Growing up side-by-side is the natural order for siblings. Despite occasional arguments and individual friend circles, siblings usually become best friends. \
They often remain each other’s pillar of support, especially when their parents pass away.
However, the sad story of a young girl with cancer becomes even more heart-wrenching when her father records the poignant moment of her beloved elder brother bidding her a final farewell. The emotional impact is overwhelming.
Dad Captures Moment His Son Has To Say Goodbye To His Younger Sister With Cancer
Before June 2018, the Sooter family consisted of Mom Chandra, Dad Matt, big brother Jackson, and little sister Adalynn. Jackson was a caring and devoted elder brother who loved taking care of his little sister. Adalynn was described as vivacious and full of energy.
Unfortunately, their happiness was shattered on November 12, 2016, when Adalynn was diagnosed with diffuse intrinsic pontine glioma (DPIG), a tumor on her brain stem.
Her prognosis was bleak, with doctors giving her only a few months to live. However, Adalynn fought hard and lived for an additional 18 months, with Jackson remaining by her side throughout her ordeal, according to their parents.
A poignant moment was captured on June 2, 2018, when Matt shared a heart-wrenching image on Facebook of Jackson bidding farewell to his four-year-old sister Adalyn. Her health had been declining rapidly in recent days, and the family knew that time was running out. The photo shows Jackson tenderly stroking Addy’s hair.
“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 an aggressive type of childhood tumor that forms in the brain stem, the region that connects the brain to the spine. The brain stem controls many critical body functions, such as vision, hearing, speech, movement, breathing, heart rate, and digestion. DIPG is highly resistant to treatment and typically affects children aged between five and nine. It is a rare disease that only afflicts around 300 children annually in the US.
These tumors are categorized into four stages, with stage four being the most aggressive. Due to their sensitive location, it is risky to take a biopsy of lower-stage tumors. Biopsy of high-grade tumors is possible, but at that point, they are usually too advanced for effective treatment.
Symptoms of DIPG
The initial indications of DIPG are frequently observable in the facial area. This is due to the location of the 12 cranial nerves that govern facial movements and functions in the brain stem. Here are some of the modifications that may be noticed:
- 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
Normally, these symptoms will impact both eyes, rather than only one. Due to the fast growth of these tumors, you may notice your child’s face drooping on one side, or sudden difficulties in hearing, chewing, and swallowing. The weakness in the arms and legs can make standing and walking challenging. Additionally, headaches, nausea, and vomiting may manifest.
Causes and Treatments
Normally, these symptoms will impact both eyes, rather than only one. Due to the fast growth of these tumors, you may notice your child’s face drooping on one side, or sudden difficulties in hearing, chewing, and swallowing. The weakness in the arms and legs can make standing and walking challenging. Additionally, headaches, nausea, and vomiting may manifest.
Addy Joy’s Hope Foundation
After nearly four years, the Sooter family continues to mourn the passing of their beloved daughter and sister, Adalynn. According to her parents, Jackson remains a joyful child, although he still deeply misses his younger sister. In memory of Adalynn, they established the Addy Joy’s Hope Foundation, a nonprofit organization dedicated to raising awareness of DIPG and advocating for improved treatments and a potential cure through donations.