Lucy ran a fever for a week with all negative results. So finally, they did bloodwork and found her white blood count was super high, which led us to the cancer diagnosis.
She’s had numerous lumbar punctures and bone marrow tests. She’s on oral chemo daily and weekly chemo at the clinic. The horrible steroids she takes approximately every month for a week causes her to have roid rage with emotional outbursts that she can’t control. It’s very hard on the whole family. Her big sister, Remi who is 10, has started counseling to help her cope better.
Our whole family dynamic has changed. We no longer can enjoy day-to-day things without thinking about germs, side effects, and possible sicknesses that can show up at any given moment. It’s very stressful for all of us.
This month we are so excited to be shining our photographer spotlight on Valerie of Valerie Eidson Photography. Valerie is a portrait photographer based in Asheville, North Carolina. She specializes in children, family, and newborn photography, but never turns down an occasion to photograph something special. Her passion is to capture life’s everyday moments and turn them into timeless works of art.
How would you describe your photography? I would describe my photography as warm, emotive and magical.
What made you want to join The Gold Hope Project as a volunteer? I love sharing the gift of photography with others and using that gift to brighten the lives of other people. The Gold Hope Project was the perfect organization that allowed me to share this amazing gift with families and children.
What is your favorite thing about being a Gold Hope photographer? Watching how children light up in front of the camera brings me so much joy. They feel so special during their session and my hope is that maybe for the brief time when we are together, they forget about the other worries and stressors in their life. I also love gifting the family a tangible moment in time.
Has working with children with cancer changed anything in your life? Working with kids with cancer has taught me how precious life is and how important it is to live to the fullest each day and be thankful and humbled by the blessings we have.
What is one thing you hope the families you photograph for the project can take away from this experience? I hope that families can take with them the memory of a fun experience shared with their child during an otherwise stressful time.
Eden is such a special little boy, as all warriors are. He loves to laugh at the silly things his brother does. He loves his chihuahua, Millie. She always makes him smile. He loves the beach and swimming and being outside. His favorite thing is his “gwanks” (blankets).
In the spring of 2015, Eden was experiencing tiredness, falling, bruising, pustules in throat, repeated illness, fever, not eating, and extreme lethargy. These are very common symptoms for Acute Lymphoblastic Leukemia or ALL. Eden was diagnosed on March 23, 2015. After many rounds of chemo, multiple MRIs, lumbar punctures, numerous blood and platelet transfusions, chemical meningitis, and methotrexate toxicity, his prognosis is good.
Childhood cancer has changed every single aspect of our lives. We have become closer to one another and are now hyper aware of all germs and potential hazards. You really find out who your friends are… strangers have become closer than the closest friend before cancer.
Paddy is just the happiest baby! He’s always smiling. Even when he’s going through chemo, he’s a smiley guy. He’s really easy-going and a chill baby. He loves to hang out with his older brother and really enjoys reading books with us. He’s just starting to roll around and explore his environment. He also is very attentive and doesn’t want to miss out on stuff.
Two days before Christmas of last year, he had a cough and a respiratory virus that developed into pneumonia. We brought him to the emergency room where they diagnosed him with pneumonia and after doing bloodwork, discovered that he had leukemia. He still is actively in treatment so we have to be careful about exposing him to people who are sick and other children. He also has a central line so he can’t take a normal bath or go swimming. He has also had some developmental delays with his gross motor skills.
He has undergone chemo for the past six months, both inpatient and outpatient. He’s had a number of spinal taps and also has had a number of bone marrow biopsies and surgery to place a central line in her chest. He also has had multiple blood and platelets transfusions. The biggest struggle or family faces with treatment is managing our family life around his treatment schedule. It’s really intensive and requires us to be at the hospital a lot, often times with very little or no notice.
Cancer changes your life in a lot of ways. I, his mom, had to quit my job to take care of him full-time. We’ve also had to help my son deal with his anxiety and nervousness about all the changes going on at home. We can’t always tell him when we’re going to be home or if Patty’s going to be in the hospital, which is difficult for all of us. We’ve been really lucky to have the support of a lot of friends and family to help make this journey more manageable, but it puts a lot of stress on our whole family.
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.
