Sunflowers

Sunflowers

“She’s gone.” Those were the words spoken by the head ICU doctor at NYU Langone at 2:01pm on September 19th, 2018 after listening for Sally’s heartbeat for over a full minute. There was no heartbeat, we had lost her. We did everything we could. The doctors, nurses and medical staff did everything they could. It […]

Collaboration

Collaboration

Hello all – We had sworn we’d done a more recent update, but our last one was about our Make-A-Wish trip back in February. We had a very busy spring between school, recitals, lacrosse, graduations, moving up ceremonies and the sort. The good news is that while Sally struggled to adjust at school during the […]

Sally's Make A Wish Trip

Sally’s Make A Wish Trip

Hello all – Over Christmas, we finally got to take Sally on her Make-A-Wish trip. Most families like to do a Disney-type trip, but that wouldn’t be right for our family, especially with Sally’s epilepsy and it wouldn’t have been fun for her. Sally isn’t cognitively able to make a wish, so we took what […]

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 […]