Catching up: Community support brings joy to family of Lemont girl fighting brain tumor

Posted Dec 27, 2011 @ 01:17 PM

What started out as bad headaches for young Ellie Cuiching in January turned out to be a brain tumor that covered the right half of her brain.

Ellies parents, Kyle and David, hoped and prayed for their then 6-year-old daughter when she went into surgery on Jan. 5 at Childrens Memorial Hospital. The surgery lasted nine hours, although doctors were only able to remove about half the tumor.

(The doctor) showed us the scans of Ellies brain and the tumor covered the right half of her brain and was pushing the left side (of her brain), Kyle said earlier this year. It was filling with ventricular fluids. If we had waited any longer (to take her to the doctor) her brain would have filled with fluid.

One neurosurgeon that operated on Ellie said it was the largest tumor on which he had ever operated.

A few days after the surgery, Ellie was in surgery again, and the doctors were able to remove 98 percent of the tumor.

That 2 percent left was attached to critical parts of her brain, Kyle said.

Scars from her surgery were mostly hidden beneath her hair but the right side of her face was paralyzed due to a seizure.

Behaviorally, Kyle said her daughters personality has changed because of the anti-seizure medication.

She used to be the sweetest and kindest, most enjoyable child and its very hard to get a hug from her now, Kyle said in January.

Due to the enormous medical bills, the Cuiching family held a fundraiser on Feb. 11, Hearts & Love for Ellie that was hosted at …this must be The Place.

The fundraiser for Ellie raised around $30,000 to help pay for the first of many bills her parents will receive.

We have a long way to go, but it was amazing the support Lemont, friends and family gave us, Kyle said in February. It was very uplifting.

Ellie continues the fight for her life

Eleven months after being diagnosed, Ellie Cuiching, now 7, is still fighting for her life.

After her second surgery in February, Ellie began a 60-week chemotherapy treatment. Ellies mom, Kyle, said the chemotherapy did not work and at the beginning of September the tumor was growing.

Initially it was like a cantaloupe, Kyle said. In September it was the size of a lime. People looked at the scan and said its a miracle she is walking and talking with that size tumor.

On Sept. 27, the Cuiching family went in for a third surgery, and Ellie is now back on chemotherapy treatments. A portion of the tumor remains wrapped around an artery and if removed, could cause her to have a stroke. Another portion remains on her brain stem that cant be removed because it could cause more damage.

This is lifelong, Kyle said. Who knows how long her life will actually be. I dont know her life expectancy. (The tumor) is so rare and shes so young to have this tumor.

Doctors told Kyle this size tumor is normally seen in people in their teens or older.

Kyle said Ellie is beginning to get back some function and feeling in her face since the seizure in January.

Kyle said Ellie is going to Oakwood School for three hours a day, going to speech therapy and having a tutor come to the house a couple times a week.

Ellie has lost some of her memory and has difficulty learning, she added.

To help take their minds off Ellies tumor and have a little vacation, the Make-A-Wish Foundation is sending the family on a DreamWorks Royal Caribbean cruise in January 2012.

Kyle continues to look for fundraisers or any help she can receive because the medical bills continue to pile up as the tumor will always be present.

We know we will hit our lifetime max with the insurance company before her lifetime is up, Kyle said. Its a big challenge keeping afloat when your child could be dying.

In the future, Ellie might be in a wheelchair depending on how the doctors can remove and control the brain tumor. Kyle said radiation could be in the future if chemotherapy continues not to work.

I want to give her everything. I hope and pray she will have a long life, Kyle added.

The Cuiching family still has The Ellie Fund set up and is accepting any donations to help pay for medical bills. The organization, One for the Kids will be hosting a fundraiser for Ellie on April 28th in the Hyatt Lodge in Oak Brook. For more information visit www.oneforthekids.org.

Kyle also blogs at www.loveforellie.com, where she updates readers on Ellies condition.