Jennifer Jackson knew something wasn’t right with her little boy. Over the last week and a half she had watched him “have some balance issues” that now seemed to be worsening. At first she blamed it on tiredness, then on the uneven surface of the sand on the beach, but when her two-year-old son Ryan woke up complaining of a headache early one morning, she knew it was time to act.
The Jacksons, to that point, had been a typical, loving family – now living in Mexico, N.Y., Jennifer and her husband, Scott, a forest ranger for Oswego County, had both grown up near Utica and were students at the same high school. They married in 2004 and, in August of 2006, were overjoyed when Ryan was born.
“He was a good baby, a happy baby, very easygoing,” Jennifer said. “He also had this careful, watchful way about him. I always say that he’s an old soul.”
Ryan easily surpassed each milestone, walking at eight months and talking in full sentences by the time he was 2 1/2 years old.
“He was always very healthy, and up to the point where he started to show these strange symptoms, he had only been to the pediatrician for well visits, other than once when he had an ear infection,” Jennifer said.
Now, two weeks shy of Ryan’s third birthday, all that would change.
“We went to a picnic at Delta Lake on a Saturday, and he seemed fine, playing ‘Ring Around the Rosie,’ digging in the sand and playing with his cousins,” Jennifer said. “That Monday he woke up with a headache, so I called the pediatrician and brought him in. By the time we got there he could barely walk.”
Dr. Ellen Schurman checked Ryan for an ear infection and other obvious causes for his symptoms, then ordered blood tests and said he should go in for a CT scan within the next couple of days.
“That was at 10 a.m. At noon, Dr. Schurman called me and said he was scheduled for a CT at Upstate at 3 that day,” Jennifer said. Scott was out of town during this period, fighting a wildfire in Alaska, and had left with the happy news that the child Jennifer was currently five months pregnant with was a girl.
So Jennifer sat with her in-laws and Ryan in the waiting room, awaiting the call to bring him in to get the scan done. Her father-in-law was the one to accompany her son, hours later than scheduled, into the CT room, since she could not be exposed to the radiation.
“Dr. Schurman called us in the waiting room and told us that there was a mass on Ryan’s brain,” Jennifer said. “It was like a nightmare – unreal. She said the surgeon was still in the hospital and she wanted us to schedule surgery.
“My first thought was, ‘It’s a mistake, do an MRI and it will show it isn’t a tumor,” she said.
But it wasn’t a mistake, and the family needed to act quickly.
“Scott wasn’t easily reached in the woods of Alaska,” Jennifer said. “My mother-in-law got on the computer to try to find out how to get a hold of him. Finally she got in touch with someone in Albany who was able to patch her through to him, but the connection was terrible, so she basically said, ‘Your son has a brain tumor. You have to get home.’”
At this point, Ryan was in the Pediatric Intensive Care Unit, scheduled for surgery at 6 a.m.
While Ryan was having surgery, Scott hiked out of the Alaskan wilderness, then took a bush plane from a dirt road airstrip to Fairbanks, Alaska, then hopped commercial flights across the country until he arrived in Rochester. Scott’s captain drove him from the airport to the Syracuse hospital in record time.
Soon after Scott arrived in the waiting room, the family learned that Ryan was out of surgery, after nine hours. Surgeon Dr. Tovar-Spinoza said the tumor had been the size of an orange. He also told them there could be “terrible” complications from the surgery, but that children are amazing.
“There are no words to describe the relief we felt as Ryan came out of anesthesia and little by little showed signs of recovery over that first day post-op,” Jennifer wrote on Ryan’s CaringBridge page. “The moment the sedative was stopped and Ryan was allowed to wake up, he sat up and moved both arms with no problems, taking off his own restraints and tugging at his lines. This is exactly what Dr. Tovar-Spinoza hoped to see. Then, the post-op MRI showed that Dr. Spinoza had achieved a total gross resection of the tumor, which is key in fighting this cancer.”
The tumor was diagnosed to be a malignant grade 3 anaplastic ependymoma, with no preferred treatments for treatment in children under 3 years old. The family was referred to the Proton Beam Radiation team at Mass General Hospital, and was told this posed less risk for brain injury than conventional photon beam, with the same chance of stopping re-growth of the tumor.
“We are extremely grateful to everyone in Boston who helped our family while Ryan underwent radiation,” Jennifer said.
There was more good news as well. On Dec. 4, while Ryan was getting radiation treatment at the proton beam center of Mass General, Ryan’s little sister Alexis was born in the maternity ward on the other side of the hospital.
Jennifer said Ryan was a trooper through the whole process.
“The only time he really questioned what was happening to him was when he had his surgery,” she said. “He asked what the ‘boo-boo’ on the back of his head was from, and I told him the doctors had to take something bad out. He seemed okay with that answer. He knew we would only do what was best for him.”
So their daily life goes on, with cautious optimism felt by Ryan’s parents.
“The recurrence rate for ependymoma is high,” Jennifer said. “So Ryan had MRI scans every four months. At first they were every three months.”
As of May, Ryan was given the “all clear,” as each scan has shown since his surgery and radiation treatment.
Joining the fight
Although going through the process would exhaust even the most energetic of parents, Jennifer has not stopped in her fight against cancer. She is serving on the committee for the Second Annual Upstate New York CureSearch Walk (see sidebar.)
“I don’t know how I could not be involved,” Jennifer said. “I have seen so many kids go through so much that I don’t know if I could live with myself if I didn’t help in the mission to find a cure. CureSearch is so important in this fight. Ryan wouldn’t be here without CureSearch.
CureSearch funds the Children’s Oncology Group which treats 90 percent of children with cancer at over 200 hospitals in the United States including 15 in New York State.
“There is so much not known about pediatric cancer and how to treat it,” Jennifer said. “CureSearch is trying to help find answers through clinical trials and other research.”
She said last year’s walk was at the New York State Fairgrounds, and drew about 200 people.
“We are hoping to get about 800 walkers this year,” she said.
Two-year survivor
Written last month, on Aug. 17, by Jennifer on Ryan’s CaringBridge page:
“Two years ago today was one of the worst days of my life. It is when I was told that my baby boy had a brain tumor. By this time two years ago he was asleep in my arms and we were waiting for the MRI to map out his surgery…I am sure that some of you are thinking, ‘why dwell on this,’ but the thoughts and the fear are always there. On most days it is easy to push them down as I watch my two beautiful children play…but on days like today those feelings rear their ugly head.
“Ryan is doing so well. He is such a happy, relatively well adjusted little boy…an amazingly strong five-year-old, but I have met many amazingly strong warriors the last two years and unfortunately to many of them are no longer with us. I can see no reason why so many children are suffering or have lost their life yet Ryan is doing so well.
“I do know that my amazing boy will start kindergarten in a few weeks and that I will get to see his first soccer game next week…for me that is enough.”
Pediatric cancer facts
The following were reported by Kids v Cancer, a nonprofit dedicated to changing the landscape of pediatric cancer research started by Nancy F. Goodman, who lost her son, Jacob, to brain cancer at 10. For more information about Kids v Cancer visit kidsvcancer.org.
-Incidence of invasive pediatric cancers is up 29 percent in the past 20 years, as cited in “NCI’s Pediatric Cancer Research and Pediatric Cancer-Related Activities,” which showed a rise from 11.8 cases for 100,000 children in 1975 to 14.8 cases per 100,000 children in 2004.
-Each year around 13,500 children are diagnosed with cancer in the US, that’s more than a classroom of kids a day.
-35,000 children are currently in treatment for cancer.
-Some 25 percent of all kids who are diagnosed with cancer die.
-Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
-Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.
-Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.
-The average age of death for a child with cancer is 8.
Source: kidsvcancer.org
