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.

View Full Album

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.