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
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
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
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?
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
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
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
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 …