Cancer Diagnosis Keeping Orange Family of Five Apart
Ellie and her Father use and iPad to communicate with her mother, Carly.
A young central Virginia couple and their kids have only had the chance to spend one day together as a whole family. A cancer diagnosis is keeping them hundreds of miles apart, but love and technology are still keeping them close.
Earlier this year, two-year-old Ellie Blaine was diagnosed with cancer. In January, around her second birthday, Ellie started getting sick. After spending a week at the University of Virginia Children's Hospital, she was diagnosed with pineoblastoma.
"Basically she has a brain tumor that is right on her pineal gland and it has metastasized into her spinal fluid as well, so it's a form of brain cancer," said Carly Blaine, Ellie's mother.
Carly said there is not a lot of research on pineoblastoma, so they had little information about their daughter's condition.
"I did not Google. My husband didn't Google. We just trusted that God was going to lead us in the right direction to do what we had to do," Carly said. "The doctors led us in the right direction. Doors were opened and we just went forward from there."
Carly was just about to give birth to her third child when her husband, Richard, and Ellie moved from their Orange County home to Memphis for treatment at St. Jude's Children's Research Hospital.
They had to be apart before they were ever fully together as a family of five.
"It's been hard, but we know the best thing for our family is the best thing for Ellie... but it's been hard being a single parent with two kids," Carly said. "It's hard, but I think I have an amazing husband who does a fantastic job."
Richard says he's struggled with the move as well.
"Being away from home, I miss my son and my wife, and my daughter," he said.
Richard and Carly both say that their first priority was making sure they did what's best for Ellie.
"The first thing was making sure we got the treatment right for her, and then we knew what we had to do otherwise and if that meant splitting our family up for a little while then we knew that the Lord would get us through that," Richard said.
When Carly gave birth to their third child, Sarah-Grace, in late March, a doctor let Ellie and Richard take a quick trip back home.
"That was a complete surprise," Carly said.
The family was together for just a day, and it was the first and only time they've all been together thus far. Now, the new normal for the Blaine family is communication on iPads from hundreds of miles away.
"I see you mommy," Ellie said during one such conversation "I see you Ellie," said Carly. "Give me your silly face."
Carly can now be a part of her daughter's day-to-day life - at least through a screen.
"I tell her 'I love you. I miss you. See you soon.' She usually shows me whatever toys she's gotten in the mail that day," said Carly. "But yea, that part, not being able to hold her and just make sure she's ok is hard." she said.
Social media has kept friends, family, and even complete strangers connected and updated on Ellie's status.
"When we're staying at the PICU at UVA one night, I couldn't sleep so I said 'I'll just start writing again,'" Carly said. "And that night I blogged it and posted it on Facebook and from there it took off," she said. "Without the Facebook or the blog nobody would know our story, besides our church family and our friends, but we have people all over the country, from different countries, that get in touch with us."
"It's amazing what that's been able to do for us," she added.
People have donated the iPads the family uses, hosted bake sales and lemonade stands, and sold bracelets, candy, and T-shirts. "We thought we'd sell about 100 T-shirts to friends and family and it's over 1,000 T-shirts that we've sold," Carly said.
A local preschool hosted a race to raise money for St. Jude's and a local church matched their fundraising.
At the Old Navy in the Barracks Road Shopping Center, where Richard is a manager, employees have raised thousands of dollars for the Blaine family. There is a stand with information and a donation collection container in the front of the store.
"We haven't had to do much, we have amazing people surrounding us," Carly said.
But it's still been a tough journey.
"I think any parent knows they'd do anything for their kids. Before I made the decision to come down here... It's not just a simple choice. St. Jude's pays for everything. They don't charge for their hospitalization, for their housing, for their treatment, and a lot of people could look at that and say 'well that's the easy choice' but it's really not," Richard said.
"We had to choose to move 14 hours away from our family. And above that, even, you want to make sure you get the best treatment for your child. Whether it's free or you have to pay however amount of money for it," Richard said.
The family's biggest medical expenses are Ellie's ER visit and her stay at UVA hospital. St. Jude's is able to avoid charging the parents of sick children by billing the family's insurance, and covering the difference through donations.
"Right now our biggest expense is Richard not working, so we don't have his paycheck. My maternity leave will run out and then we'll be out of my paycheck for a little bit and that's just the biggest expense: just day-to-day living expenses, travel back and forth once I go there and he comes back home," Carly said.
Even though Ellie is undergoing multiple surgeries and chemotherapy, she's stayed upbeat.
"She's been really good since most of her treatments. She's gotten a lot more quiet since she's been here. She's not as talkative, at least when other people are around, but she still has a great spirit about her," said Richard.
"She is just - she's amazing to watch. All the doctors love her. They're shocked how well she's going through her treatment," Richard said. "She amazes me every day. She's certainly a hero to me."
In fact, the family has coined a new term "princess strong," and have even created a logo merging the letter "p" in the word princess and a cross as the "t" in strong.
"Ellie loves princesses and we're Christians so, when she first started getting sick we really depended on our faith," Richard said. "Our 'princess strong' is really how we incorporated our cross for Christ into a princess, which Ellie loves, so we're princess strong."
Now the family is counting down the days until they can be together again. On Tuesday Ellie's mom and two siblings will travel from their home in Orange to Memphis to visit her. It will be the second time they've ever been all together as a family.
On Wednesday , Ellie has her next MRI appointment. So far, about 80 percent of her tumor has been removed and the MRI will show how much of it is still left, which will help doctors determine the next steps for her care.
"So Wednesday is a very important day," Carly said.
And despite all the family has been through, baby Sarah-Grace sleeps well and has a sweet temperament, 4-year-old Noah is talkative and playful, Ellie is the cute spunky two-year-old her parents have always known, and Carly and Richard have maintained a positive attitude.
"We're going to be really excited to see them," Richard said. "That's also my wife's birthday so now I don't have to buy her anything, because she going to come see us for her birthday," he joked.
But when asked what he would tell his daughter when she's old enough to understand this situation, Richard choked up.
"I don't think I would be able to talk," he said. "If she only knew how many people she was helping by being so strong and by carrying the attitude she does, by going through this so well. I would want her to know that she's helping a lot of people through this - including her parents," he said.
Carly held back tears while talking about her daughter too.
"She's an amazing person. She's extremely blessed. She was chosen to touch other people's lives and she does it every day and I'm extremely proud of her."
Friday, August 1 2014 11:51 AM EDT2014-08-01 15:51:45 GMT
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