'My parents were scared, but I wasn't'
Local girl battles brain cancer
By Caitlyn Kelleher JOURNAL REPORTER

Rachel and Rebecca Lee

Rachel Lee did not know what a tumor was six months ago when she was sitting at the doctor's office. She and her parents were simply trying to find out what was causing her recurring headaches.

The Lee family had ruled out many of the average causes of headaches when Tylenol and Motrin did not work. The doctors, after a series of visits, had ruled out sinus and ear infections when antibiotics had no effect.

"She just wasn't getting better," said Rachel's mom, Leslie. Rachel, who is 10, was not only suffering from headaches, but also from exhaustion and vomiting.

The doctors finally did a Magnetic Resonance Imaging (MRI), which showed the final diagnosis: an inoperable malignant brain tumor.

"I don't think I was ever scared," Rachel said. "My parents were scared but I wasn't."

Leslie said, "It was a shock, when they pulled us out into the hall to tell us our daughter has a brain tumor."

Rachel was suffering the symptoms of hydrocephalus, a build-up of fluid around the brain.

Rachel (with hat) sits with her family (from left) Jessica, Leslie, Jason, Rebecca and David, after a recent interview. JOURNAL PHOTO/CAITLYN KELLEHER

"I didn't know what a tumor was," she said. "I didn't really react badly."

Now, she has not only learned what a tumor is but she has also learned about community support. The Seventh Annual Ashburnham-Westminster Community Benefit Hockey Game on Saturday, March 29, will benefit the Lee family to help them pay for Rachel's ongoing treatment.

In September 2007, shortly after receiving the diagnosis, Rachel was taken into surgery to remove the fluid and relieve the symptoms.

After the surgery, "she was just happy the headaches were gone," Leslie said.

Now the Ashburnham family is learning to deal with the radiation and the chemotherapy treatments.

"Things change constantly," Leslie said. "We don't go too far out (with planning). We go day to day."

Rachel takes on average 40 pills a day, which include nutritional supplements to help lessen the effects of the chemotherapy and help keep her blood levels even.

"I used to take them one at a time, now I can take them two at a time," she said.

The number of pills she needs increases during the six maintenance cycles of the chemotherapy, which last five days each, with 36 days in between. On those days it includes at least the chemotherapy drugs (four or five pills a day), an antibiotic, and nausea-prevention pills.

The Lees are working with a naturopathic doctor to help combat the side effects of the medicines and to try to take a more natural approach to battling the tumor.

One significant change has been to move to a "very, very, very low-carb diet," and to switch her to more organic foods, Leslie said. The Lees have learned that tumors grow on sugar, so they have adjusted the menu.

Rachel said while the tofu noodles are "weird," the lack of fruit is hard.

"We love fruit," she said.

The fourth-grader said the most difficult part of the treatment are the MRIs.

"You have to stay wicked still," she said. "If we go in the morning it is easier."

Over the last few months, the Lees have learned that mornings are easier because Rachel can, and does, doze off during hour-long procedure. She listens to either Hannah Montana or Rascal Flatts as she lies in the machine that takes pictures of her brain.

Her music tastes and her afternoon energy levels show that she isn't far from her classmates at John R. Briggs. The Lees have tried to limit the amount of school Rachel has missed, but she did miss a long period just before winter break because of anemia - a lack of healthy red blood cells that caused low energy and nausea.

"I love writing," she said. "I'm not a big science person."

Rachel said the attention at school was a little odd when she was first diagnosed, but things have settled into a normal pattern.

"If I'm gone for a day my friends come over for a hug," Rachel said.

Leslie said she has been lucky, because as a stay-at-home mom she's not missing any work and is able to give the needed time and attention to Rachel and her siblings.

"(Dave's) job has been really good about letting him have time off," Leslie said.

The Lee family also includes 12-yearold Jason, 6-year-old Jessica, and 4-yearold Rebecca.

Day-to-day family life has been adjusted in more ways than just accommodating the medical treatments and appointments. Rachel's dad David said going out requires more preparation than there used to be. Now they have to think about bringing not only the medicine and the supplements, but also food for Rachel to eat.

Rachel, who played both basketball and soccer last year, has had to cut down on her participation. She has tried to stay a little bit active, and kept up with her other interests.

"I love to do art," she said.