Hi All - It’s been about a month since our last post and sadly a LOT has changed since then.
Jas went through 2 more rounds of chemo since the last update. While the 3rd round of chemo went as smoothly as it could, the 4th round was just unbearable. For those who aren’t aware, the side effects of chemo are cumulative and get worse with each round. As a result, things really came to a head after round 4 with horrible side effects. And while he usually sees energy return by the weekend of a chemo treatment which then leads to a fairly decent week following, no energy returned this past time. This hit him HARD! Knowing he went into chemo treatments with the mindset of continuing this path as long as his body can tolerate the side effects AND it provides him a better quality of life, we have now reached the point where neither are true.
Last week Jas made the decision to discontinue chemo, cancel all future appointments and transition to hospice care. This was a really heavy week emotionally to work through individually as well as a family. With Taylor being older, she was already more aware of what this means, so of course that can be scary to hear those words. Quite frankly, while I knew it was on the near horizon, it still took my breath away to hear the request and took time for me to process. With Tyler, we made sure he understands that the goal of hospice is to make dad as comfortable as he can be and to make it easier for dad to receive care from the home. We have seen how much of an effort it is for Jas to get into the car, manage through the car rides where any bump, pot hole, quick stop is so hard on his body and then use what energy is left to get through a Dr. appointment. Even talking at this point is so hard for him as it requires so much energy which he no longer has.
This past weekend was filled with meeting our hospice team, transitioning Jas to a new pain med plan to make him more comfortable and help with his labored breathing, changing scripts to being delivered to our house (which is amazing that I’m no longer running to the pharmacy multiple times a week), and setting up our living room with a hospital bed and other essentials for when he can no longer make the flight up to our bedroom at night.
I will say, we are very much at peace with this being the right decision for the stage Jas is now in. To know that I can call hospice 24/7 to help and that they can come out to provide the support he needs now feels like a relief to both Jas & I.
What does this mean for the near future?
Well, his weight is at his lowest point yet. His pain levels are increasing and it is becoming more and more painful to eat more than a small amount of food a couple times a day. We will keep him at home as long as we possibly can and while hospice can continue to keep his pain managed from home. We have been able to talk to the kids about what they are most comfortable with and have a plan in place to support Jason and their wishes for when that no longer is the case.
Is Jas able to see visitors?
Due to Jas's current state, we are significantly limiting visits to allow him to rest as comfortably as possible. If considering visiting, please FIRST check in with Megan via text @ 808-634-5131 to see if it’s a good day/time. His pain/tolerance can change drastically by the hour and is consistently much higher from late afternoon through the night. We wouldn’t want you to waste your time making the trip to then not be able to see him. Other options are to send a video message, email or text that he can read at a time that works well for him.
Have we continued to see God’s hand throughout the hard times and be encouraged that he sees us, hears us and loves us?
YES! A continued BIG YES! We continue to be FLOORED by how God has orchestrated such an army of love and support through those here on earth to help us! The continued prayers, cards, texts, meals, surprise special treats, help with kids, gift cards, checks, specialized medical help at home, special accommodations for our family including helping transfer our child to a different high school class after the required deadline, etc. are all SO MUCH APPRECIATED! We truly do feel so loved and are so THANKFUL!
One specific example was the week of Jas’ 4th round of chemo. It was an awful week from chemo not going well and Jas was noticing there was a correlation between where the lung catheter was located and the pain/discomfort he was feeling on that side of his body. We decided to ask NIH if they could remove it that week because the pain was becoming intolerable and the fluid the cancer had been producing had completely stopped. Their initial response back to us was that the OR was fully booked that entire week. Within a few hours, they had Jas booked for the procedure and all the pre-work up appts scheduled for 2 days later. THANK YOU JESUS! Mountains were moved! We are so thankful, as that did relieve some pain that Jas had been experiencing for the 2 months that it was in there while it was needed. A HUGE PRAISE that the chemo shut down the secretions from the cancer in his lungs!
Another cool example is that Taylor desperately needed new volleyball shoes with the High School Volleyball season kicking off. When I say desperately, I mean holes in the shoes, bloody heels coming home from practice because the heels had cracked, etc. after wearing them for a full club and high school season prior. The same weekend we started looking for shoes, a Dick’s gift card arrived in the mail, from Jas’ co-worker, to cover the cost. Divine timing for sure as very few knew of this need and we are SO APPRECIATIVE!
These words continue to ring true in my ears…. exceedingly, abundantly above all that we ask or think. (Ephesians 3:20) His provision continues to blow us away!
