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 […]

Post Treatment Challenges

Post Treatment Challenges

Hi all – It’s been almost two months since our last update, which is back when Sally had her port surgically removed. We’ve been very busy during that stretch which included a trip to Florida to see Grampa and Gramma Kabel, capped off by a visit to Disney World. It was our first real family […]

Port Removed, Old Emotions Stirred

Port Removed, Old Emotions Stirred

Hi everybody, We haven’t written a blog post in three months, not since Sally received her last dose of chemo for her Infant Leukemia treatment in August. We continue to post short updates on Sally’s Facebook page, but have been contacted by friends and family not on Facebook asking how Sally is doing. Nicole will […]

Sally with Dr. Kobos just after we thanked her for saving our little girl's life.

The End of Infant Leukemia Treatment

Hi all – Over two years ago, and several times in between, we didn’t know if we’d ever get to write this blog post. Sally had just been diagnosed with a rare form of Infant Leukemia that had a dismal survival rate. Today, here we are, Sally just received her last scheduled dose of chemo, […]

Sally Takes Off!!!

Hello all! Sally is almost three years old, and due to the effects of two years of harsh chemo for her Infant Leukemia, she’s never been able to walk. Three leg fractures from weakened bones, neuropathy, seizures and severe GI issues have held her back. That is, until today. Watch our little girl finally take […]

A Letter From a Childhood Cancer Survivor

A Letter From a Childhood Cancer Survivor

Hi everybody, It’s been a long time since I’ve written. As Sally’s Infant Leukemia treatment winds down, there is a message we received on Sally’s Facebook page a few months ago that a day hasn’t passed where I’ve thought about it. I’ve included it below, completely unedited, with Lauren’s permission: “I saw your post today […]

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Two Years In – High Anxiety

Hi all – Over the¬†weekend we passed our two year anniversary of the day Sally first got sick. Although we were formally diagnosed on July 15th, Sally first showed symptoms that brought us to the ER on June 12th of 2013. From that moment on life was never the same for our family, and never […]