Home from the ER

Thankfully, we are now home from the ER.  We thought that there was a good chance we'd have to stay at the hospital.  The chest X-ray did not show pneumonia and instead the doctors suspect that Isabella has some sort of viral infection, probably the same one that Nathaniel has, who has been sick the last couple of days.  Isabella is now on oxygen at home to help her breathe a little easier.  Since her body is working hard to fight off the viral infection, she has extra mucous in her throat which is making it difficult for her to breath.  In addition, the constant coughing tires her out.  We hope that the extra oxygen will just be temporary until her body can fight off whatever viral infection she has.

And even though Isabella has yet another tube sticking out of her, at least we're home now, after quite a scare earlier today.

At the NYU Emergency Room

Isabella has been doing ok this week, which surprised us when she had some serious breathing issues this morning. It worried us to the extent that we drove her into the ER at NYU. A chest xray shows that she has a slight pneumonia so they are treating her with antibiotics. I'll send out an update as we learn more, but as I mentioned earlier, any breathing issue is very serious for brain tumor patients.

Rainbows

In case you missed my Facebook post the other day, we were able to snap a picture of Isabella enjoying a rainbow after a recent sun shower.  It was nice to see her smile.

“Life is like a rainbow. You need both the sun and the rain to make its colors appear.”

Stronger

Isabella seems to be tolerating the feeding tube a little better in the last 24 hours.  She is not as raspy and labored as she breathes.  Of course, Julianne and I still listen closely and carefully through the night as Isabella sleeps to hear any oddness or disruptions.  It makes for some long nights, but there really is no other choice at this point.  Isabella has also tried solid foods, although very little, which is the first time since last week that she's tried solids.  She had some problems swallowing, but that is expected since she basically didn't have to swallow anything since she got the feeding tube.

Here is a picture of Isabella sitting out on our deck yesterday, enjoying the warm weather.  She had just received the beautiful flowers from her special friend.

Finally, here is a music video that a special kid made undergoing cancer treatment in Seattle. It's a little difficult for me to watch since it gives me flashbacks of walking around the pediatric floor at NYU, but maybe it will fill you with some inspiration and additional awareness.

Thanks for reading.

Feeding Tube Updates

So the feeding tube has been both good and bad.  It’s been good since we’ve been able to give Isabella some hydration and nutrition, especially since she hasn’t been able to eat or drink anything.  We’ve also been able to give her supplements through the NG-tube so she doesn’t have to swallow dozens of pills throughout the day.  The bad thing is that the tube has appeared to irritate her esophagus and or/airway, causing phlegm and inflammation which is making it difficult for her to breathe.  The doctor says that the irritation should go away within a few days, but it has been a few days and Isabella is still raspy.  We’ll give it another day or two, but we may opt to pull the NG-tube and put in the abdominal feeding tube.

So right now, our main concerns are her breathing and swallowing problems.  Our doctor says that brain tumor patients usually die of one of two breathing related issues.  If anything gets into Isabella’s lungs (whether it be food or drink or anything), she could get pneumonia and develop an infection.  Also this could be treated with antibiotics, her body may still be too weak to completely fight off the infection. Second, the tumor grows so much that it affects her breathing and basically tells her lungs to stop breathing.

Not surprisingly, Isabella hasn’t had much else to smile about either.  She spends most of the day either sleeping or sitting on the couch watching TV or listening to music.  If the weather permits, we may take her outside for a quick walk.  The other day, we did take her to a craft store to make an imprint of her hand in clay.  She seemed to enjoy that, so we can’t wait to get that back.  Here’s a picture of her getting her hand imprinted.

Feeding Tubes

As I mentioned, Isabella has just started having issues eating and drinking.  Since we are really concerned about dehydration (more so than the eating), we had a feeding tube inserted in her today.  There are two types of feeding tubes, one that is placed through the nose that goes down the esophagus and into the stomach.  The second type is inserted through the abdomen and connects directly to the stomach.  The latter requires surgery and we didn’t want to put Isabella through anesthesia and another surgery, so we opted for the one through the nose, otherwise known as an NG-tube.

The other good use of the NG-tube is that we can push supplements and medication through it.  Isabella has been swallowing up to 15 pills at one time and that has been increasingly more difficult as she’s had problems swallowing.  Now, we can mix  the medication in some liquid and push it through the tube directly into her stomach.

It’s not pretty, but it serves the purpose of getting liquids and supplements into Isabella.  We hear that after a day or so, the kids get used to having a tube running through their nose.  Isabella rarely complains about anything, but she does say that the tube feels weird.  The other good thing about the NG-tube is that we can remove it at anytime should we decide that it’s too uncomfortable or not worth the effort.

No Improvements

I'm sorry to report that Isabella hasn't shown any signs of improvement from the new medication, and has in fact declined markedly. We still have a few weeks of doses left so we'll finish those off since there's really nothing to lose by doing that. We've also started a couple new medications and hoping they do something.

There's really not much else to say. Isabella has great difficulty in eating and drinking and has just about no mobility on either side of her body. It's been pretty hard watching her go through this, especially recently.

My Birthday Wish

It’s difficult to celebrate or be festive on my birthday, especially when I see Isabella in her debilitated state.  Our joys have drastically been limited to things that many take for granted, for instance the few times that Isabella smiles or when she is able to take a sip from a straw or when she can take a bite of food without choking.

On top of that, there are kids dying all over the world, whether they are getting shot or succumbing to their sickness.  The boy that I wrote about a few weeks ago, Justin Alvarez, just died from his brain cancer.  On the night I found out about Justin, I gave Isabella an extra hug, saddened because I knew another mother and father would no longer be able to hug their own child.  Justin’s wake is tonight and his funeral is tomorrow.

So I can have some grandiose wishes for world peace, a functional government and a cure for cancer.  But perhaps I’ll keep my wish a little more modest.  I wish that Justin’s family finds peace among their friends and family, and comfort in knowing that Justin is no longer suffering.  I wish that Sebastian’s family finds peace among their friends and family, and comfort in knowing that Sebastian is no longer suffering.  I wish that Trayvon Martin’s family finds peace among their friends and family and that they find the closure and justice that they deserve.  (And if anyone is listening out there, a cure for cancer would be nice too.)

Quick Treatment Update

It's been about a month and a half now since we started the new treatment and I thought I'd give a quick update.  Basically, there isn't much to report.  We haven't noticed any marked improvements or drastic declines.  The doctor says that it may take up to three months before we see any signs that the treatment is working.  Isabella has some good days and some bad days.  Physically, she has grown a bit weaker.  We are hoping that this is due more to inactivity rather than tumor growth, so we are trying to perform exercises and stretches throughout the day.  We're also hoping that the winter is behind us and to get outside for more fresh air.

Another Electrifying Adventure

A couple weeks ago, a representative from the New York Hall of Science  contacted me after seeing Isabella’s article in the newspaper.  It happens that another member of the Electric Company, Shock who plays the resident beatboxer, was making an appearance at the hall and they were offering to have Isabella come and meet him.  Of course, we jumped at the chance.

When we arrived for the show, we were immediately treated as VIPs with free passes and front row seats.  After the show, there was a member’s only meet and greet with Shock.  But even though we didn’t have a membership, they did us one better with a private meeting with him!  We spent a few minutes chatting with him as he added his autograph to the board that contained the autographs of Lisa, Hector, and Jessica, and took a few pictures.  My favorite part of the visit was when Nathaniel beatboxed with him!  There’s a video below and although you can’t hear Nathaniel on the video, he was definitely holding his own with Shock!

Thanks again to the New York Hall of Science for making this trip possible and to Shock and his crew for taking a few minutes out of his day to bring this special treat to our family.  If you have a minute, check out his website and see some of the amazing sounds that come out of his mouth!

http://shockwavebeatbox.com/Welcome.html

The Norwalk Hour Article

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.

For 8-year-old Isabella, a dream comes true

Treatment Update

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".

Tucci Lumber Bat Co.

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!

Tucci Lumber Bat Co. Facebook Page

UPDATED: Rest In Peace, Sebastian

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.

Isabella’s Make-A-Wish Trip

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!

Isabella's Make-A-Wish Trip VIEW SLIDE SHOW DOWNLOAD ALL

Join Justin’s Fight

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.

Vineland boy battles brain cancer for second time

http://philadelphia.cbslocal.com/2012/01/24/brotherly-love-fighting-for-justin/

An Exciting, Electrifying Weekend Coming Up

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!

UPDATED: A Trip of Hope

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.

A New Year's Update

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.

The Post of Christmas Present

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.