Dear Friends and family,
Thank you for your continued prayers! It’s been a fast 10 days since our last post – as usual. We’ve been busy seeing Amos through the ups and downs of round three of chemotherapy and then getting ready for the last round – which started today! It was strange to drive Amos to CHOC this morning and be excited about getting chemo, knowing that it was the LAST time. We are so thankful to have made it to this point and we are beyond excited to see how Amos will progress once he truly enters the rehab stage fully. There’s still a lot to accomplish but entering into this last round of chemotherapy feels like such progress! Thank you for praying.
These past few weeks have been a bit slower than the last few rounds. As we mentioned might be a possibility in the last post, Amos did have to go back to CHOC for two days with neutropenia (fever as a result of low white blood cell counts) and Luke was sent away for another stint at Gigi and Grandpa’s due to a cold. But after 48 hours Amos was just fine, and made it home last Friday afternoon in good spirits and better condition than when he went in. Amos was a bit more weary this past week and we know that is attributed to the cumulative effects of the chemo drugs. We expect this round to be even slower for him and pray that he and we can endure with patience knowing that he will only get stronger moving forward.
We apologize for not updating sooner but Amos was not able to have his sleep study last night, which we asked you all to pray about. We decided to reschedule it since he’s had a bit of a cold and we want to give him the best chance of success for this study. Again, this is the sleep study where they will leave the red cap on his trach and if he does well – if so, the doctors will take his trach out (!!). We are REALLY excited by the prospect of Amos not having a trach anymore. But we also know that rushing these things isn’t helpful so please join us in praying that we would get the sleep study rescheduled in a timely fashion, that Amos would be ready for it when the time comes, and that he would pass the test with no trouble at all.
We are all so weary of the trach and the attending respiratory issues surrounding it. Nights are still very long and wakeful for Will and I as we monitor Amos on as many as three different machines (which all work more or less well and muddy the waters sometimes on too many occasions!). Just this week Luke fell asleep in the car while we were out running errands and I realized how amazing and freeing it felt to not have to worry about him breathing, breathing well enough, holding his breath, etc. It’s a sad reality that we must always face with Amos and one that is a real threat to a peaceful heart. Oh and to sleep. That thing we used to get!
A recent development and item of prayer – one of the chemo drugs that Amos has received is causing some side effects. It’s not uncommon for kids getting this particular chemo to experience what is called nerve neuropathy, particularly in hands, feet, or both. Amos is showing signs of weakness in his hands. Thankfully, this seems to be mild and something easy to work on in therapy. Mainly, his hands have become very weak and he tends to struggle to straighten his fingers out or grip firmly. He can still use them well enough but his dexterity has decreased. We are not sure what therapy will look like or how long it will be necessary so please pray for speedy and quick recovery of those little hands.
Overall, Amos continues to amaze us and we are so thankful for him. Sometimes we are able to step back and look at all that he has endured and overcome and it is incredible. We know there is so much more to do but as we near the end of formal treatment (ie- surgery, radiation, and chemo), we look at this little boy and know that the Lord has made him exceptionally brave and strong. We are thankful to know that the Lord made Amos specifically for each and every day that has been written about him, including all of these excruciatingly difficult ones. Please pray for Amos to continue to persevere and fight hard. Please also pray that Will and I would know how to encourage and motivate him as he tries hard to work on swallowing, walking, using his hands, moving his tongue and all his other therapy tasks. Most of all, pray that Amos would know the love of his heavenly Father through all of this.
I’m sure there is much more that I could say! Thank you so much for your prayers, Christmas cards, and various modes of encouragement. We continue to be thankful for the body of Christ which surrounds us even as we are so physically absent from you all. And many thanks to the churches here in California that have reached out to be the body of Christ to us even as we are strangers to them.
“Come, thou long expected Jesus,
born to set thy people free;
from our fears and sins release us,
let us find our rest in thee.”
Kelli, Will, Amos and Luke
And now for some pictures! (scroll over for captions)