On March 4, 2019 16 year old Kaylee Rabideau, along with her mother Jessica Stevens and step father Josh Stevens will board a plane and head to Houston Texas for the second time. This will be the trip where Kaylee will undergo a craniotomy and complete resection and removal of a pineal region cyst/tumor and a possible resection and removal or treatment of a second tumor behind her right eye.
How did she get to this point you may ask? Here is a little backstory.
In 2007 at the age of five years old, Kaylee started experiencing headaches. She was referred to UVM in Burlington, Vermont to the Neurologist. At that time they suspected it could possibly be her vision so an eye exam was made and glasses were given.
The headaches continued through her childhood and into her teenage years. By the age of 14, the headaches had become debilitating and were now coming with stroke-like symptoms (face drooping, slurring words, etc.)
Her parents were terrified. The pain had gotten so severe she would sometimes scream from the bathroom because she couldn’t get off of the floor or out of the shower. She was passing out, her legs would give way from underneath her, she was dizzy, experiencing extreme visual changes, sometimes losing her vision completely for brief moments, sleeping 18 hours a day or sometimes not at all, ringing in her ears, and suffering from constant head pressure. She just could not function through her daily life.
A call was made to her pediatrician who got her right in for an appointment. She was referred to UVM pediatric neurology who also got her in for an appointment right away. During this appointment, the neurologist noticed she had ptosis (dropping eye) weakened reflexes on one side and nystagmus (involuntary movements of the eye). Her thoughts at that time were that she was having some sort of seizures so an MRI and EEG were ordered.
On July 14, 2016 an MRI was done. On July 15 the phone rang. The caller ID on her mothers cell phone indicated the call was from Burlington. She took a deep breath and answered the call. It was the neurologist from UVM explaining that she believed she now knew what the cause of Kaylee's symptoms was. Her mother quickly tried to mentally prepare herself for what she was about to say.
Her next statement was that Kaylee had a sizable cyst of the pineal region measuring 15x14x11mm and she would now need to see a neurosurgeon. She also explained that the cyst is deep within her brain and is causing mass effect on the tectum.
The quadrigeminal plate, also known as the tectal plate or tectum, is the portion of the midbrain tectum upon which the superior and inferior colliculi sit. The tectum is the dorsal portion of the midbrain (brainstem) and is derived in embryonic development from the alar plate of the neural tube. Masses in the region of the tectum can cause obstruction of the cerebral aqueduct resulting in obstructive hydrocephalus). Her mother was devastated and could do nothing but sit in her car and sob, but for her daughter, she needed to be strong, as strong as she was.
When they saw the neurosurgeon, she explained that typically these cysts don't cause symptoms unless they are in fact causing hydrocephalus (too much fluid in the brain).
Through much of her own research, her mother had come to learn that this is in fact not correct, they can cause debilitating symptoms, especially at larger sizes but symptoms don’t always correlate with size. She also has learned that the reason this is thought to be the case is because not much about this is taught in medical school and what is taught is old knowledge. There they were, back at square one.
They continued to frequently travel to Vermont where Kaylee and her mother would explain her symptoms were worsening every time. She would then be given another medication to try. This would make number nine.
At one of their appointments before giving up and thinking no one would be able to help her, they explained that Kaylee was now sleeping 18 hours a day, missing school and they were now were dealing with a CPS hotline for educational neglect because of it. The response they were given was that it sounded like Kaylee was depressed and we should start her on medication for depression.
Her mother thought she probably is a little depressed. She couldn’t function and had little quality of life most days. Again, a call to her pediatrician was made from the parking garage explaining what had just happened. He assured her he would help in any way he could. To start he would try a medication to treat her pain and control the headaches as well as referring her to a neurosurgeon at Albany Med.
Once at the appointment in Albany, the Neurosurgeon explained that yes, although sometimes these cysts do not cause symptoms, they certainly can. He described it as basically a foreign body in your brain. Unfortunately, treatment would only be done in the case of hydrocephalus. Back at square one again.
They continued to try and treat her pain and other symptoms with no luck. Finally, her symptoms had gotten so bad that she was losing vision, optic nerves and disks are now tilted, the pain was excruciating, she was struggling with memory and speech problems, the headaches were there every day, and still all the other previous symptoms as well. This brought her back to the pediatrician who requested a new MRI be done.
In the meantime through this whole process, her mother Jessica had already been doing as much research as she could on her condition, reading case study after case study, medical documents, and anything else she could find. She came across the blog of a young lady who also suffered as Kaylee does. She stayed up most of the night reading the entire blog. It was like Kaylee had written it.
Through her blog, she mentioned a surgeon and a Facebook support group. Jessica immediately went and found that group. She started reading the stories of others, like Kaylee, who were living the same nightmare. She saw the same surgeon mentioned in the blog and who was also mentioned in this group many, many times, Dr. Kim.
She learned that he was one of a handful surgeons in the US currently who treat these types of cysts/tumors. She finally decided it was time to reach out.
After speaking with his office they were instructed to send all of her medical records and scans for him to review. From there he would determine whether he would see her or not. On October 31 the call came that he would in fact like to schedule an appointment to see her. The first sigh of relief for her and her family. Someone who may be able to help her, because as much her family wanted to do more for her, there was nothing she could do other than what she was already doing. Kaylee was scheduled for December 11. They just knew they were headed in the right direction. This is what he does, this is one of his areas of expertise. He is the director of the Neuroscience Institute.
A new MRI was completed on Friday, November 23. They anxiously waited for those results.
On Monday, November 26, an email from her patient portal was received that a new test result had been posted. Jessica logged in and with Kaylee, she began to read.
Her cyst was now 17x17x15mm, and she now had brain lesions in two parts of her brain. Again, devastation.
Jessica couldn’t help but cry, reach out to anyone who would listen and ask for prayers. Kaylee had a short cry with her sister and then they sat down and watched a Christmas movie together. Jessica remembers thinking, “wow what a strong child I have.”
It felt like December 11 couldn’t get here fast enough.
On December 10, Kaylee, her mother and step father Josh boarded a plane and off to Houston they went.
On December 11 it was finally time to see Dr. Kim, the surgeon they had read so much about.
They felt as though they were waiting to meet a movie star.
First, they saw his colleague Dr. Hsu. They went over every little detail about symptoms, medications she has tried and any tests she had done. He briefly left the room and returned with Dr. Kim, who shook their hands and sat down.
He gave an entire rundown of everything they had discussed with Dr. Hsu. He asked many questions including if when watching the webinar, she thought it was describing her perfectly and they all responded, “yes!”
He then went on to say that he absolutely believed it’s causing her symptoms as it is large and recommended surgery. He also told them after looking at her scans that he believed she may have a tumor behind her right eye, a cavernous sinus menginoma. Jessica grabbed Josh’s hand and tried to hold back the tears.
Before our appointment ended he explained she will need a lumbar puncture which she could go back home rather than doing it there and having to travel back home right after as we were flying home the next day.
She will also have another MRI to confirm or rule out the tumor behind her eye when they return for surgery. They left his office feeling good, yet emotional, and relieved but nervous. It's a lot for them and for her, although she is holding strong.
From Jessica: “I admire this child. I am proud that after all she has had to live through she still manages to hold strong and keep her grades up in school, even through the pain she faces every day. We will need to be in Houston from March 4 until at least March 20 before she is cleared to fly home where her recovery will continue. I hope I didn’t miss anything and I hope this is not too confusing. Continue to pray. She will turn 17 on March 31 and will spend her birthday still in recovery from a brain operation. We are seeking help from anyone willing. All funds will be used strictly for any medical and travel costs outside of what we will pay or what our insurance covers. Please help if you can. This beautiful child is destined to do amazing things as the aspiring makeup artist she is and deserves a better quality of life. Some people may think I am crazy and overreacting, and to those people, I invite you to spend a day in her life, our lives for that matter to see for yourself the suffering. I also hope to raise awareness that these things do cause problems and essentially take your life away though you are still living, provide information and give support to anyone going through this. Please help us give Kaylee a life worth living. She is a daughter, sister, granddaughter, great-granddaughter, niece, great niece, and cousin and she deserves the best quality of life we together can give her! 11 years of pain is long enough. Thank you so much, from our entire family. It takes a village to raise a child.”
An all day fundraiser will be held at Raquette River Brewing, 11 Balsam St Tupper Lake on February 16, which will include Chinese auction with many raffle items, a cake walk, and a Slingshot Acoustic show from 6-9pm! $1 from each pint sold that day will be donated to Kaylee. There is also GoFundMe page set up for Kaylee and her Family. All donations will help the family with out of pocket medical expenses, and travel and lodging costs as they are also responsible for 20% of the surgery cost as well as out of network deductibles.
If you want to learn more about Kaylee's condition here is a link: http://neuro.memorialhermann.org/pineal-cysts/
If you would like to donate to Kaylee’s GoFundMe, the link is: https://www.gofundme.com/kaylee-needs-brain-surgery.