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!

Just back from a couple of days in NYC for Amber’s first dose of pembrolizumab. We went in on Sunday so we could be well rested for a 7:45 AM start on Monday. After an x-ray to confirm her port is looking good, we continued on to a loooong MRI, looking at both the brain … Continue reading Day 195, Round 1

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)

Amber, Caron, and I jumped on a train into NYC this morning, to go visit Memorial Sloan Kettering and make a decision about the trial we are going to pursue.  It was a gray, rainy day, kind of fitting our mood.  It's funny how Caron and I flip back and forth in our moods - … Continue reading Day 188, A Rainy Day in NYC

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

The MRI of Amber's spine came back clean!  This is very good news! We still have to go after that one tumor that was found last week, but for now, we wait.  The MRIs and other results have already been sent out to a few places, and hopefully we hear back next week about which … Continue reading Day 177, Good news!

Amber is getting her spinal MRI right now. She went in about 6:00 PM, and it will take roughly two hours. It looks like we will have to wait until tomorrow to learn the results, so please don't worry if you don't see us post about it tonight - but we will post as soon … Continue reading Day 176, Waiting …

Tomorrow evening Amber goes into the "Truth Machine" (MRI) again. Following the discovery of some tumor regrowth this past Friday, we now are going to check if there has been any spread - with a focus on her spine. Spreading to her spine would be a particularly bad development, so we are praying that this … Continue reading Day 175, Next Step

The MRI results today did show "recurrence" - some regrowth of the tumor. Of course, this isn't the news we've been hoping and praying for. At the same time, though, this doesn't mean we've lost the war. The regrowth is fairly small, and we know where it is and what we are dealing with. Over … Continue reading Day 170, Lost a Battle but the War isn’t Over …

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!

Good News - Amber's MRI scan came back looking good! It was a pretty long day, with us leaving the house around 8:00 and getting back home about 5:00.  We started with an early visit with Dr. Gillan in the Hem/Onc clinic, then went downstairs for the MRI, and returned to Hem/Onc to get the … Continue reading Day 126, It’s a High Five Kind of Day!

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