Rhylee’s Brain Cyst Removal Surgery



Rhylee is 5 years old and a big sister to 2 year old Aryah and 12 week old Bentley. She is incredibly smart and loving and was excited to start kindergarten and have a new baby brother this year.  Unfortunately, baby Bentley was born at 35 weeks and spent 18 days in the NICU.  Upwards of $25,000 in bills have accrued from the NICU stay, transport to a higher level NICU, occupational and speech therapy, as well as other visits from doctors trying to connect a jaw/hand issue that he shares with his big sister Rhylee. The jaw part of this apparent genetic issue running though our family prevents both Rhylee and Bentley from opening their mouths more than about 5 millimeters. 

It was this jaw issue that caused the pediatric plastic surgeon to request a CT scan for Rhylee about a year ago. It was not what we were expecting when we got the results of the scan.  They found nothing structurally wrong with her jaw and are still trying to diagnose her, but did find a massive cyst on Rhylee's brain that would require surgery. The cyst is large enough to be placing pressure on her brain, causing her skull to get pushed up (deformed), and it is possibly putting pressure on her optic nerve. In order to fix this, they will need to cut a section of her skull, pop and drain the cyst, and then reform her skull to help prevent regrowth and make her shape more normal.

Our insurance does not pay much for this surgery. We have to meet the individual deductible before it will pay anything. Even after the surgery is complete, she will be kept in the children’s hospital for 3 or more days and have several follow-up appointments. We were hoping we would have all of this behind us before the baby was born as her surgery was originally scheduled for June 22nd.  Due to insurance issues, we were not able to get the surgery back on the schedule until now.  She is scheduled for December 10th as of now.

Rhylee is aware that she needs surgery to get the "thing" out of her head and that the doctors will need to shave some of her hair to do so.  She loves her hair.  At only 5 years old, she is already scared that other kids will make fun of her because of her having this surgery and her hair being gone. She is scared to say the least and needs both her mommy and daddy there to comfort her, but this may not be financially possible.

Due to the time I had to take off for having the baby, I have missed 3 paychecks.  We found out after having the baby that my pay does not just go to zero for the time off, but it is docked.  I am a high school teacher and am on salary year round.  We did not realize that they would be taking $300 plus dollars away for every day I missed for the baby.  This, in a way, made my pay negative which required more missed paychecks.  As of now, we have had to borrow money to pay rent for December from a family member who we cannot thank enough.  Because this surgery is coming up so soon after all the missed paychecks, I may only be able to be with my baby girl the day of the surgery.  While Rhylee is in the hospital, I will most likely have to go to work as we cannot afford to have another paycheck gone due to the docked pay plus my husband missing pay for his time.  I don't know how I can be at work and hold it together while my baby is recovering from a very serious brain surgery.

I want to thank everyone who has donated and/or shared this since the beginning and want to thank all of you in advance for doing the same.  We truly appreciate everything and hope to one day pay it forward when someone else is in a similar situation as us.  



Above you can see how much her skull has been pushed up due to the cyst without her hair masking it.  We got her these head wrap headbands that she can wear after her surgery if she wants to cover it up.  She loves them.

Below is the first time the girls got to meet their baby brother after 18 days in the NICU.  Rhylee was able to see him for a few minutes in the incubator at the hospital, but was not allowed to touch or hold him.