It has been a year since Josephine started showing signs of her brain tumor. New Year’s Eve to be precise...Pep was doing gymnastics when balancing problems started to surface. I would had never imagined the magnitude of the problem. A year later she is unable to maintain her balance at all and can’t walk without assistance. This doesn’t stop her from wanting to go places and enjoy life. We still go to movies, mall, spa for a relaxing facial or massage. Her grateful spirit is always optimistic and looking forward to tomorrow. The wheelchair has become an ally. The wind is not blowing her way so she adjusts her sails.
We are heading to Monterrey soon for treatment and a new assessment. She has been receiving Avastin infusions every two weeks and ONC201 weekly. We are trying to improve quality of life by taking her for physical therapy and occupational therapy every week. Her teachers come to the house two hours every day to keep up with school.
Josephine is not in pain, just uncomfortable with her facial paralysis as this impairs her communication and it’s a bit frustrating. Of course this doesn’t stop her from chatting. She manages to get her point across.
She still has some absence seizures, but I have replaced Kepra with CBD and she has lost a few pounds. She is also off steroids. Avastin has taken its place.
Thanks so much for following and let’s hope for improvement. I had to update our fundraising goal to reflect actual medical expenses since February 2018. Kindly share our fight and donate if you can. No amount is too small and it’s greatly appreciated.