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.

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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.

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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.

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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”.