From Normal to Nightmare

A well check visit is usually a simple appointment to weigh and measure a baby, check for normal development and answer a parent’s questions. The appointment for my 2–month– old daughter Scarlett quickly turned from normal to a nightmare thanks to brain cancer.

A few weeks prior, we noticed a bruise on her forehead—how would a newborn get a bruise? What we thought was just a bruise was a signal to the pediatrician of much more. She felt the top of Scarlett’s head, with its tight, bulging fontanel, and sent us straight to radiology for a CT scan. From there, we were sent to the ER to await an ambulance transport to the children’s hospital.

It was a whirlwind. My husband and I were panicked, confused and scared. Nurses poked at Scarlett’s tiny arms trying to get an IV, telling us to hold her arm tighter, twist it this way, hold tighter, as she and I cried together. Once the IV was finally in, the questioning began—we were being questioned separately, simultaneously, trying to define the source of the mystery bruise. We were asked repeatedly how it happened, and we had no answer—it just appeared. She had never fallen, been hit or shaken. I grasped at straws for an answer for the relentless steam of questions; the only possible cause of this supposed injury was weeks prior, when I had laid the baby on the bed to change my shirt. Our dog, fifteen pounds of curls and snuggles, jumped onto the bed as he always had, except this time, the baby was there, and he landed on her. She was unhurt, barely fussed. I hardly thought of it again, until I was panicked about solving the mystery of the bruise.

The bruise, with my story of the dog and a CT scan that showed abnormal bleeding in the brain, led the ER staff to call Child Protective Services (CPS). In my experience as a teacher, it may take several reports to get CPS involved with a child; for us, a social worker was sent out immediately and made it to the hospital shortly after we did.

Scarlett’s ambulance ride was the first time we were separated from her. We met her in the pediatric intensive care unit (PICU), where nurses and doctors were busily attending to her. We saw her briefly before we were pulled aside to speak with the neurosurgery resident. He took us to a tiny room with two couches, and we sat nearly knee to knee as he described what he saw in the CT scan. He brought up the image on his phone as he described the giant mass in her brain as “impressive.” To him, impressive was unusually large and shocking; to us, it was the first experience with what we call “doctor–ese,” the vocabulary of the emotionally– detached medical professional. I know he explained more about what to expect over the next few hours, but I remember nothing after “impressive”.

Minutes after being returned to Scarlett’s room in a fog, we were interrupted again, this time by a social worker from the county Child Protective Services. We were taken back to the tiny room and once again asked the litany of questions about Scarlett. By this point, it was clear that we were dealing with something far beyond a bruise, but now that the investigation had begun, it was barreling on. We were asked about our education history, current employment, how we handled stress, what we did when the baby cried, and about our dog. Within 30 minutes of being told our daughter had a fist–sized brain mass, we were being questioned about how we trained our dog and if we knew it was unsafe to leave the baby alone with him. We were in such a state of shock, and the line of questioning so bizarre that we simply answered and waited for him to let us go. Before he allowed us to return to the PICU room, he asked if we would be home Tuesday so he could “stop by and check the house for dog feces.” We said we didn’t know, but it sounded like we would be in the hospital for a while.

The next morning, the bomb was dropped: Scarlett had a 10 cm by 7 cm tumor filling the left side of her head. It was not just in her brain; it had grown in place of most of her left hemisphere as she developed. We looked at the MRI images in awe; it was obvious that there was something severely wrong with what we were seeing. I checked and rechecked the name to make sure it was her, even though I could clearly recognize the silhouette of her chin and nose.

In our first meeting with the head of neurosurgery, we were drowned in information. It was almost certainly malignant, maybe AT/RT (Atypical Teratoid Rhabdoid Tumor) or PNET (Primitive Neuroectodermal Tumor) (meaningless then, but so familiar now). The pressure was building quickly and causing the bones of her skull to shift, which was causing the bruise. These tumors are common (more doctor–ese) in infants because their brains are growing so fast that rogue malignant cells are fueled at an alarming rate, creating a massive tumor before many effects are seen. The outcome for these babies is poor; treatments often leave them with no quality of life.

A biopsy a few days later gave it a name: congenital glioblastoma multiforme. This brain tumor is most commonly found in older men, it killed a senator and is considered a death sentence in adults, but is exceedingly rare in children and even rarer in newborns. Now it was killing my daughter. While the neurosurgery team finished the biopsy, the department head explained their findings. He described how he observed her skull bones to be eroded where the tumor was pressing against them, and how the nickel–sized piece removed pouched out of her skull as it was excised. He then described in excruciating detail how the tumor would continue to grow, choking off her vital functions until she died. He estimated we had a few weeks, maybe a few months. We could make her comfortable with medications until the inevitable time came. Hospice would meet with us soon.

There was no discussion of further surgery. There was no mention of chemotherapy, radiation or any treatment whatsoever. That there was no possible treatment was stated as a fact, and was something we did not even consider questioning. We were sent home two days later to enjoy Scarlett’s first, and apparently last, Christmas. However, before we could even catch our breath, we had to face the CPS worker once again. He called within minutes of us walking in the door at home, asking to come by as soon as possible to inspect our home. He told us he just needed to close the fi le, and we tried to be patient as he asked to see the bedrooms and the bassinet where Scarlett slept. He told us that the case would be marked unfounded, so there should be no problem when I wanted to apply for teaching jobs. He briefly asked how we were doing, and we had little to tell him—we just brought our daughter home to die, and here you are looking for a crime; how do you think we feel?

We tried to use his forced presence to our advantage. We asked for any services or support that might be available from the county to assist us with the now—mounting medical bills, grief and other crisis issues. He said he would get back to us after the holiday; for better or worse, we never heard from him again.

Christmas came. We forced ourselves to smile, trying to forget that we were forcing steroids down her throat to give us “quality time,” or that the toys we had bought for her would never be played with. We tried to create memories while watching her every move for a symptom.

After the holiday weekend, we reconvened at the hospital, this time with the neuro–oncologist we had met the week before. He explained the diagnosis, the rarity, and, for the first time, the options we may have in treatment. It was all dismal: radical surgery, chemo, or both. He knew we had not been presented a surgical option by his colleagues in neurosurgery, but he was not stopping there. He suggested we meet his “friend,” a neurosurgeon at another children’s hospital nearby. We were sent directly there, with biopsy reports and MRI images in hand. We arrived shortly before the surgeon was leaving on vacation.

We waited nervously in the consultation room while the doctor reviewed Scarlett’s MRI. We had no reason to believe we would hear anything different than we had, so we had braced ourselves to hear the horrors all again. In just minutes, he returned and said the most hopeful words I have ever heard: “We have to try.”

Total shock. I had cried a lot in the last few days, but this was the first time I had felt any relief. I made him repeat himself because I was not sure I could trust my first reaction. I had prepared myself for many feelings, but had not considered hope. He saw a chance for Scarlett, and was not going to let her go so easily; in that brief meeting, he saved her life and mine.

He continued on, describing the long and dangerous surgery he was proposing to remove the tumor from Scarlett’s brain—20 hours at least, weeks of intensive care, followed by chemotherapy. It would not be easy for any of us, but it was the only shot we had.

By the end of the week, Scarlett was admitted for observation, supplemental feeding and preparation for surgery. Then, in two 12–hour surgeries in the first weeks of the year, the tumor was removed. Scarlett battled paralysis, blood loss, seizures, a stroke and severe swelling, but came through it all. She was discharged at the end of January, a month after we were told she would die, tumor free.

We chose to continue oncology treatment with the first hospital’s neuro–oncology team, but remained at the second for neurosurgery; this meant some creative scheduling and a lot of driving between the two, but any complications were handled by the doctors. They continue to openly communicate and share information about Scarlett, and we continue to be grateful to both sides for their efforts to work together despite being at separate facilities.

Chemotherapy began in February, and lasted 12 long months. We were in and out of the hospital constantly for her first year, fighting through neutropenia, ventricular–peritoneal (VP) shunt placement (to relieve fluid pressure in the skull) and revisions, dehydration and infection. The effects of chemo made her stop eating on her own, and caused significant damage to her hearing.

As her second birthday approached, and it finally seemed that we were finding a “normal” life, a spot of new tumor growth was found on her routine MRI. She remains in treatment, but continues to make developmental progress; she is learning to walk and talk, use sign language and eat on her own. She is happy, and brings joy to everyone around her. We still have nightmares about those first harrowing days and, as so many other parents who have been through this know, the worrying never ends. Every bruise gets a second look, whether it is on her head, arm or toe. Despite the stress, worry and seemingly never–ending challenges, I will always be grateful for the second opinion that changed Scarlett’s life.