When was your child diagnosed with cancer? What type of cancer diagnosis were they given?
Odin was diagnosed with DIPG (Diffuse Intrinsic Pontine Glioma) on October 3, 2013 when he was two and a half years old. We noticed he was stumbling a bit, his right eye was crossing a little inward, and he was having a few more emotional outbursts than normal. However, his little sister had just been born not even six weeks prior, and we thought he was reacting to new changes. We went to the doctor, who sent us for an MRI the next day. It was then they told us there was nothing we could do, except maybe look for a clinical trial that would give us time to “come to terms” with his inevitable death.
How did their treatment progress? If you can, tell us a bit about their final days and end of life.
We were accepted into a clinical trial through Duke Children’s Hospital and Odin started a typical round of radiation on Halloween. He finished with radiation and an experimental drug shortly before Christmas, and went on his Make A Wish trip to magical Disney. We went on a giant character hunt and let Odin be a little boy for awhile. After the holidays, he was on a few rounds of chemotherapy, but when his symptoms shifted in March, we discontinued the trial, as the chemo seemed to be doing more harm than good. We were told it could possibly be progression, and would know it when we saw it. Odin had weakness on the right side of his body and sixth-nerve palsy of his right eye. Other than anti-anxiety medication and some natural supplements, he was able to come off of other medicines, and was signed up for in-home hospice services. We spent the summer visiting family and taking Odin on adventures to the beach and the mountains. When fall came he was still stable, so Mom returned to work and we tried to settle into a routine. For the most part, Odin was Odin after diagnosis. Still very loving. However, while he was on steroids, he got so extremely angry. Even without steroids, there was a period of time after treatment where he got extremely anxious. He’d throw these huge tantrums where we’d have to hold him down so he didn’t hurt himself. Anti-anxiety meds helped a huge deal after that. He developed a fear of fire, even becoming concerned when cartoon characters faced it. We imagine it was either something he saw in his brain or experienced through radiation, but we’ll never know.
In March of 2015, we started seeing some small changes in mobility but we didn’t have any other viable treatment options for him. It wasn’t until April 11th that we saw definite signs of progression, and over the course of the weekend he lost the ability to walk. He passed away on April 29th, a month before his 4th birthday, and 18 months post-diagnosis. We were told for DIPG this was a significant amount of time.
What did this devastating tragedy feel like for your family? What was early grief like?
Having a child is carrying a piece of your heart outside of your body. Losing a child is having to carry that empty space with you for always. It is a wound that never heals. Early grief was numbing and raw at the same time. We really struggled, especially for the first two years. The first year was a lot of shock, second year a lot of coping and searching. We tried counseling, retreats, medication. It’s also very lonely because even those with the best of intentions start to peel away outside of crisis mode.
What helps you in your grief now?
Bereavement retreats on a yearly basis have been essential. It’s one time when it’s absolutely OK to talk about our son where no one judges us or acts like we should have “moved on” already. We’ve tried some self-wellness. Dad meditates, Mom does reiki. Mom tries to do some DIPG research fundraising. We both try to have meaningful activities and spend time with our other children. Priorities have really shifted. Family is more important. A lot of other things seem pretty trivial. We still struggle, but we’re now 5 years out and things seem a little less acute, though there isn’t a day that goes by that we do not think of him.
If you have other children, how did they handle the whole experience? If it has been over a year, how are they now?
Scotland was only about two and a half when Odin died, so she was a baby through most of it. The worst thing for her has probably been dealing with our anger and sadness. We’ve probably been a little too hard on her, and her sister. We have three girls, two born after Odin’s death. We talk openly about Odin and he is included as part of the family. When Scotland first started preschool, she would talk about him, and you’d never know when she’d mention she had a brother who died. They do fine, though sometimes it’s hard to figure out how they are processing the idea of “death.” Larkin, who is 4, is at the stage where she sometimes talks about him as if he’s living someplace else and can’t visit. But, Odin’s a part of their story. They often say they miss them; Scotland is now at a point where she doesn’t have real memories of him.
What made your child with cancer unique?
People always said he was an “old soul.” He had these great big brown eyes and a way of calm contemplation and taking in the world that was surprising for how small he was. He also had a great sense of humor though and could be extremely silly. And so very loving.
What were some of your child’s favorite things to do? Did they have heroes, sources of comfort & joy? Odin Baer loved cuddles, Curious George, music and dancing, all things Muppets, and playing outside with his sister Scotland and his friends. His favorite movies were the Toy Story movies (he called them The Dinosaur Movies, because of the character Rex). He was often quiet and observant and his humor would sneak up on you. He called Batman “Fatman,” even after we corrected him, and even though his tent was the “Batcave.” He woke up each morning with a smile. When he couldn’t really walk anymore, he’d still call down the hall for Mom to come get him. One of the big things we remember is that he always would ROAR like a bear. He even taught his little sister, who was under two. He gave kisses and hugs amply, had big brown eyes and a curiosity for the world. He loved everybody.
What is the one thing you wish you could tell everyone about childhood cancer?
It can happen to any child. We had never heard of DIPG until our child was diagnosed. And it wasn’t anything we did or didn’t do. It just was. The worst straw drawn, ever.
But, we had hope the whole time. We had to, to keep going. As my husband said at the time, “We have the rest of our lives to grieve.” So we tried to make every day count for Odin.
How did you find out about Rett’s Roost?
I searched for bereavement retreats, and maybe saw something in an online group. I reached out, even though we live out of region, because we needed something as a family.
What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?
Friends, connections, and knowing we’re not alone. I also discovered some therapies and techniques that can help me process when I’m alone.