When Your Child Has a Brain Tumour PART 1

Nothing can prepare a mother for the news that her baby girl has a tumour growing in the brain. For Alana Philips, finding out that her then one-year-old had childhood cancer was devastating.

WORDS CHRISTEL GERALYN GOMES

Tillery was born a perfect, healthy baby, from the tiny, soft hair on her head, down to her adorable baby toes. “She was a beautiful, good baby who slept and ate well. She was a happy baby for most of the first year,” says Alana, Tillery’s mother. It was only around the eight-month mark that Alana noticed that her beautiful baby girl wasn’t hitting some of the expected milestones.
    
“She wasn’t rolling over and she didn’t like straightening her legs. She could sit on her own but she could not sit herself up — we had to put her in a sitting position. She could crawl but wouldn’t go farther than she had to… she also wasn’t interested in exploring,” recalls Alana.
    
When expert advice was sought, Tillery’s doctor was dismissive of Alana’s worries, saying things ranging from “all kids develop differently” to “she’s just lazy”. Frustrated, Alana sought second, and later, third opinions over the course of a number of months.

Something was Very Wrong
There’s something to be said about a mother’s intuition, because finally, Alana found a paediatrician — Dr Matthew Good from the University of Tennessee Medical center, who shared her concerns; “He asked a lot of questions that no one had previously asked and checked her head circumference, which had never been done before. Her head size was off the charts for her body size and that raised a red flag with him. He had his office help me with referrals to developmental paediatricians, neurologists, and genetics specialists. It takes time to get appointments scheduled and by her fifteenth-month checkup, developmentally things were getting worse. She was unable to sit without assistance and she would barely crawl at all. She cried often and had a hard time being soothed. She seemed to be in pain but we did not know why,” said Alana.
    
A physical therapist was soon sent to Alana’s house in East Tennessee, USA, and she raised the red flag with Tillery’s paediatrician that something neurological was off. Tillery’s MRI was moved up by two weeks to the next day.

“That night, as we lay in our bed, tears streamed down my face.
I knew that the next morning would bring answers and
I was terrified of those answers,” said Alana.

The Brain Scan
At the hospital, “We were told that Tillery’s scan would take about an hour and a half. It was exactly an hour and a half later that we were called back to a small waiting room to wait to see the doctor. Instead, our paediatrician came to the door… with a box of tissues. Being naive at the time, I was initially excited about seeing our paediatrician who was obviously there because he was going above and beyond to make us feel comfortable. When I noticed the tissues and his sombre look, I immediately began to shake. I knew that this was not just a social visit to put our fears to rest. He was here to deliver some news that was so big, it wasn’t right to have a stranger say it,” Alana recalls. Dr Good’s next words changed their lives forever. “Tillery has a brain tumour,” he said.

Breathless Tears
Alana’s world fell out from under her. “So many emotions flooded through that room. It became the smallest room I have ever been in. Dr Good said a few more things but I can’t begin to remember what. Joe and I cried and hugged and gripped hands so tightly it was as though we were holding each other onto the earth. Even scarier than those initial words was when he told us that she was now having a scan done of her spine to see if anything had spread,” said Alana.
    
“What? How could something have spread? We just found out about it. What was he saying? What was happening?”

Tillery was to be admitted to the Paediatric Intensive Care Unit immediately and Alana and her husband would get more information as the doctors looked at her scans and came up with a plan.

 

Alana’s long journey had just begun. “Dr Good left us in the world’s smallest room trying to figure out how we start. How do you tell people? Who do you call?” she says. “We had to call my mum. She was at our house and was planning to head back to her house unless we were going to run late and needed her to pick Luke up from school. I so badly wanted to just ask her to pick him up but not have to say why. I was about to floor her just as Dr Good had done to us. I was going to shatter so much with so little information. Even worse, she was alone. No one to hold her onto the Earth. And I knew I could not stay on the phone long. I knew there would be questions I could not answer and I knew I could not handle even hearing any of them. I just called and told her and said as soon as we knew more, I’d let her know. I hoped that she would be able to get in touch with my dad or her sisters when we hung up and that they could provide comfort. I was too numb for anything.”

Comfort in Prayer
For Alana, there was only one place to turn at a time like this — to prayer. “Joe and I prayed together. We prayed on our own and we prayed as a couple. We just asked God to be with our daughter at that very moment in the second scan. We asked that He would be with us as we began to take steps forward with this new information.”
    
Finally, Alana and Joe were allowed to see Tillery, who was groggy from the anaesthesia. “I wanted to pick her up and hold her as close as I could. She was different than when we left her. More fragile seeming.”
    
In the PICU, a neurosurgeon came to speak with them. As one would imagine, the experience was disorienting. “He said a lot of scary things. The scariest thing was when he, very nonchalantly, said, ‘They told you about how big it is, right?’ and then he made a fist with his giant man hand and said, ‘It’s about this size’,” Alana recalls.
    
No one had yet given the pair much information, so this was news. Alana says, “I don’t know what I expected but I was thinking of a small pebble in her head. Something you could pull out with tweezers… But a giant man fist?! That seemed impossible. Her head was just a little bigger than that. How in the world was there room for her brain and this giant mass? Then I remembered… there wasn’t. She has balance issues, she cries all the time, she’s developmentally behind. My child has run out of room!”

To be continued…

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