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 Our daughter Lillian was diagnosed with infant leukemia on a Tuesday. Just a few days before, she was crawling in the sand on the Oregon beaches, playing with her dog, and learning to throw balls with Daddy. Lillian was a healthy eight-month old, and didn’t look or act or indicate in any way that a cancer had invaded her young marrow.
The day before her diagnosis, Lillian woke up angry and in pain with a slight fever. Because her primary pediatrician was unexpectedly out of the office we hurried to the nearest urgent care center to get a quick amoxicillin prescription to cure what we deemed an obvious ear infection. When we arrived at urgent care the physician, Dr. Hickey, examined her ears and confirmed my amateur diagnosis of bilateral otitis media.
We were given our antibiotic and were almost out the door when Dr. Hickey pulled up Lillian’s onsie and asked me about the six subtle petechiae on her chest. After many consultations, he sent us to our local hospital for a blood draw and then home with the amoxicillin and a promise to watch for more spots.
When I returned home, my answering machine was blinking rapidly with several messages from the urgent care center. Lillian’s white blood count was 281,000—30 times the upper limit of normal. Dr. Hickey told me to hang up and dial 911 to be transported by ambulance to Doernbecher Children’s Hospital in Portland, 90 miles from our home. That 90-minute ride marked the start of our journey battling childhood cancer.
After a long evening filled with tests, X-rays, peripheral IVs, a blood draw from the top of her head, and much speculation about the nature of her disease, we received the official diagnosis a few minutes past midnight. Lillian had infant acute lymphoblastic leukemia (ALL). It was April Fool’s Day, 2008. I kept waiting for someone to say the punch line or pop out from the bathroom and exclaim “April Fool’s!”
That moment never arrived. I couldn’t understand why she had cancer. Babies don’t get cancer. She didn’t smoke or drink or use a cell phone. All of her sippy cups were BPA-free and her baby food came certified organic. She didn’t eat too much tuna or have a family history of blood disorders. I didn’t know that like an unwanted guest, cancer usually comes with no apparent cause or warning.
Infant leukemia is rather rare. The younger a child is diagnosed, the more dismal the prognosis and the harder the treatment. Unlike older children who are diagnosed with ALL, infants do not respond well to traditional therapies and often relapse after treatment. Getting infants into remission is easy, keeping them there is another story. Our best hope, our only hope, was a bone marrow transplant.
Lillian spent the entire month of April in the hospital. I never imagined that I would be in a hospital long enough to put decorations up on the walls, buy blackout curtains for the windows, and be on a first name basis with the cafeteria staff. We spent the next seven months in and out of the hospital: chemotherapy, steroids, antibiotics, transfusions.
A few weeks into treatment she was officially in remission and headed toward transplant. Sometimes we were grateful for her young age because she had no idea of the trauma or the abnormal nature of her circumstance. Other times we were horrified that such a small and helpless child would have to endure so much.
When Lillian was first admitted to Doernbecher she was a baby. While we were there, she grew into a toddler. There she learned to walk, talk, and hold her arm steady for a blood pressure. Every night, at 8:00 p.m. neutropenic children were allowed out of their HEPA-filtered rooms and allowed to roam the halls of the oncology unit. Each night the halls became a chaotic racetrack of young kids on tricycles riding as fast as they could with parents sprinting behind with IV poles, attempting to keep up. I was often inspired by 5-year olds who would pedal their hearts out, stop to remove their face mask, vomit into a bucket, and get right back on the trike for another lap. Childhood doesn’t stop in the oncology ward, it’s just a bit modified. It was during these moments that I was most inspired to remain strong and to keep an extra supply of hope in my back pocket.
In mid-summer, we were told that they found a perfect, a willing, and an available bone marrow donor. A transplant date was scheduled, and after a brief relapse and two more chemotherapy rounds, Lillian began the preparatory chemotherapy and total body radiation. During her transplant we were in the hospital for 34 days. It was not an easy journey, but in total her transplant was astonishingly smooth. The night she received her donation, we sat on the bed for an hour while the new cells were introduced into their new home. Every so often we told Lillian to welcome her cells graciously and be a good hostess. I cannot describe how much hope was in that very tiny bag of blood. The next three weeks were the most awful of my life, but 25 days post transplant we were so excited to be discharged that I literally did cartwheels on the way out the door. It was the last time that she stayed in a hospital overnight.
Since her transplant, Lillian has done remarkably well. By some amazing miracle, the cells took root without complaint. And while most of the transplant kids we know struggle, she does not seem to suffer any side effects from the transplant. She has been free of all medication for many months and she is visiting the doctor only now and then. Recently, she had her one-year post-transplant exam and there is no sign of cancer in her blood or in her marrow.
By no means am I grateful for our experience. The worry, the heartache and the trauma of our experience forever changed my outlook on parenthood and on life. I am acutely aware of each moment we spend together and mentally note every smile and every word. I am eternally grateful for this awareness. I just wish it didn’t come at such a hefty price.
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