This page was created to keep our family and friends up-to-date on Isabella's battle with brain cancer. She has completed her chemotherapy and physical therapy at NYU Medical Center in New York City. She has also completed her proton radiation treatment at Boston's Mass General Hospital. With her tremendous spirit and courage, along with all of our support, she will ultimately prevail.
About Isabella
From the day she was born, we knew that Isabella was a free-sprited, fun loving kid. She loves to do everything that a kid loves to do: play, sing, and dance. She is also extremely smart. Isabella has an older sister, Annalise, and a younger brother, Nathaniel.
On November 17, 2008, an MRI showed that Isabella had a massive 10 cm tumor in her brain, and it was promptly removed. It was diagnosed as a malignant glioma and underwent chemotherapy to try and remove the remaining cancer cells. She also underwent proton radiation therapy at Boston's Mass General Hospital.
So we were a little disappointed when we didn’t see Isabella’s article in Sunday’s newspaper. But late last night, her article went live on their website, and our disappointment turned completely around to surprise when we saw that she was on the front page of today’s newspaper! Not only that, but it’s a pretty deep article that continues to a full page inside the newspaper with a giant picture of Isabella! Here are a couple snapshots of the newspaper and a link to the online article.
I know a bunch of you are wondering what came of the treatment that Julianne brought back from Hungary. Well, for the past couple of weeks, we've been prepping to make sure that everything is in order before we gave the first dose. We had to make sure that we had some glycerine to give to Isabella, which is something that helps open the blood-brain-barrier to help make the treatment more effective in getting to the tumor. Second, we had to access Isabella's port ourselves at home (and by ourselves, I mean Julianne, of course). Accessing the port means sticking a giant needle through Isabella's chest. The treatment is administered through this port and goes directly to Isabella's heart and bloodstream and pumped to the rest of her body.
Finally, on Tuesday, we were ready to give Isabella her first dose. The Hungarian doctor warned us that Isabella may experience a few symptoms, varying from a mild fever to some edema, which is swelling in her brain. The swelling in her brain is caused by inflammation which can increase pressure to the rest of the brain and in extreme cases can cause death. He said that if a patient is responding to the treatment, we should see symptoms from 2 to 8 hours later. So we gave the first dose at around 4:30 on Tuesday. At around 1:00am, Isabella woke up in the middle of the night with a fever. She also had some weird shaking and trembling in her arms and legs. At first, we were excited because this was a good sign that Isabella was responding to the treatment, but as time went on, her fever got worse and her trembling got worse. We were only expecting a slight fever, but she had gotten up to 103, and we weren't expecting any neurologic symptoms at all, so the trembling was especially troubling. Isabella also felt terrible and we all stayed awake for most of the rest of the night into the next morning when Isabella finally got to sleep. We were so worried about the shaking that at one point, we were considering bring her into the hospital to treat her with steroids to try and reduce the swelling and pressure in her head.
But things calmed down and Isabella was able to rest most of the day on Wednesday. We got in touch with the Hungarian doctor who mentioned that since she had such an extreme response, we would administer the rest of the doses at a reduced level so that her side effects wouldn't be so severe. He also said to wait until all of her symptoms had subsided before we give the next dose, which will probably be today, since Isabella has started to feel better.
So that's where we are. We still have several months of doses to give. In a few months, we'll go in for an MRI and see if there is any change in tumor size. Hopefully, we'll have a good idea before then if some of Isabella's neurologic deficiencies improve (such as her right sided weakness or speaking).
Also, for those of you in Norwalk, be sure to grab a copy of this Sunday's Norwalk Hour newspaper. They will be running an article on Isabella's Make-A-Wish trip. Don't worry if you're not from around here. I'll post a link to their website once it's up.
Here is Isabella in her purple outfit, with her purple headband, sitting on her purple blanket, with her purple teddy bear that she named "Purplebella".
You may be asking yourself what baseball bats have to do with Isabella. Well let me explain. As some of you may know, I began playing fast pitch baseball again a few years ago after a nearly 20 year absence from the game. It’s a wood bat league, so every now and then, I have to get a new bat because the wood bats break. Last year, I heard that one of the guys in our league, Pete Tucci, started his own bat company here in Norwalk so I thought I’d throw some support over to a local business.
Recently, I went over to the store and placed my order for my custom bat, complete with my choice of size, weight, knob, barrel size, color, and engraving! Imagine my surprise when I went to pick up my bat and he not only had my bat ready, but he also made custom bats for Annalise, Isabella, and Nathaniel. Now, they have their own bats just like Daddy!
The last few weeks have been pretty rough, with Isabella’s decline and Sebastian’s death among other things. I know Pete probably doesn’t think that making a couple of bats would have such an impact, but it’s these little random acts of kindness that can really help perk someone up. Never underestimate the power of every little act of kindness, whether it’s a simple smile, or a thank you, or making a bunch of bats!
So, if you are in the market for a bat, be sure to check out Pete’s website (www.tlbats.com) or check out his store here in Norwalk. He not only creates bats for baseball and softball, but also promotional and souvenir bats.
And even if you’re not looking for a bat, stop by his Facebook page and let him know his actions have not gone unnoticed. Remember, don’t underestimate the power of simple kindness!
I am extremely saddened to pass on the news that Sebastian lost his battle with cancer tonight. Sebastian lived next door to us and was in Isabella's class. Words can't possibly describe the grief that his family must be feeling now. I just pray that they find the strength in family and friends. Rest in peace, Sebastian.
UPDATED 2/4/12
They had a beautiful ceremony after the funeral where they released dozens of white balloons in the air to honor Sebastian. Here's a snapshot at the church.
Today, we went on Isabella’s long awaited Make-A-Wish trip. She chose to meet the cast of the Electric Company which is one of her favorite shows on TV.
The day started off when the limo arrived at our house at 10am. Since the kids have never ridden in a limo before, this alone would have made for a special trip, but this was just the beginning. We arrived at Max Brenner's restaurant just before noon and waited for the three members of the Electric Company to arrive. While we waited, we meandered about the lobby/gift shop looking at the vast expanse of chocolate related paraphernalia. One apron proclaimed, “Chocolate is good for you”. My favorite was a Chocolate “First Aid” kit from the “Brown Cross”, for those chocolate emergencies.
The first cast member to arrive was Jenni Barber, who plays Lisa. At first we didn’t recognize her when she walked in the door, but as she came over to greet us, we could tell instantly who she was. Next, Priscilla Diaz, who plays Jessica, walked in and shortly thereafter, Josh Segarra, who plays Hector, arrived. We exchanged greetings and Isabella couldn’t hide her complete excitement. It was a pretty surreal moment since we were just watching these three characters on TV yesterday, and now, here they were right in front of us!
We sat down for lunch and chatted about the show and about our favorite songs and episodes. Since the show films during the summer, it was interesting to hear that Jenni, Priscilla and Josh had not actually seen each other in a while so it was a sort of reunion for them as well. The conversation flowed freely and the three of them were so nice and down to earth!
The most exciting time of the lunch was when the three of them made Isabella an actual member of the Electric Company! She had to first agree to the terms of becoming a member, then they presented her a certificate to prove her membership! Afterwards, they serenaded her to one of her favorite songs “Silent E”.
As lunch wound down, we took a bunch of pictures with them and they also signed a bunch of things for us. We said our goodbyes, and although our time with the Electric Company was done, our Make-A-Wish day was not done yet.
Isabella was pretty tired after the brunch and fell asleep in the limo. We decided to let her sleep and while she slept, we went to Toys R Us at Times Square and rode the giant indoor Ferris Wheel with Annalise and Nathaniel. By the time we got out of Toys R Us, Isabella was up again, so we went to Central Park and took a nice horse drawn carriage ride around the park.
After the ride through Central Park, we jumped back into the limo and went over to Dylan’s Candy Bar, which is a candy store made up of three floors of candy. We went over to the fondue station and picked up some chocolate covered strawberries, pineapples, and rice krispy treats. Yummy!
After a full day of sweets, we were pretty much done for the day and headed home.
Special thanks to our friends at Make-A-Wish for putting all of this together. And of course, a special thanks to Jenni, Priscilla, and Josh for taking the time to meet with Isabella. This was truly special for everyone, especially Isabella.
Please see the slideshow below for complete coverage of our trip and tons more pictures!
Back in 2010, we visited Camp Sunshine which is a place where families with sick children go to get away for a week. They have “theme” weeks, so we went during brain tumor week and met many other families that are going through everything that we are going through. During the week we met a couple other families that had a similar tumor that Isabella has and sorta bonded with them since we all had very similar stories to tell. My favorite memories from that week were sitting around an impromptu camp fire with them, roasting marshmallows, and making (what else?) s’mores. My not-so-favorite moment was singing karaoke with them in front of all the other parents, but that speaks more to my lack-of-talent, rather than the fun (which it was)!
Unfortunately, since that time, one of the boys in our group has already died. Another boy, Justin, recently relapsed and is undergoing further treatments. It breaks my heart to see another family going through what we have been going through recently, but at the same time, seeing their strength is uplifting and inspirational. On some days, I barely have enough energy to make it through the day, but somehow, this family is holding events and fundraisers to raise awareness and build a community and support structure around Justin.
Since Julianne is part of a bunch of support forums online and we get news alerts from anything brain tumor related, we are constantly hearing of other children fighting for their lives or losing their battle. But it’s different when you actually know the people being affected. Sure, we only met for a week, but it was enough to establish an emotional connection and reinforce to us that we’re not alone or the only ones fighting.
If you have a few moments, I urge you to visit their Facebook page (Join Justin’s Fight) and maybe drop a word of encouragement, as many of you have done with Isabella.
You can also read up about them with some recent news articles.
One of the reasons that Julianne rushed to go to Hungary and come right back is that we have a very special weekend coming up. For a while now, we’ve been working with the Connecticut Chapter of the Make-A-Wish foundation to plan something for Isabella. For those not aware, the Make-A-Wish foundation grants all sorts of wishes to children suffering from life-threatening diseases.
Due to her communication problems, it’s been difficult trying to determine what kind of wish we could grant. We wanted to grant her something that we normally wouldn’t be able to provide her. So while some kids take a trip somewhere, that’s something that we’d be able to provide. We wanted to use the Make-A-Wish foundation to give her something truly special that would be beyond our means. One of her wishes was to meet Taylor Swift, but her people said that she wouldn’t be available for several months. One day, while Isabella was sitting and watching TV, we came up with the idea to meet the characters of one of her favorite shows, The Electric Company.
Now for those our age, you probably remember watching The Electric Company, and if you don’t have kids, you may not realize that they recently remade the show with a fresh cast and theme. All of our kids love watching the show, so it was a natural fit for everyone.
So for this weekend, the Make-A-Wish crew planned out a super special weekend for us. First, a stretch limo will be picking up our family at our house and driving us into New York City where we will have lunch with three of Isabella’s favorite cast members. We’ll be eating at Max Brenner restaurant, a restaurant that specializes in chocolate (how perfect is that?). They also provided some spending money for the kids to spend at Dylan’s Candy Shop, or anywhere else that we’d like the driver to take us! While in the city, we may do a horse carriage ride through Central Park or some other touristy thing. Anyone have any suggestions?
We’re all pretty excited, especially Isabella. Here’s a picture of her with a custom Electric Company cake that the volunteers brought over to our house.
Also, here’s the intro song to The Electric Company and you can see they’ve totally modernized it!
As I type this, Julianne is somewhere over the Atlantic on her way to Hungary. I'll let that sink in a little bit. Yes, I said Budapest, Hungary. She is on her way there to pick up some experimental treatment for Isabella that is not currently available in the United States. As I mentioned a couple days ago, I don't think traditional medicine has much more to offer us and Julianne has been researching all sorts of other treatments that have shown promise in other parts of the world. This particular treatment she is on the way to get has shown remarkable progress in treating cancers and although it has been used in a limited number of brain tumors, almost 50% of those treated have shown significant response. Two days ago, we decided that it was worth a shot and planned the entire trip then.
Obviously, there are a bunch of risks involved with this, but when you are placed in a desperate situation, you weigh your risks and outcomes. For instance, we don't have the safety net of the FDA or a set of clinical trials to validate the claims of the medicine or the luxury of insurance covering the cost. Heck, we don't even know if the medicine we receive will be nothing but tap water. But that's where we are.
At least we still have a little bit of hope to cling to.
UPDATE (1/22, 6:30pm ET)
Julianne arrived safely in Budapest and has already met with the doctor to ask questions and stuff. He will be delivering the medicine to Julianne tomorrow night and she will fly out the following morning. Julianne should be home Tuesday afternoon. Thanks to all who've checked in. We know chances are still slim that this will do anything, but as they say, some hope is better than no hope.
Geez. We're already more than half way through January and I realized that I hadn't posted in a while. So, first off, Happy New Year. Our family spent a quiet new year's at home without much hoopla. The euphoria of the holidays has given way to the dreariness of a snow-less winter.
Weather aside, the last couple of weeks have been pretty difficult. Isabella has steadily declined. She now finds it very difficult to stand up, much less walk. We are now looking into a pediatric wheelchair since she has outgrown the old toddler strollers that we have been using. She also cannot talk aside from some slight whimpering or mumbling. Sometimes, with some great effort, she may say a word, but usually, it's just a cry of frustration as we try to guess what she's trying to say. It breaks me up to think that I'll never hear her voice again. She no longer has any control of her bladder and needs to wear a pull-up at all times. Her left eye has started to droop, and with the weakness on the right side of her face, her right eye stays open wider than her left eye giving her an eerie and asymmetric stare. Her left hand has gotten weaker as well as it now shakes when she holds a glass of water. If you recall from one of my first posts, the first sign that we saw before Isabella was diagnosed was her hand trembled trying to drink a glass of water. Along with increased weakness of her left leg, this probably indicates tumor spread to the other hemisphere of her brain.
Up until the last couple of days, her mood has been decent, and she would still laugh and hum along with a song. But that stopped just recently. I'm not sure if that is because of the medicine and supplements that we are giving her of if she is just starting to feel more and more tired. Her overall energy level is gone as she no longer has the strength or desire to leave the couch. Again, I can't stand the thought of never hearing her laugh again.
We're still on a low dose of chemotherapy along with a bunch of naturopathic supplements. But honestly, I don't think that traditional medicine has much more to offer. It really is agonizing to watch Isabella have to go through all this. It's also tough on the rest of the family as we try just to make it through each day. I can't even put into words what Julianne is feeling, and it's certainly not fair to either Annalise or Nathaniel as they try to have a normal childhood.
I wish I had better news to report, but I just wanted to get something out there. I know a lot of people are still following and don't want to "bug" me for updates, but know that we do appreciate the support. Thank you for reading.
As we head into the Christmas weekend, I’d like to take this time to wish everyone a Merry Christmas and a Happy Hanukkah. At the risk of jinxing it again, Isabella has been doing pretty well the last few days. She’s even felt good enough to go to school the last two days to take part in some of the classroom festivities before the break. She hasn’t been to school two days in a row in a long time, and this was also the first day in a long time where all three kids were at school.
So we do have a bunch of things to be thankful for, the first of which is that we’ll be able to spend at least another Christmas together. Even as recent as a few weeks ago, we weren’t sure we’d be able to do that. But here we are and we’re surely going to enjoy it.
We hope that you will also enjoy this blessed holiday.
One of our Christmas traditions is that we buy a new ornament every year with our names on it. I guess eventually our tree will just be covered with only our custom ornaments commemorating all the years. So join me on a trip back in time as we visit our ornaments of Christmas past, and as a bonus, I’ll reveal our brand new 2011 ornament!
Self explanatory, the one that started it all, circa 1997
Our first Christmas in Norwalk in 2001
Isabella's first Christmas in 2003
Our cat, Cleo, gets a spot on the ornament in 2006
I couldn't find our 2007 ornament, so here is 2008 with everyone on it
Today, we received a surprise visit from Santa Claus, who took some time out from what is certainly his busiest time of the year. He brought presents for everyone, including us big kids. It was an amazing visit and the kids didn’t stop smiling the entire time. In fact, hours after Santa left, Nathaniel was still proclaiming “That was AMAZING!”
Special thanks to the Marvin PTO and the Norwalk Fire Department for making this visit possible. We don’t know what kind of strings one has to pull to get a special visit from St. Nick, but we certainly appreciate it from the bottom of our hearts.
Below are a video and few pictures from the visit and we welcome you to share in this magical event.
Isabella greets Santa with a hug!
Santa gives Isabella her first present. A stuffed puppy!
Nathaniel greets Santa in his own way, with a high five!
Santa hands out even more presents.
Santa commented that he never gets to watch anyone open their presents so this was special for him too.
The aftermath. The house looked like the day after Christmas.
I was also thinking of titling this blog post “Did I Jinx It?”. Yesterday, I posted about how well Isabella has been doing, but today, she woke up vomiting and breathing weirdly. After about an hour or so, she settled down and was able to get back to sleep and breathed normally, but this little episode got us upset. Since her tumor is in an area that affects her breathing, we immediately suspected that the tumor had grown to a critical mass that her breathing was being affected. Isabella was originally planning on going on a field trip with her class today. Instead, we called our doctor and made plans to go into NYC to have her looked at.
Surprisingly, Isabella started feeling better on the way to NYC and actually felt pretty good when we got to the children's clinic. She even smiled for the nurses and cooperated with no complaints as they took her vitals. Since she hasn’t eaten or drank much the last couple of days, they also hydrated her and checked her blood counts.
When we finally met the doctor, she also commented on how good Isabella looked. She was expecting her to look much worse with how we had described her breathing and vomiting. She thinks the breathing episode is probably tumor related. If the existing treatments don’t work at curbing the tumor growth, eventually, Isabella’s brain will tell her to stop breathing and she’ll die. It won’t be a sudden thing, but maybe something that will deteriorate over the course of several days or weeks.
Was this the start of that? We won’t know for several days (or maybe even weeks), but we’ll be watching her closely to look for signs. In the meantime, we’ll continue with the low dose chemo treatments until we’re sure they’re not effective or if they begin causing more harmful side effects.
So right now, Isabella is sitting on my lap and watching Toy Story 3. These are the moments that I want to enjoy at the time, instead of worrying about the uncertain future.
Isabella has felt better over the last couple of days. She’s actually been able to walk around the house (with assistance) and has been able to go up stairs (again, with assistance). Her speaking has also improved somewhat as she tries to speak sentences now, although it is still difficult to understand what she is trying to say. This usually leads to a lot of crying since she gets frustrated at not being able to communicate, but we’ve gotten better in trying to figure out what she is trying to say. We’ve thought about using picture boards so she can point to common requests (hungry, thirsty, bathroom, etc.) but just like with muscles, we want to encourage her to speak so that she doesn’t lose the ability completely.
Treatment-wise, Isabella is on a low dose chemo regimen. With the low dose chemo, we don’t have to spend a week in the hospital and we don’t suffer from some of the more serious side effects, such as neutropenia (low blood counts) and hair loss. In fact, Isabella’s hair has grown in nicely and is starting to develop their representative curls. We still have her on a minimal dose of steroids to minimize the effects of swelling in her brain, but we hope to taper her completely off the steroids soon. Tapering off steroids needs to be done in a slow and controlled manner, otherwise Isabella could have severe reactions. A couple of times when we dropped the steroid dose, Isabella began to exhibit some neurological symptoms (not being able to walk, talk, etc.) until we raised the dosage.
Over the last couple weeks, we’ve kept busy around the house. We took advantage of the great Fall weather here in CT and repainted the front porch and railings, which were in bad need of a refresher. We also got a head start on Christmas and decorated the outside of our house. I believe this is the earliest we’ve ever had our house decorated. We’re going to wait until this weekend for the tree since we don’t want it to dry up and die before Christmas.
Speaking of the great weather, we spent one last night roasting marshmallows before we prepped the deck for the winter. Here’s a picture of us sitting on the deck.
(TIP! Sometimes, I post photos and quick updates to Facebook that don’t necessarily require a full blog post. To get those updates, go to www.facebook.com/icatar and click Subscribe. You don’t have to “friend” me, I won’t be insulted. )
Last year, in my “Two Years Later” post, I said that I would be ecstatic if I were able to write a “Three Years Later” post. Well here we are, three years later. And although I’m thankful that Isabella is still with us, I wouldn’t necessarily say that I’m ecstatic. It’s very difficult to see Isabella in her current state, hardly able to move or talk. It’s not fair for a child to go through what she’s going through. Sometimes I question whether we are trying to prolong her life for her benefit or selfishly for our own benefit, and whether the treatments are worth it.
I’ll close out this brief post with a profound quote I recently came across. It really hit close to home:
We must be willing to let go of the life we planned, so as to have the life that is waiting for us. – Joseph Campbell
Updated: 10:18pm
So Isabella actually had a pretty good day today. She had a visit from a therapy dog which she always enjoys. She then went and swam at the pool at the Y. Now of course she doesn’t actually swim, but just sort of floats around the pool, but it still has to make her feel better since the water help support her weight.
Isabella hasn’t had much too smile about lately, so we haven’t taken many pictures, but we got a couple today. Notice Isabella’s hair growing in nicely and her chubby cheeks! This is us living our life that is waiting for us!
Also, here’s a picture of Charlie, hard at work at school for Isabella!
Isabella has continued to weaken over the last week or so. She can no longer go up and down steps and can only walk a few steps at a time. Her speaking has also become much more labored as she can only get out single words and those are typically hard to understand. She also no longer has any energy to go to school, so she just sits at home and watches TV. It is very difficult to get her out of the house, but we try to even just to get her a bit of exercise and fresh air.
We've started getting ready for Christmas at our house, but at this point, it's looking to be a pretty somber, if not completely tragic Christmas.
Happy Halloween everyone! Because the snowstorm in the Northeast brought down a bunch of trees and power lines, many towns in the area including Norwalk decided to postpone trick-or-treating. So we decided to go down to Stamford where trick-or-treating was in full force (and the best part is that we'll be able to do it all again on Saturday here in Norwalk!)
Isabella has been battling a cough for a couple days and didn't feel like trick-or-treating. Fortunately for her, Annalise and Nathaniel were more than willing to go out and get candy for her. Here are a couple pictures from our Halloween shenanigans (click on them for a larger view).
This is not after trick-or-treating! Nathaniel took a quick nap beforehand!
Bacon and eggs!
Annalise and Nathaniel trick-or-treating.
Isabella, Annalise, and Nathaniel split up their loot.
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