we'll be in the hospital for several weeks. So for now, we're all enjoying being home together.

Chemo Cycle 5 Details

We finally got some details for Isabella's final cycle of chemotherapy. Cycle 5 is completely different from the first four cycles. This cycle begins with 3 days of carboplatin, followed by 3 days of thiotepa. Thiotepa is another anti-cancer drug that we have not used on Isabella yet. Due to the intense dosages that will be given over these 6 days, we will then reinject Isabella with her own stem cells that we collected from the previous cycles. The stem cells will help with the regeneration of her bone marrow and blood cells. Right now, we are scheduled to begin on May 13, when the port in her chest will be replaced with another type of access. On May 14 (a.k.a. Day -8), we will begin with the first dose of carboplatin. After the last dose of thiotepa on Day -3, there will be a two day wait. Then on Friday, May 22, Day 0, we will do the stem cell transplant.

The doctors estimate that it could take from 10-14 days for her counts to begin to recover (roughly around Day 11), during which we will be in isolation in the hospital room. Isolation means that we will have the room to ourselves (no roommates) and they will completely sanitize the room before we occupy. In addition, during the isolation period, all visitors will be required to wear gloves and masks while in the room.

But for now, Isabella is enjoying life at home. She will be continuing with school this week and next week. Last night, we enjoyed 31cent scoop night at Baskin and Robbins. And finally, she'll be able to watch her dad play some baseball a couple times before we have to go back to the hospital!

Going Home Today!

Isabella's white cell counts are high enough that she will be discharged from the hospital and going home today! Her platelets count is still low so she will get "topped off" before going home. Platelets are usually the last of the blood cells to recover from chemotherapy. This comes just in time for us to be able to enjoy the summer-like weather that we will have in CT where it is expected to be in the 70s and 80s all weekend!

Below are a couple pictures I've taken over the last week. They were taken with a cell phone, so they are a little grainy.

If you zoom into this picture of Isabella, you'll see that her hair is actually starting to grow back. It'll probably fall out again during the next chemo cycle, but we're curious to see if her hair grows back differently.


Remember way back when and Isabella wouldn't smile for any pictures? Here she is with Daddy with a nice big smile! I took this one myself, so it's a little blurry, but if you zoom in, you will also see that Isabella's two lower teeth that fell out are starting to grow back in.


And finally, isn't technology great? This picture shows Isabella in a video chat with Annalise. Even though Annalise and Nathaniel can't be here at the hospital, they can both still see her over the Internet through our web cameras. The kids have fun with the special effects that they apply to the picture and you can see Annalise put herself into a heart.

Not the News We Wanted to Hear

The results from the MRI show that although the tumor has shown no signs of progression, it has also not shrunk. This is really disappointing considering how well Isabella has been acting and responding to the treatments. If anything positive can be taken out of this it's that the tumor is stable and not growing rapidly, but the fact that the tumor is not responding to the chemotherapy is not good.

So for now, the plan is to continue with the last cycle of intense chemotherapy in two or three weeks. This will then be followed by the stem cell transplant from stem cells that we collected from her beforehand. Following the stem cell recovery, we will then proceed with radiation.

In the short term, Isabella may be able to go home on Wednesday or Thursday. Her white count has started to come up, so as soon as they are at an appropriate level, we will be able to go home.

Thanks to everyone who has taken time out to keep up with Isabella's progress. It's still nice to know that we are not going through this alone and that people all over the world are with us.