August 16, Weekend Update #41

Dear friends, we made it through week three of radiation! Hip Hip Hooray for Amos and Praise the Lord. We are so thankful that these weeks are flying by and that Amos continues to handle things well. Each day is so full that before we know it, it’s the weekend. Here are some highlights from the week …

Monday we spent the day getting back to business. The most important item on the to do list was poopy. Amos has been holding back, if you know what I mean, for a whole week by that point. Try as we might, he resisted for too long and had to face the dreaded laxative cocktails. They prevailed, slowly but surely … finally getting things moving just this weekend!! In related news, Amos sometimes holds in his tinkles for way too long, although we aren’t sure why. Monday, we coaxed him onto his big boy toilet seat (which we actually brought with us from Cambridge) and he immediately relieved himself, since he is such a big boy. I guess he really was potty trained! So we might be negotiating trips to the toilet on occasion … he is so proud.

Another funny moment from Monday happened in his PT session. This was at the end of the day, after he’d worked really hard with OT and speech therapy earlier. He was doing an incredible job standing up all on his own against a bench and trying to play the piano, but his head just kept sinking lower and lower as he got more and more tired. The therapist kept asking him to hold his head up, and Amos finally complied by taking both of his own hands off the piano and lifting them up to clasp his head – so as to hold his head up. It worked! Clever boy.

The rest of the week unfolded with the usual routine of radiation in the morning followed by therapy, rest, therapy, etc. One of the things I like the most about our schedule is that we get the “worst” part of the day over first. Amos continues to not enjoy the ambulance ride and it’s always a bit stressful. We try to bring different diversions each day – he gets to bring a different stuffed animal friend to ride in the ambulance and go with him to radiation each time. A few times this week Amos woke up very roughly from anesthesia, with lots of flailing and crying. Though that is not an unusual response to the meds, it was something we hadn’t seen before. I will just say that he is very strong when he gets angry! However his mornings go, though, he always enjoy arriving back at his room and getting settled for the day.

In therapy, Amos continues to progress in really encouraging ways! PT and OT help him with muscle strength and coordination. He’s gaining endurance and is able to stand with assistance while he plays his keyboard, draws, or plays the drums. IMG_0315They also let him try out this nifty stand up walker that helps him practice walking – by Friday he could make it all the way down the hall! It’s amazing to see him taking actual steps and leaving his room on his own two feet. What a gift! We are praising the Lord for Amos’s continued physical restoration in (almost literal) leaps and bounds.

A big highlight for me this week was Amos’ first word in speech therapy, which was, of course, “ma-ma”, and my heart continues to soar every time I hear it. Amos loves using his PMV (the speaking attachment on his trach) and mostly he enjoys roaring like a lion and trying to “scare” his doctors and nurses – something he thinks is hilarious. In the picture here he is roaring at his lion, who we creatively named Aslan (although Will suggested ‘Cecil’ I told him it was too soon).

Here he is "roaring" with his lion!
Here he is “roaring” with his lion!

Besides roaring, Amos is working on “M”, “B”, and “P” sounds. Will would tell you that from a linguistic standpoint, these sounds are called labials, because you make them with your lips. I’m glad there’s a linguist in the house to build on what the speech therapists are doing with Amos. They think it’s pretty cool too!

Another very exciting breakthrough in speech this week – and a wonderful answer to prayer – is that Amos can cough!! Yep, that’s right. We can officially take the “cough” request off of the prayer list. Woohoo!! Amos can cough on command with his PMV on and his therapists are impressed and excited for him. He still doesn’t have much of a gag yet but he seems to be regaining some sensitivity there. There may even be some swallowing going on … Time will tell but we are so thankful for the progress on this front. All signs are definitely pointing to his “decannulation” (taking the trach out) being part of the plan for the near future. It’s a relatively simple procedure that will include a scope test to look at how his vocal chords are functioning, capping the trach, and doing a few sleep studies. If he succeeds on all those fronts, they can simply take out the trach and sew him up. Amazing.

Thank you for praying for his sleep and rest this past week. We started off with some really rough nights but ended on better notes. There are many things that can interfere with his sleep and since we can’t always know what troubles him, we’ve been trying to do our best to eliminate interruptions. This means Will and I have had to advocate strongly with Amos’ care team for him to be left alone during bedtime hours (so you can guess how much we are sleeping). It’s easy to understand how the nurses operate at night because so often, inpatient oncology kids are classified as “critical care”, which means they need constant attention. Thankfully, Amos doesn’t fall into this category anymore, and yet everyone seems so used to operating within that category that it’s been a challenge to “fend off” the well-meaning staff. We know that everyone is doing their best to care well for Amos.

In all of these things we continue to be ever grateful to the Lord for His faithfulness to us and to Amos. Knowing Him through this experience has literally made all of the difference in terms of our ability to cope on basic levels and carry on with life in surprisingly normal ways. One of the hospital chaplains, John, stopped by for a chat this week and he was asking me about what kind of coping mechanisms I had developed. I was standing there at Amos’ bedside trying to say things that took his little ears into account and I said to John that the most helpful thing when we are frustrated or angry or discouraged is remembering who God is in those moments. The beautiful truth of it is that He is the same, no matter what each moment brings. He is the same. He is Amos’ Father, Shepherd, and Keeper. He is wise, good, and all-knowing. And He loves Amos and me more than we can ever know or imagine. Amos was smiling and nodding while I said these things and I couldn’t be more thankful for the painful but wonderful opportunity to share these moments with Amos. We pray that his faith will continue to grow even in this severe trial.

Something that I continue to think about is the handful of conversations that I’ve had with Amos about heaven over the past year. Living right next to a large and lovely public cemetery that is used very much like a park, we had so many walks and talks there. One time Amos asked me, “What is this place for?” So I told him something probably ill-thought-out about death and dying, but I was able to end with, “and the people who love Jesus get to be with him forever.” I’ll never forget how he turned around on the path in front of me and said without pause and with a smile on his face: “Nice!”. His child-like joy at the thought of being with Jesus blessed me then and convicted me as I realized my own lack of longing for eternity with Christ. His anticipation of heaven was unhindered by the cares of this world. And now in the midst of his own illness I am so thankful for the ways in which Amos remains confident of Jesus and his love for Him. May it remain so for all the days of his life.

Please continue to pray:

  • For successful radiation, without any unforeseen delays. That the cancer would be completely gone and never, ever return.
  • For patience and ease as we endure the ambulance rides.
  • For complete and even miraculous healing of Amos’ body and mind in every way. That he would have no deficiencies to carry away from this experience.
  • For Amos’ gag reflex to return so that he could swallow food once more and adequately protect his airway on his own.
  • For peaceful and healing rest each night this next week and also for quality naps each day.
  • For Will and I to have wisdom, grace, and patience as we parent Amos and juggle his schedule and care team.
  • For Amos’ pressure sore on his head – that this would heal perfectly and that there would be no breakdown of the skin as is a concern at this point in the radiation schedule. Please pray especially for protection of the shunt, that it would be protected from any infection and that the skin wouldn’t breakdown and require an repeat of the surgery.

Thank you all so very much.

“The Lord God is a sun and shield; the Lord bestows favor and honor. No good thing does he withhold from those who walk uprightly.” Psalm 84:11

Love,

Kelli, Will, Amos, and Luke

P.S. Keep an eye out tomorrow morning on The Gospel Coalition site for a post Will wrote about this journey.

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5 thoughts on “August 16, Weekend Update #41

  1. Thank you Lord! I’m so happy to hear this wonderful news about dear sweet Amos. I’m especially thrilled to read your last paragraph. Along with sharing the ups and downs of Amos’ recovery, you and Will are sharing your faith with me and others. I’m so grateful for you all and I’m praying for you!

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  2. Thank you Kelli for this post, especially the pictures! Your family’s honest response to this terrifying diagnosis has been a ministry to me and, I am sure, many others. You are all in Ginger and my prayers of both petition and gratitude.

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  3. Thank you, Kelli, for the update. I especially love seeing Amos roar with Aslan and his authentic response about eternity. It touched me deeply! God bless you and keep you!

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  4. I pray for your little one daily…..as I was praying and thinking about his ride for his radiation treatment I wonder if you had a special song maybe something like the wheels on the bus go round and round, but adapt it to the situation. Maybe he could be the rhythm section with a bell to ding or a tambourine. I so hope this could be a happier experience for him and in turn easier on mommy and Daddy. You are both doing a wonderful job, but just a thought from this gramma.

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

    Thanks for your encouraging newsy letter–it is good to hear from you, to know that Amos is progressing, that you and he are well cared for, and that your hope is in the Lord. May the Lord continue all of these blessings in your lives. As the hymnist wrote, “Only Jesus, only Jesus, only Jesus can do helpless sinners good”, a goodness that is for all of our life in Christ, from now into eternity.

    Much love and prayers for God’s mercy,

    fred (for all of us)

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