Happy Halloween Weekend

As promised, we had a great Halloween weekend.  On Friday night, the kids had a Halloween dance at their school.  On Saturday, we went for a nice walk through the New Canaan Nature Center discovery trails.  On Sunday, before the the trick-or-treating festivities, we played in some leaf piles.  As they say, pictures are worth a thousand words, so we have a few thousand words below!

(Click on each picture to see a larger view!)

More Scans, More Answers

So I mentioned in the last post that Dr. Wolff (from Tufts and previously from MD Anderson) did not rule out radiation scarring in Isabella’s brain.  MRIs are open to interpretation and does not distinguish readily between tumor and scarring.  Based on some of Isabella’s clinical symptoms, there was still a possibility that this wasn’t tumor.  Julianne found a study being done at the National Institutes of Health (NIH) in Bethesda, MD, where they were doing a special MRI (with spectroscopy) which looked at other characteristics in the brain.  The study is to see whether this MRI with spectroscopy can provide more insight into whether a suspect area is tumor or scarring.

We drove down to Bethesda this week to take part in the study in hopes that the more detailed MRI would put to rest what is inside Isabella’s head.  Unfortunately, we did not receive the answers we were looking for.

Based on the scan results, the doctor is certain that the lesions are indeed tumor.  Also, based on some of the measurements, they showed that the tumor has grown and that it appears to be highly aggressive.  The worst part is that the scan showed two new spots on Isabella’s right side of her brain.  It is extremely uncommon for tumors to “cross hemispheres”, so the doctors suspect that tumor cells broke off, traveled through the spinal fluid to the other side.  We are scheduling a spinal MRI next week, but this new piece of information is extremely troubling.

Also, we have been in touch with a neurosurgeon at Robert Wood Johnson Hospital in New Jersey, where they have one of the MRI guided laser treatment machines that I’ve written about in the past.  These laser machines are able to treat tumors that were previously considered inoperable.  However, these laser treatments are more suited to tumors that are in chunks (focal), as opposed to tumor cells that are more spread out over an area (diffuse).  We met with the doctor yesterday on our way back from Maryland, and unfortunately, since Isabella’s tumor has some diffuse components, he does not consider her a candidate for the laser surgery.

If there is anything positive to gain from this new information is that the new lesions found on the right side appear to be focal and in an area that may be resectable.  One of the other treatment options that we spoke about previously is immunotherapy (or vaccine treatments).  But in order to create the vaccine, you needed a certain amount of tumor and Isabella’s was not resectable at the time.  We are now discussing with our oncologist to see if we can verify that the new tumors are resectable, and if so, we would like to collect it for use in a vaccine.  I should also mention that the vaccine would most likely not “cure” the cancer at this point, but possibly only extend survival.

So, to summarize everything, here is where we are.  Our only option at this point is chemotherapy, and we will be looking to start chemotherapy very soon, possibly next week, following a spinal MRI.  However, before we start, we would like to resect the new tumors if possible to be used for immunotherapy.  One downside to surgery to resect the tumor is that it would delay chemotherapy further, from a few days, to possibly a few weeks.

In the meantime, we plan on enjoying the upcoming Halloween.  We’ve already bought Isabella some special, no sugar, candy that she will be able to eat on Halloween.

Thanks again for keeping up with us through this difficult time.

Back Where We Started

So over the last two years, Julianne has been scouring the Internet for any and all treatment options for Isabella.  As I’ve written, her tumor is extremely rare and very few people have worked with it before.  Just to show how rare, she only found one case study that referenced her particular tumor type where the patient responded to chemotherapy, even after recurrence.

As we got the news of Isabella’s recurrence, we have been working with our oncologist on different types of chemo treatments that we can try (informally, they’re called cocktails as they mix and match several types of chemotherapy to see what gets the best response).  Of course, we brought up that case study for the single patient and our oncologist informed us that she knew the doctor that worked on that case study and that he had just moved to Tufts Medical Center in Boston.  We contacted him and he agreed to see us and look at Isabella’s case.

We met with him for a couple hours two weeks ago where we basically went through our entire history of treatment and he briefly looked at the latest scans.  The good news is that he still hasn’t ruled out radiation necrosis.  We also spoke about what our options are if it is decided that it is tumor.  He mentioned that although Isabella’s tumor type may be rare, it appears to be of a type that responds to chemo, even after recurrence.  So we were inspired that we should never give up when treating this tumor.

So here we are, more than three months after a routine follow up MRI showed some new areas of concern in Isabella’s head.  Back then, we weren’t sure if it was tumor or radiation changes, and today, we’re still not sure.  We still don’t have a treatment

New Additions to the Family

We recently bought two new pets for the kids, sugar gliders, also known as sugar bears.  These cute little furry animals are part of the marsupial family and come all the way from Australia.  The attractive features they bring as pets are that they are clean, friendly, and need relatively little maintenance.  We’ve had them for about a week now and are still going through the bonding phase, and we think they are getting a little more used to us now. 

Here are a couple pictures and videos of “Oriette” and “Squeeky”, our new sugar gliders.  (FYI, Annalise wanted to name hers Oreo because it was black and white, but since it is a girl, she wanted the name to be more feminine, hence, Oriette!)

Click each picture for a larger view.

Prayers for Another Child

Shortly after Isabella was diagnosed with her cancer, one of our neighbor’s children, who also happened to be in Isabella’s class, was also diagnosed with cancer – this one leukemia.  He went through his treatment and was showing that he was clear until his last scan, which showed his cancer had returned.  He will now require further treatment and probably a bone marrow transplant.  If none of his family members match, they will need to find a match in the national registry to find a matching donor.

If you haven’t already, I urge you to register to become a donor.  They will send you a kit, where all you need to do is swab your cheek and mail it back to them.  There are some restrictions to be eligible to be a donor, so if you don’t qualify, you can contribute monetarily (it costs $65 to process registrations).

You can register or get more information here:

http://www.dkmsamericas.org/bone-marrow-donors

Fall Fun–10/10/10

Here are a couple recent pictures showing some fun that we’ve been having.  Enjoy!

The kids try out this tractor during our visit to the Norwalk Department of Public Works.

Another picture of the kids at the Norwalk DPW.

Roneil getting ready for the first game of the Yankees playoffs.  He’s wearing his Yankees hat, shirt, jacket, snuggie, foam finger, shopping bag, and coffee mug.

Annalise is pretty upset that all the Yankees ice cream is gone!

The kids had their own sleepover party last night.

Isabella shows off a new hand-made shawl from a friend.

The kids enjoy treats from apple picking.  We actually brought a portable scale to the orchard so that we can weigh the apple that Isabella ate.  (By the way, the apple Isabella ate was 104g and 12g of carbs.)

From the odd and bizarre file.  This half eaten apple was still on the tree!

The kids pick out their pumpkin to prepare for Halloween.

Nervous Wrecks

We haven’t had many medical updates recently because frankly, there hasn’t been much to report.  Since it’s been awhile, let me take a minute to review where we are.

In mid-July, a routine follow-up MRI showed areas of concern in Isabella’s brain which immediately gave us reason to worry that Isabella’s cancer had returned.  Our doctors were split on whether this was recurrent tumor or changes due to radiation, so they suggested we do another MRI a month later.  Also in the meantime, we sent out several requests for second opinions.

The wait for the next MRI was very difficult for us because Isabella exhibited many symptoms that the tumor was indeed affecting her.  Her right hand and foot progressively got weaker and her mental functions degraded as well – she found it difficult to talk and put sentences together.  The MRI showed that the spot grew slightly and we worked with her oncologist to develop treatment options.  We were also still waiting for responses for second opinions so we stayed in a holding pattern.

While we waited for a treatment plan, we put Isabella on a modified Atkins diet.  Almost immediately, we noticed that Isabella’s symptoms stopped getting worse and in some cases, such as her mental function, actually improved over time.  She seemed to have plateaued, which gave us a little bit of relief.

Isabella also has been loving going to school.  At first, we were concerned how she we do physically, but the school has been very accommodating in assisting Isabella.  At the beginning of September, she was deteriorating so fast, we thought that she would need a wheelchair.  But fortunately, she improved physically and has been able to walk on her own.  We were also worried because all of her friends from last year went to different classrooms, but Isabella, with her magnetic personality, had no problems making new friends.

This past Tuesday, almost three months after the spot was first detected, Isabella had another MRI.  We were hopeful that since Isabella’s symptoms stopped getting worse, perhaps the tumor had stopped growing.  But unfortunately, the results showed that the spot had grown again, albeit slightly, but it did grow, and our doctor believes that we should start treatment as soon as possible. 

Over the last few weeks, I described some new and innovative treatment options for brain tumors, but unfortunately, few of them are mature enough for Isabella.  Ideally, if we had all the time in the world, we could somehow keep the tumor in check, and let these other technologies develop an alternate treatment or even a cure.

Our doctor has recommended a couple chemotherapy options, which we are currently evaluating.  Although we’re not looking forward to the side effects of chemo and the hospital stays, we are hopeful that the tumor responds to the chemo positively as it did last year.  Again, we’re trying to buy time here in the hopes that something, anything pans out – whether it’s a vaccine or a laser or a magnetic helmet.

Cancer Awareness Month Reviewed

So here we are at the end of September and the end of Pediatric Cancer Awareness Month (and Prostate Cancer Awareness Month, Ovarian Cancer Awareness Month, and National Sewing Month).  I hope that I’ve helped bring at least a little bit more awareness to this horrible disease that affects not just mine, but thousands of other families across the country.  What have we learned?

• Every day, 10 children will be diagnosed with a brain tumor while 3 more children will die.
• Many of the symptoms of brain tumors are common ailments that can be misdiagnosed very easily.
• Pediatric cancer research funding is woefully underfunded compared to other cancers, especially at large, well known organizations, such as the American Cancer Society and the National Cancer Institute.  If you want your money to go specifically to children’s cancers, you need to pick organizations that are solely dedicated to them (such as St. Jude’s Children’s Hospital, the Pediatric Brain Tumor Foundation, or the Children’s Brain Tumor Foundation).
• There are a bunch of new brain tumor treatments on the horizon, but unfortunately, most of them target adults before they target children.
• If you are diagnosed with cancer, you should collect as much tumor sample as possible and bank it (ask your medical professional or do a search for tumor banking).  This may be used to create a customized vaccine for your cancer.
• Pork rinds are our best friends!

Pediatric cancer awareness should not be limited to a single month.  Every day, kids like Isabella are fighting for their lives while their families try to cope with their future’s uncertainty.  So the next time you find yourself with some problem, think about these kids and compare your problem with theirs.  That should help put everything in perspective.

Thanks for reading the blog. 

CBS Story on Immunotherapy

In case you missed it, CBS News had a story on immunotherapy, using vaccines to treat cancers.  It’s about a little girl who had a neuroblastoma, which is a cancer of the nervous system.

http://www.cbsnews.com/stories/2010/09/29/eveningnews/main6912677.shtml

Also, check out this story they did last May about tumor vaccines.

http://www.cbsnews.com/video/watch/?id=5014935n

Tumor Vaccines

The human body is an amazing machine.  Every day, billions and billions of cells carry out their function which allows us to think, eat, breath, and everything else that we do on a daily basis.  Cells go through a basic process of mitosis, or cell division, which is how certain parts of the body regenerate, such as hair, skin, and blood.  There are several built-in checkpoints during the cell cycle that regulate progress.  These checkpoints have various purposes such as ensuring that cell mutations are not replicated, cells are not replicating at too fast a pace, and that specific organs do not get too big.

On a daily basis, cells are mutating, but our immune system detects and destroys these mutated cells.  When these mutated cells replicate too fast and the immune system does not detect these cells, the cells begin to grow uncontrollably and that is the basis of cancer.

Our built-in defense system, the immune system, detects and destroys foreign bodies with amazing efficiency.  These foreign bodies can be viruses or mutated cells.  So along with the ability to “learn”, what else is amazing is that the immune system has “memory” so that if it detects a foreign body again, it can attack it even faster.  When you are given a vaccine (such as the flu vaccine), you are injected with dead versions of  the virus.  Your immune system then programs itself to remember this virus pattern so that if you are exposed to the virus again, it can attack and kill the virus before it spreads and makes you sick.

A cancer vaccine works in a similar manner.  One difference between a cancer vaccine and traditional vaccine is that a cancer vaccine does not prevent the onset of cancer, but is only used to treat cancer.  But the basic premise is similar.  A portion of the tumor is resected from the patient along with their blood.  The white blood cells are then “taught” to detect the proteins of the tumor cells.  The white blood cells are then reinjected back into the patient where they teach other white blood cells about the cancer cells and go on to fight and kill the cancer cells.

So, our best piece of advice that we can give you should you or someone you know be diagnosed with cancer is to always try and save a piece of the tumor.  Don’t assume that the hospital saves any of the tumor cells, and even if they do, the hospital legally owns it.  In addition, the tumor needs to be saved in a certain way in order for it to be preserved so it can be used for vaccine creation.  We wish that we had known about this when Isabella had her surgery, because for better or worse, she doesn’t have enough disease tissue right now to make the vaccine.

Flashes of Hope

While we were at Camp Sunshine, an organization called Flashes of Hope donated their time to photograph every child at camp along with their families.  Today, we received the pictures and I am proud to share them with you.  Flashes of Hope is a nationwide organization that takes pictures of children with cancer and recently just photographed their 15,000th child.  A donation of $25 allows them to photograph a child and his or her family.

Flashes of Hope photographs its 15,000th child!
Posted on September 10th, 2010
This month Flashes of Hope reached a new milestone. Since its inception in 2001, Flashes of Hope has provided free portrait packages to over 15,000 families all across the country! This summer alone, over 3,000 children were photographed at camps across the country. In 2010, Flashes of Hope will photograph 50% of the children diagnosed with cancer in 60 locations across the United States.
Flashes of Hope is a national nonprofit organization that creates portraits of children fighting cancer and other life threatening illnesses and raises money for pediatric cancer research. Families photographed receive a generous portrait package, all free of charge. The photographs, taken by award winning photographers, help children feel better about their changing appearance by celebrating it. For families of terminally ill children, it is especially important to have a portrait that preserves forever the bravery, grace, and dignity of their child.

A Desperate Diet

Note that the following post does not constitute a recommended medical treatment for brain tumors.  We are posting this for informational purposes, and as always, anyone looking to follow this diet should perform all research and obtain advice from your medical professional.

About a month ago, we started Isabella on a high fat, low carbohydrate diet known as a “Modified Atkins Diet” or MAD.  This diet stems from a diet known as a Ketogenic Diet which was first developed to treat epilepsy, but has been found to have positive effects on brain tumors anecdotally.  Typically, our bodies convert the carbohydrates that we eat into glucose, which is then sent to feed all parts of our bodies, including the brain.  When there is very little carbs in the diet, the liver coverts fat into fatty acids and ketone bodies.  The ketone bodies are then transported to the brain and replace glucose as an energy source.  It has been seen in laboratory experiments that cancer cells are not able to use these ketone bodies for energy and die or at least stop proliferating, while normal brain cells are able to use ketones and continue to function.

In a normal diet, half of the caloric intake is made up of carbs, while 30 percent is fat and 20 percent protein.  So for a child that requires 1200 calories per day, this translates to roughly 150 grams of carbs per day.  On the MAD, we are limiting Isabella to only 20-25 grams of carbs per day!  To put this in perspective, here is a listing of some common foods and how many grams of carbs they have.

Food	Carbs (grams)
Ketchup (1 tbsp)	4
Popcorn (1 cup)	6
Watermelon (1 cup)	11
Potato Chips (1 small bag)	14
Apple	19
Bowl of cereal and milk	28
Chocolate Cake	35
Spaghetti (1 cup)	43
Rice (1 cup)	44
Kraft Mac and Cheese (1 cup)	54

As you can see, many foods are not even an option anymore, and with many more, we need to strictly control portions in order to not go over 20 grams.  For example, Isabella loves watermelon, so we give that to her as a treat, but we could never use up 11 grams of carbs at once, so we only give her a quarter cup of watermelon.  If you have time (and a watermelon), dice up a watermelon and measure a quarter cup and you’ll see just how small an amount that is.

Because of that, we’ve scoured the Internet for recipes used by other parents and some are truly innovative in mimicking “normal” food with a low carb counterpart.  I’ve listed a few of these below. 

• Roasted crumbled cauliflower to substitute for popcorn
• Shirataki Tofu noodles as a substitute for spaghetti pasta (1 gram of carbs as opposed to 43 grams – and Isabella loves them!)
• Microwave a slice of full fat American cheese and it magically turns into a tasty cheez-it cracker
• Chicken breading made of crushed up pork rinds (Julianne’s dad actually ran out in the middle of the night to a gas station to pick up a couple bags of pork rinds!)
• French toast made of crushed up pork rinds (these weren’t so popular, but as you can see, pork rinds are now a staple at our house)
• Pizza crust made of riced cauliflower, egg and cheese
• Bread made of flax seed and almond meal
• Waffles made with ricotta cheese instead of flour
• Mock tortilla crackers made of fried cheese (delicious with taco meat)

Honestly, we don’t even know if the diet is working and whether we may be torturing her unnecessarily.  But Julianne and I agreed that if at any point Isabella insisted on eating the high carb stuff or lost too much weight, we would just let her eat what she wanted.  At this point, though, Isabella has been on the diet for about a month now and we believe that she’s adapted extremely well to it so far.  She has been able to maintain her weight and has been steadily increasing her total caloric input. Sometimes, she’ll ask for something that she can’t have, but we’ll offer her an alternative and she’ll eat that instead, and usually happily.  The hardest part is being out and having the “bad food” everywhere, such as all the free samples at Costco or the Ice Cream truck passing by the house (and not to mention Halloween coming up – yikes!).  If this diet ends up controlling the tumor growth and buying time, it’ll all end up being worth it.

Isabella has her special low-carb cheesecake while everyone else had the regular cheesecake.  The crust is made of crushed macadamia nuts.
That popsicle has zero carbs.  Nathaniel wants to make sure.

Cooking Tumors with Lasers

Last May, the FDA approved a device from Monteris Medical, Inc. that uses an MRI-guided laser to kill tumors that are otherwise inoperable.  There are only three such devices installed in US Hospitals, the latest of which went live at Barnes-Jewish Hospital in St. Louis just earlier this month.

The press release is below.

http://www.prnewswire.com/news-releases/treating-untreatable-brain-tumors-fda-approves-new-laser-surgery-61852567.html

Treating Untreatable Brain Tumors: FDA Approves New Laser Surgery

Monteris Medical Earns 510(k) Clearance for AutoLITT(TM)

KALAMAZOO, Mich., and WINNIPEG, Manitoba, May 13 /PRNewswire/ -- An MRI-guided laser surgery method, in investigational use at both The Cleveland Clinic and University Hospitals Case Medical Center, holds promise for thousands of brain tumor patients and has earned clearance from the Food and Drug Administration (FDA) for use in neurosurgery. The first applications of the technology are expected to be for the treatment of otherwise inoperable brain tumors.

The AutoLITT System uses an MRI-guided laser probe, passed through a small bur hole in the skull, to deliver laser interstitial thermal therapy ("LITT") to heat and coagulate the tumor from the inside. High-intensity laser energy is applied directly to the tumor, rather than passing through normal tissue, while the MRI measures the temperature inside the brain, showing thermal damage as it happens and facilitating precise control of the treatment. Once coagulated, the treated tumor mass is dead.

"The AutoLITT procedure delivers new-found hope for patients who have previously been given limited options in the treatment of their tumors," explains James Duncan, president and CEO of Monteris Medical, the AutoLITT manufacturer. The system offers a potential option for patients with tumors that are too difficult or too risky to treat, tumors that don't respond to other treatments, and tumors in patients that are otherwise not good candidates for surgery or radiosurgery.

About Monteris Medical

Monteris Medical(TM) Inc. is a medical device company dedicated to developing new cancer treatment technologies that improve clinical outcomes, quality of life, and the cost and complexity of care. The company's U.S. corporate headquarters are in Kalamazoo, Michigan. R&D headquarters are in Winnipeg, Manitoba, Canada. The website is www.monteris.com.

Delivering Chemo Directly to Tumors

Traditionally, chemotherapy is given orally in the form of pills or intravenously.  The medication would then travel through the blood stream to the affected cells and do their work.  One of the main problems with the traditional treatments is that the dosage has to be pretty high in order for it to have an effect on the tumors, which in turn results in a number of side effects (such as hair loss, vomiting, and compromised immune system).  Secondly, for brain tumors, the medication has to cross the blood-brain-barrier, further limiting its effectiveness.

We’ve been investigating a relatively new process of administering chemotherapy for brain cancer patients.  A surgeon would insert a tiny catheter into the patient’s brain, then chemo would be given in tiny drops over the course of a few days directly on the cancerous tissue.  Since the dosage is a fraction of the traditional dose, the side effects would be fewer and milder.

Obviously, the big risk is the initial surgery to insert the catheter, but this does sound like a promising new method to treat brain tumor while minimizing the side effects of traditional treatments.  There are currently clinical trials progressing in both adults and children.

This article has more information:
http://health.usnews.com/health-news/managing-your-healthcare/cancer/articles/2009/05/04/delivering-chemo-directly-into-brain-tumors-shows.html

FOX Sports and St. Jude

This NFL season, FOX Sports wants football fans across America to get in the huddle with St. Jude Children's Research Hospital and help lead the drive against childhood cancer.

This fall, FOX Sports has teamed with St. Jude Children's Research Hospital to help kids who are sidelined by cancer and other deadly diseases. This season-long partnership will include public service announcements that will be aired all season long—including Super Bowl Sunday—and feature additional on-air mentions and other St. Jude events and activities.

Read more.

Father Fernando Suarez

A couple of weeks ago, my aunt told me that Father Fernando Suarez would be coming to Connecticut to do a healing mass.  Father Suarez original comes from the Philippines and has claimed to be able to heal all types of ailments from a sore neck to blindness to cancer.  My aunt and my mom insisted that we take Isabella to the healing mass and although I was skeptical, agreed.
While we were at Camp Sunshine a few weeks ago, we shared many stories with other families going through what we are going to now.  We heard stories of people taking their child to all sorts of “non-conventional” healers including some crazy stories with faith healers and with people flopping around the ground as they were “healed”.  Up until a few weeks ago, Julianne and I didn’t have to consider these other healings because the traditional treatment seemed to have worked and that stuff was for desperate families.  But we've tried a bunch of these alternative healings including energy healing, reiki healing, and now here we were walking into the church to attend something that we would have thought was crazy a couple months ago.
The Mass itself was just like any other Mass and Father Suarez gave the homily.  Just from hearing him speak a few sentences, I could immediately sense his kindness and sincerity.  He was also very entertaining and shared many stories from his past.   My favorite one was when he returned to a Canadian church after three years.  He reunited with a couple that he met on his first visit.  The couple was having problems having children and they came to see Father Suarez to help them out.  Well it turns out that after seeing Father Suarez, they had three children in three years, and now they were coming to see him to make it stop! 
The healing portion was scheduled for after the mass.  People who needed healing would walk to the front of the church where Father Suarez would pray over them and heal them.  The priest describing the process to us even joked that you don’t have to fall to the ground to be healed and you don’t have to go back to the end of the line to be healed again!  But just in case you do fall, they were prepared with catchers who stood behind you as you were healed.  (“Just be sure to pick a catcher bigger than you, or it could get messy”, he joked.  Julianne and I laughed thinking about those stories we heard about people convulsing on the ground.) The whole process would only take a few seconds per family/person, but we were dreading it because there were hundreds and hundreds of people attended.  We were sitting in the back of the church and there were hundreds more people waiting in the adjacent parish hall that couldn’t fit in the church. 
Fortunately, they called up families with children who were 7 years old and younger, so we were one of the first ones to be seen when we took Isabella up.  Julianne, my mom, and I walked up with Isabella.  Next to us was another family who I overheard tell Father that their child also had a brain tumor.  When it was finally our turn, Father Suarez walked up to us and we told him that she has a brain tumor.  He told us to close our eyes as he prayed over us and at that moment, I felt a wave of air go over me.  I don’t know if he was blowing on me, or if it was the ceiling fans, or what it was, but I felt a giant sense of comfort and peace.  My mom and Julianne were crying as we finished up, thanked Father Suarez, and left the church.
We don’t have another MRI scheduled until next weekend so we won’t know anything until then, but Julianne and I were glad to have gone.
We would also like to give a special thanks to our family friend, Reggie, who provided us with special tickets to attend the mass inside the church.  Without those tickets, we would have been in the other building and waited much longer.
If you have a few minutes, I urge you to visit Father Suarez’s website (http://www.fatherfernando.com/) and read his amazing story.  He and his group travel worldwide to do healing masses and actually went to Greece this weekend following the healing mass in Connecticut.  He also started a foundation where they feed thousands of malnourished children in the Philippines.
Father Suarez readily admits that he does not heal people himself, but he is just an instrument for God who actually does the healing.  If we had more people like him to spread hope, faith, and love, we would live in a much better world.

President Recognizes Cancers Awareness Month

On August 31, President Obama proclaimed September as a National Cancer Awareness Month, but not for pediatric cancers – he proclaimed it for Prostate Cancer and for Ovarian Cancer.  I guess in the “better late than never” category, a full 10 days into the month on September 10, President Obama recognized September also as Childhood Cancer Awareness Month.  Here is the full release:

Presidential Proclamation--Childhood Cancer Awareness Month

- - - - - - -

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each year, thousands of children face the battle against cancer with inspiring hope and incredible bravery.  When a child is diagnosed with cancer, an entire family and community are affected.  The devotion of parents, grandparents, loved ones, and friends creates a treasured network of support for these courageous children.  During National Childhood Cancer Awareness Month, we honor the young lives taken too soon and the survivors who face chronic health challenges, we celebrate the progress made in treatment and recovery, and we rededicate ourselves to fighting this disease so all children may have the chance to live a full and healthy life.

While survival rates for many childhood cancers have risen sharply over the past few decades, cancer is still the leading cause of death by disease for young Americans between infancy and age 15.  Too many families have been touched by cancer and its consequences, and we must work together to control, and ultimately defeat, this destructive disease.  I invite all Americans to visit Cancer.gov for more information and resources about the symptoms, diagnosis, and treatment of childhood cancers.

Tragically, the causes of cancer in children are largely unknown.  Until these illnesses can be cured, my Administration will continue to support investments in research and treatment.  The National Cancer Institute, the Federal Government's principal agency for cancer research, is supporting national and international studies examining the risk factors and possible causes of childhood cancers.

The health reforms included in the landmark Affordable Care Act advance critical protections for individuals facing cancer.  Provisions in the law prohibit insurance companies from limiting or denying coverage to individuals participating in clinical trials, the cornerstone of cancer research.  After recovering from cancer, children can no longer be denied insurance coverage due to a pre-existing condition.  It also requires all new plans to provide preventive services without charging copayments, deductibles, or coinsurance, increasing access to regular checkups that can help detect and treat childhood cancers earlier.  The Affordable Care Act eliminates annual and lifetime caps on insurance coverage and prohibits companies from dropping coverage if someone gets sick, giving patients and families the peace of mind that their insurance will cover the procedures their doctors recommend.

This month, we pay tribute to the health-care professionals, researchers, private philanthropies, social support organizations, and parent advocacy groups who work together to provide hope and help to families and find cures for childhood cancers.  Together, we will carry on their work toward a future in which cancer no longer threatens the lives of our Nation's children.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2010 as National Childhood Cancer Awareness Month.  I also encourage all Americans to join me in recognizing and reaffirming our commitment to fighting childhood cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this
tenth day of September, in the year of our Lord two thousand ten, and of the Independence of the United States of America the two hundred and thirty-fifth.

                        BARACK OBAMA

Stand Up To Cancer

The other day I mentioned that researchers need to start thinking “outside the box” when it comes to treating cancers.  Stand Up to Cancer is a relatively new charitable organization that funds these new types of treatment.  Not only that, but SU2C encourages collaboration among different researchers as opposed to the traditional competitive nature between them.

This link shows all the new and innovative research that they are currently funding.  Some of them sound truly amazing!

http://su2c.standup2cancer.org/su2c/about_us/innovative_grants

SU2C will be holding a television special tonight, September 10th at 8:00 pm ET on all the major networks.

It’s long overdue that we all stand up to cancer!

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.)