Friday the 11th of December

Dear friends and family,

It is hard to believe that the Christmas season is almost halfway through. Time is flying, and in positive ways for Amos’ progress and recovery. As of our last post, Amos has finished with three out of four scheduled rounds of chemotherapy. He discharged a week ago from Round Three and we have been holding down the fort in Irvine since then. 

Sadly, shortly after Amos got home last Friday evening Kelli and I realized that Luke was sick. So off he went to “quarantine” at Grandpa and Gigi’s house for a few nights. Thankfully it was just a cold and he recovered and was back with us by Wednesday. It’s not a risk we can take to keep Amos and Luke together  if there is a cold (or worse) in the mix. 

Amos has had a very good week, regardless, and is holding up very well even this far into chemo. He continues to wear his “red cap” over his tracheostomy (a term, like so many in the medical world, transliterated from Greek to make the stark somewhat more mysterious and elegant. “Tracheostomy” means “throat hole,” more or less). As we mentioned, the cap is essentially a plug to block off the trach opening (see picture below). After reducing the size of his trach and introducing this cap, Amos has done exceptionally well breathing without the extra airway that the trach otherwise provides. He wears the cap all day now instead of his purple Passy-Muir speaking valve like before. This switch is a crucial part of the process of doing away with the trach altogether (cumbersomely known as “decannulation”). 

Amos has a few hurtles ahead before we can ring in the new year. 

First, as I write this Amos and I are at CHOC getting him some red and white blood cell infusions. It is normal and consistent with previous rounds for him to need this a week after inpatient chemo. It takes a handful of hours, but we get to go home afterwards (late!). So long as he resists any infections or fevers, he won’t need to be admitted until his next full round of chemo in about ten days. We are up at CHOC a few times a week anyway,  however, for blood checks, mini-chemo infusions, or therapy, however, so we don’t get too much time away! Thankfully, Amos sincerely loves it here so it’s “easy” to return so often for daytime errands. 

The next major hurtle is an overnight sleep study. Amos has had two of these so far to make sure he is respiration and oxygenating sufficiently through the night. There have been many complications to these tests that I won’t rehearse here, but basically Amos will need to sleep the night with his red trach cap on, breathing safely and sufficiently without his spare airway. Doing that successfully is the criteria for removing his trach (besides a minor scope test to check the airway “plumbing”). This sleep test will take place on the 20th, and we will then stay inpatient for the fourth (and final!) round of chemo. 

That is the other major hurdle before 2016 chimes in: Round Four. With it being the final installment, it will be toughest on Amos as the treatments are cumulative in some ways. As long as there are no delays or complications (like Round One), we will discharge on Christmas Eve. 

 Please pray:

  • That Amos would resist fevers and infections in the next three to five days until his blood counts recover
  • That Amos would clearly and easily pass his sleep test on the night of the 20th
  • That Round Four would go smoothly, and that we would discharge on the 24th
  • For our family to not just endure this Advent season, whether we are together or apart, but to grow in love for the Savior it heralds. 

He comes to make His blessings flow far as the curse is found. 

Love in Christ,

Will, Kelli, Amos and Luke
 

Getting an infusion
 


11 thoughts on “Friday the 11th of December

  1. Your courage and sustained energy to walk by faith day after day is a testament of God’s faithfulness. Blessings to you during this advent season.

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  2. The Lesesnes of Chapel Hill have been following Amos’ and your journey with very thankful hearts, and will continue to hold you all up to the Throne for peace, comfort and full healing!! To God be the glory, great things He has done and will do in all of this. Hank, Jean, and Marcy

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  3. As in the past, I continue to think of all of you and pray for little Amos. What a true little hero he is to handle this crises as well as he has–with family support and love/caring/prayers for all who know about him. So many care–so many prayers–I believe in prayer. Date: Sat, 12 Dec 2015 02:22:16 +0000 To: patsymoore@hotmail.com

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  4. Continuing to pray daily for sweet little Amos and for your entire family!!! Lots of love and hugs!!

    Sincerely,
    Krisann Van Hoosen

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  5. Dear Amos,
    When I see a picture of you on my computer I take my finger and make a cross on your forehead and pray for you. It helps me feel like I am touching you with the touch of Christ. Of course the real, alive, Jesus is touching you with His healing hand all the time as are your doctors and nurses, but I just wanted you to know that I reach out and touch you too – on my computer screen. 😉
    I wonder what you and Lukey will be doing for Christmas? Hmmm I will have to wait for the next email from your mom and dad to find out. Advent is about waiting isn’t it, so I better be patient. We are going up to Vermont where we hope to see snow with Gwen and her girls. We will take a sleigh ride for you and your family if we do have snow. Right now in Philadelphia it is 70 degrees!!!
    Love the Powlipeople

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  6. Dear Will, Kelli, Amos, & Lucas,

    Thanks for this good report; may the Lord use these treatments to his good purposes in Amos’s life and yours (and ours), and may these seasons of Advent and Christmas bring us all increased trust and hope in Christ.

    Praying that you will know the “Softness and peace and love and joy and bliss” (Herbert) that come from the prayers of those who know you and love you all.

    From our home to yours,

    fred

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  7. Not sure if this works to reply! Just wanted you to know your Grove City family is praying for you and your dear family.

    Melissa

    Melissa A. MacLeod ’96
    Senior Director of Alumni and College Relations

    Because faith and freedom matter.
    [Description: cid:image001.jpg@01CD2DB8.2DC044A0]

    100 Campus Drive | Grove City, PA 16127-2104
    p. (724) 458-2050 | f. (724) 458-3334 | Toll-free 888-GCC-GRAD
    MaMacLeod@gcc.edu alumni.gcc.edu

    [gcc-facebook-32_red] [gcc-instagram-32_red] [gcc-twitter-bird-32_red] [gcc-youtube-32_red] [gcc-linkedin-32_red] [gcc-youvisit-32_red]

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  8. Thank you for continuing to make the time to share Amos’ progress with us, especially considering the effort you both are doing to care for your family. It is a blessing to follow along and hear of the progress that Amos is making and it helps my prayers stay relevant. May our Lord prepare your hearts for Christmas and keep you all well.

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  9. Think of your family often and pray that the day will soon come that life can get back to a more normal pace. Amos is such a strong little guy. Will be so glad when his final round of chemo is over. Love, Aunt Patty

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