Siblings are meant to grow up side-by-side. They’ll fight, they’ll have their own groups of friends and eventually families, but at the end of the day, they will be best friends. Siblings will be there to support each other when their parents are no longer on earth. That’s what made this heartbreaking story of a little girl with cancer even worse. Her father captured the moment on camera when her adoring older brother had to say his final goodbye. It’s absolutely gut-wrenching.
Dad Captures Moment His Son Has To Say Goodbye To His Younger Sister With Cancer
Prior to June 2018, the Sooter family was a family of four: Mom Chandra, Dad, Matt, big brother Jackson, and little sister Adalynn. The family describes Jackson as a loving boy and doting big brother. He absolutely adored his little sister and was always trying to take care of her. Adalyn they described as “spunky” and full of life. (1)
On November 12, 2016, however, the world came crashing down on this happy little family when doctors diagnosed Adalyn with diffuse intrinsic pontine glioma (DPIG), a tumor that was growing on her brain stem. Her doctors gave her only a few months to live, however, little Addy was a fighter and lived for another 18 months. Their parents say that Jackson was there by his sister’s side the entire time.
On June 2, 2018, Matt posted a heartbreaking photo on Facebook of Jackson saying goodbye to four-year-old Adalyn. Her condition had been deteriorating over the last few days and they knew that she didn’t have much time left. In the photo, you can see Jackson stroking Addy’s hair gently.
“A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister. This isn’t how it’s supposed to be. But this is the broken world we live in,” Matt wrote in the caption. “Addy’s symptoms have progressed rapidly over the past day and a half. Yesterday she woke up as her spunky playful self. While we still see short instances of our girl she can no longer eat or swallow without difficulty and she’s sleeping most of the time now and we’ve admitted her into inpatient care. Most likely she doesn’t have much time left. For our family and close friends if you feel you need to tell her goodbye we recommend you contact us and do so soon. Pray for Jackson. He doesn’t want to leave her side and we won’t make him. Pray for us. That we have the right words and can make the necessary arrangements in time.”
Sadly, Adalyn passed just a few hours later.
DIPG Cancer
Diffuse intrinsic pontine glioma (DIPG) is a type of aggressive childhood cancerous tumor that is highly aggressive. The tumor forms at the base of the brain stem, the part that connects the brain to the spine. The brain stem controls most of the body’s basic functions, such as vision, hearing, talking, walking, breathing, eating, and heart rate, among others. Most often it develops in children between the ages of five and nine and is very difficult to treat. It is rare, affecting only about 300 children in the United States every year. (2, 3)
The tumors are graded in stages one through four, with four being the most aggressive. Doctors can’t safely take a biopsy on lower-stage tumors because they are located in such a sensitive area. It is easier to biopsy high-grade tumors, however, by the time tumors reach these stages they aren’t very treatable anymore.
Symptoms of DIPG
The earliest signs of DIPG can often be seen in the face. This is because 12 cranial nerves that control facial movements and functions are located in the brain stem. The changes you might see are:
- Changes to facial muscles, particularly the eyes and eyelids
- Difficulty looking to one side
- Drooping eyelids or the inability to close both eyes completely
- Double vision
Typically, these will affect both eyes, not just one. Because these tumors grow quickly, you may notice one side of your child’s face drooping, or suddenly they will have problems hearing, chewing, and swallowing. Weakness in the arms and legs making standing and walking difficult may also develop. Headache, nausea, and vomiting may also occur.
Read: Dying 9-Year-Old Boy Bailey Cooper Hung On Just Long Enough To Meet His Baby Sister
Causes and Treatments
Researchers have found a couple of genetic mutations that are associated with DIPG, but they still know very little about how it develops or why. Treatment is most commonly radiation and chemotherapy. Surgery is usually not an option due to the location of the tumors. These are also combination treatments, but they are not cures. There has been some encouraging research done on medications that treat certain genetic mutations, but much more research still needs to be done.
Addy Joy’s Hope Foundation
Nearly four years later Addy’s family is still grieving the loss of their beautiful daughter and sister. The parents say that Jackson is still a happy little boy but he misses his younger sister greatly. They have started something called the Addy Joy’s Hope Foundation where they raise awareness about DIPG and encourage people to donate to finding better treatments and maybe one day a cure.
“As 2021 draws to an end would you consider making a difference for those families fighting DIPG? Who can you tell about DIPG to help raise awareness? What post can you share to introduce others to DIPG? If you’re able would you consider making a year-end donation to a DIPG foundation?
Here are a few we like in no particular order:
Addy Joy’s Hope Foundation (we’re a little biased )
If you are looking for organizations to donate to in 2022, these are some amazing options. Whichever organization you choose, your money will go to helping find solutions for this terrible disease. Hopefully, with more research, fewer children like Jackson will have to say goodbye to their siblings.
Keep Reading: 20-Year-Old Takes On Raising Her Five Siblings After Both Parents Die From Cancer
Sources
- Facebook. Matt Sooter.
- “DIPG.” Cancer
- “Diffuse Intrinsic Pontine Glioma (DIPG).” Healthline. James Roland. May 2, 2018.
- Facebook. Addy Joy’s Hope Foundation