Kayla is our first born daughter and one of the most precious gifts in our life. Kayla is an amazing 8 year old girl.......loves animals, loves art, rollerskating, dancing, music, going to the beach, and spending time with her twin sisters. If you ask her what she wants to be when she grows up she will tell you she wants to be a horse doctor. Kayla has dreamed of horses since she could say the word horse. It is a dream of ours to be able to send her to school to learn everything about becoming an equine veterinarian. Kayla was a perfectly healthy full term baby and weighed 8 lbs 7 oz at almost 41 weeks. She was born naturally and entered this world with a full head of hair! The nurses couldn't believe how much hair she had! We had her in pigtails at only three months of age! She was raised at home full time with her mom until pre-school.
Twenty-two months later came her sisters, twins Keira and Savannah. From the moment her sisters were born there was a closeness and loving bond between them the three of them. Kayla has always done very well in school. In fact, she has been on the A/B Honor roll every year. Kayla has been blessed to attend a private Christain school which she loves very much and at that school she has already made many life-long friends. Kayla accepted the Lord into her heart at an early age and it clearly shows through her sweet spirit.
Kayla has a true passion for horses and art, and is always doodling horses and ponies in her free time. Many of our family and friends have even remarked that Kayla has an amazing natural talent for creating art!
Kayla has always been quite healthy, with only seasonal allergies and catching a bad cold only a few times, her health has never really been an issue. However, we began to have some concerns in the Fall of 2014 at the start of her 3rd grade year.
After school began, Kayla began having frequent headaches. The headaches came almost every day. We thought it was maybe just the jitters of starting a new school year or maybe just an excuse to get out of class. But she also started complaining about frequent stomach aches and was often tired. During most weeks, Kayla's school was calling home almost every day to report her symptoms. We thought it might be allergies. Severe allergies do run in the family and Kayla had a few seasons where her allergies were really bad, so we thought maybe that was the cause. We began journaling in a notebook to track what she was eating and what symptoms she was having and on which days. We discussed wheat allergies and tried to figure out if perhaps her diet was causing the problems. However, over the past year we had also noticed a dramatic decline in her rate of growth. Her six year old twin sisters had caught up to Kayla and then soon grew taller than her. We had taken her to the pediatrician at the end of the summer and had an x-ray taken of her hand so that the doctor could determine her skeletal age. At that time, the doctor stated that she was about a year behind but wasn't overly concerned. We agreed to revisit the skeletal age situation again in about 6 months.
Nine months had passed and Kayla's symptoms had worsened. Her height hadn't really changed in almost a year and her headaches were coming on stronger almost everyday. She began napping after school, even falling asleep a few times during class and napped often on weekends. We decided it was time to go back to the pediatrician for another x-ray. The doctor also ordered blood work this time. Her skeletal age now showed she was more than a year behind and the lab work came back with some serious red flags.
At that point Kayla's peditrician sent us to see a specialist, an endocriologist www.healthychildren.org. The endocriologist ordered numerous more labs hoping to figure out what might be causing her symptoms. My "mother's intuition" prompted me to ask if it was possible that Kayla could have a brain tumor. To my surprise, the doctor said yes.
After about three weeks of waiting, the lab work results were complete and we met with the endocriologist again. Once again there was cause for concern. Kayla's sodium was extremely high and her chloride was also higher than normal. The doctor and I both agreed that day to go ahead with an MRI of Kayla's brain. It was the evening of May 19, 2015 when we got the call regarding her results. The endocriologist delivered some of the most frightening news that any parent could hear..........Kayla has a brain tumor. The tumor is on her pituitary gland and has disrupted its functions, its communication with her thyroid gland, and is probably to blame for the frequent headaches and Kayla's stunted growth.
Our life since the day of her diagnosis has been chaos. We had to end Kayla's school year early because of the many doctor exams and tests that now had to be performed. We immediately went to see an Oncologist www.cancer.net (cancer doctor) to review her results and come up with a plan for treatment. We decided to take her to the best hospital in the area for children which is over an hour away from our home. Kayla had a PET scan, x-rays, an MRI of her spine, more blood work, and also a scan of her abdomen. The doctors ordered tumor markers as part of her labs to see if perhaps there was cancer elsewhere in her body. If there was, they would take samples of those tumors rather than performing risky brain surgery to get a biopsy to identify the type of tumor.
Kayla's Oncologist also wanted us to see an Opthalmologist, www.aapos.org which is an eye specialist. We weren't sure if her eyes were affected by the brain tumor, but with the tumor on her pituitary gland so close to her optic nerves, the doctor wanted to be sure that there were no other issues. We went to the opthalmologist and she passed her eye exam with flying colors, but after the doctor looked into her eyes closely, he noticed that her optic nerves were swollen. He told us to stay in his office until he could speak to her oncologist to discuss the swelling. After the discussion, we were sent to the ER at the children's hospital where Kayla's oncologist is. We checked into the ER that Tuesday afternoon and waited for the Neurosurgeon to come speak to us. The neurosurgeon explained that they were concerned about papilledema, which is optic disc swelling that is caused by increased intracranial pressure. Kayla was immediately sent for another CT Scan. However, to know for sure if there was dangerous pressure on her brain, they would have to perform neurosurgery. The surgeons decided that they would get a sample of the tumor at that time in order to properly identify what we were dealing with. The oncologist would have to know what type of tumor cell it is in order to properly treat Kayla. We stayed at the hospital overnight and Kayla went into neurosurgery first thing the next morning.
The surgery was a success, the surgeons were able to get a sample of her tumor for biopsy and inserted a small tube for monitoring her intracranial pressure. We spent the following week in the PICU at the children's hospital. Kayla had a few scary moments due to her sodium levels becoming too low and was put on anti-seizure medication. Once the doctors were able to figure out the correct dosing for her medication she improved and started eating, drinking and behaving like herself again. The biospy results took a full week and we met with the Oncologist the day after Kayla was discharged from the hospital.
The biopsy showed that Kayla has a Germinoma cell brain tumor, which is considered cancer. The doctors assured us, however that this is actually good news because a Germinoma tumor reacts very well to the treatments available. With a combination of chemotherapy and radiation, this tumor should melt completely away with very little chance of returning. However, there is a slight chance that she could develop a secondary cancer from the radiation.
Kayla goes into surgery this week to install a chemo port into her chest, which is an internal IV that is easily accessable and means that she won't have to get a new IV every time we go to the hospital for chemotherapy or stuck with needles for taking blood samples. The plan for treatment is chemotherapy for 12 weeks followed by several weeks of radiation. The chemotherapy will take place at the children's hospital and will be for 4 days straight each time, assuming there are no complications. Kayla starts chemo in less than 2 weeks.
We are sharing our story with you in hopes that we can continue to give Kayla the very best treatment and doctors available to her and to cover the astronomical costs that we are incurring. Please share her story on your Facebook page. All your support is appreciated! PLEASE keep lifting Kayla in your thoughts and prayers!
- Teresa Trabulsy
- Teresa Trabulsy
- Bree Emery
- Teresa Trabulsy
- Daniel Creech
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