After a long run of stability and progress we are back to hard and challenging. 

It’s been exactly four weeks since the last time I updated. In that time frame we were a tad consumed with big family life: nine “High School Musical” performances by Cody, two VT graduation ceremonies for Kyle, two senior proms for Tyler, an outdoor jazz fest performance at VT for Ryan, eight soccer games for Tyler and practices in between, three birthday parties that Sydney or Cody attended, a band concert for Cody, prep for summer Air Force/Space Force training for Ryan, Baccalaureate for Tyler, sixteen gymnastics practices for Sydney (thank God for the gym moms who take her back and forth!), two follow-ups at UVA for Cody, Mother’s Day for me (ha!), and nine physical therapy/ nurse/ doctor/ bloodwork appointments for Todd.

In that time frame Todd regained his ability to be on his feet and get himself around the house, and he was able to attend some of those events! Physical Therapy appointments focused on safely getting up from the floor and going up and down stairs. After Ryan’s outdoor jazz fest Todd walked (slowly) on his own back to the car while talking to Ryan and Kyle. It was so momentous that I caught it on video. And that was the night before Tyler’s soccer senior night, so the goal of walking by then was met! It’s just very short stretches that Todd can walk, but that means that the wheelchair can stay in the trunk of my car for when we are in public instead of being used to get Todd in and out of the house. 

We made it to Mass on Mother’s Day, and it was around then that Todd started complaining that his left thigh hurt. It made sense considering the increased physical therapy sessions that  worked his thigh muscle on the stairs and getting up from the floor. That muscle had been dormant for over a month. (Todd’s body has suffered a lot from muscle atrophy since being sick in March and being put on a high dosage of Dexamethasone, a steroid that causes muscle breakdown over time. It was prescribed to help decrease brain inflammation when he was in the hospital, and we’ve been very slowly weaning it since mid-April.) This past weekend Todd’s thigh pain continued to increase, well beyond what muscle soreness feels like.

Then early Monday morning Todd’s left thigh felt warmer than his right, so after getting Sydney and Cody off to school I took him to the ER to check for clots (Deep Vein Thrombosis). You may remember that we also had gone to the ER at the beginning of April to check for clots in Todd’s left calf. He had been cleared to go then, and the pain in his calf had worked itself out over time as he continued to stand and walk again. But this time was a different story.

Todd does have a very significant clot in his left thigh. It runs all the way from his knee up to the groin area. The nurse described the clot like a worm in his vein. I am thankful for that first ER visit to check for clots because it prepared me for this occasion. In fact, the word preparation has been a theme in my mind throughout this entire journey. I’ve seen evidence of it everywhere; everything serves a bigger purpose. “We know that all things work for good for those who love God, who are called according to his purpose.” Romans 8:28 

We were discharged in the afternoon after Todd received his first oral dosage of the blood thinner Eliquis. Of course there is the fear of what could happen if a chunk breaks free from that clot rather than dissolving, but when that fear creeps in our strength comes from recalling promises in Scripture. “Do not fear: I am with you; do not be anxious: I am your God.” Isaiah 41:10  We also remember that Cody had a blood clot right next to his heart when he was two years old, and despite that very stressful season with him on Coumadin plus a steroid plus chasing three active older brothers, we made it through. And we find comfort knowing that prayers are being lifted at any moment by you all. When we choose to "be still" in our hearts we are even more aware of the work of the Holy Spirit who is never bound by distance or time.

This blood clot is very painful for Todd. The past two days have only been focused on pain management, the medicine timeline, and sleep. 

Yesterday was the first day home with a new diagnosis, new medicine routine, and new symptoms to look out for. And Cody had appointments at UVA. I was stressed through the roof to leave Todd (even though my Dad and the big boys were home with him) but I needed to be with Cody since I wasn’t at his last few appointments. (His cardiac cath is next Friday, but these appointments were with hepatology and hematology.) After being away for only 5 hours, when I returned both Todd and I were overcome with emotion and thankful to snuggle together. Unfortunately the "regular" trials of marriage relationship still happen despite fighting a deadly disease, and the trials with children still happen too. The enemy doesn’t take a break from all of that just because we're being challenged along the health path, especially since we have made our faith journey public. 🙏🏻 We cherish your prayers, support, and love!