A Long Update

The Medical Update

Two of the biggest reasons we moved to Texas were to be surrounded by more family and closer to MD Anderson.

We got the news in mid-July that the intravenous chemotherapy was no longer working, so that meant he had to move to a chemo pill (3rd line treatment). We had a feeling that wasn’t working mid-way through, and it was confirmed by scans after our cruise in October that it had spread to his vertebrae and his peritoneal lining. He had been having bouts of back pain, and the scan confirmed what we feared - cancer in new places.

We went to MD Anderson for those scans at the end of October, and his bilirubin was elevated at 2.7. Bilirubin (along with three other blood components) is a crucial blood work number because it measures the health of your liver. Most trials have a max of 1.5 and some up to 1.8, which was hard to hear because that meant we were running out of treatment options for Zach.

We left MD Anderson in a state of unknown. They thought that maybe he had a blocked bile duct causing a buildup of bilirubin, but the scan didn’t show a blockage. The more likely scenario is that the disease is progressing, and it is the cancer that is causing the increasing bilirubin. A week later, we went in to see his local oncologist here in Rockwall, and they drew more blood, and his bilirubin came back at 1.3. The decrease in bilirubin meant he could still qualify for a trial! I messaged his oncologist at MD Anderson to let her know, and she was thrilled. A few days later, we got a call from the clinical trial department, and they offered Zach an immunotherapy trial. We drove down on Tuesday (a 9-hour round trip drive) to do the first blood work with the clinical trial team. The cut-off for this trial is 1.8, and his blood work returned at 1.8. Sitting in that exam room, we did not know if they would accept him, but they DID! We got a YES. That blood work was the first step in qualifying for the trial, and his bilirubin does need to stay at 1.8 or lower until the trial starts, but we are so grateful. We will go back on December 4-5 for more blood work and scans, and then, pending his numbers, we will go back on December 10 for blood work and the immunotherapy drug infusion on the 11th.

We pray daily for Zach’s healing and that God will give us the courage to accept His will for our lives. This journey has taught us so much about pain—emotional pain that manifests itself into physical pain, the challenges around managing it, and how it affects all aspects of life.

The Joyful Update

We took a big cruise in October. We were gone from October 1 to 21. We flew to Honolulu to board our Disney Cruise to sail to Sydney, Australia. It was what we all needed. I could rest and recover from mono, and we soaked up the sun. We enjoyed having the chefs cook for us and spending all the time together. Silas loved the unlimited soft-serve ice cream and the buffet. It was a 15-night cruise, and I would do it again in a heartbeat. The ocean is calming, and the warm salt air reminds me of my childhood. We stopped in Maui, American Samoa, and Fiji, and then our final destination was Sydney. We spent a few days in Sydney before we flew home, and I think it might be my favorite city I have been to. It was early spring, and jasmine was flowering and smelled beautiful. On the cruise, Zach and I celebrated our 14th wedding anniversary (10/16). I met Zach when I was 19 years old, and when I was 23, we got married. We said the traditional wedding vows:

To have and to hold.

For better, for worse, for richer, for poorer, in sickness and in health.

To love and to cherish.

Until death do us part.

Making those vows to Zach was an honor 14 years ago. We were filled with joy on our wedding day, knowing we became a family on October 16, 2010. We are living those vows to the fullest right now. The waiter who served us our anniversary dessert said, "Happy Anniversary, and many more." We don’t know how many more anniversaries we will celebrate, but I am grateful every day I get with him.

Fast-forward to 11/2/24, Silas’s 10th birthday. We took him to Shananigan’s, an indoor arcade with escape rooms, a bowling alley, and an axe-throwing place. It was the three of us, and it was the best day. He chose what he wanted to do and repeatedly told us, "This is the best birthday.”

Somewhere in the mix of all of that, Zach booked us a trip to Venice—a place we always dreamed of going to together. But when we got the news the cancer had spread to his vertebrae, we felt like the trip would be too much, especially since it explained his increasing back pain. It seemed as soon as we booked it, we canceled it.

We snuck in a quick trip back to Connecticut in November. We wanted to see so many people but didn't have enough time to fit in all the visits because this trip back was for Silas. It did such good things for his soul, and that trip filled our hearts with joy.

I will be writing more blog posts about my journey. I have many posts that I don’t publish because they don’t fit the Zach Medical Update. I will publish them, but I won’t email them, so if you are interested, feel free to check back if those are words you want to read.

Things To Pray For

Zach’s bilirubin stays below 1.8.

Zach Zach's is still a bit unpredictable right now, so it can be hard to manage. Pray that his pain lessens and becomes better manageable.

For our family, as we navigate the next few weeks before Christmas.

Here are photos from our cruise…

Until next time,

Amber