“After about a week of monitoring, it was determined that she would have brain surgery to relieve the pressure that the hydrocephalus was causing. Her neurosurgeon performed a very new procedure they were performing at Children’s Hospital called an endoscopic third ventriculostomy with choroid plexus cauterization. Basically, they went in and punctured a hole in the bottom of her brain to drain the fluid and cauterized the area that produces spinal fluid so her body would not produce so much.

“In the past, placing a shunt inside her was the only option to treat hydrocephalus, but this new procedure seemed more promising. The hope would be to lessen the number of surgeries she would have during her life.

“Everything seemed to be going well until about four months later, when the procedure failed and had to be repeated. Since that time, she has done amazing despite the obstacles. She even walks independently, which is one of the things that many individuals with spina bifida are not able to do.

“On March 26, Kinlee had a routine appointment with her urologist to have an ultrasound to examine the function of her kidneys and bladder due to possible damage caused from the spina bifida.

“I remember the day clearly because it was spring break week for my kindergartener, and I had taken the day off so we could do some fun stuff after her sister’s appointment. But it turned out to be no ordinary day and clearly not just a routine appointment.

“My heart dropped the moment the ultrasound technician said, ‘Let me get the doctor.’ As a mother, you know immediately that something is wrong. Never once had a doctor been brought in during any of her previous ultrasounds.

“So the doctor came in and said there was a mass in her abdomen. We were immediately sent to imaging, where Kinlee was sedated for a CT scan.

“Afterwards, we were sent to the oncology clinic at Children’s Hospital. We met with doctors and set up another CT scan for the following week. We were told that day there was no way to confirm what the mass was until a biopsy was done.

“The biopsy was going to be very dangerous. We were told that what appeared to be a tumor was wrapped around her aorta and the major vessels that supply her intestines and many of her organs. The tumor sits in the very back of her abdomen so the pancreas had to be picked up and moved to even get a biopsy.

“She had the biopsy on April 6, and we were admitted to the hospital. We were told that it appeared to be neuroblastoma, the third most common type of childhood cancer, but the biopsy would confirm. On April 10, we got the call that no parent ever wants. It was confirmed to be cancer, and out of the five lymph nodes removed, three were positive. “The following week, we were set up for a bone marrow biopsy. The day after that, Kinlee received an injection of radioactive contrast and had a MIBG scan 24 hours later to see if there was cancer anywhere else in her body. Both of these tests showed no other cancer in her body. The tumor was considered to be localized. However, surgery was still not an option because of the location of it.

“We had several meetings with oncologists and were offered the option to participate in a study. This study placed Kinlee in a category to just monitor the tumor. Studies had revealed that there were several cases in children where this type of cancer would go away. Her oncologist said it was one of the few human cancers that can have spontaneous regression and just disappear without treatment.

“We were both excited and nervous for this. She had to be enrolled before she reached 18 months in age. We had been on the study for about a month when I got a call at work that one of the biopsies revealed too many chromosomes and that they didn’t feel her tumor would go away and could possibly grow. I was asked if we could come in that week to have a port placed and start chemotherapy. On May 21, we had surgery to place the port and started chemo immediately.

“We were initially told that she would get only two rounds of chemo and then monitor the neuroblastoma to see if it would go away on it’s own. Then, after discussing her case, her doctor decided she would need to start out with four rounds.

“She receives chemotherapy every 21 days. For someone her age, chemotherapy has to be done inpatient. Once she is released from the hospital, she has multiple appointments each week for lab work.

“Kinlee has finished the four rounds of chemotherapy. On Aug. 20 and 21, she had another CT scan and MIBG scan. We were so hopeful that this would be the end of her battle with cancer and that she could stop this torturous process on her little body.

“However, the scans showed that the tumor had only shrank 5 to 10 percent. The MIBG scan did show that it seemed to be a little less active than the initial scan. Her doctors were as upset and shocked as we were. We were told then that we had three options: stop the chemo, which they didn’t advise; complete four more rounds of chemotherapy that are the same as the first four; or start more intense drugs that would be much harder on her.

“Her oncologists felt like currently the best option is to continue with the four more rounds and scan again before moving on to the harder medicines. If these next four rounds do not have successful results, then she will have another biopsy to see if the cancer has mutated into something different. She has just finished round five.