Adilyn is very sassy for a four-year-old. She’s very sweet! People being silly and joking with her make her laugh and so do her siblings. She is a bright spirited little girl who in general is all around happy.
In the summer of 2020, her speech was slurred and she was walking funny so mom took her to the pediatrician. He sent them to a children’s hospital for an MRI and from there we had her diagnosis of DIPG.
DIPG has no known cure but Adilyn has had radiation. She has also undergone a clinical trial. The clinical trial was basically chemo straight to the tumor and not the entire body.
We have faced many struggles. My husband has missed several months of work to be able to spend time with her but in doing that bills get behind so financially we are struggling. Bills and life don’t stop when someone in the family has cancer.
We are all deeply hurt and saddened by what has unfolded with our baby girl.
Antoinette is smart and sassy. She loves SuperGirl and spending time with her little brother. She is one of 6 children. She loves to read and play Minecraft.
She was diagnosed in December 2018 with diffuse intrinsic pontine glioma (DIPG). We noticed something wasn’t right when she started to drag her right leg when she walked. Her speech became slurred and her right arm and hand became weak.
Antoinette received five and a half weeks of radiation and she has been doing chemotherapy every 2 weeks. Her tumor has affected her mobility. She is in a wheelchair now and can not walk.
Even though her cancer is terminal upon diagnosis, Antoinette is a fighter and she is always positive about her situation. She always says that she is going to walk again and her tumor is going to shrink. She is my SuperGirl!
If cancer has touched your life, then you know the struggles a person with cancer faces. Day to day life can be exhausting – going through treatments, endless doctor appointments – not to mention the many medications can all take a toll.
When that person is your child, you would do ANYTHING to help them beat the monster that has taken over their little body.
But for some parents, there is nothing they can do. Their child has a rare brain tumor called Diffused Intrinsic Pontine Glioma or DIPG. DIPG has no cure and is terminal upon diagnosis. They can’t even try and fight!
DIPG is considered rare by drug companies and that means it is not a priority for them to find a drug that provides HOPE to the kids who receive this diagnosis and desperately need a cure. It is up to us!
We at The Gold Hope Project are honored to offer free photography sessions to the families of children fighting cancer across the world, something we have done since the start of the organization. This is a priceless gift to the families in so many ways. Your donations to The Gold Hope Project are not only funding photography sessions for fighters, but also important research in the fight against DIPG through the DIPG Collaborative. By joining forces with the DIPG collaborative to help fund over $500,000 in promising research grants. It is our hope that one of these grants will lead to a CURE for DIPG and with your help we can make even bigger strides in the fight against this terminal pediatric brain tumor.
Tomorrow, as people around the world support important causes for #GivingTuesday, donate to The Gold Hope Project or start a fundraiser to help fund better cancer treatments and possibly a cancer cure!
Ila is a very shy girl who can be swayed with food and cute animals or funny cat videos.
We got her diagnosis when I took her in thinking she had an ear infection. She had been tripping and falling a lot and I thought it was maybe just vertigo or inner ear issues. But we got a huge shock with a DIPG diagnosis. DIPG is a terminal brain tumor located in the brainstem, making removal impossible.
It was a whirlwind from there and we immediately started radiation. We stayed in another town an hour away, it was physically easier for her than the daily car rides but it took a huge toll on every one emotionally. The other kids missed all of us so bad, and she missed everyone. She hated the routine, and the huge dose of steroids made her much less capable of handling all the awfulness she had to deal with. She was angry and cried and yelled and just not our little girl. We honestly doubted her course of treatment daily.
We both obviously couldn’t work during her treatments and honestly didn’t want to take even a moment away from her. Knowing your child is suffering and that this monster is eventually going to win is heart wrenching, every day is different. Some days you’re up and full of optimism and it seems like a normal day, until the inevitable moment when you remember that eventually this little ray of sunshine that warms everyone’s heart she crossed will no longer be with you.Sometimes you go the whole day without crying and sometimes you can’t stop. Currently Ila is doing amazing and running and playing, we are trying to pretend life is normal until we no longer can’t.
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.
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:
Headaches primarily in the morning or headaches gone after vomiting
Weakness in facial muscles, drooping, mostly on one side
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.
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!
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.
