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 we are thankful for.
Since our last post, Amber had her third infusion 2 weeks ago. The infusion went smoothly, but while we were at MSK we discussed some pain Amber has been complaining about in her right eye. We were able to see the oncological ophthalmologist, who took a look and saw nothing immediately concerning, but gave us some ointment for a stye that had developed on Amber’s right eye. As the next couple of days continued, the pain increased, and Amber came home early from school twice. MSK advised us to see our pediatrician, who also didn’t see anything that should be causing pain, but he immediately got us into the ophthalmologist at Yale-New Haven. After almost two hours of different doctors and assistants looking in Amber’s eyes, they came back with their findings — she has dry eyes! So, we started giving her some simple eye-drops, and this has helped significantly. It hasn’t made the pain totally disappear, but it has made a huge difference. We are very thankful to be able to reduce her pain, and not have this be something more serious.
This past weekend, we got to visit the residence of Little Audrey Santo. Audrey died in 2007, but experienced miracles and may some day be Canonized. We met Audrey’s mom, and talked about Audrey’s life. Reverend Peter Joyce joined us, and gave a blessing over Amber, asking for Audrey’s intercession. Having Father Joyce is quite coincidental – he delivered the Wedding Mass when my brother got married in 2012, and the Funeral Mass when my brother died in 2016. There have been many similar “coincidences” over the past 249 days, so maybe his appearance at this most recent event in our lives wasn’t just accidental, but rather, is evidence of some larger plan in the works. Seeing Father Joyce, having Amber receive a blessing, and praying for Audrey’s intercession was all together an incredible experience, and we are very thankful to have some really good friends (who have helped us quite a bit through this entire ordeal), who set this up and joined us.
And then we had this beautiful Thanksgiving weekend. We hosted (and by “we”, I really mean Caron — I just try to stay out of the way) my parents, my aunt, Caron’s parents, her grandmother, and her brother and sister-in-law — along with our own family of 6. It was a beautiful time, some time to relax and enjoy a meal with the family, and ponder what we are most thankful for (I’ll say more on that a little later). On Friday, while many people were enjoying the chaos of the shopping malls, the six of us went and found our Christmas tree, and then decorated it on Saturday.
It was while decorating the tree that it hit me, what I’m really most thankful for right now.
As I’m watching the kids hang their special ornaments, I forgot for just a moment that Amber has a serious illness, most likely deadly. For a few minutes, she is “just” one of my children – laughing, enjoying herself, talking about Christmas. But then I remember, and struggle to maintain my composure as I realize that statistically, the odds are against Amber being with us to do this again next year. I remember that right now, the tumor is most likely still growing, and that we may be considering alternative plans over the next couple weeks.
But then I also remember that we have this time together. March 22 could have been it, could have the last time we had Amber with us. But she is still here. She is still happy, and we still have the possibility for a positive outcome. We have our whole family, right here, right now.
And so, even though the past 249 days have been difficult for all of us, and Amber most of all, I am thankful for this time we have together. However short or long it may be, we are going to appreciate every moment we have.
We now look to the next MRI, scheduled for next Monday (8 days away). This one should provide some direction — either the treatment is not working, the tumor is progressing, and so we need to consider alternative plans; or (somewhat less likely) the treatment is working and the “growth” that was apparent in the previous MRI was just “pseudo-progression” and we will start seeing the tumor shrink. So for now we pray simply to be pointed to the right path, whichever gives Amber the best chances.