Brittney’s Caregivers’ Perspectives:

David Emmett, Brittney’s father, shares his perspective as a caregiver. During this time in the hospital her mother and myself worked together to care for Brittney. I handled her cats and her home while she was away. When it came to her care in the hospital my main function was to tell Brittney stories. I tried to keep her connected to her family, her cats, and any crazy thing I could think of to engage her. We made a commitment to Brittney that was seven days a week for two years. I found that we were able to help Brittney most by being there and trying to help her stay connected to the outside world. Reassuring her she was going to succeed in this scary ordeal. I am sure that our efforts were extremely helpful in her eventual path to recovery. For me fighting through exhaustion and grief was the path to her success. I know that it was a million times harder for her than me, so helping her in any way I could was the only option. As a caregiver, my biggest hope was to give all that I could to have a positive result for Brittney.

Brittany’s Mom, Michelle Lee, shares her perspective on Brittney’s journey. My daughter has never had it easy. She has lived with many autoimmune diseases since her teenage years. I NEVER expected to add cancer to her list of medical issues. The surgery to remove her tumor was major and of course didn’t go as planned. She ended up in multiple facilities, trying to heal/recover for a year and a half. During this time, her dad and I were her main support. I went to see Brittney, whether she was coherent or not, every single day for 18 months. It’s what comes natural... a mom will always be there for her child.

It was the scariest thing I had ever experienced. Never would you expect at 30 years old, that your only daughter would literally be fighting for her life. She should have recovered within a few weeks of hospitalization and a few months of rest at home. The bottom line is, the medication that had helped her survive throughout her years of lupus, had now unintentionally almost killed her. Her insides were mush from long term steroid use. This journey that we went through was emotionally draining. I watched my daughter fighting to breathe, she was on a ventilator more than once. I watched her gain 100 lbs within a month due to so many fluids being injected into her. I watched her losing weight drastically at other times due to malnutrition. She went many months without any food intake.

She was on TPN and feeding tubes. I watched the monitor in her room for hours at a time on days that she was sedated. Her respiratory rate was poor, heart rate always elevated due to POTS, her blood pressure running low. She was on pressers during the last couple of months of sepsis in the ICU. This affected every bit of her body from head to toe. At one point, they had monitors all around her head to check for seizures because she wasn’t talking or functioning right. That time it was a reaction to a medication. Her heart had pauses when she slept, so she had to get a pacemaker. Her feet and ankles were turning down and inwards.

She had been in bed too long and needed surgery to fix her feet. How does a mother handle all of this??!! Prayers and faith that God would let her make it through this. We had so much support from family, friends, and complete strangers. I documented it all on Facebook.

The outreach from the people you would least expect. Old neighbors, friends from elementary school who haven’t seen you in decades, etc. Brittney and I were both blown away by the support of others. I never let her see me cry. How could I break down in front of her, when she was so strong and never broke down in front of me?

Sometimes, I would walk in her ICU room, and it was as if I was in a dream... living a true nightmare. Infections were constant. We always had to be covered with PPE, for her protection and ours. She had open wounds that weren’t healing. At one point, she had 10 drainage tubes coming out of her. This was all too much to handle. But, you do it. You get up everyday and you stay right by her side until the end. You never give up. And she didn’t.

She is a true warrior. She doesn’t realize what an inspiration she has been to all of us. If you asked her, she would say, “I didn’t have a choice... I’m not ready to die.” She is now at home recovering. Back with her two cats that she missed dearly that whole time. I still go over everyday to help her get her day started. She has OT, PT, and home health that come each week... and me.

A mom who will be there for her as long as she needs me. I’m blessed to still have her. Never take anything for granted and thank God everyday for your blessings!