06/19/2025
Our Sweet Oaklee
It’s been awhile since we have updated everyone on Oaklee’s status. Please stick with me as this is a long post. ♥️
Oaklee continues to be the sweetest, funniest and silliest 4 year old around. Her laugh is contagious and heartfelt. Her smile melts anyone’s heart and she doesn’t know any other life - than life dealing with Optic Pathway Glioma. 🩶
She has been through so much in her short life. Since diagnosis she has had a brain tumor biopsy with countless hospital stays; completed 49 rounds of chemotherapy and 18 months of MEK inhibitors: which all kept the tumor from growing.
However, since having to take a medication break - the tumor has grown significantly. Unfortunately this growth has cause her to lose more of her vision. She has now been put on a more a specific MEK inhibitor - that has even more promising results than the last one. 🙏🏼🙏🏼🙏🏼🙏🏼
Like any new and DNA specific drug it is VERY VERY expensive- like $35,000 for 3 months supply. Even with insurance that’s $3,500 out of pocket that needs to be paid. This has to be paid before the medicine was shipped. How can any company expect a family to pay this kind of money? And this is on top of the trips to Houston for doctor’s appointments or hospital stays.
With all that being said: We are in the beginning stages of planning another benefit for Oaklee in the fall. But in the meantime we are asking people to help sponsor Oaklee’s monthly cost of her medication. Stay on the look out for specifics on the fund raisers and please keep Oaklee in your thoughts and prayers.
