Caregiver to Husband Sean, a Fanconi Anemia, tongue, bladder, and throat cancer survivor,
Writer, Speaker, and Caregiver Advocate at The Negative Space,
Director of PreK Reading Corps, Reading and Math, Inc;
St. Paul, MN
Allison Breininger married her high school sweetheart, Sean, right out of college. The two adopted their daughter, Maya, from Haiti a few years later. One year after Maya arrived, the combination of a handful of skin cancers, a bout of Hand, Foot, and Mouth Disease, and low white blood counts led Sean to the Mayo Clinic looking for answers.
One year and a major missed diagnosis (not a typo, they actually missed it!) later he was diagnosed with Fanconi Anemia, a rare genetic disorder that causes bone marrow failure and head and neck cancer at a rate of 1000 times that of the general public.
Just months after his diagnosis, Sean had a bone marrow transplant, spending 38 days in the hospital, while experiencing every complication in the books.
Life in the ten years since then has been a rotating door of doctor’s visits and hospital stays. Tongue cancer caused the removal of half of his tongue and all of the lymph nodes on one side.
Bladder cancer resulted in the removal of his entire bladder and prostate. Inoperable throat cancer led to 35 days of radiation and chemotherapy. Gum cancer caused the removal of a tooth and portions of his gums. In addition, Sean has been treated for cancer in his cheek and more than one hundred fifty skin cancers.
All of these treatments and procedures have wreaked havoc on Sean’s body, causing Chronic Kidney Disease for which he requires daily IV fluids, cataracts in both eyes, and avascular necrosis in both hips. At 42, he is well past the median age of death for people with Fanconi Anemia. More cancer diagnoses are inevitable and so his calendar is full of screenings, scopes, and scans to catch new things as they appear.
In the decade since Sean received his diagnosis, his wife, Allison, has been by his side for every appointment, procedure, and hospitalization. She had no medical background ten years ago but is now fluent in medical vocabulary and is able to administer IV fluids while facilitating a conference call at work.
In her time as his caregiver, she has come to realize that caregivers are often in the negative space: unseen, unrecognized, unsupported, yet a vital part of the big picture. She has watched as teams of experts support and care for her husband, while she, in the same room, traumatized by the same events, is overlooked, even as she struggles to take on a role for which she was entirely untrained and unprepared while continuing to work and parent full time.
Seeing the need, Allison created The Negative Space, a site where she writes openly and honestly about the realities of caregiving, encourages other caregivers to speak their truth, and provides concrete support suggestions for those with caregivers in their lives, including her “I’m Part of the Story” Caregiver Gift Boxes. Allison also writes, speaks, and advocates on behalf of caregivers through partnering with organizations to improve and increase their caregiver services and co-hosts the In Sickness Podcast with a fellow young spousal caregiver. You can find her online at www.thenegativespace.life and @negspacelife on Facebook, Instagram and Twitter.
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