Our daughter Averie was born November 26, 2016. She was overdue so I was induced on Thanksgiving Day, but she didn’t want to come out. I had a C-section two days later. There was no indication during the first three months that she had any health issues at all. Averie was a wonderful baby — healthy, playful, and always full of smiles and laughter. She was reaching all her milestones on schedule and began sleeping during the night when she was four weeks old.
When she was three months of age, we took Averie for a regular checkup. The EKG uncovered a previously undiagnosed problem called patent ductus arteriosus (PDA), which refers to an opening between two major blood vessels leading from the heart that is normal while in the womb but is supposed to close after birth. Doctors wrapped the open artery in a coil. Averie’s body then grew tissue that embedded the coil to the point that it is now invisible even to ultrasound.
During the procedure the surgeons discovered an inguinal hernia. They wanted to treat that without surgery, but two weeks later the hernia incarcerated, which meant they had to perform another operation during which they also discovered and repaired an umbilical hernia.
We were relieved when we were able to take our normal, happy baby home with us. A month later we put Averie in daycare and returned to our jobs. My husband Ricky and I both work in the commercial insurance industry for a firm of brokers in Pleasanton. We hoped that our trips to the hospital were ended for good and that our little four-month-old infant would have a normal life from that point forward.
Unfortunately, those operations and hospital trips turned out to be merely setting the stage for a terrible main event that was to follow six months later. When Averie was ten months old, she was diagnosed with a nightmarish form of childhood cancer called neuroblastoma. It was discovered when we took her to the Deer Valley Kaiser Medical Center for a check up. We were concerned by dark circles that had appeared under her eyes. The pediatrician initially thought that she was having allergies. However, the doctor noticed that Averie’s head was larger than normal, so she scheduled a CT scan that found two masses, which indicated to them that it might be neuroblastoma. The diagnosis was delivered September 7, 2017, which was about ten weeks before her first birthday. It was just bad luck for Averie because neuroblastoma is a relatively rare cancer with fewer than 700 cases per year in America.
The sudden discovery that our precious and beautiful child had a dangerous disease rocked our world. Ricky and I had no idea how to process the information. We were unprepared for the terrible blow and had no idea what to think or say. Fortunately, perhaps, we didn’t have time to sit around and cry because the medical interventions began right away. Doctors started working on Averie’s treatment plan the day the diagnosis was made. We had to call into work and tell them that the few hours we had expected the appointment to take was now going to stretch days into the future.
“When Averie was ten months old, she was diagnosed with a nightmarish form of childhood cancer, called neuroblastoma.”
“Rick and I, however, were still trying to cope with the new normal that life was becoming and attempting to digest the changes that were taking place.”
That very day they transferred Averie to Oakland and performed a full body CT scan to search for other tumors. They found a third one in her head plus tumors in her chest, abdomen, bones, and bone marrow. They immediately scheduled surgery, inserted a shunt to drain the excess fluid that had built up, and opened her stomach to biopsy the tumor, which they believed was where the cancer had started. It was a major surgery, so they transferred her to Oakland Kaiser and performed the operation on Friday. Three days later, on Monday, they began chemo. For a while Averie was under heavy medication to help her cope with the pain while recovering from the effects of the operation.
Treatment began with a chemo series of three rounds for four days of treatment followed by three days recovery. The series were spaced three weeks apart. Each round lasted for four days, Monday through Thursday, followed by three days regaining strength, which meant that we were in the hospital for 12 days. Fortunately, Averie experienced less nausea from the chemo than from the drugs following surgery. She was a good patient!
Throughout the ordeal of those days, whenever she was free enough of pain and discomfort she would revert to her normal cheerful happy disposition.
Following the 12 days, we returned home and Averie resumed life as her normal happy self. Rick and I, however, were still trying to cope with the new normal that life was becoming and attempting to digest the changes that were taking place. We had notified our employers about what was going on.
They were understanding and gracious in their response, but we each had to take an unpaid leave of absence because we had exhausted our paid vacation time during the first hospitalization. Ricky was never able to return to work, but I started working part-time from my home after a couple weeks.
When the three weeks recovery at home were up we resumed the chemo series, but this time Averie was to be an outpatient. Before starting the second series the doctors checked Averie’s progress during her time at home and discovered that the tumor wasn’t responding as well as they had hoped, so they bumped her up to high-risk medicines. Outpatient commuting to Oakland was too difficult so, because of her high-risk status, they admitted her and permitted Ricky and me to stay with her. Facilities at the Oakland Kaiser Hospital are nice. Each room is equipped with a nice bath and shower.
I spent each night sleeping on a comfortable couch while Ricky used a recliner. Doctors, nurses, and staff members at Kaiser are all warm, concerned, and capable. They were more than friendly; many of them became friends.
“Averie is in a battle for her life, but she’s got a lot of people working and praying for a wonderful victory.”
Ricky and I were reassured to learn that Averie’s oncologist had been conferring on a regular basis with specialists at UCSF and other medical centers. It turns out that local hospitals are joining forces to combat cancer.
Specialists from each oncology department are members of a cancer network, and every Tuesday they conduct a tumor-board during which they examine the progress of each patient the member doctors are working with. As a result, our little girl has always had a lot of talented, experienced, and committed people looking out for her.
Averie continued undergoing the high-risk treatments of six rounds with five treatments each round. She endured the procedures well, but the tumors remained. On March 15, following the eighth round, Averie had an operation to remove the tumor in her stomach. They also removed her adrenal glands together with some active cancers plus several calcified tumors that had died.
Following the operation, Averie spent some time recovering and we moved to UCSF on April 9 for six days of treatment with a different chemo. Then, on April 16, she had a stem-cell transplant, using cells that had been taken from her own body. We remained at UCSF while they waited for her white blood counts to drop because of the procedure and then to come back up on their own. Fortunately, as I write this, they are coming up nicely.
Caring for Averie and trying to manage issues dealing with work, insurances, finances, and transportation has required a lot of time, money, and energy from Ricky and me. Things have been even more difficult because at the beginning of our problems our landlord told us he wanted his Discovery Bay home back. As a result, right in the middle of Averie’s surgeries, we had to deal with all the issues of finding a place to live, packing up our furniture and belongings, and then moving everything into the new house.
Fortunately, my father Randy Biglow turned out to be a real hero. He left his home in Florida to manage the details of the move on our behalf. Friends and family members helped with the move and continue to pitch in to assist us in all kinds of ways. We still aren’t completely settled in the new place because we haven’t spent more than a week or so at a time there since we got the key.
Housing, finances, insurances, work, and all the troubles of life these days are of small importance compared with the fact that the doctors are happy with the way Averie is responding to treatment and are giving us a hopeful prognosis, which of course helps us to maintain a positive attitude throughout this ordeal. Averie’s counts are up, and she’s beginning to eat and play again. She’s feeling a lot better so, of course, we are feeling better, too.
Averie is in a battle for her life, but she’s got a lot of people working and praying for a wonderful victory. Ricky and I feel that we must continue to be confident and optimistic in order to encourage Averie to hold on to her happy attitude during these difficult days. However, our beautiful little girl continues to maintain such a bright cheerful disposition throughout the ups and downs of treatment that she might be helping us remain positive as much as we are helping her.
We really do remain hopeful and positive. We know Averie will be fine and that we will see her grown and will someday bounce her children on our knees.
We know that will happen; any other outcome is unthinkable.
Photo By BRITTANY DEACON PHOTOGRAPHY