Sunnie was diagnosed on 10.26.2022 with DIPG- a tumor that develops in the brain stem- typically in children. The brain stem -specifically the pons- is what controls all of our motor function, as well as life functions such as swallowing, and breathing. DIPG is considered terminal, and currently has no approved treatment. Most children diagnosed with this disease are given 9-18 months to live. They consider this a "rare" pediatric cancer, but I can tell you from first hand experience this is NOT rare.- In fact, I have talked with 10 moms that have children currently fighting or battled DIPG in the state of NC alone! I attended a DIPG mom retreat- where I met with 60 other women who had children with DIPG. Only 5 of us had children currently alive and battling. YOU CANNOT TELL ME THAT IS RARE! There are thousands of children all over the world that are currently battling or have passed from this tumor. Sunnie was a healthy child- and I dont mean healthy like "by the book" healthy. She was a HEALTHY child. She barely ever had an ear infection her entire 10 years.She walked at 9 months, had full conversations at 1.5 years old. She's always excelled in school, espically reading. She's been physically active her whole childhood- from playing soccer, softball, basketball, and of course dancing! So when we were told she had a terminal tumor and only had 12 months to live- SHOCK doesnt even to begin to describe our reaction. SHE HAS HER WHOLE LIFE AHEAD OF HER!
Sunnie's battle story begins in August of 2022 ( yes- that short amount time ago). She complained of a really bad headache that made her throw up. I too have suffered from migraines ( as most of us have), so we did not think much of it. But then she had another one a few weeks later. And then another one that caused her to miss school. So, I took her to the eye doctor thinking maybe her vision was changing and she needed glasses to help. We are now at October 17th 2022. At that visit, the optometrist noticed that her left eye was not able to move (to look) completely to the left. We discussed various reasons as to why it could be happening- none of which made any sense, because again Sunnie was completely healthy. No head trauma or accidents had occurred. I didn't think to much about it, but as I watched her that week, I began noticing something was changing- she wasn't being her normal self. We celebrated her 10th birthday on 10.23.2022. On 10.26.22- I picked her up from school where she got into my car hysterical- sobbing- "Mommy, my head hurts so bad, it hurts so bad" She almost couldn't breathe, she was in so much pain. So I rushed her to the ER. Thank goodness for Atrium in Union county NC for not wasting anytime- they immediately took her to a CT scan. And this is the moment our lives changed FOREVER!! They came back to tell us that our perfectly healthy- newly 10 year old daughter- had a brain tumor that could not be surgically removed and that there was no treatment for it. Please take a moment to put yourself in that conversation- whether you are a parent or not. Imagine- Its 2023- modern medicine seems to be able to do so many things- and a doctor looks at you and tells you that your beautiful, perfect, healthy 10 year old daughter has no chance- there is nothing they can do.
We were sent to Atrium Levine Children's Hosptial (Charlotte NC)- where Sunnie had a shunt placed. The tumor was causing her brain fluid to back up, which is what was causing the migraines. There we were introduced to our team. They explained all the medical terminology of DIPG and what all of that meant. He said they felt this grew in the last 2-3 months and then proceeded to tell us that there are no concrete "approved" treatments, but we did have the option to explore various clinical trials that could "hopefully" offer time. But WE had to choose the trial. We, as normal, blue-collar people, had to pick the course of treatment that we hoped or thought could save our child. We were basically handed a book of 1000's of clinical trials from all over the world, full of medical terminology, and were told to "Pick one". Our team has been nothing short of WONDERFUL and helped us cypher through all the terminology, and weigh things that were important to us. But as I dive deeper into this DIPG world, and converse with so many families, I find that my experience is not typical- most of these families do not have the support that we have at Atrium Levine.
Sunnie completed 30 rounds of radiation to the brain stem in Jan 2023, and is currently on a clinical trial of out of Augusta GA that involves immunotherapy and chemotherapy in hopes of killing the tumor. Our team at Augusta works closely with our team here at Levine, so we are able to stay home, only having to travel to Augusta once a month. She takes 4 immunotherapy pills a day (2 in the morning and 2 in the evening). Chemotherapy is once a month and is also in pill form. She had a hard time after radiation- it caused swelling in the brain stem, as well a cyst to develop on the tumor. This swelling, and the cyst were inhibiting nerves that allow Sunnie to use her motor function on her right side. She can no longer run, and her balance was very off- which means no more dancing. She wasn't able to go up the stairs and had a very hard time walking. Her right hand went weak, so she couldn't write, or bath or dress herself. It mimics symptoms of a stroke. Being the fighter Sunnie is- she taught herself to write with her left hand, to feed herself with her left hand- all in about 2 weeks. She refuses to be kept down. She then went under 4 rounds of Avastin infusions- to help reduce the swelling in the brain stem. It has helped tremendously. She currently has regained about 90% of her abilities on the right side and is walking and dancing on her own!
Another common "therapy" for DIPG patients is the use of a very strong steroid called "Dexamethodsone"- in hopes of reducing swelling in the brain. IT IS A TERRIBLE drug, that causes severe mood swings, uncontrollable appetite and excessive fluid retention. It has caused Sunnie to gain almost 50lbs in 4 short months- And that was with me trying very hard to limit her diet and cut sugar. So not only does she struggle with not being able to do the things she once did, she also struggles with her apperance- which of course is a big deal at 10 years old. But in the midst of all the negativity, Sunnie manages to smile and find joy in life.- She truly is my sunshine.