Enter Leroy
One of the experiences of being treated for cancer is the need to get medicine in the patient, and blood out of the patient… a lot. Because needles and children don’t really go well together, an alternative option is a port catheter, or “port” for short, that is surgically placed just beneath the skin next to the collar bone with a line running directly into the circulatory system.
It was suggested to us that Asher have one of these installed in a minor outpatient procedure, and we agreed. Prior to surgery, in one of the countless ways the Child Life specialists interacted with kids to make them as comfortable as possible, they brought Asher a… doll? This “doll” was a soft, flat-ish looking fellow that had his own port. The Child Life specialist used it to demonstrate how the port works. Asher, who already had soft spot for medical things (mostly army medics), was fascinated. The doll was christened “Leroy” (Lee-roy) and, along with his port accessories and other random medical stuff, was a long-time patient of Dr. Asher.
February 3, 2019 Update:
Not a day goes by where we aren’t amazed at how God continues to grant us peace, give us joyful times with family and friends, provide for us, and display His love toward us. Please join us in thanking Him for continuing to answer those prayers.
This week is a big week for us. Tomorrow, Asher will have a minor surgery to install a port on his chest so that he can be given medication and have blood drawn in the future with minimal discomfort. Asher is now keenly aware of how anesthesia makes him feel (groggy, tired, emotional), so please pray that the recovery time would be minimal, and that he wouldn’t feel anxious about it.
The procedure went well, and it went fast. So fast that we got a call from the hospital while we were ordering our lunch that he was in recovery. It was one of those shameful parent moments, because we weren’t even on campus. I managed to grab an Uber and get back to the hospital in 15 minutes. By the time I got there, Asher was clearly upset with me. Most of it was “hangry” since he hadn’t had much to eat, but “hangry” plus “post-anesthesia” plus “get me out of here” did not make for a happy patient. I still feel bad about it.
Tuesday, Asher will have a “dry run” of radiation therapy, where they will go through every step of his radiation procedure, without actually giving him any dose of radiation. Pray for the doctors as they finalize his treatment.
Also on Tuesday, we will have our first meeting with the Quality of Life team at St. Jude. This is an important meeting for us, as we will discuss not only Asher’s quality of life here, but long-term care as well. I expect this will be the first of several meetings, but pray for Leah and I as we begin to actively consider difficult things ahead. Pray that we have wisdom and think clearly in making decisions. Pray that we continue to have hearts of gratitude. Pray that when the discussions are over, that we can set those thoughts aside, and return to focusing on being present with our family. Pray that when those thoughts come to our minds as we go about our days, that we would immediately turn from dwelling on events yet to come to praying about those events, thereby casting our cares on Him.
Among other amazing teams in the St. Jude system, I can’t find the words to sufficiently describe the Quality of Life for All team, affectionately code-named QoLA (koala). The tender-hearted kindness and accessibility of these people is difficult to match. What kind of heart-capacity does one need to be able to hold the hands of so many families going through something so awful? It’s super-human to me.
Wednesday, Asher will have his first radiation treatment. He will get three days of treatment this week. Next week it will ramp up to five days per week for 6 weeks. Pray that Asher would not feel sick. We believe that God is sovereign over every square inch over the universe, even radiation. Pray that we would continue to trust that His will is being accomplished for Asher’s good, and God’s glory.
The start of radiation treatment marks the beginning of what we think will be more routine and less chaos in our schedules. Pray that we can make the most of it. Pray that we would be wise as we plan to make space in our calendars for more family and friends to visit. Pray for our friends who are helping us manage those visits, as well as coordinating a lot of things back home in our absence. If you know them, please take a moment to thank them, and if you see a way you can help them in their personal lives, please don’t hesitate to offer assistance.