Thank you all for your continued prayer for Amos and our family this past week. As we mentioned in a previous post, Kelli and I have decided to begin posting less frequently. Mainly because, thankfully, there is less to report about in urgent terms, and the prayer requests are remaining mainly the same as we move into recovery. Also, we have begun to find a new “normal” as our schedule is becoming more predictable, which we are all enjoying!
This was a great week. Below I’ll give a day-by-day “highlight reel” for Amos. But I also wanted to note that I have put all of our initial Amos Updates on this site. Everything that we emailed or posted on Facebook before we had this site up and running you can now find and read by clicking here, or by hovering over the “About” menu at the menu above and clicking on “Updates #1-25.”
Amos began his second week of radiation treatments today. He is getting more comfortable with his “new routine” in the morning, and even seems to enjoy his ambulance ride across the street each day to where he receives his treatment. The most exciting news from today was that, during his occupational therapy session, Amos took three assisted steps! Essentially while his therapist was holding him upright and supporting his weight, Amos was able to maneuver his legs as usual to walk. We were amazed! This was a great sign that he has not “forgotten” how to do it, and even though he has a lot of strength to regain, it is very important that he will be capable of walking when that happens. Praise the Lord! Amos also got a very special new therapy today as well – acupuncture. Yes, CHOC has it all, even acupuncture and massage therapy, which are administered by a doctor who happens to be married to Amos’ brain surgeon! We figured we might as well give it a go, and Amos seemed to actually benefit from it by calming down and resting well afterwards.
Today was a very busy day! Amos continues to amaze us with his tenacity and energy each day. We are told that radiation will eventually leave him very fatigued, but thus far Amos has hardly napped during the daytime. Instead, he has had a very helpful and engaged attitude about his therapy. He’s even got a sense of humor about it a lot of the time, intentionally being silly and acting like a stinker by doing the opposite of what his therapist asks him (“Can you point to the bunny?”) and then laughing about it. One highlight from today, aside from continued walking practice, was when Amos got to do some finger painting! You can see his fine artwork to the right here. Amos also got a real bath in a real bathtub, sitting in his special lounge chair, and he enjoyed it a lot. We also got to wash his wild hair and cut his toenails at long last! Little blessings, people. Even clean feet and fresh socks do wonders.
It was a harder day for Amos today, we think because of the high octane schedule that keeps coming each day. Although he had a decent night’s sleep, Amos was much more grumpy and cranky today, particularly on his ride across the street for radiation. His pent up frustration came out many times, including when Luke came to visit and Amos wasn’t much willing to share his toys and cooing doctors. Still, Amos did well in therapy and was fairly willing to engage. A highlight came right after Amos woke up when, from across the room, I saw Amos pick up his stuffed Kipper dog with both hands and start to play with him and use his imagination all on his own. Quite an encouragement to see that initiative! Amos also did more walking practice today, and received his acupuncture and massage therapy too, which again helped him really calm down and rest.
Amos had another mediocre night’s sleep despite his high level’s of activity during the day. Again, while we are so thankful for the tenacity that Amos is showing when he gets a chance to be up and moving, the negative repercussion is that his fatigue is making him crankier. It is very challenging to know how to help Amos and provide useful guidance and discipline for him under the circumstances. This week we have seen him more clearly mentally present than ever – he is quite obviously all “there,” although he cannot speak still – and physically able, and to a certain extent we are weighing how normally we should deal with what appear to be typical 3 year-old meltdowns. Please pray for wisdom as we parent our dear Amos! A highlight from today – well two, actually – was seeing Amos play very deftly with his toy Ninja Turtles flashlight. It has buttons on it that he was pushing very well, and shining it around the room (and into people’s mouths, like the doctors do). His fine motor skills are returning well, which came out in another way, too. During an occupational and music therapy dual session, Amos was able to stand up almost entirely on his own and jam on an electric keyboard situated on a bench in front of him, good finger movement and all. He did so well! His strength is returning in major ways, and it is such a joy to see him getting his music bug out and have such fun doing it. Today was also the wonderful day that Amos began to utter some sounds again.
Amos and I had a fabulous night’s rest and a good morning. We are not sure why, but Amos has become less and less excited about his ambulance ride across the street each day for radiation. He gets very upset now and starts to cry and kick, and it makes the morning much more difficult. Once we are out of the vehicle he usually calms down, and the treatments have gone very well overall these past few days. This is the end of the second whole week of radiation! We are so thankful. Amos did well again today with his physical and occupational therapy, which included further jamming on the keyboard. Amos was able to stand almost entirely on his own steam while doing some great piano playing with both hands and all his fingers! He was also allowed to use his Passy-Muir Valve (PMV) again, which is the little doodad that attaches to his trach to allow him to speak more easily. He wore it for almost an hour today, which is a really great sign that he can handle the exhalation aspect of speech despite the continued lack of cough and gag or vocal chord control. Our speech therapist is really pleased, and has told us we should work with Amos using his PMV each day as much as we can.
Reflections on our Week and Things to Come
We are so thankful for this week. What a big one it’s been! Amos’ attitude and tenacity has been such an encouragement to Kelli and me. He is such a wonderful little man even under such duress, and we are so thankful for him. It became clear to us (and our doctors) this week that the best course of action for Amos is to stay in the hospital through the remainder of his radiation therapy. The primary reason is that while he is still inpatient, he can receive regular, concentrated and specialized therapy every day. If he were to be discharged, that would not happen nearly as much, and thus his progress would slow down significantly. He is closest to excellent care right where he is, and as unappealing as sleeping in the hospital for the next month is to all of us, it is the best choice. That said, many of our doctors this week have repeatedly expressed their amazement at Amos’ progress. Just this week alone he went from very tentative, heavily assisted steps on Monday to ten minutes of almost completely unassisted standing and piano playing on Friday. It has been amazing to watch! We have had several comments that give us hope that, by the time we do discharge in about a month, Lord willing, Amos will have made enough progress to not need his trach or feeding tube anymore. That is certainly our prayer, and more!
Please continue to pray that:
- Amos would continue to make great progress with his therapy and rehabilitation each day and each week
- Amos would maintain his strength and sense of determination to get home soon
- Amos, conversely, would be able to rest during downtime and get into a more normal nap routine
- Amos would have confidence and peace when we get into the ambulance each morning to go across the street for radiation
- Amos’ cough and gag reflex would return in full, along with his vocal chord function
- Amos will make excellent progress through the course of radiation, and be able to have the trach and feeding tube out prior to discharge
- Kelli and I would have endurance as we continue alternating nights sleeping in the hospital for the next five weeks or more
- The radiation therapy would be completely effective, with no negative side-effects or delays until it is finished
- Our doctors would begin to communicate with our medical team back in Cambridge successfully so that everything would be perfectly prepared for our eventual return
- We would have wisdom as we, along with our doctors, determine whether and how Amos will receive chemotherapy treatment after radiation is over
- Ultimately, there would be no more cancer in Amos at all, ever
Please also praise the Lord for all the ways that we have seen him hear and answer our prayer for Amos over these past many weeks!
Thank you again, dear friends.
But seek first the kingdom of God and his righteousness, and all these things will be added to you. Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. (Matt. 6:33-34)
Love in Christ,
Will, Kelli, Amos, and Lucas