It’s Saturday again and I can’t believe how much I have to report! It’s been a very busy 10 days or so since our last update and Amos is doing very well. Thank you for praying for his scan last week. The MRI results were good and our meeting with Amos’ neurosurgeon was encouraging. We do need to repeat the MRI in 4-6 weeks per the request of Amos’ oncologist. No one is concerned but they want to double check what looks like a bundle of nerves at the base of his spinal chord. While we would rather not have to repeat the scan, we appreciate how thorough and conservative Amos’ team is. Otherwise, the location where the tumor used to be looks clear, which is what we want!
Some very definite good news came from Amos’ bloodwork labs last week and this week. His counts are good all around! We are still stunned to report that there were NO fevers and thus no hospitalizations or infections after this last round of chemotherapy!! Who would have thought that the fourth and last round of chemo would be his strongest?? What a gift to be able to unpack those bags we had sitting by the door ready to go as soon as the fevers came … Thank you for praying.
Instead of two days in the hostpital, we stayed home and worked on other things! [Correction: we went to approximately 100 doctor’s appointments. But still!!] Our last update mentioned Amos sipping on orange juice and, wow, have we made progress! Would you believe me if I told you that Amos munched on pretzels (gluten free) and chips, drank a 6 ounce blueberry smoothie, and got to nibble chocolate all at Wednesday’s feeding therapy session?? Since then he’s tried a handful of other things and asked specifically for a hamburger and pizza (he got both!). We have been shocked at how fast he’s been able to move from swallowing modest amounts of liquids just last week to blended solids and then to good old, munch-able food! Granted, everything has to be broken up into itty bitty tiny bites and it takes him a very long time to munch and eat anything, but he can do it! And for that, we are all rejoicing. it is so very sweet to see him excited to eat again. It goes without saying that AMOS is excited about this sudden development too!
We are so thankful for Amos’ progress with his swallowing. Thank you for praying with us so long and hard. God answers prayer in His own good timing. It will be exciting to see how he continues to progress now. The mere act of chewing and swallowing involves so many muscles in his face that I can tell even after a week that he’s gotten stronger. His words are clearer and his facial expressions are more distinct. He also should be seeing improvement in his tongue strength as he eats more. His mouth is probably very tired from all of the sudden activity of this week. The right side of his tongue is still much weaker than the left side but we are praying that it will continue to recover with all the new exercise.
Many of you might be wondering where things stand with the trach now? Well, we continue to wait for the sleep study. Once we complete that, we should see some progress- hopefully in the form of a removed trach 🙂
A few have also asked about Amos’ eyes. He has been to one ophthalmologist already and has anther specialist appointment in a few weeks. He is able to see clearly, meaning he will not need glasses to correct his focus. But as you’ve probably noticed, his right eye is not quite aligned (interestingly, as Amos has recovered, most things have “returned” on the left side first, then the right, such as his hand movement and tongue, etc.). He is using both eyes, and they still seem to be improving. We are waiting to see where they stop recovering and, if necessary, we can then apparently have them adjusted to center with a fairly easy outpatient procedure. Isn’t medicine amazing!?
In the midst of all of this excitement, Will is back in Cambridge for work. He’ll be gone a total of two weeks but the good news is we’ve already survived a week without him! My good friend, “Auntie Em” is here again and I’m very thankful for her help and company! Our days are very full with Amos having upwards of 9 appointments each week. That means a lot of time in the car, a lot of missed naps, and many evenings where we all go to bed early – including the adults.
Luke is always along for the ride but he knows how to make the most of things, and we try to give him some “Luke time” too. He continues to develop into a very funny little man. You always know what Luke is feeling – intense delight and utter despair often appear in surprising tandem. He is very loving and very much into everything. If you leave anything within his reach or just beyond, you can be certain that he will find it and if it’s breakable, he will break it. But we still love him, and his dimples 🙂
It’s been a week full of excitement and joy as the simple gift of eating has been given back to Amos. We are mindful of the other things that we still wait for, such as Amos’ balance, his ability to stand and walk steadily, and aligned vision, but we are encouraged by the quick recovery of such an important task over the last ten days. Thank you for walking alongside of us. We are always so encouraged by the many ways that you love Amos and our family through this difficult season.
Please continue to pray for Amos to continue recovery in all areas: eating, swallowing, speaking, walking, balancing, and for his vision. Please pray for us as Will is away, that we would all remain safe and healthy and that Will would have a productive and enjoyable time in Cambridge. Please pray that we would see Amos continue to be motivated and enthusiastic about the hard work of recovery and that he would remain cancer free for the rest of his life. Please also pray that we would know when to return to Cambridge and that the details for that would all fall into place well.
Luke showing us all how to carry a shovel