Imagine being told not only that your child has cancer, but also that the cancer he has is considered the deadliest childhood brain cancer. There is nothing in modern medical science to cure them. Nothing. Every single attempt to save the life of your baby is thwarted by the aggressive nature of the #1 cause of pediatric cancer death – Diffused Intrinsic Pontine Glioma or DIPG.

 

Teenager with DIPG boy looking at camera photo by The Gold Hope Project

Charlie, diagnosed with DIPG.

                                                

WHAT IS DIPG?

DIPG is a nasty tumor found in the brain stem, specifically the area of the brain at the top and back of the neck, connected to the spinal cord. This tumor grows quickly and invades the healthy brain tissue, weaving itself so thoroughly that removing it is impossible. The aggressive nature of this tumor defies the “normal” science of what a tumor is; a mass of cancerous tissues with defined edges.

DIPG, on the other hand, has soft, non-uniform edges and intertwines itself among healthy brain cells. In essence growing into its own defense mechanism and preventing surgical removal. No surgeon wants to dig through healthy brain tissue, especially on the brain stem. The brain stem controls things like breathing, heart rate and the nerves and muscles that assist in seeing, hearing, walking, talking and eating. Just to give you an idea of how scary the location of these tumors are.

Like all cancerous tumors, it’s terrifying to find out that your child has a tumor in her brain. But also, this one is the worst of the worst: not only completely inoperable, but completely incurable. While DIPG is rare, around 300 children a year are diagnosed with this cancer, it is the most common brain cancer death in children.

COMMON SYMPTOMS

As a mom of a child who battled cancer in her brain, I can tell you without a doubt there are no symptoms out there that compare to the terror of brain stem tumor symptoms:

  • Difficulty with walking and balance
  • Eye issues like double and/or blurred vision, uncontrollable eye movements, drooping eyelids
  • Difficulty chewing and swallowing
  • Vomiting and nausea
  • Headaches primarily in the morning or headaches gone after vomiting
  • Weakness in facial muscles, drooping, mostly on one side

 

DIPG patient with sibling photo by The Gold Hope Project

Angel’s his eyes turned inward, he couldn’t speak, and he lost his ability to walk before being diagnosed with DIPG.

Unlike some childhood tumors, DIPG is fast growing and some symptoms may seem to pop up overnight. This is due to the tumor becoming large enough to put pressure on certain areas of the brain stem.

TREATMENT

There is no treatment for DIPG currently. This diagnosis is a heartbreaking death sentence. With the advances made in cancer research in recent years, there is hope that someday soon there will be an effective treatment for DIPG, but right now all doctors and patients can do is experiment. All of the treatment efforts made in the past have resulted only in buying a little bit of time instead of a cure.

Because of the destructive growth and uncommon shape of this tumor, operating on it for biopsy or removal is rare here in the United States. Doctors generally sidestep the practice because the results of the biopsy rarely have an effect on the type or the success of the treatment. The side effects and general risks of operating on any area of the brain tend to outweigh the good.

In Europe, however, advances in technology have garnered a new way to biopsy, called a “stereotactic” biopsy. This combines the sciences of MRI and CAT scans of the brain and tumor with a long, thin needle. Using the scans as a map, the needle is guided into the tumor to extract cells while avoiding critical nerves in the brain. This keeps the risk of damage to the healthy brain tissue lower than a normal biopsy.

photos for cancer patients child with DIPG photo by The Gold Hope Project

Ava’s treatment of DIPG consisted of radiation with an experimental chemo treatment. Though her initial tumor responded well to treatment, more tumors were found in other areas of her body. Ava passed away in November of 2012 after an 11-month battle.

 

Radiation seems to be the only treatment that comes close to helping, though it in no way resembles a cure. Kids diagnosed with DIPG usually only get a few months – 5 is the median, and radiation therapy can give them as many as three extra months. Can you imagine? Eight months with your baby until the unthinkable happens and no way to cure the disease.

HOPE

Sadly, up until now chemotherapy has had almost zero effect on these gliomas. A study completed by Northwestern University does, however, show some promise on the future of chemo and DIPG. Essentially, mice with gliomas have shown great improvement when treated with a new chemotherapy drug using BET inhibitors. Because of this finding, a clinical trial is currently in the first phases for adults. Northwestern is hoping to open up a clinical trial for children by the end of 2017. This seems to be the only shred of good news concerning DIPG.

While researchers and doctors today have a basic understanding of a few of the genetic mutations causing DIPG, there is a lot of information researchers aren’t privy to. The lack of tissue samples of the tumor, a direct result of the general lack of the practice of biopsy stalls research. Parents of children diagnosed with DIPG can request that a sample of their child’s tumor tissue be donated for research. The more tissue samples we have of this monster, the more information we can learn and better hone the healing procedure to one day have a cure for these little fighters.

TAKE ACTION

Here at The Gold Hope Project, we are striving to raise money for awareness and research of this monstrous malignancy. The DIPG Collaborative is a group of 30 amazing organizations that have come together to facilitate DIPG cancer research and grants. Through this collaborative, we know we can make a huge difference in the understanding of this cancer and, more importantly, the CURE of this cancer. Donations are so needed and so appreciated in the world of sick children. Please visit our donation page to help us help the kids battling DIPG. The value of your donation is life!

free portrait session for pediatric cancer patients

Sources:
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Michael Mosier Defeat DIPG Foundation
St. Jude Children’s Research Hospital
DIPG Collaborative

 

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Harper is a silly, happy and very smart little girl. She loves to laugh but she also has a pretty fiery temper. She loves Minnie Mouse and the whole Clubhouse gang and Thomas the tank engine. She loves to go swimming, play with cars, color and to go to the park.
When Harper was six months old, she suddenly lost the movement of her legs. She underwent testing followed by emergency surgery and we discovered she had neuroblastoma. Some other common symptoms of Neuroblastoma can be fever, loss of appetite and fatigue. Neuroblastoma often occurs in the kidney but can also develop in the neck, chest, abdomen, spine or bones. Neuroblastoma often occurs in children under 5 and is the most common type of cancer that affects babies under 1.
Harper has been through a lot at such a young age. Her treatment plan consisted of four rounds of chemotherapy, four different surgeries and two stays in the pediatric intensive care unit.  She continues to have sedated MRIs and urine tests.
Having a young child with cancer can be stressful because she is unable to tell us what’s wrong. It’s also made us appreciate all the little things more.

Free Photos Cancer Patients family on beach photo by The Gold Hope ProjectFree Photos Cancer Patients little girl holding parentFree Photos Cancer Patients mom holding daughter photo by The Gold Hope ProjectFree Photos Cancer Patients mom kissing daughter photo by The Gold Hope ProjectFree Photos Cancer Patients dad with daughter photo by The Gold Hope ProjectFree Photos Cancer Patients dad with daughter on shoulders photo by The Gold Hope ProjectFree Photos Cancer Patients dad holding daughter photo by The Gold Hope ProjectFree Photos Cancer Patients family on beach photo by The Gold Hope ProjectFree Photos Cancer Patients little girl with beads of courage photo by The Gold Hope ProjectFree Photos Cancer Patients family and child with cancer photo by The Gold Hope ProjectFree Photos Cancer Patients family walking on beach photo by The Gold Hope ProjectFree Photos Cancer Patients family on beach photo by The Gold Hope Project

Harper’s support page

Hope session by Barb Toyama.  instagram  |  facebook

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Marissela is an old soul. She looks into you not at you. Her favorite thing in the entire world is music. That means singing, dancing, playing instruments, all of it. When she is sick to her stomach or in pain, music is one of the only things that brings comfort to her mind and heart. She also loves the Disney Princess Elena of Avalor. She is very reserved but also highly intelligent and emotionally aware. She loves to play things like peek-a-boo and will sign several kid’s songs. The sweetest little girl you’ll ever meet!

Marissela was diagnosed on August 31st of 2015 with Very High Risk Premature B Cell Acute Lymphoblastic Leukemia or ALL. She is still in active treatment, receiving daily chemotherapy. Her end of treatment date is 12/23/2017 pending she doesn’t relapse. She is currently in remission but at very high risk of relapse.

Cancer has been a consuming beast. We struggle greatly with Marissela’s discomfort. Chemotherapy causes severe pains, aches, vomiting, diarrhea, bleeding, and so much more. Trauma of treatment has also caused her to have developmental delays. In addition to chemo, we take her to appointments every week for physical therapy, occupational therapy, speech and language pathology, child psychology, and music therapy. We practically live at the hospital which means being away from our other two children for extended periods of time.

Treatment itself is financially draining as it costs approximately $300,000 monthly (which is reduced by 80% after insurance). Then, on top of that, we have to purchase medications and home care supplies totally approximately $1,500 monthly. It’s very difficult commuting back and forth between home and the hospital while juggling normal daily activities. When we are home we are full time caregivers. We administer all of her home chemo, antibiotics and medications to control side effects. Depending on which phase of treatment we are in that can sometimes mean 5 medications a day or it can mean 30.

There is absolutely nothing cancer hasn’t changed about our lives. Our world ended but life kept happening. It’s the strangest thing- the closer you or someone you loves is to death, the more alive you become. We pack every second of every day with joy and love. We eat ice cream for breakfast sometimes. If my kids want 5000 hugs & kisses, snuggles, a glasses of water and bedtime stories… the answer is always yes.

We pray to God, who gives and takes away, that his plan is to let Marissela live. That he allows her to grow in his image to serve and bless others. We also have to accept that sometimes the answer is no. That, my friends, is something we are still trying to wrap our heads around. Cancer has brought us to our knees in the most raw, humble way you can possibly imagine. We will never, ever be the same again. Marissela is so brave. She fights with the grace and fortitude of an angel. I couldn’t do what she does. When she beats cancer, there is no limit to what she will be able to accomplish. God is good!

Acute Lymphoblastic Leukemia family with sick child photo by The Gold Hope Projectphotos for cancer patients child with leukemia photo by The Gold Hope ProjectAcute Lymphoblastic Leukemia child photo by The Gold Hope Projectphotos for cancer patients child with leukemia photo by The Gold Hope ProjectAcute Lymphoblastic Leukemia patient photo by The Gold Hope ProjectAcute Lymphoblastic Leukemia patient and siblings photo by The Gold Hope ProjectAcute Lymphoblastic Leukemia child with sisters photo by The Gold Hope Projectphotos for cancer patients dad with daughter photo by The Gold Hope Projectphotos for cancer patients dad kissing daughter photo by The Gold Hope Project

Hope session by Amanda Orelman Photography.  instagram |  facebook

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Charlie has a quiet strength about him.  Charlie loves to laugh, and has an awesome (yet sarcastic) sense of humor. Prior to his diagnosis he was an avid lacrosse player, and loves to watch games and string/dye his own lacrosse heads.   He is also interested in rally and motor sports. He has always loved being in the woods and the beach.  In his down time, you can usually find him scouring the internet for funny youtube videos.

Early this year, Charlie started having balance and coordination problems, nausea when laying down, slurred speech and facial weakness. On February 2, 2016 Charlie was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma), which is an inoperable, aggressive tumor in the brainstem for which there is no cure and only experimental treatments to buy time.

DIPG is a brain tumor that can be found in the brain stem. The edges of the tumor is “infused” throughout the brain stem which makes surgical removal impossible. DIPG is a very fast growing tumor and symptoms can appear almost overnight.

Charlie went through 30 rounds of radiation at our local hospital, and then was enrolled in a clinical trial of an experimental oral chemotherapy drug.  We travel back and forth 10 hours each month to a hospital in Cincinnati as part of the trial.  We are lucky to have been in the trial for 12 courses, and to have several stable MRI’s since starting the trial.  Traveling far from home for treatment is difficult, but we are blessed to have found such a caring and compassionate team in Cincinnati.

Charlie has right arm and leg weakness, and he has pain and joint changes in his left hip and knee due to long term steroid use (steroids help with some of his other DIPG symptoms).  He currently uses a walker to get around and a wheelchair for longer distances. He struggles with fatigue and decreased appetite, but pushes himself to go to school, physical therapy and out with friends. He never complains about his situation and always tries to be positive.

Charlie is thankful that he has had a good life so far, and thinks of all the younger children who have cancer and don’t get the chance to grow up. He is active in advocating for research funding and attended Cure Fest rally in Washington DC.

teenager with DIPG tumor photo by The Gold Hope Project Teenager with DIPG boy looking away from camera photo by The Gold Hope Project Teenager with DIPG boy looking at camera photo by The Gold Hope Project Teenager with DIPG boy looking at camera photo by The Gold Hope Project free photo session for pediatric cancer patients photo by The Gold Hope Project free photo session for pediatric cancer patients photo by The Gold Hope Project

Charlie’s research page

Hope session by Paige Everson.

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  • Carol A Bonner - I love reading about Charlie and his family. I have gotten to know them when they visit here in Cincinnati. Charlie and his family are amazing❤️ReplyCancel

  • Kate Stewart - Charlie’s “German class family” loves and misses him <3ReplyCancel

  • Meredith McCarthy Andrews - SO proud of Charlie. I am YOUR cheerleader like you were MINE when you saw me running a race. Stay strong.ReplyCancel

We are so happy to be shining the photographer spotlight on Laura Lynn Photography. Laura is a San Clemente photographer who strives to capture the emotional connection of the people in front of her lens. It’s not about the “sit and smile pretty”, it’s about the real, the honest. It’s about capturing who you are, deep inside. Her goal is for her images to make you feel something. As a natural light photographer, she loves love a good backlit, golden moment of honesty. Each family is different, and she strives to capture their unique bond and love for one another. It’s about capturing a moment in a memory through the smallest details to last a lifetime.
laura lynn photography photo by The Gold Hope Project
What made you want to join tghp as a volunteer? Cancer already sucks. It never affects just the person battling the disease, it affects all those who love that person as well. I feel it’s even worse when it’s a child. Childhood cancer research is so poorly underfunded, I loved that The Gold Hope Project wants to help bring attention and awareness to this monster.
 
What is your favorite thing about being a TGHP photographer? Getting to meet these amazing fighters. Their strength and resilience is inspiring.
laura lynn photography San Clemente photographer photo by the gold hope project

Has working with children with cancer changed anything in your life? Absolutely. It reminds you to be positive through the tough times. These kids, although going through something terrible, are still happy and they just want to play and have fun, and live. It’s a reminder I think we all need from time to time. Live in the moment and enjoy everything you possibly can about it!

 What is one thing you hope the families you photograph for the project can take away from this experience? Their bond. Often times, as active participants in our own lives, we miss the little details. That’s why photography is so important, and why I do what I do. I want to show them their bond, their uniqueness, their love for one another through my eyes. When you’re with your kids everyday, you may not really see the way they look at you, with love and admiration. But I’m looking through a window into their lives, and I get to show them what I see. I always want love to shine through.
laura lynn photography San Clemente photographer photo by the gold hope project
How would you describe your photography? I do my best to focus on the emotional connection. My photography has often been described as honest, emotional, and natural.
laura lynn photography San Clemente photographer photo by the gold hope project
Laura Lynn Photography
website |  facebook  | instagram
A big shout out to Laura for sharing her talents with our fighter families.  Want to follow her lead?  Apply to be a volunteer photographer here.
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  • Laura - Thank you so much for featuring me and for allowing me to be apart of something so amazing!ReplyCancel