A father whose young daughter died of a tumor in her brain and spinal cord has shared a crushing photo of his son saying goodbye to his sister.
“A little boy should not have to say goodbye to his partner in crime, his play mate, his best friend, his little sister,” wrote Matt Sooter of a tender moment shared between his kids on the Facebook page “Hope for Addy Joy – Fighting DIPG” on June 2. “This isn’t how it’s supposed to be. But this is the broken world we live in. 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.”
Matt added, “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. Always remember: God is in this situation, He’s up to something, and He’s up to something GOOD.”
The photo has collected 3,600 likes and almost 1,000 shares.
In November 2020 Addy, who lived in Rogers, Ark., was diagnosed with diffuse intrinsic pontene glioma (DIPG), which, according to Boston Children’s Hospital, is a “highly aggressive and difficult to treat” tumor at the brain’s base.
In an essay published by the Advertiser, a Lafayette, La.-based website, Matt wrote that signs of Addy’s illness presented at a Missouri theme park when his mother remarked that the girl, then 2, was having trouble walking, a symptom the family surmised was fatigue or a growth spurt.
However, when Addy began falling and experiencing tremors in her hand, she was given an MRI, followed by an unthinkable diagnosis. “The short version, they were fairly certain our daughter had a tumor growing in her brain stem, it was aggressive, there was no treatment and therefore no cure, and it was going to take our little girl from us in a matter of months,” wrote Matt.
Last year Addy underwent experimental treatment in Monterrey, Mexico, trips that Matt told People could last 12 days at a time. The magazine also reported that the family spent more than $200,000 in medical expenses.
On May 10, Matt shared a solemn update with the Facebook group. “I know you’ve all been waiting for MRI results. I wish I had better news,” he wrote. “Addy’s MRI shows that her tumor has spread. It has moved down the brain stem into the cerebellum which is likely what caused the need for her shunt. There is also a large mass in her spine that is placing pressure on her spinal cord…our doctors here have no options for us, and it seems the treatment in Mexico is no longer working. We’re out of options. We are shattered. Everything within us screams to keep fighting, but we’ve run out of weapons with which to do so. Addy is losing ground quickly. We don’t know how much time we have her for so we’re going to make the most of it. Thank you for your prayers.”
The little girl passed away on June 3 “stubbornly but also peacefully,” wrote Matt on Facebook. “She wasn’t in any pain at the end. For those who were wishing to say goodbye I’m so sorry. This all happened so much faster than we expected, but that in itself is a blessing because she suffered so little at the end. We will let you all know once services are scheduled. Thank you for being a part of our little girl’s miracle. While this is only goodbye for now we miss our baby girl terribly.”