A Note From Camp Sunshine

One of the reasons that Camp Sunshine was such a tremendous success is that they have a large number of volunteer camp counselors.  These counselors are mainly teenagers and college students who committed a week of their summer to spend with kids.  There were two amazing things about the volunteers:  first, was the sheer numbers.  It seemed as if there was a dedicated counselor for each child.  Each child felt special because they had large chunks of time from the volunteers.  Second, the quality of these volunteers was tremendous.  All of the volunteers were genuinely attached to the kids and committed to making sure their time was special.  It choked me up on the final night of camp to see many of the volunteers crying, even though they were with the kids just a few days.

The note below is from Isabella’s favorite counselor.  She spent a lot of time with Isabella and was instrumental in making sure the camp recognized Isabella’s birthday.  You can tell from the note the quality person that she is – Isabella was definitely lucky to have her as her friend.

Hello!
   My name is __________ and I was a counselor at Camp Sunshine this summer.  I regret never introducing myself to you or your wife but maybe you remember me.  I had the pleasure of being an ages 6 to 8 counselor and was so blessed to have met your lovely daughter, Isabella.  I remember thinking how much she reminded me of myself, in that she takes a little while to open up to new people. I think that's why I immediately, in a way, attached myself to her because I am the same way.  I wanted to make sure that she had one of the most amazing weeks and hopefully she did :)

    Being that I am not a morning person, the mornings at Camp were considered very early in my mind.  But as the week progressed, I woke up every morning looking forward to seeing Isabella's half toothless smile and playing all sorts of fun games with her.  She beat me in everything we played; checkers, candy land, tether ball etc.  Isabella is one smart little girl.  When I found out that she would be celebrating her seventh birthday at Camp, I went to the lead 6 to 8 counselor and asked her if we could do something special for such a special girl.  So we made her a card that we got everyone to sign, and a birthday crown.  We even had our class sing to her during arts and crafts one day.  She lit up as we presented her with the birthday crown and the cutest smile spread across her face as all the attention was focused on her.  That is one of my favorite memories all week.

  Although there are countless other memories that I made during that week with Isabella at Camp, it would literally take me a few days to write them all down.  I can't really explain in words how it happened, but your daughter has truly changed my life.  Despite her situation, she always had a smile on her face and had a certain glow about her.  I am having trouble finding the right words to describe how much of an impact she made on me.  But I just wanted to take the time to let you know that I am thankful beyond words that I had the opportunity to meet your daughter.  She will always have a place in my heart and I will always be thinking about the fantastic memories we shared at Camp Sunshine.

   I signed up to follow your blog and have been receiving the updates.  I am praying for Isabella, as well as you and your family.  I have faith and hope in each day that a miracle will come. 

I attached some pictures that I took over the week at Camp, some with Isabella and I, and some with her and my friends.  But I thought that maybe you would enjoy seeing them.  In one of the pictures Isabella is drawing a picture...she asked me how to spell my name because she was drawing me and her holding hands.  I hung the picture on my wall because it makes me smile every time I see it (I also included a picture of it hanging on my wall.)

Happy Birthday Nathaniel!

Today is Isabella’s little brother’s third birthday!  Head over to our family web site to see a couple short videos for Nathaniel.

The Most Difficult Update Yet

This is probably the most difficult update that I’ve written yet, and sadly, will not be the most difficult I will have to write.  All of Isabella’s doctors believe that the spot in Isabella’s brain is recurrent tumor.  Any hopes we had that this was a mistake or that it was just scar tissue were dashed this week.  In cases of recurrent malignant brain tumors, there is no chance for cure.  Although there are treatment options that may help prolong Isabella’s life for maybe weeks or months, the cancer will eventually spread and kill Isabella. 

We received this news a couple of days ago and it’s taken a couple of days for us to come to grips with the news.  For the past month, even though we saw a bunch of signs that this indeed was recurrent, we at least had a slim glimmer of hope that it may be scar tissue.  But having the absolute certainty of this has been very difficult for us to deal with.  We don’t know how much time is left (personally, I don’t want to know), but the spot did grow slightly in the 4 weeks since we first saw it. 

I mentioned that there are treatment options available, but the thing that we need to consider is quality of life.  Is it worth it to put Isabella through several cycles of chemo for a few extra weeks or months?  Some parents on the support groups when faced with this decision decide to forego any further treatment so that their child can spend their last days happy and not sick and vomiting.  Others want to try everything knowing they may regret leaving an option untried that may have helped their child.  We’ll need to weigh our options soon and make the hardest decision we’ve ever had to make.

If anyone out there is holding onto a miracle, now would be a good time to use it. 

Camp Sunshine

Check out the picture slideshow and videos below from Camp Sunshine.  Camp Sunshine provides a place for children with life threatening diseases to get away with their families.  Each week, they host a different set of diseases, so that the families at camp are in similar situations.  So we went during brain tumor week and were able to meet other families going through the same thing.

Although it was difficult for Julianne and me to enjoy the week, it was well worth the visit as the kids had a great time.

Camp Sunshine - 2010 VIEW SLIDE SHOW DOWNLOAD ALL

 

This video shows the entire camp singing Happy Birthday to Isabella on her 7th birthday!

This video shows Isabella during the camp talent show!

Upcoming Scans

Well we made it back from Camp Sunshine and everyone had a blast.  I hope to post some pictures and videos from the incredible week that we had.  In the meantime, we have a couple scans scheduled for Isabella in the next couple of days.  On Sunday, August 14, we have a PET Scan scheduled that will hopefully provide some more insight into what the new spot in Isabella's brain is.  Then on Tuesday, we have another MRI scheduled which will show whether the spot has grown or not.

We do continue to hope that this is a giant mistake, but our hopes of that were diminished over the past week as Isabella displayed more weakness on her right side in both her hand and her feet.  This is usually a sign of some tumor activity.  But hopefully we'll know for sure in the next few days. 

I think the worst part in the last couple of weeks has been the uncertainty.  If we know definitively what is going on, at least we can formulate a plan.  Until then, all we can do is worry and wait.

Happy 7th Birthday Isabella!

Today is Isabella's 7th birthday. Right now, the family is up in Maine at Camp Sunshine (www.campsunshine.org) so we will be celebrating her birthday away from home. Sorry for the brevity of the post, but Internet coverage in the middle of the woods is pretty spotty. I hope to post full coverage with pictures of our week when we get back to civilization.

CHOP Update

Today, we drove down to Philadelphia to visit The Children's Hospital of Philadelphia (CHOP) to speak with another neuro-oncologist. We're hoping to get a fresh set of eyes to look at Isabella's case and hopefully offer up something that can help treat her. So far, most of the requests for second opinions haven't yielded anything useful so we were very eager to get to Philly when they agreed to at least talk with us. Our conversation with Dr. Philips basically had two major topics.

First off, he reiterated that Isabella's tumor is extremely rare and unique. Because of that, it is very difficult to decide on a treatment because there is just not enough historical data to say whether we should do this or do that. Dr. Philips is one of the leading authorities in the country and he has only seen 5 cases similar to Isabella. Five in 30+ years!

Secondly, we still don't know what is showing up on Isabella's scan. He remarked that he has rarely seen a recurrence in the area of the brain where Isabella's is so this lends some credence to the theory that this may just be radiation related scarring. (I should also mention that we heard from the Cincinnati doctor and he also believes that there is no recurrence.) So what he suggested was that we have another scan called a PET scan that will show a different view of the area and possibly provide better clues as to what is in there. He also suggested that we try a different type of MRI scan as well that could provide additional information.

So here is where we are. We're going to head back home and schedule a PET scan for as soon as possible which can reveal some clues as to what is in Isabella's head. If necessary, we will schedule a special MRI which may provide further data. We have another appointment to have a regular MRI in a couple weeks to see if there is any progression of what is there. We have no treatment plans as of yet because we still don't know if there's anything there to treat.

We're still clinging to the hope that this is not a recurrence, but we are still exploring options so that we are prepared just in case. More to come!

Locks of Love

Locks of Love is an organization that provides hairpieces to children who have lost their hair due to some medical condition. We were very fortunate with Isabella in that first of all, she completely did not care when her hair fell out during the chemotherapy.  Secondly, her hair came in so nicely afterwards, and as many of you can attest, has been super curly!

Several months ago, Annalise mentioned that she would like to get her haircut and donate her hair to Locks of Love.  Since they require at least 10 inches of hair, we had to wait a bit to let her hair grow so that it would still be about shoulder length after it was cut.  Well, today was the day she got her hair cut and we captured the entire event. 

Special thanks to Greg and Tony’s salon in Westport, CT who provide the service of cutting and shipping the hair free of charge!

Click on each picture to see a larger version.

Check out how long Annalise’s hair was!

Halfway gone!

Isabella poses with Annalise and her detached hair

Isabella goofs around and imagines what she would look like with longer hair!

Annalise – Before and After!

Check Your E-mail!

I noticed that many of you have used the subscribe feature of the web site over to the right.  This is the most convenient method to get an e-mail when we’ve posted something new without having to visit the site on a daily basis (although you can do that too!) 

Please be aware that the subscription registration process is a multi-step process.  Once you enter your e-mail address and click subscribe, the website will send you a confirmation e-mail message with a link.  You must click on the link in the message in order to begin receiving the website updates.  I’ve noticed a few e-mail addresses that have not yet been confirmed, so if you have not been receiving updates, register again and be sure to look out for the confirmation e-mail.

If you do not receive a confirmation e-mail, check your Junk Mail or Spam folder in case the message ended up there.  I apologize for the inconvenience, but I’ve got to play by the rules of the good folks hosting the website.

Thanks!

August 2nd Update

Well the first set of second opinions that we’ve gotten back aren’t very encouraging.  One high profile hospital responded that Isabella already received high doses of chemo during her treatment and that there was nothing more they could offer.  Most of the surgical options that we pursued agree that the tumor is non-resectable (although we are still following up with a doctor in Cincinnati that uses tiny balloons to remove tumors that were thought to be unresectable).  We are currently planning trips to Children’s Hospital of Philadelphia (CHOP) and possibly Duke who have agreed to perform a second opinion, but only if they can meet Isabella in person.

But what do we currently have as treatment options?

One of the latest advancements in brain cancer treatment is through the use of targeted vaccines.  With this treatment, a portion or all of the tumor is taken out and a vaccine is created based on the resected tumor.  This has shown great promise in adult trials, although unfortunately, they are just beginning trials in children.  There are several vaccine trials out there and we are pursuing them all.  Fortunately, portions of Isabella’s original tumor were frozen and kept at NYU and we are hoping that one of the trials would be able to use that tissue to create a vaccine.  However, we already know that one of the trials requires new tumor cells, and for better or worse, Isabella does not have enough tumor cells to be used (and we don’t even know if think it would be resectable anyway).  The other tricky part is that depending on the treatment/trial, the company can make the vaccine here in the United States, but we would have to go to another country to administer the vaccine.  Also, since this is also considered experimental, none of it would be covered by insurance.

There are also several alternative solutions that we’re looking into.  If you recall, we found a study that showed that a ketogenic diet (an extreme Atkins diet) was able to control the growth of cancer cells.  (Coincidentally, there is an article in today’s MSNBC that describes how cancer cells thrive and proliferate on fructose, a substance found in many common foods:  http://www.msnbc.msn.com/id/38528161/ns/health-cancer/). Unfortunately, Isabella was not able to handle that too well and we couldn’t follow the diet for too long, so we consider this a “last resort” option.  That doesn’t mean that we can’t alter our diets and we have already, reducing many of the preservatives and trying to go as natural as we can.

Finally, there is also the slimmest of slimmest of hope that this may not be recurrent tumor.  Our doctors at Mass General where Isabella received her radiation treatment suggested that we need to rule out necrosis, or scar tissue caused by radiation.  If you recall from one of my previous posts, it is very difficult to tell tumor from necrosis from a standard MRI.  So they have suggested that in two or three weeks, we go in for another MRI and see if and how the “spot” progresses.  We’re not holding out too much hope on this one since it is highly unlikely for scar tissue to just appear out of the blue, however, they did mention that on rare occasions, they have seen that.  Another option that we’ve considered is to have a surgeon go in and biopsy that spot to verify whether it is cancerous or not.

Thanks again for keeping up to date.  I know it’s not too fun reading about this kind of stuff.  We’re going to have some very difficult decisions in the next few weeks/months and it’s nice to know that we have so much support out there.

Weekend Getaway

First off, I’d like to thank everyone for your strong showing of support during this extremely difficult time.  Words can’t explain the appreciation that I feel for everyone who has supported us over the last almost two years.

After we heard the preliminary results from the MRI where they saw a suspicious spot and would take a few days to examine in more detail, we decided to getaway for the weekend.  We knew that we would go crazy if we just sat around the house and did nothing while waiting.  With the extreme heat blanketing the northeast, we decided we would need some water wherever we went.  We decided to spend a day at Lake Compounce and the next day at Coco Key Indoor Water Resort, both in middle Connecticut. 

Lake Compounce is a theme park that includes a water park area and an amusement park area.  During the hot day, we spent that time swimming in the lake.  Later in the afternoon and evening, we went over to the rides area and the kids had fun on all the rides. 

After we were thoroughly tired out from Lake Compounce, we made the 15 minute drive over to Coco Key and checked into our hotel (luckily getting the last available room!).  Coco Key Water Resort is an indoor water park that includes a giant play area for kids, a lazy river, and several tube slides.  We were glad to hit the parks in the order that we did because it was nice to be indoors after getting all the sun we got at the lake. 

All in all, the kids had a great time as we were able to get away for a couple days on our impromptu vacation.  Check out the picture slideshow below to see some of the highlights.

Weekend Getaway - July 2010 VIEW SLIDE SHOW DOWNLOAD ALL

Just Awful News

There’s really no way to sugarcoat this.  Isabella’s doctors believe that she has recurrent tumor in the thalamus area of the brain.  This area is considered to be inoperable.  Her doctor said that treating this will be very difficult because these are the cancer cells that survived the chemotherapy and radiation the first time around.

The hardest part of this is watching Isabella, who continues to function as a normal six year old girl.  Just from looking at her, you wouldn’t think that there was anything wrong with her.

Although Julianne and I have been hit pretty hard with the news, we’re not ready to throw in the towel yet, no matter how bleak it looks.  Ever since Isabella was first diagnosed, Julianne kept up with all the latest research and studies on brain cancer, knowing the high likelihood of recurrence.  When Isabella was showing clear scans, time was on our side and we were hoping that some research out there would find an ultimate cure.  But now, time is against us as we scramble to find a miracle.

So what are we doing now?  We’ve sent her scans and medical history out for second opinions to some of the country’s leading authorities on pediatric brain cancer.  We are looking at all types of treatment, whether it be surgery, chemotherapy, radiation, spiritual, homeopathy or a combination of all the above.  Since time is against us, we don’t have the luxury of trying one thing and seeing if that works, then trying the next thing. 

A “Suspicious Spot”

Isabella’s last MRI showed a new “suspicious spot” in her brain.  We are scheduling a follow-up MRI with a more detailed perfusion scan for early next week.  I really don’t have much else to write at this point…

Another MRI - July 2010

So Isabella went into the City again today for another MRI. I can't believe it's been another three months, but I guess time flies when you're having fun! We should have the results in a few days, but until then, enjoy this recent video of Isabella doing the Cha Cha Slide!

One Year Out From Stem Cell Transplant

It’s hard to believe that it’s been a year since Isabella received her stem cell transplant.   (You can review the blog post that we posted here:  http://isabella.icatar.com/2009/05/stem-cell-transplants.html).  Those days were extremely difficult as she had just received her last and strongest doses of chemotherapy and her immune system was pretty much obliterated.  We would be placed in an isolation room and all visitors would have to wear masks and gloves so that she wouldn’t get sick.  Isabella was so sick during those days that she had a morphine drip attached to her, and she would have to press a button to get some relief. 

But fortunately, Isabella recovered extremely fast.  In fact, the nurses and doctors said that Isabella was the fastest ever to recover.  We could have been in isolation in the pediatric unit for up to 2 months, but we ended up being home in less than 2 weeks!

The clinical trial that Isabella was part of (HeadStart) measures survivorship from the date of the stem cell transplant.  We’re hoping that we will be able to celebrate many more of these anniversaries for years to come.

Another Stable MRI! (4/10/2010)

We just got out of the meeting with Isabella’s oncologist and we are happy to report another stable MRI!  It’s easy to forget about our “situation” on a day-to-day basis, especially since Isabella appears and acts like a normal child.  And I don’t think “forget” is really the right work, because honestly, who can really forget about this?  It’s better to say that it’s easy to push this situation to the back of our consciousness when everything, at least on the outside looks normal.  So it’s back there in our minds, lingering and shows itself every once in a while.  Whether it’s when Isabella has a slightly crooked smile, or if her right hands struggles to do something (I’ll never forget seeing her hand tremble while holding a cup of water the day before she went to the hospital).  But for the most part, we go on with our daily lives.

But when Isabella’s cancer really is brought back to the spotlight is during these MRIs.  It’s like those tests that you took back in school, where you feel like you aced it, but there’s a little nagging part of you that just says “what-if?”  And that’s how it is for the days right before we learn the results.  What if?  I don’t know if we’ll ever get over that nervousness and anxiety as we wait for the results.

But that’s neither here nor there.  This time around, we’re still stable and we don’t have to worry about it for another 3 months.  On Wednesday, Isabella will have her mediport taken out of her chest.  If you recall, the mediport is a small device placed in the chest, just under the skin, and is a direct line right into the heart.  All of Isabella’s medications and some occasional blood draws would be done through the mediport.

The picture below is of Isabella in her Easter dress.  Go visit our family blog (www.icatar.com) for a few more pictures of the family.

See you next time!

Another MRI

We're currently at NYU and Isabella just got out of her MRI. We should have the results early next week.

The kids are out on vacation next week. During the break, Isabella will have her mediport taken out. This will mark another milestone for her, as we hope she'll never need to use it again.

So keep your fingers crossed! We'll report back in next week.
Sent via BlackBerry by AT&T

Another Tooth Bites the Dust

So it didn't take long for Isabella's loose tooth to fall out.  The Tooth Fairy is certainly logging the frequent flyer miles to our house.  At this point, I don't know how she eats anything, but she does!  And look at all that hair!

Have a great Easter weekend everyone!

Random Tidbits

As the saying goes, “No news is good news” and in our case that holds true to an extent.  Isabella has her next MRI in a couple weeks, when she will also get her mediport taken out.  But I thought I’d throw a couple nuggets out there to share with you in the meantime.

The kids got a free week of vacation last week as our town scrambled to recover from the wind and rain storms that tore down a bunch of trees and power lines.  Thankfully, we never lost power, but I can’t say the same about the rest of Norwalk, as some parts did not have power for several days.

Isabella lost a couple more teeth recently and has one more on the way out.  Annalise also lost a tooth recently, so you could say that the Tooth Fairy has been making many visits to our house.  In this picture, the girls show off their toothy smiles, and of course, Nathaniel had to jump into the picture!

Speaking of teeth, Isabella recently had a dentists appointment and was fortunate to be seen by a dentist who had done a study on the affect of chemotherapy and radiation on children’s teeth.  She mentioned that Isabella had the best teeth she has ever seen from a child that underwent chemo and radiation!  Yet another reason to be thankful.

You have got to see the kids sing Lady Gaga’s “Bad Romance” which we just recently downloaded for Rock Band!  Hopefully, I can get a video up soon!

Finally, I think we are all just about tired of winter and ready for spring (except maybe Nathaniel, who we cannot tear away from the Wii!).  My baseball team has been practicing indoors for a few weeks and we are eager to get outside.  Annalise is moving up to the next level of softball where they pitch to each other and play in real games.  And last, but not least, we just bought Isabella a brand new glove because she will start in the beginner’s softball league this year.  We spent some time outside to figure out whether she wants to throw with her left or right hand, and after practicing with each, she settled on throwing with “Mr. Righty”.  In the beginner’s league, the coaches pitch to the girls and they run the bases, but they do not count outs.  The fielders field the balls and practice throwing to the bases.

So, that’s it for now!  Check back in in a couple of weeks where we will hopefully (*cross fingers*) report another good MRI.

Livin' on a Prayer

As we head into the kids' winter vacation, I thought I'd post a quick update.  Isabella's "newest" favorite song is none other than Bon Jovi's "Livin' on a Prayer."  That's pretty funny considering the song came out almost a quarter of a century ago and I was still in high school!  (Boy, I just made myself feel old.) Jon Bon Jovi is still going pretty strong as he was just on an episode of 30 Rock and performed at the Grammy's, playing to Isabella's delight, Livin' on a Prayer! 

Anyway, here is a pretty cool rendition that we saw recently of Livin' on a Prayer by the group Face on the NBC show, The Sing Off.


And if you need to see how original Bon Jovi, here's the original music video.