Selene's Story

"Being a mother is learning about strengths you didn't know you had, and dealing with fears you didn't know existed."

16 months. We went 16 months not knowing the danger our child was in. Every germ. Every fever. Thinking back on the nights I sat up holding her with 100 degree fevers or delayed going to the pediatrician for a day or two hoping it would pass, I am overcome with guilt.  Though I am working on thanking God for protecting her and moving on.

It started with an infected belly button when she was a newborn. Weird, but our pediatrician told us to apply hydrocortisone and didn't seem too worried. Then the ear infections started. Then eczema flared. I gave up dairy for three months. Nothing seemed to remedy it. I made an appointment with a dermatologist...in 5 months. At 10 months, she developed puss pockets over spots where her teeth were popping through and her mouth would bleed when she barely bumped it. The dentist and dental surgeon had no answers (who knew 1000s of neutrophils live in and protect your mouth?) The weekend of my brother's wedding, she developed sores on her leg and side, more nights of sitting up. It seemed she got sick every time we traveled somewhere new....

Sunday, we drove straight from State College to our local ER because her sores had tripled in size and she was burning up. Staph, antibiotics, trips to our pediatrician, different antibiotics, cultures, trips to CHOP surgeons and eventually infectious disease. No answers. Infectious disease said it COULD be something called neutropenia. But that is super rare and most likely not it. We ran genetic testing that took 3 months to get back. During that time I fought the sores with creams, all to no avail. At the end of February I got the phone call that all their tests came back negative. The nurse was about to hang up after delivering what she felt was good news,"Help me! Tell me what to do next!" I begged.

They arranged an immediate appointment with a dermatologist. I walked into the appointment thinking she must be allergic to something and walked out having been seen by a whole team of doctors and with an appointment with an immunologist. They asked me to get blood work done so that we'd have something to talk about in a month.  So a few days later my mom and I took the girls down to the lab, got some blood drawn, went to the zoo, went home, put the girls to bed, and my phone rang.

The first question out of the doctor's mouth, "Does Selene have a fever? If a fever hits 100.0 you go straight to the ER." I felt like a brick was thrown at my chest. I listened as she poured through the inital results of the blood work. Selene's neutrophils (ANC) were 0. These white blood cells, created in bone marrow, fight infections and keep so many aspects of our bodies healthy. She's in great danger and we will be receiving a call from a hematologist the next day with more details.

I held it together, listening, taking notes, and the moment I pressed end I collapsed into my pillow. I could barely get the words out to tell Dan and my mom the news. I wept like I had never wept before. Fears of losing my child, fears of illness, and doctors and things I never imagined in our lives. But who imagines they will have a sick child? No one.

Friday, I received a call from Bev, the bone marrow failure (words that still terrify me) nurse who would become my biggest advocate. She navigated the puzzling and painful tasks of insurance pre-authorizations, coverage, locating medicine, and making dozens of arrangements in those first few days when I couldn't say the words "Congenital Neutropenia" without bursting into tears.

We met our hematologists on Monday (we love them) and by Thursday we were in for a bone marrow biopsy to confirm their diagnosis.  As we drove home on that first day of Spring, obviously stopping as Rita's for a special (free) water ice for our brave girl, Dan and I couldn't stop saying "Thank the Lord we live 40 minutes from this hospital."

Obviously the diagnosis was confirmed, she has an ELANE mutation on the 19th chromosome. One blip in the replication of her DNA and her life's course takes a drastic detour from the path we dreamed for her. She started her daily shot of Neuopogen. I remember sitting in the family services department being trained to give the shot, tears running down my face. I thought I'd have to read the directions every time, how would I remember to scrub my hands, disinfect the vial, draw, avoid air bubbles, squeeze, inject, count to three, release, band-aid. Now, when the 6:30 alarm goes off Ainsley and Selene run around singing "shot time!" as I prepare every thing and two minutes later we are upstairs getting into the bathtub.

The first few weeks brought many bumps in our hopes of a low dosage and early response to the medicine. It felt like we were living in labs and the hematology department for weeks. When Selene was a newborn I fretted over the drop of blood they took from her toe yet here I sat every three days watching them draw vials of blood from her tiny arm.

But here we are, not even 4 months into our diagnosis and we are living a new normal. Though her numbers and dose are stable, the best chance she has is with a bone marrow transplant. Before sepsis, before leukemia. I will essentially take my happy, healthy, child and I will destroy her for a year. And in the end, she will be cured.

After having kids, my brain has been a fog. I've forgotten to cancel automated payments for memberships we aren't using, I forgot to change our electric supplier before rates rose and the Polar Vortex hit us hard. But I will tell you, the one place my brain does not fail me is Selene's care. I will make endless calls. I will harass pharmacies for the tiniest syringes they make and to deliver our meds on time, I will make appointment after appointment with specialists to be sure that she is in "perfect health." I will not fail my child now.

We are blessed beyond words. Ainsley has fabulous days with Nana every time I need to take Beanie to an appointment. Dan works in the city and has made it to almost all of her appointments. Everyone has been incredibly supportive, coming to visit, sending cards and prayers. Our insurance covers all medical expenses. While this journey ahead is going to be difficult, I am thankful that I go into it knowing we are backed by an army of family, friends, thoughts, prayers and love.