DIPG (Diffuse Intrinsic Pontine Glioma) is a terrible cancer that takes every single child that is diagnosed. It does not discriminate and it usually takes children in the prime of their childhood. It’s horrible. The Cure Starts Now states “DIPG affects the pons portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing. Unfortunately these symptoms usually worsen rapidly because the tumor is rapidly growing.”
My friends daughter, Selina, died this month of DIPG at the young and vibrant age of 10. Sadly since she turned 10 she was essentially immobile and unable to communicate verbally (although she sure did let you know what she wanted with grunts or blinking or nodding). She could not eat all her favorite foods, or dance, or play with her friends as she used to. She was diagnosed in February 2018 and died on October 15, 2018. She was living a completely normal carefree life until February vacation in Massachusetts where she lived and all of a sudden she had some significant neurological symptoms and within 24 hours she was diagnosed with DIPG.
I have had friends with kids with cancer before, most often Leukemia, and all of them have survived. I knew this was different. From the day they shared the diagnosis we knew that Selina wouldn’t make it. That just didn’t seem fair. I have 3 kids. My friend has 3 kids. Why her child? Why not mine? I still do not understand. The grace and courage my friend’s family has shown me is phenomenal and unimaginable to me. I haven’t been able to call her yet since Selina’s passing because I know that she is surrounded by love and support right now. I will wait til things calm down and talk to her. Meanwhile I have done all I can to share information about DIPG, donate to DIPG and share Selina’s story. From a go-fund me account that was created early on to fundraisers locally and far away, the Oehmen family has seen the support of community and maybe this is what this piece is all about.
The local radio station Fun 107 heard about Selina’s story and they heard that her parents had bought her Ed Sheeran tickets and they arranged for VIP passes so she could meet him. Ed Sheeran’s music helped Selina find peace and it was on in the home 24/7 to keep Selina happy and to inspire the family. See more about the trip to see Ed Sheeran here. Selina touched so many lives and it was so devastating when we learned she had passed away. Her obituary was touching and meaningful and gave people opportunities to donate in her name.
I will always hold Selina and the entire Oehmen family in my heart. I met Michelle just a year or so after we moved to the town of Somerset. She was loud, funny and became a good friend. We went to a book club together with our mutual friend, Tina, who has been a true rock for Michelle and the family taking care of her boys and supporting the family as needed. Tina’s daughter, Erin, has been the most amazing friend to Selina before and during her battle with DIPG. I have felt helpless being half way across the country as we moved from Somerset, MA in 2013.
I’m not sure why Selina’s story has moved me so much. I truly struggle with it on a daily basis. I think it’s partially survivors guilt, as it could easily have been one of my kids and cancer is unfair. I think part of it is because our kids mean so much to me I cannot imagine losing one and I cannot fathom how Michelle and Ken are keeping going right now. And I feel guilty that I am not there. No matter what- that’s not important. What is important is that DIPG is cured and if it is then many other cancers can be cured as well.
Did you know that only 4% of all cancer research funding goes to Pediatric cancer and then DIPG only gets a small percentage of that funding? If you want to make a difference and help please donate to The Cure Starts Now today.