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

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

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

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

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

A truly heartfelt THANK YOU to all who supported the "Superheroes Pay it Forward" fundraiser. The result: 118 shirts sold and a final total amount resulting in $2050! WOW! That is so amazing and so generous! A truly wonderful donation going to an equally wonderful hospital: CT Children's Medical Center. Helping to find a cure … Continue reading Day 214, A Heartfelt Thank You & What’s Next —

6 months ago, things were just as they were supposed to be; the hustle and bustle of our normal life with it being pretty near-perfect. 6 months ago, that pretty near-perfect life, it changed quite dramatically. It was life-altering. 6 months ago, Matt and I thought we had lost one of the most important -- … Continue reading Day 197, Happy 7th Year of Life, Amber Grace!

WOW. THANK YOU. Superheroes pay it forward . . . and then some . . . On behalf of Miss Masucci, Mrs. O'Neil, Amber, and myself, THANK YOU.  Because of your extreme generosity -- out of the 50 shirts that we were hoping to sell, we sold 74!  And not only did we sell more … Continue reading Day 193, Superheroes Pay It Forward, And Then Some!

Amber's Way continues on, with all fingers pointing towards the West to NYC as we get ready to embark on her next step in fighting this cancer.  Amber has an early morning set up with MSK on Monday to first take an X-Ray of her port, then a Brain and Spinal MRI.  Then on Tuesday, she … Continue reading Day 191, Big Hope in the Big Apple (and some Big Sadness too)

I wish I could say that I came up with the concept but I did not. All credit goes to Amber’s teacher, Ms. Masucci, and administrative assistant, Mrs. O’Neil, at Saint Joseph School. They are selling t-shirts they designed to support the Connecticut Children’s Medical Center (CCMC), as a way to “pay it forward” for … Continue reading Day 180, Superheroes Pay It Forward

Sometimes the thought of why we pray comes across my mind.  For me, praying is the natural thing to do when something is heavy on my heart or I want to give thanks to God.  In praying I find there is Hope.  Hope, when all else feels lost.  Prayer for me is a direct connection … Continue reading Day 165, The Proof Is In The Prayer

Warning -- The blog post you are about to read is long.  Like, really long.  But how does one write a short blog post when so much cool stuff happened to us on our big trip?  Of course I have to include all the details so that readers like you can live vicariously through us!  … Continue reading Day 158, Wishes Do Come True

Sunday, August 14th, 2016 It was 2 years ago, on this very day where Matt, the kiddos and I were celebrating our “biggest and grandest” summer family vacation yet -- our first official trip to Walt Disney World with all 4 children! No cares in the world and the only thing we had to worry … Continue reading Day 145, A Twist of Fate

How life can take us by surprise sometimes . . .  But good surprises this time. We found Amber's MRI this past Wednesday surprising in that she had nothing "new" going on.  She has Glioblastoma Multiforme which is an aggressive type of cancer, surely something should have shown up on this MRI, right?  There may still … Continue reading Day 130, Turns Out, This Week Was Pretty Awesome!

Matt and I want to thank everyone who took the time out of their busy Friday evening schedules to come and support Amber (and us) at the Holy Hour.  Thank You!!!! Amber is finding her way around all kinds of places this summer!  I'd like to share some with you -- Let's Ride! Amber's Physical … Continue reading Day 123, Amber’s Way Around

This past week was extra special because we took our family on vacation.  The whole family; the six of us, together.  It was a vacation that has been planned since the beginning of February.  A vacation that very well should have been canceled given the tumultuous months following that booking.  Fortunately for us though, it … Continue reading Day 116, The Beach, It Soothes The Soul

Never in my life did I think that I would be in a situation where (A) I would have to bring my youngest daughter for radiation treatments because she actually has cancer and (B) I am actually sad that today is Amber's last day of treatment.  Crazy, I know.  Let me explain.  Cancer sucks.  Radiation sucks.  … Continue reading Day 99, A Bittersweet Day

This past week has proven to be yet another new "New Normal" for the Smith household.  The girls were officially done for summer two Fridays ago, and normally the schedule we once had diminishes and we have to readjust to a new summer schedule.  So the same is obviously true for this year too, however, … Continue reading Day 95, The Truth Machine

As Amber gets stronger and improves everyday I can't help but ponder (again) what the future holds for her. This past month, although going great with Amber's positive improvements with things like walking on her own and "lefty" (which is her left arm, hand, and fingers) getting stronger, I can't help but feel sad. About … Continue reading Day 85, With A Hug + I Love You