One of her few trips to a playground this fall.

Fall Testing

Hi Everyone, Wow, went to write this and realized we haven’t posted an update since the summer. It has been a crazy and busy couple of months with ups and downs. In a lot of ways Sally is still in the same place that she was in our last update. She’s still on oxygen support […]

An Unexpected Busy Summer

An Unexpected Busy Summer

Hi all – We updated you all on Sally a few weeks ago, including how Sally was hospitalized shortly after the previous update. Strangely enough right after our most recent post, Sally was hospitalized yet again for pneumonia, this time for two weeks. Yes – the superstitious side of us is hesitant in sharing this […]

Moving On Up

Moving On Up

Hi all – Looking back at old posts we’ve always provided an update around this time of year as it coincides with the start of Sally’s cancer treatment and this journey we’re on, now FOUR YEARS in. We also realized it’s been almost five months since our last update, so am sure many are wondering […]

How Is Sally?

How Is Sally?

It's a Start

It’s a Start

Hi Everybody – We hope everybody enjoyed their holidays. Ours was certainly busy between seeing family and several medical appointments. It was great getting to see family and friends, and also an opportunity for them to see first-hand what Sally is battling as they all experienced the seizure activity we’ve been seeing. When we last […]

Hospital Stay - Video EEG

Hospital Stay – Video EEG

Hi all, When we last posted a month ago, we were seeing an increase in Sally’s seizures caused by the cancer treatment and had started her on a new drug called Depakote. After just being released following an unexpected 5 day hospital stay, we’re now counting on this med to stop a downward trend that […]

Increased Seizure Activity

Increased Seizure Activity

Hi everybody – It’s been two months since we last updated you on Sally, she had just finished her first day of school and we were adjusting Sally’s meds after seeing a lot of seizure activity.¬†For about a month we saw a stabilization of Sally’s seizures after increasing her Onfi dose. However a few weeks […]

First Day of School

First Day of School

Hi all – Well, that summer went by rather quickly, right? It was mostly an enjoyable one for us, with some challenges included. As the title indicates, our little girl started school today. There were times during treatment that we wondered if this day would come. Well, it did arrive and Sally has achieved another […]

Three Years & Follow Up EEG

Three Years & Follow Up EEG

Hi all – When we last wrote about five weeks ago, Sally had just gotten home from NYPH-Weill Cornell Hospital where she had undergone an EEG which confirmed that she was experiencing myoclonic seizures. We had said that our first step was to select a specialist that would be on the same level as Dr. […]

Myoclonic Seizures

Myoclonic Seizures

Hi all – We know it’s been awhile since we’ve updated our blog. Over the last few weeks Sally has been undergoing several tests that would allow us to see the state of her health and have a baseline post treatment should any issues arise in the coming weeks, months or years. We planned to […]