Thank you for your continued prayer! This past week has been a blur of activity – thus our missed midweek update! Amos is doing well and we all continue to enjoy having him home. We haven’t been able to get him started with outpatient rehab and therapy, as we had hoped, but Amos is doing quite well on his own in his physical recovery. It usually takes 2-4 weeks to get enrolled in outpatient therapy so since we are leaving to return to England so soon it’s not that much of a loss.
Speaking of England, I’m not sure that we’ve mentioned on here that we finalized our travel plans and will be returning to our home in Cambridge on September 28th. That’s right, just one week from tomorrow!! We are thrilled, excited, nervous, and thankful all at the same time. In terms of plans for continued medical treatment, Amos will begin four rounds of chemotherapy as soon as we get home, so we have a lot ahead of us. But we are confident that going home for the next phase of Amos’ treatment is a good plan – and the doctors at CHOC and at Addenbrooke’s, where Amos will receive care in Cambridge, have been very supportive of the transition. Please pray for us as we seek to iron out all the details of this transition. It is looking like Will is going to “intermit” a term at the University, which basically means hitting the pause button on his degree until Christmas, as long as it is approved by the Powers that Be.
So back to this past week … a few highlights! Amos and Luke are loving being together. One of my favorite things is when Amos puts on his twisty stethoscope and plays “Dr. Amos”. Luke has learned to scuttle over next to Amos and let him listen to him. It’s very cute. Luke has now also taken to wearing the stethoscope around his neck whenever Amos lets it go – he’s a fast learner and watches everything that Amos does! We are so very thankful to see them together again.
Amos is also making great strides with his speaking. His tongue movement is still very minimal but his words improve daily, as does his confidence! He’s constructing sentences and saying many of the things he used to say in response to the normal events of life. It’s hard to describe how wonderful it is to begin to hear what’s going on in his mind again and have conversation with our little man. We still struggle with understanding him but he’s very patient with us! We are encouraged that he’s talking more and more.
Amos is progressing physically too. His balance, coordination, and overall strength are noticeably improving each day. With funds from many of you all, we were able to purchase Amos the astoundingly expensive walker (his “speed racer”) that he’d been using in the hospital. Thank you!!! We knew we didn’t want Amos to have to stop the progress he was making with the walker and your gifts made this possible. The company even managed to rush it for us so that he only missed it for about five days. We are truly grateful. Amos has the red version of the walker, which of course goes much faster 😉
Thursday and Friday of this past week were spent at CHOC for checkups and an MRI. Everything went well but was extremely tiring for all of us! One of the highlights though was getting to go up to oncology and see all of Amos’ nurses and doctors. He was SO excited to see them that once we got out of the elevator, he literally began running down the hall in his speed racer. He was pulling off tricks, too, where he would get a running start and then pick up his feet and glide with the walker down the hallway, laughing like a madman. It was so fun for all of us!
Another aspect of Amos’ ongoing care has been through acupuncture. We began seeing Ruth while we were at CHOC and we’ve continued seeing her on an outpatient basis. Ruth is the director of the Integrative Complementary and Alternative Medicine Program at CHOC, and works with Pediatric Neurosurgeon William Loudon. As the Lord would have it, Dr. Loudon performed Amos’ brain surgeries and is also Ruth’s husband. They are quite a team and we are so very thankful that they are part of Amos’ team! Amos really enjoys playing with the toys in Ruth’s office and he barely even blinks at the (very tiny) needles.
One last mention from this past week was our trip to Zoomars – a local petting zoo. I know our doctors at CHOC might be cringing if they read this, but to be fair, we brought loads and hand sanitizer and we were very careful (if overly ambitious). This was special because just a few days prior to all of this unfolding back in June, we had spent an afternoon at Zoomars. Seeing Amos back there, riding the little train and feeding the guinea pigs was such a delight! Amos was so much more excited and engaged in the activities more than we thought he would be.
Here are some ongoing prayer requests:
- For Amos to be able to swallow and for this to happen soon!
- For continued improvement in Amos’ tongue movement.
- For Amos to continue to progress in speech and physical rehabilitation, particularly his sense of balance.
- For Amos to sleep well (so that we can too!).
- That the University would approve Will’s request to intermit Michaelmas term.
- For our appointments this week, that they would go well and that Amos would especially be able to get his stomach feeding tube switched out for what they call a “mickey button”. This would remove the length of the feeding tube and instead allow for a small button that would be flat against his stomach. With Amos being so much more active, the long feeding tube is really difficult to keep out of the way!
- For Will and I as we make plans for our return to England! That we would be organized and efficient with our time and that we would prepare practically, spiritually, and emotionally for this big transition.
- For a meeting that is scheduled to happen at Addenbrooke’s in Cambridge on Tuesday. This meeting will be attended by the team of people coordinating and providing Amos’ care. Please pray that it would be a very productive meeting with many decisions made. We particularly hope for a clear schedule so that we know what to expect when we arrive.
- Lastly but never least, that the Lord would preserve Amos’ life and allow him to be cancer free.
Thank you for praying!! We know that in all things, the Lord continues to care for us and for Amos.
Kelli, Will, Amos and Luke
[Click to enlarge the pictures below]