Our daughter Lily was diagnosed with a rare brain tumor at 4 months of age, this is a blog about her and our journey since then.
Praise God!!! We got an early New Year's gift today! There is no sign of tumor recurrence in Lily's MRI. Thank you so much again for all your prayers and well wishes -- they were especially meaningful this time around because of the seizure scare, sibling illnesses and all the holiday stress that was going on. I hope you all have a wonderful and safe New Year's. Please know that you all will be thought of as we welcome the New Year and know how blessed we are to have your love and support.
Wow it's hard to believe that 3 months have gone by so quickly since her last MRI. Lily is scheduled for her next MRI this coming Wednesday, December 23. Please keep her in your prayers that she's still clear and the tumor hasn't come back. Last week, she gave us a little scare we had to take her to the ER at 2am on Tuesday because she woke up shaking and they wanted to monitor her and run tests on her to make sure she didn't have a blood infection. Thank God all her blood tests came back negative. So now we suspect her shaking may have been a seizure. Lily was released from the hospital the next day but on Thursday at the beginning of her PT session she started doing some startling motions that her therapist suspects were mini seizures. Lily had an EEG done the Tuesday before Thanksgiving and I thought since I hadn't heard from the neurologist that 'no news was good news' but the oncologist team contacted the neurologist since they suspect she was having seizures and apparently her results were abnormal (why I wasn't contacted -- is another story) and they have up'd her anti-seizure medications and we are awaiting for an appointment with the neurologist. She has had a couple of small tremors which causes me to hold my breath but hopefully she won't have any major seizures before we can see the neurologist. I am just hoping for a quiet, hospital free holiday :-) On a positive note, she slowly progresses in development. Her two bottom tooth have broken through her gums so it looks like rice kernels stuck on her gums and just today she put a puff in her mouth. We were cheering her on as she put the puff to her mouth! Small accomplishements for us but great leaps for someone who has had brain surgery. I hope that you all have a nice holiday spent with loved ones and thank you SO SO much from the bottom of my heart for keeping Lily in your prayers.
