When Your Child Has a Brain Tumour PART II

When Alana Philips found out her then one-year-old had childhood cancer, her world crumbled around her. But this ever-positive mum and her brave little one made it through the darkest of days with family by their side.

WORDS CHRISTEL GERALYN GOMES

On the 30 September 2014, one-year-old Tillery had been diagnosed with a brain tumour the size of a man’s large fist, at a hospital in East Tennessee. The very next day, Alana and Joe, Tillery’s parents, travelled to Cincinnati, Ohio, six hours from home, for treatment from one of America’s top hospitals.
    
On 2 October, Tillery went in for a 15-hour surgery to biopsy the tumour and remove as much as possible. “The neurosurgeon was only able to safely remove 10 percent of her tumour because its placement was in a tricky location and the tumour was very vascular (bloody). It took about three weeks to get the pathology back for an official diagnosis,” said Alana.
    
Because Tillery’s first paediatricians had dismissed Alana’s early observations that something was wrong with her daughter, it was likely that the tumour had been growing for seven to nine months before it was diagnosed. Luckily for Tillery, her age worked to her advantage.
    
“Because Tillery still had her soft spot, her head grew to accommodate the tumour, which means she didn’t have as severe of symptoms as she might have had if she was older and her skull was fused,” said Alana. However, this also meant that Tillery’s head growth has caused the development of some fluid pockets in her head called hydrocephalus. “The fluid pockets caused increased pressure in her head so to relieve that, a VP shunt was put in to drain the cerebral spinal fluid (CSF) into her abdomen,” said Mum.

A Family Apart
Since Cincinnati was six hours from home, Alana thought it best to stay at the Ronald McDonald House. What was hoped to be a short visit turned into a long seven-month stay.

Tillery woke one night screaming and doctors soon found that she had developed a large blood clot in her brain, putting her at a high risk
for a stroke. She was then put on blood thinners.

Diagnosis and Treatment
In the meantime, the pathology of her initial biopsy came back and it was determined that the treatment plan was to do a 10-week cycle of weekly chemotherapy and then go on monthly doses for 12 months. Alana decided to stay in Cincinnati for the 10-week cycle. “We moved into the Ronald McDonald House and started a routine. My husband, Joe, would come up for a few days each week while my mum stayed at home with my son, Luke. Then, my parents would usually come up for a few days also. Luke came up about once a month but early on, it was hard to have him there because Tillery couldn’t play much with him and it seemed easier to shelter him from the hospital life.”

Her Bleeding Brain
Everything went as smoothly as could be hoped for until the evening of 15 November 2014. “I had laid Tillery on the bed to change her diaper and then turned to get her medicines. I grabbed the needle and vial of blood thinner and turned around just in time to see her fall from the bed and hit her head on the wood floor. I screamed as she started to cry. Joe was giving Luke a bath and he came out of the bathroom right as Tillery’s eyes rolled back in her head and she stopped crying. She had lost consciousness. Joe grabbed her and ran out the door to take her to the emergency room,” recalls Alana.
    
“The fall caused a bleed in her brain and because of the blood thinners, she was not clotting. They were going to have to do surgery to stop the bleeding but they felt that it wasn’t safe to do surgery with the blood thinner in her system so they wanted to wait until morning. While they waited, the bleeding was getting worse and she was non-responsive on her left side and her pupils were of different sizes. They determined that if they didn’t take her into surgery, they would lose her so even though there was a very high risk of her bleeding out, surgery had to happen.”

“The Worst Night of My Life”
“Joe and I sat in the waiting room alone at midnight, while we waited to see if Tillery made it through the surgery. It was the worst night of my life and definitely the hardest part of the entire surgery. I’m not sure I could have gone on if she had not pulled through,” said Alana.
    
Thankfully, Tillery made it. The surgeons managed to get most of the blood out and put a drain in to allow any further bleeding to be externalised. “They had to remove the bone flap on the right side of her head to allow for swelling in her brain. Tillery’s own bone would be stored in a freezer and replaced in a few months. Once she was able to be discharged, she would have a helmet to wear to protect her brain in the event of a fall. Her blood thinners had to be terminated so they were having to keep an eye on the blood clot area as well and make sure that it did not grow. She was in for almost two weeks this stay and it was a very hard time.”

Chemo Resumes
Of course, the chemotherapy had to be put on hold while Tillery recovered from surgery. Surgery to replace the bone flap was scheduled for January 2015. In February, Tillery resumed the last eight doses of weekly chemotherapy, and they went home in April. “After being a split family and living six hours from home, we had finally made it back.”
    
The brief respite from anxiety was short-lived, as in June, an MRI showed that the chemotherapy was no longer working. “The tumour had grown. We were devastated,” said Alana. Tillery was put on a new weekly drug given to her at a children’s hospital closer to home.

In the months that followed, the family battled body and brain infections, spiking fevers, vomiting, dehydration and further complications.

The good news was, that through it all, Tillery’s tumour had remained stable and her replaced bone flap had over time been reabsorbed into her head. “Her skull was sunken in on that side and the bone piece was putting pressure on her brain. A synthetic piece was made to match her bone and was placed in her head. She now has a round head for the first time in over a year,” said Alana.

The Plan
Today, Tillery has a positive long-term prognosis. “She currently receives weekly doses of a chemotherapy drug with minimal side effects. It’s working. She will continue on this until the end of 2016. In early 2017, she will have another major brain surgery to remove more of the tumour. After that, the plan is to do scans every three months and if things remain stable, she will be off all therapy. She will always have some of the mass in her head so she will always be considered an oncology patient. She will always have scans to track the size of the tumour and will always be followed by a neurosurgeon. As many brain tumour patients do not have a good long-term prognosis, Tillery’s long life of scans and appointments is a blessing,” says ever-positive Alana.
    
When asked what helped them live through what seems worse than most people’s worst nightmares, Alana said simply, “our faith and our family’s love”.

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