Farewell Summer

Traditionally, the Labor Day weekend marks the unofficial end of Summer.  To say farewell to summer, we decided to rent a bounce house and ended up picking the Disney Princess 5-in-1 Combo bounce house.  I must say that it was one of the best investments we’ve made as the adults had just as much enjoyment from it than the kids!  Here are a few picture and a video of our fun weekend.

Roneil gets some help from the kids to position the castle in the yard.

The fully inflated castle was huge!

Isabella poses before heading down the slide.

Air Annalise gets some hang time on the basketball hoop.

Grandpa and Isabella get some rest from bouncing.

Grandpa, Isabella and Annalise get ready to slide.

Roneil and Julianne get their share of jumping in the castle.

Helmet Zapping Brain Tumors

With the poor prognosis for most brain tumors, it is apparent that researchers will have to start thinking “outside the box” to start getting better results.  A company from Israel has recently developed a device that uses electricity to kill tumor cells.  The patient wears a helmet made of electrodes that bathes the cancer in a faint electric field and prevents them from multiplying while sparing healthy cells.  Some of the downsides include having to shave your head frequently to ensure skin contact, having to wear the device for 20 hours per day (and carry around the 6 lbs. battery pack), and oh yeah – it costs $10,000-$15,000 per month to use.  An initial study shows that patients lived 7.8 months as opposed to 6.1 months, which doesn’t sound that great, but who knows – they can tweak the treatments or it may lead to new treatments.

The device is not yet approved for use in the US, but they do have approval in Europe.

Check out the whole article here.

Treating Brain Tumors

(Portions of this note are excerpts from the National Cancer Institute page on Pediatric Brain Cancer.)
There are three standard treatment methods for brain tumors:  surgery, radiation, and chemotherapy.  A patients oncologist will work with them to determine if they will use one or a combination of the different therapies.  Each one has their own advantages and disadvantages that need to be examined before a treatment plan can be developed.

Surgery

Surgery is when a neurosurgeon goes in and physically removes the tumor from the head.  Surgery is the fastest way to remove a massive bulk of the tissue and is usually the first treatment used.  In some cases of benign tumors, there is no further need for additional treatment.  Even in cases of malignant (or cancerous) tumors, a complete resection vastly increases the chances of long term survival.  The obvious disadvantage of surgery is the possibility of damaging good tissue which could result in loss of functions or even death.  Also, there are certain areas of the brain that are inoperable due to the risk of damaging critical functions such as breathing.
Here is a link to a video of a brain tumor removal.

Radiation

Radiation therapy uses X-rays or some other radiation to kill cancer cells or keep them from growing.  Unfortunately, radiation does not distinguish between good cells and tumor cells so there are some side-effects.  Short term, the patient may experience nausea, redness around the treatment site, and loss of hair.  Long term, children may have growth and other developmental problems.  Because of this, researchers are looking for ways to minimize the effects of radiation. 
One of these relatively new methods is the use of proton radiation.  Proton radiation uses a highly focused beam of energy to eliminate the “scatter” of traditional radiation.  This scatter is what causes many of the long term effects.
Check out this CBS news article which describes proton radiation and look for Dr. Peter Philips who we’ve consulted with at Children’s Hospital of Philadelphia.
http://www.cbsnews.com/video/watch/?id=6522160n

Chemotherapy

Chemotherapy uses one or more drugs to kill cancer cells or prevent their growth.  The drugs can be administered either orally or intravenously.  (I just had a flashback to trying to teach Isabella how to swallow pills when she was going through her chemotherapy.)   There are many different types of chemotherapy drugs and each work differently and against different tumor types.  Chemotherapy is usually administered in cycles.  One of the biggest hurdles of chemotherapy for treating brain cancer is the challenge of the drugs to pass the the blood-brain-barrier (BBB), which is the body’s natural defense to protect the brain.
Although the long term effects of chemotherapy are relatively few, the short term effects range from mild to fairly serious.  For example, chemotherapy can cause someone’s hair to fall out, nausea, and suppression of the immunity system which would make the patient susceptible to infections.
Isabella was treated with all three methods for her cancer.  First, the neurosurgeon removed the 10cm tumor from her head which removed 95% of the tumor.  Then, she got chemotherapy for several months in the HeadStart clinical trial.  Finally, she received the proton radiation at Mass General Hospital, which is only one of 7 proton radiation centers in the country.
In upcoming articles, I will be describing alternative and new treatment options for brain cancer.

Hyundai Hope On Wheels

I was amazed to see this commercial on prime time TV tonight.  It’s the first time I’ve ever seen (or noticed) anything on TV that mentioned Pediatric Cancer Awareness Month.

Hyundai Hope on Wheels

The State of Pediatric Cancer Research Funding

Check out this article that describes the realities of research funding for pediatric cancers.  Some of these facts are really disturbing.  The only way we are going to improve survival rates is through research and the amount of money going to research is so disproportionately low compared to adult cancers, it’s no wonder that survival rates for children has remained relatively flat.

• The National Cancer Institute (NCI), which is part of the US Department of Health, has a $4.8 billion budget.  Of that, $173 million, or just over 3% is given to research for pediatric cancer.
• The American Cancer Society, the largest charitable organization dedicated to cancer support received $1 billion in donations.  Of that, only $4 million, or less than half a percent went to pediatric cancer research.
• Note that this money is for ALL pediatric cancers, so the amount going for brain cancer research is just a percentage of that.
• Pharmaceutical companies have little incentive to develop treatments for children due to the relatively small target population.

Brain Tumor Symptoms

The following symptoms for brain tumors are from the National Cancer Institute.

• Morning headache or headache that goes away after vomiting.
• Frequent nausea and vomiting.
• Vision, hearing, and speech problems.
• Loss of balance and trouble walking.
• Unusual sleepiness or change in activity level.
• Unusual changes in personality or behavior.
• Seizures.
• Increase in the head size (in infants).

Several months before Isabella was diagnosed, she would wake up with severe headaches, sometimes vomiting.  It happened frequently enough that Julianne would track when it happened so we could report it to the pediatrician.  The pediatrician informed us that migraine headaches were common in children, and after a while, the headaches went away.  We didn’t notice anything new for months until the day before Isabella was diagnosed when we saw the weakness in her right hand. 

Unfortunately, the symptoms for brain tumors are fairly common and can be caused by many other things.  Since brain tumors are so uncommon, they are rarely diagnosed right away and are seldom the first thing that a doctor will think of.  While we were at Camp Sunshine, we shared many stories with other families who were misdiagnosed for a while before the brain tumor was diagnosed.

The key to brain tumor survival is all in the timing.  If a tumor can be found early enough, there is a higher chance that it can be fully resected before it turns malignant and spreads.  I hope and pray that if you are a parent and you notice any of these symptoms in your child, that it turns out to be something simple.   But in any case, please don’t ignore any of these symptoms should you see them.

Back to School

Today, Isabella started second grade and Annalise started fifth grade.  Nathaniel, who just turned three, can’t wait to go to school, as you can tell from the picture below where the kids are waiting for the bus.

Facts About Pediatric Brain Tumors

As part of Pediatric Cancer Awareness Month, I am posting some sobering facts about pediatric brain tumors.  This information is borrowed from the Pediatric Brain Tumor Foundation, an organization that supports the search for the cause of and cure for childhood brain tumors.  Thank you for taking the time to read this.

• More than 612,000 people in the U. S. are living with a diagnosis of a primary brain or central nervous system tumor.
• 28,000 children in the U.S. are living with the diagnosis of a primary brain tumor.
• Each year 3,750 more children—10 each day—are diagnosed with a pediatric brain tumor in the U.S.
• 76 percent of children diagnosed with a brain tumor are younger than 15.
• Brain tumors are the deadliest form of childhood cancer. Brain stem gliomas, atypical teratoid/rhabdoid and glioblastoma multiforme have survival rates of less than 20 percent.
• Non-malignant/benign brain tumors can kill children if their location in the brain prevents surgical removal or other curative treatments.
• There are 130 different types of brain tumors, making diagnosis and treatment very difficult.
• Pediatric brain tumors aren’t like those in adults. Children’s brain tumors require specific research and different treatments.
• Even though survival rates for some childhood brain tumors have increased over the past 30 years, survivors often suffer from lifelong side effects of treatments such as surgery, radiation and chemotherapy.
• Brain tumors are located in children’s control center of thought, emotion and movement, often resulting in long-term side effects. Survivors can have physical, learning and emotional challenges that will limit the quality of their lives into adulthood.
• Research that focuses specifically on pediatric brain tumors is crucial to saving children’s lives and improving survivors’ quality of life.

Pediatric Cancer Awareness Month

September is Pediatric Cancer Awareness Month.  Last year, I missed it.  This year, I almost missed it again, which goes to show how woefully unaware society is when it comes to pediatric cancer.  To help raise awareness, I will be making several posts over the course of the month that will provide some information regarding pediatric cancer (and more specifically, brain cancer).  I don’t know if I’ll have 30 days worth of stuff, but I’ll be able to write something up most of the days.

August 27th Update

One of the things that I did not want this blog to become is a depressing destination. Like I mentioned in the previous post, we need to spend our days enjoying life while we can. That applies not just to our family, but to all of you as well. I do think it was important for the previous posts to convey the gravity of our situation, but I have no intention in making this blog a eulogy. On the contrary, this blog will continue to celebrate Isabella's life. We will continue to provide updates as appropriate and other pertinent information to spread more knowledge about pediatric brain cancer. With that said, I can't guarantee there won't be the occasional rant or stress release post ;) .

And with that, we do have some updates.

In the previous post, I mentioned that we felt that our doctors have given up on Isabella. However, this wasn't completely true as her primary oncologist is actively working on a few treatment options. We'll have to weigh these options soon and even though we don't quite know what we're doing yet, we take some comfort and relief that things are being done.

Since most of the options involve chemotherapy, we have scheduled Isabella to have another mediport put in her chest. The mediport is a central line that allows medication to be injected directly to the blood stream and also facilitates blood draws without having to poke her arm over and over. This is such a shame, too, since we just had her mediport removed in April.

Finally, Isabella starts up school again next week and she is super excited to go back. Today, we met with her new teacher and other school staff just to go over some of the precautions and logistics for Isabella to go back. Julianne and I have some pretty big apprehensions about Isabella in school, but I must admit that the school is doing an amazing job of accommodating her, and for that, we are extremely grateful.

Moving Forward–One Day At A Time

Isabella’s oncologist returns from vacation today and we will be meeting with her tomorrow to discuss any treatment options.  It has been over a month now since the recurrence was detected and we are frustrated that we still don’t have a course of action.  Julianne and I get the feeling that the doctors have pretty much given up on Isabella, which is difficult to fathom, but I guess that’s the reality of the situation.
One of the ways that we’ve taken matters into our own hands is by adjusting Isabella’s diet.  I mentioned in a previous post that there has been anecdotal evidence (but no human trials) that a strict low-carb diet may help control the growth of tumor cells and in some cases even shrink the tumor.  So for the last few days, we’ve been severely limiting Isabella’s carb intake, and from those of you who’ve tried the Atkin’s diet, you know how difficult it is (we couldn’t even have cake for Nathaniel’s birthday yesterday).  But amazingly, while on the diet, we’ve noticed that the her right hand has actually improved from a couple weeks ago, and that she has regained some strength in her right foot.  We’ve also noticed that mentally, she is sharper than she has been for a couple weeks.  Since we’re only a few days into the diet, we’re still trying to find the foods that Isabella likes, and the toughest part is when she asks for certain foods and tell her that she can’t have them.  At this point, we don’t even know if it really is helping, but while Isabella is willing to eat what we give her, we’ll try it.
One thing I should mention is that from looking at Isabella, you wouldn’t think much was wrong.  You’d notice her walk is slightly off and you may notice her right hand is weaker, but other than that, she looks like a regular kid.  When you think of a dying person, you think of someone confined to a bed, hooked up to a bunch of tubes and monitors.  But Isabella still runs around, plays, laughs, and sings.  Even this morning, when she woke up, she was just all smiles while the rest of us begrudgingly got ready for the day (the rest of us are clearly not morning people). 
And to some extent, our mindset is the one thing that we can somewhat control.  As a family, we’ve decided to enjoy how many days there are left instead of wallowing in self pity.  There’s plenty of days for sadness, but we know there are just a limited number to be happy, so why waste those days in sadness?  Of course, that’s easier said than done since some emotions are harder to control than others.  When I saw Isabella’s smile this morning, I was sad that I will not be able to see that smile grow up, but then I caught myself and smiled myself, appreciating her smile in all her beauty.

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.

Another Lost Little Soldier

Last year, I posted about a little girl, Jasmina Amena, who was being treated for leukemia at NYU.  We would sometimes see her and her mother in the hallways of the pediatric unit, but it wasn’t very often since she was always in isolation.  I am sad to report that just this past Wednesday, Jasmina lost her fight against the cancer and died.  It had only been just over a year ago that she was diagnosed.

Her story made headlines in the local newspapers and TV stations and attracted celebrities such as Rihanna and Kelly Rowland who would visit her in the hospital.  In what would be Jasmina’s ultimate dream, she was able to meet President Obama at the White House just this past December.

There were a number of bone marrow drives that were held in her honor and last summer, she received a bone marrow transplant from a near-exact donor match.  Unfortunately, this fall, her cancer returned.  On Monday, she developed pneumonia and quickly deteriorated.  Before passing in her mother’s arms, she said to her, “Mama, it’s ok to cry.”

Jasmina was 6 years old.

You can read her mother’s blog at: http://www.caringbridge.org/visit/jasmina

New York Daily News Article

People.com Article

Official January 2010 MRI Results

Today we had our follow-up visit with Isabella’s oncologist to go over the official MRI results.  On Saturday, she reported to us that her preliminary results by taking a quick look at the MRI showed that everything was still good and stable.  Since then, the radiologist (who specializes at looking at MRIs) was able to look at the results, along with some more detailed tests and reported that everything indeed did look good – not only was there no new tumor, but they now suspect that the areas that they thought were tumor on her last MRI are actually just scar tissue from Isabella’s craniotomy.  So basically, what it boils down to is that although our doctor never actually used the word “clear”, she was extremely happy with the results – she remarked that if she felt there was tumor left, that we would have immediately began planning for her next rounds of treatment.  So reading between the lines there, she obviously believes that Isabella requires no more treatments and we will just continue with the periodic scans.  Because of the scar tissue, MRIs will always show enhancement (enhancement is the term they use to show any abnormality in the scan) so I don’t believe we can ever have a truly “clean” scan – that is, this is probably the best report we can expect.
You may also ask yourself if scar tissue and tumor look the same  on an MRI, how can they tell which is which?  Well one of the additional tests that they ran this time (which they were not able to run last time) is something called a “perfusion” scan.  Perfusion measures the amount of blood flow to the enhanced area of the brain.  Tumors, by their very nature, draw a lot of blood compared to normal brain cells.  Right after Isabella’s surgery, a perfusion scan showed that the tumor cells had 8 times the blood flow compared with the blood flow from the surrounding normal cells.  When Isabella completed her chemotherapy, the perfusion scan showed that the perfusion had dropped to just 2 times.  The perfusion scan from this round showed perfusion at 0.9 to 1 times, or normal blood flow from the enhanced areas.
I know that I’ve been through some emotional highs and lows over the last year, but I think a giant weight was lifted off my shoulders when Julianne finally said she was very happy with the results.   Up until now, knowing the grim statistics for pediatric brain cancer, she had taken the cautiously optimistic approach as not to get too high or too low.
But like I said many times before, we will continue to be vigilant even though we’ve past what we hope is the final finish line.  Julianne says that she will continually keep up to date with any advances in pediatric brain tumor research in case Isabella has a recurrence.  She has also remained active in the online support message boards and has been in contact with several parents of newly diagnosed children. 
Throughout the year, we always talked about how lucky we were with the timing of some of the events and how the stars seemed to align in a way that Isabella got the best possible treatment available.  A few times over the last year, Isabella would say something like “When I’m 10…” or “When I grow up, I want to….” or something similar, and I would smile back to her, but in the back of my mind, it made me extremely sad knowing that she might not ever get that chance.  But now, she has that chance.  I don’t think Isabella will ever know how fortunate she was or is, and honestly I hope she never has to know and she can live a full, normal life.
Thank you all for your incredible support.  It won’t be soon, but I hope that one day I will be able to officially close out this blog and that Isabella’s Fight will be finally over.

January 2010 MRI Preliminary Results

We went in for Isabella’s MRI on Saturday and our oncologist informed us that the preliminary results of the MRI looks like everything is still stable and looking good.  Of course, these results aren’t official until delivered formally by the radiologist, but we were happy to hear that.  In addition, they need to run some more detailed analysis of the scans, and the results of  which we’ll learn next week.  And we’ll go through the worry and anxiety again in three months, but for now, we’re satisfied and we will enjoy our three day weekend!  We hope you enjoy yours!

Post # 200 - Upcoming MRI

It's somehow fitting that the first post of the New Year is also post # 200 - or maybe it isn't.  Who knows? :)  Anyway, this upcoming Saturday, we have our next scheduled MRI for Isabella, with the results expected a few days later.  Of course we would be ecstatic if they told us that the remaining tumor cells have disappeared, but we'll settle for "stable".

We've read from many parents of brain tumor children that they're anxious at every MRI, and we certainly feel it ourselves.  For the next couple years, we'll be doing MRIs every three months, then eventually, it'll be every six months, then eventually after that, it'll be once a year.  You would think that it would be easier doing the MRIs less frequently, but some parents have responded that they actually have increased anxiety when there is more time in between MRIs!  I think I will fall into this camp.  I can't imagine having to wait a whole year to get an MRI - but I guess the bright side of that is that it will mean we are several years out and stable.  And in between each of those MRIs, we'll constantly be scrutinizing Isabella - every twitch, every headache, every ache, and every complaint will certainly have us racing.

By the way, as a reminder, we have been posting all of our family related stuff over on our main home page at http://www.icatar.com/.  You'll be able to see some great pictures and videos of Isabella and her siblings there.  We'll keep all of Isabella's treatment related stuff here.  Thanks for keeping up!

Holiday Update

It’s been over a month since our last update, and now seems to be a good time to send out another update as we head into the holiday season.  Isabella has been doing quite well.  She is doing great in school and continues to make improvements in her occupational therapy.  Medically she is ok.  Her immune system is still weakened from the chemo and radiation treatments, but thankfully, she didn’t catch the flu as it made its rounds through the school and even our household.  Her next MRI will be in January so until then, we’re just going to sit back, relax, and enjoy the holidays.  If you haven’t done so, go to our main family home page to see some great photos and videos of our family.  In the meantime, below are some pictures of Isabella – notice how nicely her hair is filling in!

 

Back to School (Flu-Free Version)

Isabella has been out of the school for the last week since the flu has been running rampant through the school.  Yesterday, she went to work with me and had a great day.  All of the people at work were so happy to see her and she actually came home with a few unexpected gifts and office supplies!  Here she is drawing up a grand plan on my whiteboard at work.

The school also notified us that the absences were back down to normal levels so Isabella was able to go back to school today.  So she had an unexpected mini-vacation and got to go on a bunch of field trips with mommy and daddy.  Not a bad deal!

One Year Later

It was exactly a year ago today when our family embarked on this journey, when Isabella began her fight.  It was a year ago when an MRI revealed a giant tumor in Isabella's head.  I just went back and read the blog entries for the first couple months and am amazed at everything that we actually went through to get where we are today.  I was immediately flooded with emotion and relived the emotional roller coaster that we went through in those first few turbulent weeks.

A year ago, we weren't even sure whether Isabella would live to see another year, but here we are a year later, with Isabella done with all of her treatments and back in school - well, technically, she would be in school if the flu wasn't making its rounds through the school.  Immediately after her surgery, Isabella couldn't even move her right arm and couldn't walk.  Today, even though she has "switched" to become a lefty, she is continually improving and strengthening her right hand and she runs like any normal six year old.

We still don't know what lies in her future, but honestly, we don't know what lies in any of our futures.  If this whole ordeal has taught us anything, it's to be thankful and enjoy each day.  A year ago,we spent Thanksgiving at the hospital and one of my wishes was that a year from then, we would be able to spend Thanksgiving home with Isabella.  I am thankful we will be able to to that this year.

Below are just a few of the pictures that show what an incredible year it has been.
Here is Isabella, immediately after her surgery to remove her brain tumor.

Amazingly, this next picture was taken less than week after Isabella had her surgery.
Since Isabella couldn’t walk for a couple weeks after surgery, she used a wheelchair.  Too bad Nathaniel thought it was also to get him around!
This picture was taken by Shira Weinberger during a photo shoot at the hospital.  Notice how chubby Isabella was!

A few weeks after she started chemotherapy, Isabella’s hair started falling out.  But since most of her hair was in a giant, knotted clump after the surgery, her hair stuck around for a while.

Finally, Isabella’s clump of hair fell out (we still have it somewhere), and she was not affected a bit.

After Isabella completed her chemotherapy, she came home and returned to being a regular kid, taking swim lessons and swinging on the monkey bars.

Here is Isabella at her 6th birthday, and you can see her hair growing back nicely!

Here, Isabella rings the bell at Boston Mass General to signify the end of her proton radiation treatment.

Isabella waits with her brother and sister at the bus stop on her first day of school.  Amazingly, Isabella only missed two days at the beginning of the school year due to the radiation therapy.
Here are Annalise, Nathaniel, and Isabella about to go trick or treating.