I celebrate all of my children’s ½ birthdays and today, April 4th, 2019, is no exception. ~ Happy 7 ½ Birthday in Heaven Amber Grace ~   Life Doesn’t Stop After Death. How dare life keep moving forward after the death of Amber.  It should be stuck on pause -- that horrendous day.  It should … Continue reading Day 379, Life Doesn’t Stop After Death

Today is Friday, March 22nd, 2019.  Exactly 1 year ago, on Thursday, March 22nd, 2018, our Hell began . . . 2018 was the worst year of my entire 39 years.  Throughout my life there has been the normal up and down days along with the good and bad days.  But none could compare to … Continue reading Day 366 — From Hell To Heaven

As happens every year about this time, we all think about New Year's resolutions. Maybe we want to lose weight, or kick a bad habit, or budget better, or exercise more. For us, it has been a terribly difficult year - but we've also learned a lot about ourselves, about our communities, and about life … Continue reading Day 285, New Year’s Resolution

There is a sense of calm, a sense of peacefulness within us knowing Amber is safe and sound in her new surroundings, no longer battling this terrible disease. This past Friday, December 21st, was Amber's wake. On the ride there Matt and I looked at each other and asked ourselves if this was for real. … Continue reading Day 278, Angels Among Us

http://www.legacy.com/obituaries/norwichbulletin/obituary.aspx?pid=191039211

It's weird to transition from grief to planning, but it's also a little bit of welcome distraction. We've met with the Funeral Home Director, our Priest, and the Cemetery Manager. We have picked out a casket, a cemetery plot, and hymns for the choir to sing. It is all so surreal, and so very very … Continue reading Day 273, Planning the services

Yesterday was a terrible day. I'm not sure I have much more energy today to write about it, but I want to capture it while it is all still crystal clear in my memory. The night before (Sunday into Monday), Caron and I took shifts with Amber, swapping every few hours when it was time … Continue reading Day 272, Revisiting Day 271

Today, Monday December 17, 2018 at 4:55 PM EST, Amber left this world and entered Heaven. Amber died peacefully, nestled in the arms of her Mom, with her Dad at her side and her siblings nearby. She has no more earthly worries, no more cancer, no more weakness. Her only concerns now are eating marshmallows … Continue reading Day 271, Monday December 17, 2018 4:55 PM EST

The title of this post was was chosen by Amber - as Caron and I were reading the draft and coming up with titles, Amber gave us a definitive "yeah" for this title. After a 30 hour "nap", almost completely unresponsive to us, overnight she started becoming more awake and aware - even through all … Continue reading Day 271, Keeping it sassy

Decadron. Keppra. Zantac. Ativan. Morphine. Compazine. Every three hours.  Every 6 hours.  Every 12 hours. Nothing in sync means something every hour. This morning, I realize we have done this so many times that we have this down to a routine, able to perform the motions without really thinking about it, even when exhausted.  Clip … Continue reading Day 270, Not much longer

Amber is comfortable, sleeping, still with us for now. She (and we) will not be attending Mass this evening to receive her First Communion.

Let me first start with some words of thanks. We truly appreciate all of the prayers, kind words, and support for Amber, for us, and for our family. This is an incredibly difficult time for us, but your support helps us avoid completely slipping into despair, and being able to enjoy our time with Amber. … Continue reading Day 267, Peace, Calm, Comfort

It is with very heavy hearts that we share some difficult news. Amber is home with us, happy and comfortable. However, after a number of discussions with the doctors, we have come to accept that this disease is progressing extremely rapidly, and there is nothing more that can be done to stop it. She is … Continue reading Day 265, Heavy Hearts

Just a short update this morning. We are going to stay at CCMC another night. Amber did well last night (well, at least as well as someone can do when being woken up every hour for checkups), and the steroid seems to be helping relieve the pressure. The steroid isn't a cure - it reduces … Continue reading Day 263, Morning update

Today was the annual Christmas Concert at the kids' school. Amber, Ryan, Brianna, and Marie have been practicing their songs for weeks, and were ready to get up on stage. But, Amber wasn't destined to perform today. Yesterday, we had a follow-up with the opthalmologist. As the exam was wrapping up, and she told us … Continue reading Day 262, Speed bump

Wish we had better news to share with you today. In a nutshell, the day was a big let down. Amber had her MRI and unfortunately, the results came back with what we were fearing - growth. Because the Pembrolizmaub is not working, they decided not to have Amber do the infusion today, nor any … Continue reading Day 257, A Let Down Day

It's been almost 3 weeks since our last post.  It's been an interesting few weeks, with ups and downs.  But most importantly, this week was Thanksgiving.  Even with the roller-coaster that life has been lately, we made sure to stop and enjoy the long Thanksgiving weekend as a family, and to really focus on what … Continue reading Day 249, Being Thankful

Just when we think that we are in for a "yes" or "no" type of result, life reminds us that their is always room for "maybe". Amber had her MRI today. The results show some increased growth since last time, still in the same location as the original tumor. We were hoping to see some … Continue reading Day 229, … maybe?

Happy Halloween From SuperGirl!!! One of the best Halloween's ever, why?  Because Amber is HERE.  Here to enjoy it.  Period. MRI Monday is the day.  Her much anticipated MRI.  Not sure what it will show --  1 tumor the same size? 1 tumor, bigger size?  1 tumor, smaller size?  OR maybe -- Multiple tumors?  Or … Continue reading Day 227, A Very Happy Halloween! & Next MRI

Today was another trip to MSK in NYC, for Amber's second dose of pembrolizumab.  As always, this started with checking Amber's vitals, doing some blood work, then waiting around for a while until a room is available for the infusion.  Amber had a little trouble with it this time, getting some flushed cheeks, a minor … Continue reading Day 216, Round #2 in NYC