Mile #134 in honor of Ethan

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Our identities are irrevocably connected to our experiences. Parenting is as such an identity about experiences. While this identity changes right alongside our children, it does not end. Even as parents are faced with the unimaginable.

Every year, thousands of children are diagnosed with cancer in the United States. These diagnoses are often followed by varying degrees of grueling treatments that take a toll on both the small patient and their families. Siblings carry on with school despite their worry and conflicting desire for their parents' attention. Some parents continue working while managing treatment and medication schedules, medical insurance and payments, school/educational accommodations, day-to-day care of the entire family all while trying to manage their own anxiety, worry, pain and grief.

For Lacy Crossman, her identity will always be defined by her son, Ethan's, battle with brain cancer.

She'll always be his mommy, and the mother of 6 kids. She'll forever be an advocate for cancer patients of all ages, but especially of little ones like Ethan.

BIG -the Belonging & Inclusion Group-in collaboration with Wellbeing share Ethan's Story with you during Brain Cancer Awareness Month and Mental Health Awareness Month. In sharing Ethan's Story, we not only remember his brave battle. But we also acknowledge the toll grief takes on us all, and our collective desire to respect our whole-person wellbeing

Ethan's Story

Lacy Crossman, Sr. Specialist Customer Care, Ethan's Mom

Ethan was born on July 29, 2011. He was a chubby baby, always loved food. He was always full of smiles and giggles. Ethan was very much loved by everyone and always had love to give. He had a great personality and was so funny. He made everyone laugh.

In November of 2012, we noticed some strange symptoms. Despite several doctor visits, nothing was amiss. However, the following summer, Ethan stopped walking. He became sensitive to noise and appeared dizzy. An MRI showed a mass. Within a few days, Ethan was scheduled for his first brain surgery.

The surgery removed part of the mass, but the doctors were not able to remove the entire tumor because of the location. Ethan was then sent to Children's of Minneapolis in Minnesota for two rounds of intense chemo. The treatment made him lose his hair and vomit within five minutes of starting each dose. The leftover tumor grew even though he was on the chemo.

Then, in October 2013, Ethan had his second brain surgery to remove the entire tumor. There were complications again because of the location of the tumor. It left him with vocal fold paralysis, which meant he could not breath, talk, or swallow on his own. While he already had a feeding tube, the complications mean he had to have a tracheostomy. He also had to get a permanent shunt placed into his brain to help drain the extra fluid.

Once Ethan was stable, he was flown from Minneapolis to Chicago Children's Hospital for radiation treatments. We-Ethan's dad, his three sisters and I- lived in a hotel in nearby while Ethan had radiation five days a week for six weeks. His hair started to come back.

Then, Ethan was sent back to Minnesota for a second round of inpatient chemotherapy-four months of 5 hours treatments 5 days a week. His new hair fell out again. A few times, we tried to bring Ethan home between treatments, but we often ended back in the hospital because of to fevers and infection.

But Ethan did get better. After those four months, we did six months of oral chemo at home every single day. And Ethan went into remission! He was able to get his port and trach removed, and everything was going good for two years.

In January of 2016, a routine MRI showed a new growth. His cancer was back. We were so upset.

Doctors decided to do, yet again, another brain surgery -his third -followed by round of radiation. This time, doctors prescribed a different type of radiation, and we were able to stay in Sioux Falls. After 6 weeks of 5 treatments per week, Ethan had over 60 rounds of radiation. The doctors told us he could not have any more radiation in his life. And, Things again were good until January 2017.

The tumor was back and growing again. Because of the previous treatments, we were kind of out of options. So, we started looking at clinical trials. We also started daily oral chemo and just started praying it worked. Ethan had already battled a lot of pneumonia. He has facial weakness, and his entire left side was weak because of the treatments and surgeries. This made it more difficult for him to clear his airway. He had treatments to his vocal folds to help him from aspirating and makes it easier for him to talk. For a while, this was working.

But a few months later, Ethan's battle took a turn. Between July 2017 and January 2018, Ethan became unresponsive several times. Each time, he was rushed either by ambulance or air ambulance and admitted to intensive care. He would be sedated and intubated to stabilize his tired body. These events forced us to make a very difficult decision to stop his chemo and explore new trial treatments.

We felt some of these could be side effects of the chemo, but we also knew the chemo was keeping the tumor stable. It was a very difficult decision to make. But in four and a half years, Ethan fought through 18 surgical procedures, 12 blood transfusions, countless trips and numerous nights in hospitals, several ambulance rides, 2 fixed-wing plane rides, 3 helicopter rides, and several weeks in a ICU. Through all of this, we felt so very proud of him, our fighter.

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