You know from the womb how amazing your child is going to be. Not because you’re the mommy but because the energy and feelings that surge through you as your baby grows! Every now and then though comes a child that will take the world by storm. These aren’t your average little ones, these are your real life superheroes that will steal the hearts of many with a courageous journey and the beginning of a fighter’s story.
So here goes Camden’s….Camden was born November 17th, 2015 with a condition known as Gastroschisis. This is when there is a hole in the abdomen that gives space for the intestines to be outside of the body. He spent several days under the care of Pediatricians at the Children’s Hospital of Philadelphia until they deemed him stable enough to perform corrective surgery this. Thirty-seven days after his birth we received a Christmas blessing! He came home on December 24th to his family and loved ones.
The past year has been a journey though, he has gotten sick several times and been in and out of doctor’s offices without any diagnosis that could explain what was going on. On his 1st birthday he was able to celebrate with his family at Disney for several days. However, once again he became sick and upon his return to Pennsylvania had to go to the E.R. On November 27th we received the news that no parent ever wants to hear. Camden was diagnosed with a rare type of cancer called Nueroblastoma. As a result he was sent back to CHOP to begin this new fighting journey!
His Pediatric Oncologists estimates that he will require extensive treatment for approximately one year of chemotherapy, surgery, and several other types of treatment required to get him through this. At this time he has a strong team of people that love him dearly and will do anything possible to make sure he gets through this. However, this is a very sensitive time for his family and they need lots of love, supportive words, encouragement, prayer, and positive vibes.
Rina loves reading, swimming skiing biking hiking and her puppy Jupiter. Rina is artistic and loves to sing. She also enjoys reading any chance she gets including comic books. She has a special love super hero little brother Patrick who saved her life.
On May 10, 2013 we heard the heartbreaking news “Your child has Leukemia.” Rina immediately started chemo 5/13/13. On 5/21/13, she received a diagnosis is Philadelphia Chromosome – ALL, a rare and aggressive form of ALL of which only 5% of kids have this subtype of ALL. The treatment has been intense: many rounds of chemo, radiation and a bone marrow transplant (from her brother, Patrick). Rina has been extremely brave and her resiliency has shown us what a fighter she is. We had so much hope and determination in the midst of the unknown. We feel blessed with a great support system of family and friends and are proud to say she is has been cancer free for 4 years!
The Jessie Rees Foundation is inspired by Jessica Joy Rees. Jessie was a beautiful, smart, athletic and compassionate 12-year-old. She courageously fought two brain tumors (DIPG) from March 3, 2011 to January 5, 2012. On that painful January day when Jessie earned her angel wings, she left a legacy of hope, joy and encouragement to other kids fighting cancer. During her 10-month fight, Jessie selflessly focused on other kids fighting cancer, or Courageous Kids as she would call them.
1. Why was your organization established? Tell us your why? Jessie shared her message to NEGU® (Never Ever Give Up) with as many Courageous Kids as she could. Both online and in person during her visits to the hospital. She knew cancer made them feel lonely and limited, so she personally stuffed and shipped her JoyJars to more than 3,000 Courageous Kids fighting cancer. Since 2012, the Jessie Rees Foundation has been able to stuff and send more than 150,000 of Jessie’s JoyJars to Courageous Kids worldwide.
2. Tell us about your organization. What is your mission? On April 8, 2011, Jessie’s 12th birthday, she had a wish…”Please help every kid fighting cancer to Never Ever Give Up!” Her wish is the sole mission of the Jessie Rees Foundation and now referred to as “Jessie’s Wish.” Her wish helps us ensure that every kid fighting cancer has the support to Never Ever Give Up!
Services
3. What are the services you offer to pediatric cancer patients? The Jessie Rees Foundation fulfills Jessie’s wish by committing 100% of its resources to building relationships to encourage each Courageous Kid and family to NEGU. Jessie’s JoyJars are the beginning of a relationship with a Courageous Family in chaos. Each of Jessie’s JoyJars are stuffed with age-appropriate toys to put a smile on the face of a Courageous Kid. They also have the next steps for parents to enroll their child in a FREE Year of JOY – where the entire family will receive continuous boosts of hope, joy and love to empower them to NEGU! The Jessie Rees Foundation provides them with meaningful encouragement during the most difficult season in their lives.
4. What do you wish more people knew about your non profit or the work you are accomplishing? Everyone of Jessie’s JoyJars is FREE to Courageous Kids. More than 150,000 Courageous Kids fighting cancer have received JoyJars. We will continue to care until their is a cure!
Get Involved
5. How can we get involved in helping you achieve your mission? If you want to help, $20 sends a JoyJar full of hospital approved toys directly to a child fighting cancer. If you know a child fighting cancer, please encourage them to sign up to receive their FREE Year of JOY here: jessie.org/joy/
We are so happy to share with you The Jessie Rees Foundation and the many ways they are serving the childhood cancer community. Visit their website if you would like more information about or to get involved.
Isaiah loves his big brother. He lights up the second he sees him. He’s crawling but not walking yet. He loves music, bubbles and balls.
In the fall of last year, Isaiah woke up one morning with a droopy eye which eventually (a month later) led to his diagnosis of stage 2 neuroblastoma. Changes in the eyes is a common symptom of neuroblastoma but children can also exhibit pain in the legs or arms or a lump or mass that the parent can feel. Surgery and chemotherapy are standard treatments for neuroblastoma. Isaiah has had two surgeries along with chemotherapy treatment.
This cancer diagnosis has been extremely trying. I had to quit my job to take care of Isaiah and financially we just aren’t surviving. It is very hard with two other children.
MaxLove Project is a Santa Ana, California based nonprofit organization with a mission to increase the quality of life and reduce health risks for all children surviving cancer, both in treatment and beyond. They empower families fighting childhood cancers and related life-threatening conditions with quality of life care, fierce foods, whole-body wellness resources, education and research. They believe that true health starts when families are empowered to be active partners in their child’s healing. Wellness matters. You really can enhance treatment efficacy and mitigate the lifelong devastating side effects of treatment by incorporating wellness strategies. That said, they don’t believe in “perfect”. Their motto is “perfect is the enemy of the good, strive for progress over perfection.” They are a community of parents and caregivers who help families with all of this as they share in our learning.
Misson
1. Tell us about your organization.What is your mission?
At MaxLove Project, we invest in hope. Today, nearly 80% of all children diagnosed with some cancers survive beyond 5 years. While this is great news for many, the fight for most is never over. Researchers now know that the treatments that save lives also increase later risks for serious, life-threatening illnesses. These health risks are lifelong, increase with age, and can result in early death.
This is why we’re kickstarting our own wellness revolution, one specifically for kids and families fighting cancer and the lifelong effects of cancer treatment. MaxLove Project’s mission is to empower families fighting childhood cancers and related life-threatening conditions with quality of life care, fierce foods, whole-body wellness resources, education and research. We believe that true health starts when families are empowered to be active partners in their child’s healing.
Inspired by SuperMax Wilford, a brain cancer fighting superhero, MaxLove Project is a volunteer-powered, grassroots nonprofit organization founded to help SuperKids thrive against cancer and life-threatening conditions. We believe that all kids should have full access to every cancer-fighting tool available, including excellent nutrition and therapeutic resources such as acupuncture, physical activity, and healing narratives.
Teaming up with a diverse group of doctors, nurses, dietitians, chefs, farmers, integrative medicine practitioners and artists, MaxLove Project equips families to thrive within the pediatric healthcare system of today—where the standard of care for most life-limiting illnesses does not include essential integrative therapies—as we work to change the system of tomorrow. MaxLove Project’s programs and resources support families in the key areas of survivorship health. Each program focuses on several “super actions” for lifelong healthy survivorship. We are a community of dedicated change-makers who believe in the power of integrative health care for all children.
2. Why was your organization established? Can you tell us your “why”? MaxLove Project was established in the fall of 2011 after my son, Max, was diagnosed with an intrinsic mixed-grade brainstem glioma at the age of 4 1/2. We started by distributing therapeutic Cloud b Twilight Turtles in partnership with the company and grew into the nutrition and integrative medicine space based on our experiences trying to save Max’s life. I am a trained chef and I knew we could do more for our son, and also share our learning with our community. It’s a long story, but today our hospital has a protocol for the ketogenic diet and solid tumors, thanks to Max. He’s now 10 years old and thriving, still fighting, but thriving.
Services
3. What are the services you offer to pediatric cancer patients?
MaxLove Project provides educational, programmatic, and direct support that aims to improve quality of life and lower cancer-related health risks for children in treatment and survivorship. MaxLove Project programs include wellness start-up packages (BeSuper & Thrive Welcome Kit), culinary medicine cooking classes (Fierce Foods Academy), culinary medicine education materials (Fierce Foods Guide), health promotion art therapy (Camp Make & Believe), fully-funded individualized dietetic consultations with Registered Dietitians, dietitian- and health-coach-facilitated online parent support groups (SuperFamilies Support Network), fully-funded organic broth for families in treatment (Broth Bank), hospital library program (Ethan’s & Choco’s Book Club), cancer research funding, and a 12-week integrative medicine support program for childhood cancer families (Ohana Project). Families can sign up with us via this link.
4. What do you wish more people knew about your non profit or the work you are accomplishing? MaxLove Project provides empowering, evidence-based integrative medicine and wellness resources to families facing childhood cancers. We have a national support network of over 850 families where we engage in therapeutic social support and distribute essential evidence-based information. We are non-judgemental and supportive, we meet each other where we are in the the space of compassion, empathy, and love. There is no one way or right way to do this, and each family and individual demands a unique wellness protocol, so there’s no one way or one size fits all approach. We bring together a community of experts, clinicians, families, researchers, chefs, and farmers to create a therapeutic community of support.
We are incredibly excited to share our work in the space of culinary medicine, a movement we’re growing with hospital partners nationwide. We’re enlisting chefs and nutrition experts to help families learn how to cook therapeutically. Also, we are engaging in unique and timely research project in integrative medicine for childhood cancer patients and survivors, called The Ohana Project. Lastly, we are funding brain cancer research at Barrow Neurological Institute at Phoenix Children’s Hospital that’s focused on the intersection of nutrition and cancer. Please follow us on social media for updates. Very big things are happening now, this year, and we’re so excited to share our learning with families across the nation.
Get Involved
5. How can we get involved in helping you achieve your mission? There are a few ways to get involved. The first, and easiest, is to take to social media and share our posts. Our Facebook page is www.facebook.com/maxloveproject. We often share cutting edge research as well as wellness tips and even recipes. You never know when a shared resource can really come at a time of need for a family facing cancer. In fact, in September, we generally collaborate with The Honest Company on a massive social media campaign for Childhood Cancer Awareness Month. We’ve brought many new allies to the cause this way, but it would be wonderful to further engage our community as well.
We have a SuperKid Ambassador program. Any SuperFamily — in treatment, survivorship, or bereaved — can get involved and work with us to share the giving of therapeutic resources. We’ll be launching a new campaign this summer in preparation for Childhood Cancer Awareness Month. The process will be accessible here: http://www.maxloveproject.org/superkid-ambassador-program
Lastly, we will be opening a chapter program next year. We’ll be partnering with families and hospitals to create culinary medicine programs based on our Fierce Foods Academy with mobile teaching kitchen units. We will also be sharing our unique evidence-based integrative medicine program with these chapters. It will be an exciting project to support. But today, we do have educational materials and resources to share with any interested hospital, and any MaxLove family can bring these resources to their hospital. They can just contact us at info@maxloveproject.org.
We are so happy to share with you the MaxLove Project and the many ways they are serving the childhood cancer community. Visit their website if you would like more information about or to get involved.
