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!
As we have done every year for the past many years, today on Father's Day we went for a nice nature walk. We drove up past the Comstock Covered Bridge in Colchester, CT to a secluded parking area along the Airline Trail, which is an old railroad line converted to a beautiful trail perfect for walking, … Continue reading Day 88, Father’s Day Determination
Wow, what a busy day today! We were out the door by 7:20 this morning, for a 7:45 radiation treatment. Only 18 treatments left to go! It's funny - as horrific as it is to have my 6-year old go through radiation treatments, the team at Backus is so nice, so good to Amber, so … Continue reading Day 75, No More Stinkin’ Stitches
A quiet holiday, recovering from the activity of yesterday. The weather cleared enough for the family to get out on the back deck to grill some hotdogs and hamburgers, and light off the fire pit for a while. It was a good day. Today we remember those who made the ultimate sacrifice for the freedoms … Continue reading Day 68, Memorial Day
Today was a big day - the Dance Recital! Brianna and Marie put on great performances with their groups. Brianna has been studying hip-hop this year, and Marie has been studying acro. I'm very proud of both of them for sticking to the classes and rehearsals, getting up on stage in front of that audience, … Continue reading Day 67, Dance Recital
... and "normal" is a wonderful thing. While Caron and the older girls went off to their dress rehearsal for the upcoming dance recital, Amber and Ryan stayed home with me. A quiet day, eating lunch outside on the deck, and getting a little walking exercise with a trip down the driveway to get the … Continue reading Day 66, A Fairly Normal Day …
Sundays are for rest, and today was a quiet, restful day. While Caron took the older girls to a birthday party today, Amber and Ryan stayed home with me. Ryan helped me with Amber's exercises, making sure nothing was in her way as we walked around, and giving her something to reach for while stretching … Continue reading Day 60, Another Quiet Sunday
A nice, quiet, simple day today. Lots of phone calls to make, appointments to schedule, etc., but just an easy day with Amber at home. Amber practiced her walking with us, played with her brother and sisters. And they all laughed together, beautifully. And while we know that not every day will be like this, … Continue reading Day 51, Simple Laughter
(We'll write a separate post later about getting our mask for radiation treatments today) Short and sweet - Amber came home today!!! It has been 50 days since all 7 of us (including Rea!) have been home at the same time - and it is wonderful to finally be here. Here are a few pics … Continue reading Day 50, We’re Home!!
Everything is lining up for discharge on Thursday! Of course, nothing is done until it's done, but we are almost there! As nurses stop in to say bye because we won't see them over the next few days, it's a bit funny to know we'll miss them. We wish, more than anything, that we weren't … Continue reading Day 48, Almost There …
Following the successful surgery yesterday, we spent the following 24 hours in the ICU. Unfortunately, between the after-effects of surgery, the variety of medications for pain; sedation, seizure, nausea, constipation, and the general constant noise of the monitors and business of the ICU, Amber decided she didn't want to sleep. So while I went to … Continue reading Day 44, Here be Dragons!
Amber is out of surgery, and is resting comfortably in the PICU. Everything went well - both the port and the skull flap procedures were successful, with nothing unexpected. She'll remain in the PICU overnight, and be back up to the "regular" room tomorrow afternoon. But now the PICU is far less terrifying than when … Continue reading Day 43, Surgery Went Well
Today ends our sixth week of this journey, this epic rollercoaster. While we realize we are not the first ones to have followed this path, we also recognize that it is not a common path that everyone finds themself on. We also recognize that the vast amount of support we've received, of prayer being offered … Continue reading Day 42, Steps in the Journey
(Warning: long but positive post ahead) Actually, it's not brain surgery at all -- as far as anyone can tell, the MRI shows no tumor regrowth, so Thursday's surgery will "just" be reinstallation of the skull flap, and no additional surgery to do anything to the brain is necessary! This really is about as good … Continue reading Day 41, It’s Not Quite Brain Surgery
We started our day around 6:30 AM, with final prep for the MRI, and our trip to radiology on the first floor for 7:30. Amber was asleep (sedated) for the scan. Everything went smoothly, and we were back in the room by 10. Now, we wait for results. We are bracing ourselves, though we are … Continue reading Day 40, Bracing Ourselves
When we first arrived at CCMC, a very long 37 days ago, I noticed an informational video looping repeatedly on a TV screen in the hallway, with a short segment showing many of the staff wearing superhero shirts or costumes. During the next week, I remember hearing about "Superhero Day", and how it was coming … Continue reading Day 37, Superhero Day!
Oatmeal and spinach are great, but ... sometimes you just need a little bacon! Amber started the day with Speech Therapy bringing in some new breakfast items - things that are harder to chew and swallow, to see if Amber is ready for a "regular" menu. Waffles, whole strawberries, and ... bacon! The bacon was … Continue reading Day 35, Bacon 🥓 !
Another fairly quiet day. No Physical, Occupational, or Speech Therapy today, just me and Amber spending the day together. But between meals, G-tube feedings, medications, checking vitals, it's amazing how quickly the day flies by. We spent some time in the morning coloring together, and watched some Minecraft videos on YouTube together (she still has … Continue reading Day 32, Questions, and Some Spinach
Today was a fairly routine day. Which is unusual, because we don't really have much of a regular routine. But, one is starting to develop, and having some regularity, some predictability, is a good thing. After a breakfast of oatmeal, Amber and I did a little bit of coloring. Again, she did a great job … Continue reading Day 30, Getting into a Cycle
Four weeks ago today, I carried an unconscious, lifeless Amber into the Backus Hospital Emergency Department, not having a clue what kind of journey was beginning for us. And worse, not sure if I would ever see her awake again. Four weeks later, Amber is not only awake, but is smiling, talking, and giving me … Continue reading Day 29, 4 Weeks