Cool Kids Campaign http://www.coolkidscampaign.org For Kids with Cancer & Their Familes, We're There. Wed, 21 Jun 2017 21:14:40 +0000 en-US hourly 1 Meet Dezirae & her nurse, Erika, from Baltimore http://www.coolkidscampaign.org/meet-dezirae-erika/ Thu, 24 Oct 2013 18:01:45 +0000 http://www.www.coolkidscampaign.org/?p=8069 cool kid cool caregiver SNIP2

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Grandmom proud of her little super hero … http://www.coolkidscampaign.org/grandmom-proud/ Thu, 24 Oct 2013 17:40:35 +0000 http://www.www.coolkidscampaign.org/?p=8061 Continue Reading]]> A story from our Fall 2013 Cool Kids Connection ...

Super Hero title SNIP p 11

Ryan was a normal, happy, rambunctious little boy. He loved to run, ride his bike, and torment his little sister, Abby. In November 2012, he was diagnosed with Ewings Sarcoma … a rare bone cancer. I am Ryan’s grandmother and caregiver. I was by his side every step of the journey, and these are just a few of the things that I learned while I watched this precious child fight the fight for life.

I learned that you can smile through ANYTHING. There were a lot of tears and anguish, but those never lasted for long. Ryan hated getting his port accessed, and it was always a struggle to get it done. The tears would flow, the struggle to get him to hold still, the begging: “Please, Gramma, don’t let them do it!” Those tears would be gone in seconds after the port was accessed, to be replaced by Ryan’s brilliant smile. Through “pokeys” (daily shots he needed to help his blood build back up after chemo), through bouts of vomiting, through the times he was too weak to raise his head … there was always that smile.

I have learned that no matter what I have going on in my life, there is always room to have compassion and love for others. No matter how sick or how tired Ryan was, he always asked about the other kids we met while being treated. He always said a prayer for them – every night.

I learned to adapt to change, and never complain about it. One of the hardest things in the fight with cancer is the fact that you can never plan anything. If you plan on going to the movies on a certain night, that is the night a fever will pop up. You end up at the Emergency Room instead of the movie theater. There were many times we had planned something fun for Ryan, and instead we had to go to the hospital or stay home because his blood counts were low. Never once did he cry or complain about it. He took the changes in stride and made the best of it all.

There are so many lessons I have learned from this brave boy … but probably the biggest lesson of all was to keep on keeping on. Through months of pain, sickness, chemotherapy, radiation, and hospital stays, Ryan just kept on going. Some days he slept 20 hours or more. Some days there was no sleep at all. Some days were spent so sick that he could not lift his head off the pillow. Some days there was so much pain, all he could do was moan. Through it all, he never gave up. He never gave in.

I am proud of my little super hero. He fought a valiant fight – and for now he has won! On July 26, 2013, scans showed that the cancer was gone. Ewings Sarcoma has a nasty habit of recurring, and we do not know what the future will bring. But Ryan will face it with the same courage and strength that brought him through this battle.

Super hero SNIP p 11

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One determined teen http://www.coolkidscampaign.org/one-determined-teen/ Thu, 24 Oct 2013 17:16:49 +0000 http://www.www.coolkidscampaign.org/?p=8051 Continue Reading]]> A story from our Fall 2013 Cool Kids Connection ...

Mattie TITLE snip

Mattie & Mom

I firmly believe with the right mindset anything can be done. In my experience with ovarian cancer, I realized that would define me no matter what happens. Cancer is scary, it’s true, because until a cure is found it still represents the unknown, something we can’t control.

One thing everyone can control is how they face the situation. It was almost two years ago at age 14 that I was diagnosed with type one ovarian cancer. I had already had my tumor removed when I thought I was going in just for a checkup; my doctor told me I had cancer and we needed to start chemo soon. If the chemo didn’t work, I would have about a year to live. I sat there, and honestly, all I could think about was losing my hair. I cried for a few minutes until realizing that crying was not solving anything and this was something I would just have to get through. Cancer was not going to rule my life or change me.

I was determined to win this battle and prove to everyone that cancer does not always mean death; it can become a new hope for life. I had to consider: ‘What if I do lose this battle?’ … ‘What if things don’t turn out like I plan?’ Then fine, I was not going to let that stop me from living now. There was no point in me sitting around and feeling sorry for myself when there were people out there who had it a thousand times worse than me. I was not only going to get through this for me, but I was going to do it for them. So, I delayed chemo until after Halloween because I really like costumes. I was dressing up a lemon and I was going to wear it!

Before chemo I decided to cut my hair really short and donate it since I wasn’t going to need it. Plus I wanted to get used to the feeling of not having much hair. That was really hard for me. As girls, I think we obsess over our hair and the things we think make us pretty. Honestly, I hated my short hair at first. I didn’t feel like myself. I think what truly bothered me about it was what it represented. I was so afraid for everyone to see that I was sick or that there was something wrong with me. I didn’t want people to see me or treat me any differently than anyone else. I think that’s the normalcy we all crave as things change.

I didn’t want to be seen or known as sick. I refused to call myself or let anyone else call me sick. I would say that I was “simply not at my best.”

Since ovarian cancer could affect my ability to have children later in life, I had to take other precautions. I can’t even explain the looks I got as a 14-year-old sitting in the waiting room of a fertility clinic! 🙂 Soon after, I started chemotherapy – which is simply terrible, to say the least! I think every cancer patient will agree that chemo sucks. I must say though, when you can finally eat after all of that – food never tasted so good. Three months after finishing chemo I was able to travel on my school’s trip to Argentina, where I had the time of my life. I really hope to go back one day. My host family knew about my cancer and was very supportive. I didn’t want anything to hold me back.

I think cancer wears you, but you just come out stronger and more confident. When I entered remission I felt invincible – ready for the next battle. I was now at the top of the mountain! Cancer not only affects you, but everyone around you. The massive amount of love and support I received from everyone around me was incredible. I believe everything happens for a reason. If it wasn’t for my cancer I wouldn’t be as confident as I am today.

I couldn’t play basketball anymore, so I started helping backstage in the theatre community where I met some amazing people who I might not have had the chance to connect with otherwise. I’ve become more passionate about volleyball because I played on my club team through it all. Yes, I had to miss a few tournaments and practices, and wearing a wig while playing was not that easy, but it was worth it! I got to meet my favorite band, McFly, and attend some great concerts.

I joined the board of the Baltimore Women’s Classic, which is a race to support women with gynecological cancers; it’s held annually in June. I am also starting to get more involved with the National Ovarian Cancer Coalition. I think I am a better person today than I would have ever been having gone through the struggles and rewards of having cancer. People are always searching for the negative with cancer, yet with every opportunity or challenge with which you are presented; there can be something positive taken from it.

The three words I like to abide by are … mentality, patience and effort. While keeping those in mind, everything seems more doable. Cancer can make you or break you – refuse to be broken!

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One month is not enough http://www.coolkidscampaign.org/one-month-is-not-enough/ Thu, 24 Oct 2013 16:43:42 +0000 http://www.www.coolkidscampaign.org/?p=8035 Continue Reading]]> A story from our Fall 2013 Cool Kids Connection ...

one month not enough TITLE snip

As September winds down I can't help but feel frustrated and a little sad. September is Childhood Cancer Awareness Month. Just one month that is meant to support ALL of the childhood cancers: Leukemia, Neuroblastoma, Lymphoma, Ewing Sarcoma, Hodgkins Disease, Retinoblastoma ... and too many others. And we are supposed to somehow bring awareness to all these cancers in a single month.

one month not enough SNIPOctober is here now. And the country will focus on breast cancer awareness. And that's fantastic! People will dress in pink and wear pink ribbons and participate in pink runs and walks. Football teams will wear pink jerseys. I'm pretty sure the White House and the Empire State Building even have pink lights. And I'm thankful for the awareness. Truly I am. I know many women who are breast cancer survivors. And it is because of all the steps that have been taken, the research, and the early mammograms that they have survived. And I am so, so thankful.

And yet, I can't help but wish that childhood cancer awareness was even half as important to others as is breast cancer awareness.

I wish that the White House had gold lights. I wish that there was more money focused on childhood cancer research. I wish that more children could be saved.

I know too many families whose children have fought this horrible disease. I know too many families whose children have lost. Their faces will never leave me. Their amazing spirits will forever be a part of my life. I'm thankful to have known them. And as I look at Tyler and say a prayer of thanksgiving that he survived, I can't help but think of those who did not. And it breaks my heart a little bit every time.

So parents, kiss your children. Hug them tight. Say a prayer of gratitude that they are healthy and happy. And pray that someday the focus on childhood cancer research will be greater. Pray that more children can be saved. Pray that these awful diseases aren't allowed to claim another child.

Tyler was diagnosed with A.L.L. on February 29, 2008. He has been officially in remission since April 2010. The Gardners say they “pray every day that he has truly beaten this disease.”  Tyler has Down Syndrome and other special needs; he is also adopted. “He is such a joy and blessing in our family,” says his mom Jodie. “He is pretty lovable. He has a great personality and he's full of spunk!”

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People need to know what our children are going through http://www.coolkidscampaign.org/people-need-to-know-what-our-children-are-going-through/ http://www.coolkidscampaign.org/people-need-to-know-what-our-children-are-going-through/#comments Tue, 22 Oct 2013 18:57:54 +0000 http://www.www.coolkidscampaign.org/?p=7985 Continue Reading]]> A story from our Fall 2013 Cool Kids Connection ...

COVER Help our kids grow old

A story from our FALL 2013 Cool Kids Connection
By Annika Warrior Princess' momma
Salt Lake City, Utah

"Today my 18-month-old daughter was released from the ICU after a major surgery to remove cancer from her tiny body. She was diagnosed with stage 4 Neuroblastoma when she was just 10 weeks old. She has endured 12 rounds of chemo, several biopsies, and the devastation of a relapse. She is doing amazingly well and exceeding doctors' expectations with how quickly she is healing from the surgery.

It is only now that I am finally allowing my first tears to fall, and they won't stop. Why now?" 

Adrenaline can carry you through difficult situations, but the letdown comes when you sometimes allow yourself to process.

Annika with wires in bed

I'm including a photo of Annika in the hospital bed – one that I thought I wouldn't share for a long time, yet today I feel compelled to share it. You see, when my daughter was in the ICU, rooms surrounding hers were occupied by adults also fighting cancer. The waiting room for the ICU was full of crying families. One particular family was losing their 92-year-old grandfather to cancer. I can relate, as I was equally devastated when my grandfather passed away.

What really resonated with me, however, was the sharp contrast between our situations. That grandfather had lived a full life, during which he had had children, hopefully fallen in love, taken trips around the world, and perhaps graduated high school and college. My 18-month-old has never experienced a day outside my womb when her body wasn't fighting the beast known as cancer. She hasn't had the chance yet to have her first day of school or fall in love. Yet she fights for her life.

This is also where the Cool Kids Campaign’s Cancer Fears ME! slogan helps me! It reminds me that although cancer is a force to be reckoned with, the power that my tiny daughter possesses is powerful, too! The reason I am sharing this picture is because these children need our help, and I need to be brave enough to show what childhood cancer really looks like.

People associate childhood cancer with happy, smiling, bald kids of which we always see pictures. We, their parents, are the only voices they have.

We need to continue working toward a cure for our little heroes. I know that current research won't help my daughter. I have to rely on treatment that past cancer families have fought for. Just as it's possible that an undiagnosed child may benefit from the research dollars for which I have fought.

I know childhood cancer isn't glamorous and is hard to stomach. But it is time – that instead of turning away from it – people realize that strength and comfort will come from their work and will make a difference in the lives of these cancer cuties.

If you are fortunate enough not to have a sick child, please do something to help. Donate to a worthy childhood cancer organization, or simply wear a gold ribbon on your shirt to help raise awareness. Help Them Grow Old, Wear Gold.

If your family has been affected by pediatric cancer, share your story. People need to know what our children are going through.

I would like to thank the helping hands that have helped to carry us along our journey. My amazing friends – the parents of The Utah Cancer Cuties; the amazing doctors and staff at my daughter’s hospital; Elliot and Annie our favorite therapy dogs; our knowledgeable and patient home nurse, Dylan, and of course, my wonderful family and friends. We couldn’t do this without all of you by our side.

Awareness = Funding
Funding = A Cure

 

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One likes Oreos and the other likes Cinnamon Toast Crunch – meet two cool people http://www.coolkidscampaign.org/one-likes-oreos-and-the-other-likes-cinnamon-toast-crunch-meet-two-cool-people/ Thu, 01 Aug 2013 17:22:10 +0000 http://www.www.coolkidscampaign.org/?p=7073 A feature from our Summer 2013 Cool Kids Connection newspaper …

cool kid and cool caregiver

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“I wondered … what if every cancer fighter could talk with a cancer survivor?” http://www.coolkidscampaign.org/i-wondered-what-if-every-cancer-fighter-could-talk-with-a-cancer-survivor/ Thu, 01 Aug 2013 17:09:32 +0000 http://www.www.coolkidscampaign.org/?p=7061 Continue Reading]]> jonny 1

I am a testicular cancer survivor. I was born in Saginaw, Michigan in 1975. When

I was a baby, my parents divorced and we moved to Bloomfield Hills, a suburb of
Detroit, where I attended Cranbrook Kingswood School from kindergarten through
high school. After graduation, I moved to Ann Arbor, Michigan where I earned a
bachelor’s degree in psychology from the University of Michigan. After college, I
returned to the Detroit area, working during the day while earning an MBA from
Wayne State University at night.

Suddenly one Thursday morning in October 2001, my busy world came to a
standstill. At 26 years old, I was diagnosed with testicular cancer. I couldn’t believe
it so I visited another doctor for a second opinion. He confirmed it – I had cancer.
The testicle was the epicenter of the disease. I went right into surgery and my left
testicle was removed.

Although the surgery went well, my visits to the doctor did not stop there. It soon
became clear that the cancer had spread (metastasized) from the testicle; the
disease was making its way up my body. This form of cancer was called a
nonseminoma – a mixture of many different types of cancer cells, as opposed to a
seminoma tumor which consists of one type of cancer cell. Nonseminomas are
much more aggressive and spread much faster than their counterpart.

I knew what was next – chemotherapy – yet I did not understand what that meant.
What is chemotherapy? What color is it? How will it make me feel? I called my
brother and started sobbing. I could barely talk. My world was shattered. But I was
not going to give up.

My oncologist told me that the treatments might make me sterile. So I went to a
cryogenics laboratory to bank sperm. After that it was time to start. My
chemotherapy recipe was known as BEP: Bleomycin, Etoposide and CisPlatin. My
regimen included three cycles of chemotherapy each lasting three weeks. One
cycle included a week of eight hours of daily chemo Monday through Friday and
two weeks of two hours of chemo on Wednesdays.

The treatment weakened my body and wiped out most of my white blood cells. In
fact, I was in such bad shape that the doctors were forced to delay my
chemotherapy while my body recovered between cycles. In addition, it caused
many side effects: throat sores, mouth sores, skin rashes, dry skin, cystic acne,
extreme fatigue, hair loss, numbness in my fingers and toes, and partial hearing
loss. But the most damaging side effect was a blood clot that developed in my left
arm. The clot formed around my port (the medical implant used as an access point
for chemo). The doctors had to remove my port, pull out most of the blood clot and
then pump me with blood thinners to break up the rest. With all the side effects
and delays, the chemotherapy lasted for five months.

At last, after all the treatment, I thought my fight was over. I slowly returned to my
life, such as going to the gym and socializing. Although I was happy to be alive,
every day was a challenge. I did not have as much energy. I looked different. I
struggled to find my post-cancer identity. Just as I was getting comfortable with
myself, I learned the fight was not over.

Nearly one year after chemotherapy, a routine CT scan showed four tumors along
my spine. Rather than risk cutting the spine, the surgeon entered through my
stomach. He made an 11-inch incision, placed my organs to the side, and removed
each tumor. The surgery lasted four hours and was successful.

Finally, I was freed from the disease and began my road to recovery. I made a vow
to myself during chemotherapy. I looked at others in the oncology clinic and
realized that I was different. Each day, my room was filled with family members and
close friends. With so much support, I did not have a chance to lose hope.
However, in many of the other rooms, hope already seemed lost. As I walked down
the hall with my chemotherapy IV-pole, I saw other people fighting cancer alone.
They were lying in bed, motionless, watching television or staring in space. Their
only stimulation was a nurse checking in for a minute or two on the hour. I knew
this was not right and it upset me. I felt guilty because I had so many good people
and positive energy around me. I made a silent promise that if I were given life after
cancer, I would help these people.

So how could I help? I walked into the other rooms, one at a time, and introduced
myself.

“Hey, what’s up?” I said. “I’m Jonny. What’s your name? I have testicular cancer.
What type of cancer do you have?”

Many people were older than me; a few younger. Although they were exhausted
just like me, everyone was friendly and welcomed my conversation. We shared
stories, emotions, and opinions about many things in life. We each had our own
type of the same disease. Some fought for themselves, others for their children,
and yet others for a spouse. But no matter the motivation, we were all fighting for
life. And I wanted to help them get it back. I wondered … what if every cancer fighter
could talk with a cancer survivor?

Someone who not only had beaten the same type of cancer, but who also was the
same age and gender? The cancer survivor could be like an angel to that person –
walking, living proof that the fighter could win, too. What an amazing connection!
This is the reason I created Imerman Angels, a nonprofit organization that carefully
matches a person touched by cancer with a “Mentor Angel” - someone who has
fought and survived the same type of cancer.

The number one way to help our nonprofit organization is to connect us with other cancer fighters and survivors – the lifeblood of our service. No one should fight this disease alone. No one. I wish each of you well.

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She and her personality have played and sang through the toughest times … http://www.coolkidscampaign.org/she-and-her-personality-have-played-and-sang-through-the-toughest-times/ Tue, 30 Jul 2013 20:12:24 +0000 http://www.www.coolkidscampaign.org/?p=7046 Continue Reading]]> A dad's story from our Summer 2013 Cool Kids Connection newspaper …

leukemia 4 year old p 6

It was a Wednesday evening in February 2012 when my wife Eileen and I noticed Coral's limp. It was quite minor as she was not impeded in the least of getting where she wanted to go. Thinking that it was probably growing pains in our then 3-year-old girl, we assumed it would just get better on its own.

But it did not get better. It got worse. The following Monday morning found us at her pediatrician's office. After extensive prodding, pushing and questioning, Coral's doctor admitted that he did not know what was causing her knee to hurt. He ordered x-rays and a blood test to see if those would reveal anything. He contacted us later that morning and told us we were to be at the hematology clinic at Blank Children's Hospital downtown by early afternoon.

The sign on the door read Hematology/Oncology Clinic. I knew what hematology meant but oncology was a foreign word. We were greeted warmly and shortly after, met Dr. Wendy. The next few hours demonstrated her drive for results and the skilled labor and technology at her disposal ... at a pace that was unprecedented by any previous hospital visit in my experience.

First we were sent upstairs for another blood draw. After an emotionally and physically painful procedure for Coral, we had a new blood sample and an IV on an arm board. Coral was allowed to pick out a toy. The toys were a strange component to the day, starting soon after we arrived at the clinic. Coral was showered with gifts. What is this? I wondered. Entire closets full of toys still in their packages? Hand-knitted hats?

After a few hours of tests, the day had turned into late afternoon when Dr. Wendy asked us to join her in a small examining room. Dr. Wendy sat on the rolling stool and two nurses, Natalie and Kelli, stood nearby, closing the door behind them.

"I'm not one to sugarcoat words or beat around the bush," said Dr. Wendy. "Coral has Leukemia. God is not punishing you. She is safe now."

As those few words made their way into my head, my conscience became a torrent of shock, disbelief and questioning. How can she be safe? How would you know God is not punishing us?

"How reliable is this blood count thing?" I managed to get out a question.

"It's very reliable," replied the doctor.leukemia 3

As simple and weak as that answer was, I felt cornered. There was nowhere to go but face the reality that Coral Blossom was stricken with a life-threatening disease - Acute Lymphoblastic Leukemia (A.L.L.). Things started falling into place in my mind: the toys, the hats, the foreign word on the clinic door. The full burden was coming to rest. Every waking moment of the next 18 hours I spent crying for our young daughter's life.

As an engineer, I soon realized that my coping mechanism was going to be learning the whys and hows of treating A.L.L. in Daddy's littlest girl. I wanted to know - needed to know - what we were doing and why. I began to ask questions of her doctors and started researching on my own. I learned at least a basic understanding that has definitely helped me, and arguably, has helped Coral. (We also have two other children: Mica, 11 and Caden, 9.)

The next few days after diagnosis were a blur of emotions, information, decisions, coordination and planning. It was a paradigm shift of life. But Dr. Wendy and everyone at the clinic carried us through the next steps, not only for treatment, but for our well-being.

The first few days in the hospital began a near endless delivery of medications by mouth. Thankfully Coral has always taken them even if she put up some resistance. Later she displayed entertaining and creative ways to resist swallowing her meds, particularly at home. In one instance as we brought meds to her while she played in the living room, she stated matter-of-factly, "Pirates don't take Bactrim."

Occasionally throughout treatment, Eileen and I would experience an intense emotional feeling that would come and go. We called it 'the knife edge.' We didn't necessarily feel it at the same time; and it meant different things to each of us. Our paradigm shift of life included having a much clearer view of what was truly important. It also revealed an ebb and flow of normal life, and life with A.L.L. A knife edge day could be when the sudden realization of Coral's diagnosis interrupts normal routine, presenting the fine emotional balance between the two.

Wednesdays became our clinic day, about which Coral learned to ask almost daily. "What day is it tomorrow? Is it clinic day?" She has never warmed up to them. Then Coral's clinic agenda became "Where's Kathy?" (Coral's Child Life  professional). And sometimes the receptionist Shelley would dial Kathy's number and put Coral on the phone.

"Kathy, where are you?" asked my daughter. "I want to play." The initial news of leukemia was devastating, but good news followed soon after. The treatment was working very well and we felt a level of thankfulness that words cannot describe. For sure there have been plenty of difficult times. But for the most part Coral has remained her brilliant, quick-witted, direct self. She and her personality have played and sang through the toughest times. Currently we are in the maintenance phase of treatment and everything is going well. Coral is a happy girl who is growing quickly - like any other 4-year-old should be.

leukemia 2

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“Distraction for kids undergoing treatment is the best gift I can give.” http://www.coolkidscampaign.org/distraction-for-kids-undergoing-treatment-is-the-best-gift-i-can-give/ http://www.coolkidscampaign.org/distraction-for-kids-undergoing-treatment-is-the-best-gift-i-can-give/#comments Tue, 30 Jul 2013 19:26:14 +0000 http://www.www.coolkidscampaign.org/?p=7024 Continue Reading]]> A family's story from our Summer 2013 Cool Kids Connection newspaper ...

princess story p 2-3

Marisol Santiago ... the start of a beautiful thing. She was born on July 10, 2002 at nine pounds, one ounce and was a very good baby. Never cried. Later she always behaved in school. That may be why we never noticed that she was in pain. While attending preschool at age 4, Marisol slept longer at nap time than the other children. She didn't want to play or eat all of her food. Frequent visits to the doctor told us she had a slight fever, normal for a child in school since  they often get sick from other students. Take this ... and see you in two weeks. But it happened too often: the fevers, the colds, the napping.

One weekend while Marisol was visiting her dad, he noticed a bump no bigger than a mosquito bite on her right leg. It grew bigger and bigger to the size of a baseball. By the time we were scheduled for an ultrasound to question the bump, the fevers and the fatigue, it had changed from soft to rock-hard within a month. The next step was a biopsy. The ultrasound tech had no idea what was happening; he said we needed concrete results. Those came on Thanksgiving Day in November 2006. We were given the sour news that rocks your world - Your daughter has cancer. And she has to start the fight of her life to survive.

From that day on, we lived and breathed the hospital grounds and walls. To leave became a mere visit outside to smell the roses and returning when treatments of chemo, radiation, and medicinal needles made her very sick. This continued for three long years. During that time, Marisol had different plans for us. Approaching age 5, she wanted to forget about what we were experiencing. (I say we, because as a mother, you never want to see your child suffer.)

Marisol helped to create the start of a great idea. Every costume, every makeup kit, every loud plastic shoe I could find became our new life of forgetfulness called MAKE-BELIEVE. It changed our perspective about our experience in the hospital. She became her own Super Hero! Marisol told the nurses, "Before you give me my medicine or my treatment, I need to be dressed in one of my costumes and crown." Sometimes she would say, "Please put on my makeup."

It did wonders. And became a routine. The hospital staff became well aware of Marisol Santiago. She stayed up late at night sharing her costumes and makeup. Even the boys loved the concept. They would ask, "Who are you today?" Regardless of what Marisol would wear, she was still the Princess for the day.

Marisol picsAfter her treatments were finished, Marisol made it loud and clear what she thought - that every child deserves to smile and make memories to last a lifetime. In late 2008, we challenged ourselves to take this concept further - to dress up kids into whoever they wished to be for the day. It grew so fast that we established a not-for-profit organization called Princess for a Lifetime - dedicated to boys' and girls' happiness while enduring hospital stays.

We receive special requests from children to be dressed up as bunnies, ninjas, Sponge Bob Square Pants ... whatever they wish. Arts and crafts have been added to the agenda and we play their favorite tunes. We cater to any child suffering with an illness: cancer, sickle cell, blood disorder, Aids, chronic asthma, and others.The best medicine we have to give is the medicine of laughter,joy and happiness.

Distraction for these kids while undergoing treatment is the best gift I can give. Children suffering an illness have no clue, no understanding of what is happening to them. They need a cheer up! Let's lend a hand to turn their frown around.

Marisol is now a 10-year-old girl in remission who prepares every gift bag and every costume request we receive for special little boys and girls ranging in age from infancy to teenagers. We include a little gift for mom and dad as well. We also organize indoor and outdoor events to cater to groups of children, and organize a gift-giving program (i.e., toys and clothing) for hospitals, homeless shelters and local churches.

My mission is to tell the world how a slight fever in my little girl went unnoticed and ended up as cancer.That changed my child's life in many ways, most importantly, to do amazing things for families battling their children's illnesses.

princess story p 3

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“All I wanted was to have some normalcy in his school life.” http://www.coolkidscampaign.org/cover-story-from-summer-2013-connection-newspaper/ Tue, 30 Jul 2013 18:17:05 +0000 http://www.www.coolkidscampaign.org/?p=7014 Continue Reading]]> Cover story from our summer 2013 Cool Kids Connection newspaper...

cover story TITLE

One of Cool Kids Campaign's regular programs offered to kids with cancer is free tutoring here in our Cool Kids Learning Center in Towson, Md. This was designed two years ago in response to listening to families' concerns about the amount of school their children are missing during treatment and hospitalizations. Most families, already under financial strain because of the disease, are unable to hire a private tutor.

Now, thanks to Skype (a free online video and voice program between Skype users) our tutoring program is able to go national. In April,we launched our first Skype tutoring session between sixth-grader Nicolas Perez, 11,  in Brooklyn, N.Y.and one of our volunteer certified math tutors, Peggy Hauf, a retired educator who teaches grades 5-8.

After a parent coordinator at Nicholas'school discovered the Cool Kids Learning Center on our Web site, it was asked if there was a similar program in New York. To our knowledge there is not, so we offered Nicolas one-on­-one math tutoring sessions via Skype.

Nicolas P in Brooklyn, N.Y. is tutored at home via Skype by a volunteer certified teacher in the Cool Kids Learning Center in Towson, Md.

Nicolas P in Brooklyn, N.Y. is tutored at home via Skype by a volunteer certified teacher in the Cool Kids Learning Center in Towson, Md

"We had been struggling to find Nicolas the additional support he needed," said Elisabeth Perez. "It seemed there was nothing available for him. I was at my wit's end. All I wanted was to have some normalcy in his school life and for him to be able to keep up with his class. Being introduced to Cool Kids Campaign has meant the world to us. It's going great! We love Peggy! She's wonderful, kind and patient."

Nicolas seems to be responding very well and looks forward to the sessions, said Hauf. "His mom says it is very helpful to him. Hauf began tutoring Nicolas once a week and Perez has since requested adding a second weekly session.

"It's as if Peggy is in the room with us!" said Perez. "We are so grateful for this program. It has touched our lives. Hauf admits that teaching a student over the Internet is different than face to face. "I can't look over Nicolas' shoulder," she said. "He does the work, verbalizes what he's doing and then holds it up to show me." A white board helps them both when Hauf needs to show Nicolas part of a lesson.

Although the Perez arrangement is Cool Kids Campaign's first off-site tutoring session, we hope to continue to offer online tutoring to other kids with cancer - local and nationally - to kids who may be sequestered at home so as to remain germ free or whose parents are unable to make the drive to our office.

"This is our first time trying this," said Sharon Perfetti, Executive Director of Cool Kids Campaign," so we are experimenting. We asked Nicolas' mom for her feedback - and patience - as we figure out the best online tutoring situation."

Hauf thinks growing this program would be a fantastic benefit for children out there who need help - those who need this resource and don't find it convenient to visit the Learning Center, or those who are out-of-state. "To be able to access this help right from home is fantastic," she said.

In their next phase of off-site Skype tutoring, Cool Kids Campaign will accept five new students. If you are interested in free tutoring for your child via Skype, please contact Sharon Perfetti at sharon@www.coolkidscampaign.org or 410.560.7770. Before starting, you would need to register for a free Skype account on skype.com.

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