Friday, August 21, 2015 our four month old daughter, Kaelyn, became very lethargic and started throwing up her bottles. Mommy checked her temperature, gave her gas drops, tried different, formulas, etc., nothing helped. This continued into the evening of Saturday, August 22nd, when Kaelyn had an especially bad vomiting and choking episode. It disturbed Mommy so much that she drove her to an ER minutes from their home. Mommy told the ER staff and doctors what had been happening over the past 48 hours, as well as what had occurred at Kaelyn's four month well visit. At that visit, they received a referral for an opthamologist because Kaelyn didn't want to look left. As well as a referral for a craniofacial specialist because of the lumps that had formed on her head days before this appointment. Kaelyn was able to see the eye doctor that week, and he said her eyes were healthy, but misaligning, causing her to avoid looking that way, and that she would grow out of it. However, the earliest appointment available for the craniofacial specialist was September 16th. Given this information, the ER doctor checked her for dehydration and did an x-ray of her chest to check for aspiration. They said she was fine, that it was just gas, and sent Mommy home at 2am that morning.
Mommy put Kaelyn to bed and went to sleep herself. Kaelyn slept through the entire night despite having nothing to eat since 8pm or so the following evening. Mommy woke up around 6:30am Sunday, August 23rd, and tried to get Kaelyn to eat again, and she wouldn't. She still had no fever, and no symptoms other than lethargy. Daddy came home from his night shift at the hospital around 7:30am and was able to get Kaelyn to eat a little. Mommy went to sleep, and Daddy followed shortly after. Mommy woke up again around 10:30am and woke Kaelyn up and she still didn't want to eat. Mommy called Cook Children's, a local children’s hospital, and based on everything she told them, they said to bring Kaelyn in within an hour.
Mommy and Daddy got her to Cook Children’s ER right away. Based on the same medical history Mommy had given the other hospital 12 hours earlier, the first thing they ordered was a CT. Within an hour the results were back — Kaelyn had a mass in her brain that was 4cm by 3cm by 2cm. It had caused her plates to be way too far apart, and there was massive swelling and fluid on her brain. This was most likely causing pressure, and therefore, the vomiting. Her head had also grown 3cm in the past two weeks (it was 94th percentile at her four month well visit). They admitted her to the hospital, sedated her, intubated her, and pushed the surgeon’s scheduled surgeries around so he could remove the tumor first thing the following morning. On August 24, 2015 an 11-hour surgery was performed to remove the tumor. At the time of surgery, they believe they achieved gross total resection, or entire removal of the tumor. The surgeon told us that her brain was so squished that he didn't know what he went through to get to the tumor, and that her midline was pushed way over onto the left side of her brain. He said the location of the tumor was also most likely the cause of the left side weakness we saw leading up to discovering the tumor.
Kaelyn spent six days in the PICU. She had seizures for a few days after the surgery, which were caused by the surgery. The day we were moved from the PICU, we had a meeting with the oncology team. The informed us that they believed that her tumor was a Choroid Plexus Carcinoma, an extremely rare (1 in 3 million) cancerous brain tumor. Due to the rarity of the tumor, and that it was an atypical tumor, they sent a sample off to Dr. Burger of John Hopkin's, a specialist on these kinds of tumors. The oncology team also informed us of a clinical trial — SJYC07 at St. Jude Children's Research Hospital specifically for a handful of cancerous brain tumors. They said she should qualify, but if she didn't there really wasn't a good answer on how to treat her due to her age, and the rarity of the tumor. There was only one recent medical journal published on her tumor. This particular piece of research was in favor of treating with chemotherapy and radiation (once past the age of one) with all types of surgery outcomes for CPCs.
She spent an additional seven days in the hospital on the seizure monitoring unit, but didn't have any seizures the entire time she was on the floor. On September 1, 2015 we received confirmation from Dr. Burger that her tumor was indeed a Choroid Plexus Carcinoma. By this time we had discussed the clinical trial, and everyone was in agreement that this was the best way to help Kaelyn fight her brain cancer. A sample of her tumor was sent to St. Jude's and they did their own pathology to confirm that her tumor was indeed a CPC. They agreed with Cook Children’s and Dr. Burger, and reviewed all her surgery notes. They accepted her to the trial on September 4, 2015. Mommy and Daddy packed up their lives in Texas in three days, and headed to Memphis, Tennessee on September 8th. We found that our doctor has been with St. Jude's nine years, and has seen eight CPC patients, so essentially one a year. St. Jude's is a magnet for cancers such as this, which just reiterates the rarity of the form of cancer Kaelyn is battling. During her first week at St. Jude’s she received a central line and an MRI, but she could not have the spinal tap done due to the swelling still on her brain. After a rigorous week at St. Jude's, she began chemotherapy on September 16th, 2015 (ironically enough, the day of our craniofacial appointment).
Kaelyn has already been through more in her life than 99% of most people out there. She is a tough little girl — a fighter. We are blown away by her ability to smile a week after the surgery. We are amazed that she giggled one month after surgery and that she is already gaining back movement on her left side. She will beat this, but she needs YOUR prayers.
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