(as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

Meet Cool Kid Joana Dominguez
from Deer Park, Washington …

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

I have a Costello kid – Zane. He is six-months-old and had a really rough start. We found out he had cancer – neuroblastoma – at one-month-old. Zane went through a life-saving operation to remove a [...]]]>

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

I have a Costello kid – Zane. He is six-months-old and had a really rough start. We found out he had cancer – neuroblastoma – at one-month-old. Zane went through a life-saving operation to remove a tumor from his aorta and vena cava, the biggest main vessel off the heart. The tumor was in the middle of his abdomen and attached to a main vessel from his liver to his intestines.

Zane was born with difficulty breathing because he has laryngo and trachea malacia (floppy airway). He is 100% fed through a GJ Tube (into his intestine) because his acid reflux was so bad that he was in constant pain. He has left ventricular hypertrophy, an enlarged heart or thickened walls of heart muscle that causes narrow passages. He has optical nerve hypoplasia in both eyes, which means he is mostly blind; fortunately he can see light. It was SO SO SO hard in the beginning as we discovered each issue. We have traveled to the Mayo Clinic in Rochester, MN to see many doctors; our son has had four in-patient stays in the seven months of his life. He has seven different specialists that he sees regularly, plus three therapists – for speech, occupational and vision.

We are headed to Orlando, FL this summer to hopefully and finally meet researchers who know more about Zane’s syndrome. Having a special needs child has been life-changing, yet he is such a sweet blessing. In the beginning months, Zane did not smile much; he worked so hard just to live! Now seven-months-old, he smiles and kicks his little legs to splash in the bathtub. Zane has mastered the ability to hold rattles and a ball, can transfer objects from one hand to the other, and bring them closer to his face. Since he is unable to see, he is very interested in learning by using lights and sounds. We use apps on the Kindle to attract his attention. Zane loves to watch fish on the screen.

Grateful for siblings
We are very grateful for Zane’s big smiles and small giggles. He loves the presence of his three siblings who each display a special personality – together it makes our family whole. Caitlyn, age 4, is Zane’s ‘mini-momma’ – she helps to wipe up spit-up and doles out lots of hugs and kisses. She loves to get things for Zane, such as diapers and formula, and picks outfits for him. Jacob, 7, is always concerned about his baby brother’s health and wellbeing, making sure that no one misses anything! He’s the smart and more serious older brother who cares deeply about Zane. Andrew, 6, is the ‘goofy’ older brother who keeps up attempts to make Zane laugh. He is not afraid to push the limits to try new laughable situations. For example, while the rest of us are afraid to scare the baby with Peek-a-boo, Andy jumps right in – and Zane loves it! Sometimes he’s startled, but mostly he puts up with Andy’s craziness and delivers a smile in return. We are so lucky to have all four of our kids.

How did we get here?
We started at a hospital with a great NICU, yet they didn’t know what was wrong with our son; he wouldn’t eat. We were transferred to a more experienced hospital to get the feeding tube inserted and while there, we met with a genetics team. Three out of four of them were confident our son had Beckwith Weiderman Syndrome. However, one thought he had Costello Syndrome, which made a world of difference for Zane because at 4-months-old we finally learned his genetic diagnosis. Zane is a Costello kid! This syndrome puts Zane at an increased risk of developing cancer, heart defects, breathing and eating issues, developmental delays, and other ‘fun’ stuff. The geneticists ordered an ultrasound to check for enlarged organs and instead found a cancerous neuroblastoma in his abdomen. Because of their precautions to check everything thoroughly, they saved our son’s life. His cancer was found early, he was stage one, and his neuroblastoma was low-risk.

The challenging part of the equation was the tumor’s location (nestled snuggly between his aorta and vena cava which are a body’s two largest and main vessels). However, our amazing surgeon was extremely careful and diffused the bomb. The doctor removed this complex tumor without hurting any of Zane’s other internal systems – and left nothing behind! It was a very scary day as we waited, hoping they were able to remove the entire mass. Thankfully, our baby did not need chemo or radiation.

Hidden treasures
We include Zane as much as we can in every fun thing we do; we do not allow his disabilities to disable us. We are not afraid to leave the house, therefore, we venture out often. Zane loves it and smiles to show us he does. I am forever grateful for the doctors and nurses who have brought us to where we are today. Zane will continue to grow stronger. Yes, he always will be delayed; yes he will remain blind; and yes, he always will be a Costello kid. Yet he will be alive to enjoy life with his big family – with his brothers and sister!

Don’t give up – as I know you aren’t!
Know that life has hidden treasures and blessings in disguise. There have been many times during our journey where I have been heartbroken, mad, sad and frustrated. But if I didn’t feel those emotions, I would not be where I am right now … with an adorable little boy to cuddle, with the lessons we have learned, and the appreciation we feel for having him! We are grateful for every small milestone and every large one.

Keep on fighting!
And remember, someday you will look back on all of this and have one pretty dang good story to tell, leaving you a much better person who goes forward to achieve great big things – all because you were inspired from your cancer experience.

Know as well that you leave a big impression on the world. Every time someone hears your story, it makes them feel that much more grateful for their own life. And I bet it changes that person, too. My guess is that people who meet you or hear your story will be inspired to help others … who in turn want to help and pay it forward as well.

Cancer kids are heroes with the super power to inspire and change lives.

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

As a native New Englander yearning for spring, I look forward to each tomorrow that might provide a glimpse of springtime’s warmth and color. I had asked my young son to share with me his thoughts about [...]]]>

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

As a native New Englander yearning for spring, I look forward to each tomorrow that might provide a glimpse of springtime’s warmth and color. I had asked my young son to share with me his thoughts about spring. He said the arrival of spring meant “time to plant new flowers and trees using the shovel you guys gave me.” It struck me that, unlike my vision of watching and waiting for spring to unfold, his version of a new season included action; a time to use our tools to be proactive about life. He stated this with the confidence and conviction that only a child can. Spring was something to be embraced, to be grown, to be cared for. I realized that spring was sitting right there beside me – in the form of a little boy who had survived cancer.

Cancer has touched my life many times, personally and professionally. Yet nothing could have prepared me for the most notorious spring day in my life when my child was diagnosed just shy of his second birthday. I was thrust on a journey that would teach me many things about life. Most notably, I have learned that we can be both devastated and resilient at the same time. By its nature and consequences, cancer is often defined as uncontrolled. In my experience, that has certainly been true. For that very reason, we often talk about the fight against cancer.

Much like my son’s perception of spring, the fight against cancer is all about action. I believe it comes in many variations, including receiving and giving direct patient care, research and development of new treatment protocols, participation in fundraising events, and innovative efforts to address the many faces of the disease. To say that the fight against cancer is daunting would be a gross understatement. However, I believe that we each bring something different to the table. It is in this joint effort that the challenge can be met.

As a physical therapist, my career has centered on the concept of quality of life. I have had the privilege of working with patients who were fighting to move forward following cancer treatment, as well as the privilege of working with patients who were losing their battle, but still fighting to be home with their loved ones in their final days. As the mother of a young survivor, the notion of quality of life has become even further cemented in my being. I could have never imagined that the greatest challenge of my career would be at the center of an ongoing rehab process with my own child. However, it has become a pivotal way in which I am able to improve the quality of his life – a top priority. These experiences have not only touched me, but have shaped me as a person and a therapist.

Taking action to preserve and improve quality of life has become the center of my role. I have definitively found my place in this fight as a mother and physical therapist, participating in a very personal battle. Most recently, in a much more vast way, I have also become an advocate of awareness and education for survivors as the founder of the website collegebeyondcancer.org.

An education is both an opportunity and an investment in oneself, providing a path for students to pursue their passions and to positively impact their lives and those of others. The mission of College Beyond Cancer is one of empowerment. By recognizing and applauding the courage, inner strength and perseverance required to face a seemingly insurmountable challenge, the triumphs of student survivors can be celebrated.

Many obstacles ensue when one embarks on a journey through childhood cancer, often creating financial hardships before the pursuit of a college education begins. However, the financial implications of a cancer diagnosis should never take away from anyone the opportunity for higher education. College Beyond Cancer is a secure, donation-based fundraising platform designed for college and graduate student survivors to proactively finance their educational expenses. The online platform is an innovative financing tool designed to be an adjunct and compliment to traditional college financing, such as scholarships and loans.

Student survivors are able to easily create a profile page on the website at no cost. The profile includes their story, educational aspirations, and fundraising goals depicted through their answers to a series of questions. They may also include photos and a video clip to engage potential contributors. Social networking tools are built into each page, enabling students to quickly spread the word about their campaign. Inspired contributors are provided with a secure and convenient option to donate.

College Beyond Cancer’s vision of empowerment will promote academic and personal growth for student survivors. Even at my son’s young age, I try to instill in him the value and importance of education. Of course, my hope is that he, too, will thrive in the pursuit of his academic goals someday, as a college student cancer survivor.

Although participating in the fight against cancer looks different for each of us, I believe we all have something valuable to offer. I would encourage each of you to reflect on what that might look like for you. As spring emerges and we grow and nurture flowers and trees, let us remember there are also young cancer survivors who need growth and nurturing.

Let’s take action. Together … we can empower tomorrow.

 Lisa Eatough, PT, DPT, is the founder of collegebeyondcancer.org, an online personal fundraising platform for educational expenses for college and graduate student cancer survivors. You may email Lisa with thoughts and questions at lisa@collegebeyondcancer.org.

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

The Leukemia & Lymphoma Society (LLS) and Cool Kids Campaign have announced a partnership to raise awareness about pediatric blood cancer. Both organizations’ missions align in the goal of improving the quality of life for patients and [...]]]>

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

The Leukemia & Lymphoma Society (LLS) and Cool Kids Campaign have announced a partnership to raise awareness about pediatric blood cancer. Both organizations’ missions align in the goal of improving the quality of life for patients and their families, and have agreed to cross-promote messages of help and hope through various media.

Our pink Cancer Fears ME!™ chemo cap (an item in our merchandise line) worn by a little girl named Sophie, a leukemia survivor, is featured in LLS’s Someday is Today advertising campaign. Her image appears nationally in various magazines and outdoor media; on the back cover of their 2012 annual report; in their e-newsletter, blog and social media; and on the landing page of the LLS.org website. In the ads, the slogan is credited to Cool Kids Campaign as our trademark.

“Learning you have cancer is frightening,” said Sharon Perfetti, Executive Director and co-founder of Cool Kids Campaign. “Our Cancer Fears ME!™  message is about turning the tables on cancer and helping a child to feel a sense of control as s/he faces its challenges.”

The photo has appeared in USA Today and the New York Times and is pending in marketing plans to include these publications: Connecticut Magazine, Westchester Magazine, Fortune, Washington Post, Chicago Magazine, New York Magazine, Washingtonian Magazine, Washington Business Journal, Chicago Crain’s Business, New Jersey Magazine, Hamptons Magazine, New York Best Doctors issue; and around local chapter markets in San Francisco, Chicago, Los Angeles, D.C., and Dallas.

Although Cool Kids Campaign is a small organization based in Towson, Maryland and serves local children through our Cool Kids Learning Center, some of our programs reach a national audience (such as this newspaper).
Online through cancerfearsme.org, an entire line of Cancer Fears ME!™  merchandise is offered. Product sales help to fund the organization’s free programs. Some of the kids modeling the clothing have cancer or are survivors. LLS has also included a link to our merchandise page on their website.“This opportunity is very exciting for Cool Kids Campaign in the way of potential growth for us and casting a larger net,” said Chris Federico, President. “We’re thrilled to be associated with such a large, well respected, and notable organization such as LLS. More importantly, however, is that both charities share the same focus – helping kids with cancer.”

Founded in 1949, the Leukemia & Lymphoma Society is the world’s largest voluntary health agency dedicated to blood cancer. The organization funds lifesaving blood cancer research around the world and provides free information and support services. Headquartered in White Plains, N.Y., LLS has chapters throughout the United States and Canada.

Cool Kids Campaign feels that aligning with LLS will help to bring even more awareness to our positive message.

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

Our family was complete. In March 2004, my wife Tammy and I adopted our sixth child. Everything seemed to be going well until February 18, 2007 when our world fell apart.

“Until [...]]]>

 (as published in Spring 2013 issue of our free newspaper, Cool Kids Connection)

Our family was complete. In March 2004, my wife Tammy and I adopted our sixth child. Everything seemed to be going well until February 18, 2007 when our world fell apart.

“Until that Sunday, we had no idea there was anything wrong with our beautiful, happy, confident five-year-old daughter Juliana,” said Tammy. “She came into our room that morning complaining about a bump under her right arm.”

The bump turned out to be a swollen lymph node; we discovered the next day at the pediatrician’s office that she had a tumor on her right forearm. After x-rays and an MRI, we received that awful call from the doctor; it appeared that the tumor was cancerous and had metastasized to the lymph node. Juliana had stage 3, group 3 Alveolar Rhabdomyosarcoma.

I remember that phone call. I held Tammy in my arms as she sobbed. I questioned what we had done wrong to deserve this attack on our little girl. Why would we be “called” to adopt Juliana, only to lose her to a horrible disease? As a dad (like most dads), I just wanted to “fix it” and help my little girl be a little girl.

We had adopted Juliana from Minsk, Belarus in August 2003 when she was 20 months old. She had crossed eyes and a personality that was – and is – infectious. I remember how she jumped into my wife’s arms when we met her for the first time. It felt so natural for us to be together forever.

Together as a family – and with the prayers and support of so many people and organizations – Juliana was able to beat the cancer and feel good again. She thrived, grew taller and her hair grew back. Then our life collapsed again. In March 2011 the cancer returned in Juliana’s right thigh. She underwent 36 weeks of chemotherapy and five more of radiation. Last time the radiation burned her badly.

Every single day I thought I was going to lose “My Little Sunshine” who makes me happy when my skies are grey. Juliana brightens every place her little feet wander. Her courage lifts those who are down and gives me hope for a bright tomorrow. Her hugs pick me up while – as her dad – I’m supposed to be picking her up! Her courage and attitude wipes me out. It’s incredible!! She’s smiles so much, regardless of her pain.

Juliana had just finished treatment when my family was at the funeral of my wife’s uncle. While standing in the graveyard, Juliana told her mom that she was in pain and felt like she was going to pass out. We knew something was wrong … again. It was June 2012 and the cancer had returned for the third time, this time in her pelvis and in her chest cavity, pushing on her aorta (the main blood vessel near the heart).

OH MY GOD! She’s a goner, I thought. It felt like someone had slammed me in the stomach with a baseball bat. I cried and cried for a long time. The doctor indicated that there was not much hope. How could I face that possibility of losing my baby?

After quite a bit of time of grieving about the possibility of my child not making it through her battle, I began to look back at Juliana’s life. The other two times when she faced cancer, she placed her faith in her Mommy and Daddy. This time she was doing the same. Each and every day Juliana was struggling with nausea, bowel issues, hair falling out in clumps, depression, and many tears about spending days and days in the hospital every month. Yet she never stopped being a little girl.

My wife and I did our very best to keep her laughing while remembering an old proverb: A cheerful disposition is good for your health. Gloom and doom leave you bone-tired.

I can’t say enough about the thousands of people who have been following Juliana’s journey on facebook and youtube. Their kindness and prayers have kept me sane throughout her journey.

During this, our other five kids (adopted from Russia and Belarus) have been incredible. They are understanding and very patient with Juliana’s struggles. They love her so much. I realize that we could have had kids who griped and complained because everything is about Juliana-Juliana-Juliana. Not these kids. We are so blessed.

This cancer journey I would not wish on anyone on the planet. It is exhausting and it depletes almost all of our hopes and dreams. Yet there have been some upsides:

• Meeting tremendous people who have gone out of their way to help in ways in which they will never know the true impact on our family;
• Organizations like Cool Kids Campaign whose patient understanding “lifts our load” at times when we thought we would collapse;
• Knowing that we, the Carver family, are not alone and there are so many families who have gone through so much more; this helps to keeps our lives in perspective;
• Knowing that there is a “higher power” that loves my Juliana more than I can possibly imagine; this helps me to view life from a higher perspective.

Has this journey been easy? No way! Do I know what the future holds for our family? No way! I do know this, however, that Juliana’s courage, through all of her struggles, gives me hope to get up and spread her positive attitude and energy to the entire world.

That’s why I do my radio show and blog that impacts tens of thousands of people each month … to make a difference … just like Juliana has made a difference in my life.

I love you, Juliana!!

John Carver lives in Manchester, Maryland and is an inspirational writer, speaker, radio talk show host and pastor of Faith Outreach Chapel in Baltimore. Feel free to contact John at 410-905-8336, johncarver@wildblue.net or on johnwcarver.com. He also maintains a web page for his daughter, Juliana, at caringbridge.org/visit/julianacarver.

The 1st ever Baltimore Color Run was held on Saturday, May 11th. For our Cool Kids and their families, the race was more than just a chance to have fun and get covered in color (although that is a welcome side effect). When The Color Run organizers announced that we were the charity recipient, [...]]]>

The 1st ever Baltimore Color Run was held on Saturday, May 11th. For our Cool Kids and their families, the race was more than just a chance to have fun and get covered in color (although that is a welcome side effect). When The Color Run organizers announced that we were the charity recipient, we knew we wanted to show Baltimore there was more to childhood cancer than just numbers and statistics. That is why when runners passed the yellow color zone on Saturday we made sure they knew just how special those volunteers were.

Among those gathered to throw color on some 25,000 people was a special little boy named Thomas. Just two days prior to the race doctors told Thomas and his parents that he was officially in remission – meaning they could no longer detect cancer in his body. For Thomas and his family the Color Run represented one big party to celebrate this amazing news.

Pulled up on stage and recognized by Cool Kids Campaign Executive Director, Sharon Perfetti, the crowd swelled with cheers and applause as Thomas’s news was shared.

Thomas on stage at the post-race celebration

Watch The Crowd’s Reaction to Thomas’s News

Thank You Baltimore

From the bottom of our hearts, thank you Baltimore. To the runners who so clearly showed their support of our cause, to the volunteers who woke up early and stayed late to make this event happen (Thursday and Friday as well!), and to our Cool Kids and their families for once again sharing their stories with the world. A special thank you to Amanda and her team at The Color Run for putting on such an amazing event and for letting us be a part of it.

More Pictures

We have tons of great photos from the event. Check out:

• Cool Kids Campaign Facebook Album
• The Baltimore Sun photo album

Meet Cool Kid
KELIS LEE
in Lake Park, Florida

What grade are you in? 2nd

How old are you? age 8

If you wrote a book, what would it be [...]]]> (This feature was published in the Winter 2013 issue of our free newspaper, COOL KIDS CONNECTION)

Meet Cool Kid
KELIS LEE
in Lake Park, Florida

What grade are you in? 2nd

How old are you? age 8

If you wrote a book, what would it be about? about me!

What do you want to be when you grow up? a doctor

Do you enjoy sports? I like to play football, basketball, soccer, tennis and kickball

Favorite team? Gators!

Do you have siblings? Jabrina, age 5

What do you like to do for fun? I like to dance!

How do you like to help others? I like to give gifts

Favorite cereal? Rice Krispies and Frosted Flakes

Favorite snack? chips! hot chips!

Favorite animal? dolphin

Favorite subject in school? writing

Who’s your BFF? Phillip

Who is your favorite celebrity? The girls from ‘Shake it Up!’ because they can dance

What activities do you like to do for exercise? swim

Favorite movie? Jason vs. Freddy

Favorite TV show? Good Luck Charlie

Favorite video game? Michael Jackson on Wii

Favorite board game? Monopoly

If you were stranded on an island, what 3 things would you have with you?
clothes, food and fire

What are you most grateful for? the Police, because they are good

If you were a Seven Dwarf, which one would you be? Happy

If you could meet someone famous, who would it be? Modest Behavior

What question would you ask first? I would ask them to go to prom!

Meet Kelis’ Cool Caregiver
MEGAN FAY HAMERDINGER
in Boynton Beach, Florida

 In what hospital do you work?
I work for the Pediatric Oncology Support Team Inc. We serve families at the Palm Beach Children’s Hospital at St. Mary’s Medical Center, and the Children’s Hospital at Palms West Hospital.

What is your job title? Family Advocate

What do you do specifically?
I provide support to the children and families. I check on them every day, assess needs, play and talk.

Favorite part of your job? playing with kids

Favorite sport to watch and/or play? I don’t mind watching soccer

Are you married? no

Do you have children? no

What do you enjoy doing for fun?
going to the beach, movies, spending time with friends and do-it-yourself projects

Favorite movie? Center Stage

Favorite TV show? The Big Bang Theory

Do you like cats or dogs? dogs

What’s on your iPod?
All kinds of music from Rock to 70′s jams to dance and country. It all depends on my mood.

Favorite book? The Giver

Favorite board game? Candyland

Favorite school subject as a kid? Science

Favorite dessert?  Key Lime pie

Favorite season? Summer

Favorite cereal? Honey Nut Chex

Favorite fruit? strawberries

What celebrity do you admire and why?
Jane Seymour because she provides a positive message to others

If you were a Seven Dwarf, which one would you be? Happy

If you could have dinner with one person (alive or deceased), who would it be and why?
My grandfather so he could see me as an adult.

On June 15, 1997, my husband and I witnessed the birth of our second son. As the nurses held him ever so dearly and placed him under the warm lamp, his tiny smile was the biggest as [...]]]> (This story was published in the Winter 2013 issue of our free newspaper, COOL KIDS CONNECTION)

On June 15, 1997, my husband and I witnessed the birth of our second son. As the nurses held him ever so dearly and placed him under the warm lamp, his tiny smile was the biggest as it lit up the room and touched all hearts who witnessed his amazing birth. It was my decision that his name should be Mitchell Anderson, Jr.

As Mitchell grew, he was very articulate. My favorite story to share in reference to the laughter our son constantly brings to us, is this … One day we were in the pharmacy when our son was 2-years-old. There’s something about smaller children who are unable to control their vocal cords – Mitchell spoke loudly. (I’ve always wondered if he was hard of hearing! He reminded me of an elderly man). Everyone in the store was all smiles as this little toddler articulated from the top of his lungs. At the checkout counter, the cashier smiled as she recognized this child as the same one she had heard throughout the store. As she engaged him in conversation, Mitchell shared with the cashier his perception of his name.

“You know, me and my daddy have two different last names.

His last name is Anderson and my last name is Jr.” The whole pharmacy chuckled as I stood there slightly embarrassed. I could not wait to get my young son into the car to explain that he indeed did have his daddy’s last name, and that ‘Jr.’ is an addition to the name, like Mr. or Mrs.

Teen years and the diagnosis 

As our son began to grow he brought us plenty of smiles and laughter. He was the biggest help around the house. We could not have asked for a sweeter child. Then in June of 2011when Mitchell was 14, we noticed him limping and complaining of what we thought was growing pains. We decided to take him to a local clinic; they referred us to an orthopedic physician. After a scan the doctor referred us to a pediatric orthopedic specialist in Louisiana. In September 2011 we received devastating news – our son had cancer.

We were told that his is a rare form of cancer – one in 100,000 people are diagnosed with it. I was reminded of our family’s first big tragedy in 2005 when my husband, the source of our household income, had become disabled. During that time, I had been a stay-at-home mom trying to keep things together. Thank God we made it. And now this.

I work at a bank and began to take time off to travel with my husband and son to Louisiana while my mother-in-law helped care for our 9- and 10-year-old sons, who are amazing, very helpful and entertaining. As Mitchell went through chemotherapy he didn’t complain, he just continued to go and get it done. He shared a special bond with his dad – they laughed a lot at me. I would take off from work periodically to swap with my husband since we had to travel to Louisiana where our son stayed in the hospital for treatments. Mitchell informed me of how he felt about this arrangement.

“Mom, no offense to you, but you can continue to work while I spend a lot of time with dad,” he said.

Through it all he kept a positive attitude and filled his days with laughter and funny cartoons. It was medicine for us as we watched him sit on the computer wearing ear plugs, laughing and laughing.

When we were contacted by the Make-A -Wish Foundation, they had asked our son what he would like as his wish. At that time he was on crutches and just had had a partial knee and leg replacement and wore a prosthetic. His wish was, “I want to go sky diving.”

“WHAT???” was the reply of the doctors, who chuckled. One doctor said he was trying to fix Mitchell’s leg, not break it! Of course the answer was no.

Our son is doing well, now age 15, and ready to resume school. Despite it all he stayed above his high school class as he was being homeschooled. He recently took a state test and scored as one of the highest. We are thankful for Mitchell, who has continued to bring laughter and smiles through it all. We were elated that he even had the opportunity to serve as an ‘extra’ in a major blockbuster movie, Broken City, which will be playing in theaters beginning January 18, 2013. It stars actors Mark Walberg and Catherine Zeta Jones; we captured a picture of Mitchell with Ms. Zeta Jones.

Our son, Mitchell Anderson, Jr., is our star! Even though he was very sick during chemotherapy, he still wore a smile – when there was nothing to smile about.

My passion lies in being an artist. I take my art bag everywhere I go. Even through years of my brother’s chemo, my art hung all around. Other patients always enjoyed when I drew something [...]]]> (This story was published in the Winter 2013 issue of our free newspaper, COOL KIDS CONNECTION)

My passion lies in being an artist. I take my art bag everywhere I go. Even through years of my brother’s chemo, my art hung all around. Other patients always enjoyed when I drew something especially for them. As you can tell, it fills my heart to share my love of art inspired by my brother, Jesse Adam Rivera Valadez, who passed May 26, 2012 at age 46 from Stage 4 Cholangiocarcinoma. He was a musician and Drummer Extraordinaire. He was my big brother; he protected me and loved me unconditionally. He taught me so much about life – and death. He told me not to worry … “Everything is gonna be alright” … that this is his journey and he’s okay with it … “God’s plan. We’ll hang out again!”

I’ve learned through these past years how just a little appreciation (or a lot for that matter) truly makes a difference. How a small piece of art can make someone smile and feel loved. I became friends just by sharing my art with some of the other San Diego Hospice patients and their families. I had no idea of the effect it would make … to touch the hearts of the families. They made the effort to thank me, and tell me just how much my art meant to them. It was always a positive message – both in my art and in their response.

I saw how my art also affected the nurses as well. There was so much love shared all around. Truly an experience I will never forget.

BE INSPIRED. Thank you for letting me share my passion and love for art … inspired by my brother’s love and courageous fight! My love for sharing and inspiring … and giving hope!

My name is Maria Joffrion. I am the mom of four great kids: Ben (age 10), Lucia (8), Tommy (6) and Sean (4). My 6-year-old Tommy has NF1, optic nerve tumors, brain tumor and CM [...]]]> (This poem was published on the cover of the Winter 2013 issue of our free newspaper, COOL KIDS CONNECTION)

My name is Maria Joffrion. I am the mom of four great kids: Ben (age 10), Lucia (8), Tommy (6) and Sean (4). My 6-year-old Tommy has NF1, optic nerve tumors, brain tumor and CM Leukemia. Ben wrote a very sweet poem and would like to share it with other siblings. ~ Maria Joffrion, Leominster, MA

I AM
by Ben J, age 10

I AM a smart caring boy
I wonder if world peace will ever come
I hear my brothers and sister having a good time
I want to be with them
I am a smart caring boy

I pretend the war is over but it isn’t
I touch my thoughts, thinking
I worry about my brother Tommy
I cry when I’m happy or sad
I am a smart caring boy

I understand that Tommy needs more attention
I say that he will be better
I dream of my mom coming home saying that he is better
I try not to worry
I hope that my dream will come true
I am a smart caring boy