Josiah’s laugh is the most contagious thing on earth! He is seriously addicted to all things baseball and football. He loves to watch and observe others having fun (seriously) and gets so much joy out of it.

At five years old, Josiah had strep throat that wouldn’t heal. His tonsils were enlarged so we scheduled a tonsillectomy. Ten days prior to surgery we did a workup including a complete blood count as he wasn’t acting himself (he has Down Syndrome and is mostly non verbal), and it came back showing leukemia. On 7/29/14 he was diagnosed with Acute Lymphoblastic Leukemia or ALL.

Josiah has been through so much with his treatment. He has received a lot of chemo, spinal taps, and MRIs. Josiah had an IV with chemotherapy leak into his hand that caused a bad burn. We’ve needed to add Neurology, Orthopedics, Plastics, and Sleep clinic to our list of specialists since starting chemotherapy. Josiah is more sensitive to toxicity because of his T21 and ended up inpatient over 8 months of his course of treatment.

Due to a stroke prior to birth and low muscle tone from his down syndrome, Josiah had been fighting to walk prior to diagnosis. He had gotten up to 3 city blocks with his reverse walker the week prior to his diagnosis, but treatment and so much time in a hospital bed robbed him of most of his progress. He has fought to build up his muscles again, and we’ve treated the pain and neuropathy. Currently he can walk with one handed assistance and we are close to him standing unassisted but not quite there yet. Even though he finished his treatment last year, healing from his treatments can be tough!

We have two younger children (2 and 5 weeks at dx, 4 & 2 now)…it’s been challenging on them and us to be apart so much. The focus being on the child with cancer so often is hard to understand for little ones. The stress has been a lot! We are a single income family so my husband MUST work and I take the role as primary caregiver for 95% of care. It’s caused a toll on our life and my health, unfortunately, but God remains faithful and carries us. We are so thankful for His protection over Josiah! His cancer has also pulled us closer as a family. It’s allowed us to treasure the little moments and get creative for fun. It’s made us more thankful as a family.

Josiah amazes us. He has been a fighter since day 1, (down Syndrome, Stroke, heart defect, missing corpus callosum, lung cysts that almost killed him, Leukemia, blood clotting disorder)…but NOTHING dampens his spirit. Yes, he has hard days but he always can muster a smile or giggle or snuggle. He is so tough when it comes to treatment and does what he needs to do.

Josiah’s support page

Hope session by Tumbling Sparrow Photography.  website |  facebook |  instagram

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Luke loves his friends, making new friends, doing magic and building legos.

Shortly before his 5th birthday, Luke was bruising easily. His skin also had a yellow tint and was really tired. I felt a small lump on his neck and took him to the pediatrician who ordered a blood and urine test. We were sent us to the ER where he was diagnosed with Acute Lymphoblastic Leukemia or ALL. ALL is the most common type of childhood cancer, affecting about 3,000 children every year. Luke’s symptoms are pretty common for ALL but children can also experience unexplained fevers or loss of appetite.

ALL has a long treatment plan with 3 phases. Luke has had many lumbar puctures, chemotherapy, and stayed in-patient at Children’s hospital. Our family has been apart a lot over the last year since Luke has been in the hospital for a total of over 80 nights. His diagnosis has brought us closer together and made us more grateful for each other and our community.

Luke’s support page

Hope session by Sarah Driscoll.  website  |  facebook | instagram

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Kalan loves life and he has a great imagination. He loves playing with legos and anything pokemon related. He loves playing outside with friends and riding his bike.

When he was six years old, he started to have a lot of pain on his left side and couldn’t really keep food down. After some doctor visits, he was diagnosed with Wilms Tumor. It turned out the tumor was so big it was pressing on his stomach, making it hard to eat. Wilms Tumor arises in the kidney and no cause is known. Wilms Tumor is the most common kidney cancer in children and most children are diagnosed with Wilms Tumor between 2-3 years old.

Kalan had chemo, radiation, and surgery to remove his kidney. He has follow up appointments every 3-6 months. It’s sometimes hard to make his appointments because the hospital is about 8 hours away from where we live. The distance makes it tough to afford to get down there.

Kalan’s cancer diagnosis made us look at things differently. We spend a lot more family time together. Kalan wants to do whatever he can to help other kids who are going through similar situations. He says that no kid should have to go through this and that life is not fair.

Hope session by Northern Clove Photography.  website  |  facebook

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Today we are so happy to be shining the photographer spotlight on Eboni Rivera of Luxe Art Images. Self proclaimed “Memory Giver”, Eboni Rivera captures honest pictures of awesome families. She is a Family Documentary Photographer and Film Artist located in Suffolk County, Long Island, NY. She provides heart-tugging, feel good photography and films for families who give a damn about the preservation of their memories. Her storytelling approach to photography allow families to leave behind a legacy of who they are, how much they love and just how awesome their lives are.
 Luxe Art Images photographer photo by The Gold Hope Project

How would you describe your photography? I capture timeless and emotive images for the true sentimentalists at heart. I work with people who love taking a trip down memory lane getting lost in the feelings of nostalgia. My style of photography is intimate and emotive. I love to get in close to grab detail shots, particularly of body parts such as hands, eyes and feet. I’m inspired by my own experiences as a mother and set out to capture the moments in which I feel other’s would want to remember in the years to come.

 Luxe Art Images mother holding son with cancer photo by The Gold Hope Project

What made you want to join TGHP as a volunteer? Deep down, I feel like I was put on this earth to help others. For as long as I could remember, I’ve always had this innate ability to relate to charitable causesThroughout the years I’ve donated my time to many organizations as my way of doing the little bit that I can in my attempts to make a smallimpact on the world. 

After discovering The Gold Hope Project and learning more about their mission, I immediately knew that it was something I wanted to be a part of. Reading Ava’s story and watching her video tugged at my heartstrings. I felt a need to help other children and their families whose lives have been touched by cancer.

A few years ago, I experienced my own health scare with my youngestdaughter when she was 2 years old. She endured many rounds of testing at the Pediatric Oncology Center for several months and it was one of the most terrifying moments of my life. Luckily her story turned out with a happy ending but I do realize that the same isn’t true for every family. 

Becoming a Gold Hope volunteer photographer means that I would have an opportunity to give back just a bit of sunshine to families whom have seen so many dark days. Being able to give a piece my heart to families that could use anextra bit of loving, means so much to me and would be fulfillingAdditionally, as a volunteer I’d be able to mesh my love of giving back to others with my love of photography – I mean, what could be better than that?!

 Luxe Art Images boy with ALL playing outside photo by The Gold Hope Project

What is your favorite thing about being a photographer for The Gold Hope Project? I would say that my favorite thing would be capturing the love shared amongst all the family members. The children are so innocent and joyful even though they’ve been through so much and I really admire that! enjoybeing able to capture their family togetherness and gift them with images from their experience. I also like interacting with them and learning more about their stories. Its absolutely awe-inspiring to see the strength and faith that they have and to be immersed in all of these feelings during the time we spend together during their session. It’s a connective experience for everyone involved.

What is one thing you hope to families you photograph for the project can take away from this experience? As a Gold Hope photographer I want to give families a documentation oftheir moments that matter. I want them to have images that reflect the simple things that are happening in their everyday lives – things that others may take for granted – in which they are so very grateful for. I want them to be able to look back on their images and not focus on remembering the pain and suffering that they went through but instead the love and light that radiated within their family unit.

 Luxe Art Images boy with ALL smiling photo by The Gold Hope Project

Has working with children with cancer changed anything in your life? Absolutely! Last year my life was touched by an angel when I met the sweetest little boy named Douglas Grimmett who was battling cancer. Douglas is a strong, resilient and determined 10-year-old boy who is all too familiar with the burden of cancer. He was diagnosed with Acute Lymphoblastic Leukemia (ALL) in 2013 and has endured 1,170 rounds of treatment before finally being declared cancer-free! I was able to gift his family a session shortly before the end of his treatments and it was exciting to be apart of the tail end of his journey before being considered a ‘survivor’.

After his session, deep down in my heart I knew that this is the kind of work that I was put on this earth to do. 

 Luxe Art Images boy with ALL laughing photo by The Gold Hope Project

Tell us about “Cancer to the Curb.” After working with Douglas and learning more about his story, I realizedhow easily it could’ve been my own daughters’ story – the chilling thought crosses my mind every single day. I feel like there’s a calling for me to do something more to help other children and families going through similar trials. So, in honor of Douglas, I’ve accepted a nomination to be a candidate in the 2017 Leukemia & Lymphoma Society’s (LLS) Man & Woman of the Year Campaign. My team Cancer to the Curb is on a mission to fundraise to help spread awareness in hopes of finding a curefor pediatric blood cancers.

It’s a team of local community members banding together working to raise as much money as possible within a 10-week period. Our goal is a bit ambitious but we are relenteless in our efforts to raise $25,000 from March 23 – June 1, 2017. Every dollar raised helps LLS provide access to treatments for pediatric cancer patients and their families. They also count as a vote for me and the candidate who gets the most votes is named the Man and Woman of the Year. Luxe Art Images boy with ALL holding sign photo by The Gold Hope Project

I can’t do it alone and I need your help. If it weren’t for the support of past donations to fund research for LLS, Douglas’ success story and so many other children like him most likely wouldn’t have been possible. Just 60 years ago the survival rate for leukemia, the most common form of cancer in children, went from having a 3% survival rate to over a 92% survival rate. 

Cancer to the Curb’s efforts will help fund the therapies and treatments that save lives, not someday but today. You can find out more by visiting https://cancertothecurb.org or www.facebook.com/cancertothecurb.

 

We want to thank Eboni and all she is doing to give back with children with cancer. You can help too! Apply to be a volunteer photographer here.

Luxe Art Images: website  |  facebook  |  instagram 

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Uravel Pediatric Cancer

We first learned about Unravel Pediatric Cancer because they formed in much the same way The Gold Hope Project formed; because of a sweet little girl who loves glitter and was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG). DIPG is a devastating pediatric brain tumor that is terminal upon diagnosis with a 0% survival rate. Unravel Pediatric Cancer was formed by Libby and Tony, parents to Jennifer Kranz who passed away from her cancer at only six years old. It is Libby and Tony’s mission to “unravel” pediatric cancer by raising awareness and funding much needed research.

Uravel Pediatric Cancer cancer fact photo by the gold hope project

 

Mission

1. Tell us about your organization. What is your mission? Unravel is a nonprofit organization working to spread knowledge about the grim realities of pediatric cancer and the devastating impact from the lack of funding. We supply the information, tools and support to individuals and communities that want to help create change– because good people want to do good things but sometimes they need help getting started. All monies raised by and for Unravel will go directly to the fight against pediatric cancer. In addition, Unravel partners with other nonprofits to strengthen our efforts. We do all of this with one goal in mind; we will unravel pediatric cancer.

2. Why was your organization established? Tell us your why? Jennifer Lynn Kranz (JLK) was a beautiful 6 year old who was born with glitter in her veins. She sparkled from the inside out and brought out the sparkle in everyone she met. Jennifer was diagnosed with Diffused Intrinsic Pontine Glioma (DIPG) on her 6th birthday. It is terminal upon diagnosis. Jennifer lived 3.5 months. It was never a fair fight. Jennifer will be part of finding a cure and her family and friends want to do their part, too. Unravel Pediatric Cancer was founded by her parents, Tony & Libby Kranz, for that purpose.

Uravel Pediatric Cancer free photo for cancer patients photo by the gold hope project

Jennifer Lynn Kranz

Services

3. What are the services you offer to pediatric cancer patients? We fund pediatric cancer research to find better, safer, and more effective treatments for children facing all 12 types of cancer. Our funding model of unrestricted funds and building relationships with the labs we fund make us different. It allows researchers to be nimble and pursue the most promising ideas.Also, we look for labs that are disruptive; meaning trying to find new ways of treating and curing pediatric cancer. Unravel focuses on funding early stage research and innovation instead of clinical trials.

4. What do you wish more people knew about your non profit or the work you are accomplishing? We want more people to know how much the money we raise matters to the researchers we fund. These men and women have huge hearts and are fighting very hard for our children. With minimal federal and and big cancer foundation funding, it is up to smaller organizations like ours to fill those gaps and fund this important work. It matters!

Get Involved

5. How can we get involved in helping you achieve your mission? Individuals and families can get involved with Unravel in many fun ways! You can Flutter with us in September or October, hold a lemonade stand or bake sale, organize a coin drive at your school, spread awareness (we call it “spreading the glitter!”) by sharing the facts with friends and family, attend one of our events like our 5k Family Fun Run or a Mama’s Night Out, or make a donation on our website.

Uravel Pediatric Cancer people working to fund cancer research photo by the gold hope project

 

 

We are so happy to share with you Unravel Pediatric Cancer and the many ways they are serving the childhood cancer community. Be sure to check them out on the web.

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