Dear Friends and Family,
It is hard to believe that it has been over two weeks since we’ve posted an update. I was chatting with a friend yesterday on the phone and he said that probably means good news. So it does. The past two weeks have been very calm, the biggest surprise being three cloudy and semi-rainy days this past week. But there is a little to update you on, and some fun things to recount.
The most significant part of the last few weeks was Amos’ eye surgery. Thanks for praying about it! The procedure only took about an hour and went very well. We told you that it was uncertain whether this less invasive surgery would be sufficient to straighten Amos’ eyes. A week afterwards Dr. Boisvert told us that she thinks it has done the trick, and that Amos will not need another procedure. This is wonderful news! We still have another follow-up in about two weeks to confirm this, but we are hopeful that we are done with eye surgeries. Praise the Lord!
Here is a before and after shot:
Now, it deserves mention that between these two photos were about ten days of itchy, red, blurry, pussy, bloody-teared eyes, and that was not at all easy or pleasant for anyone. Amos was incredibly strong (as usual), and you can maybe understand why we’re glad a more invasive surgery will not be necessary.
We’ve mentioned Amos’ night time issues with breathing that frequently leave him low on oxygen levels (and us low on sleep). This has been an ongoing issue ever since chemo started about six months ago, and is the underlying reason for the sleep studies we’ve done a few times now. It is also related to the constant postponement of the trach removal, as we need to be absolutely certain Amos does not need the trach, which at this point we are not.
Last Monday Amos had his nasal airway “scoped,” which I mentioned in a previous post. This is the “flashlight spaghetti” gadget with an eyepiece on the end, which allows Amos’ ENT doctor to check out his nose pipes. Amos handled this very well despite much children’s shrieking in nearby offices while he waited his turn. It was worth it, as it may have helped clarify the breathing issues. It seems that Amos still is not sufficiently clearing his throat and/or swallowing reflexively, which is probably because sensation is still returning in his airway. This could help explain the results of his swallow study a few weeks back also, where we learned that stuff was going down the “wrong tube” occasionally. The answer to this is more directed therapy and, of course, waiting.
Some Fun Stuff
We have managed to do some fun things too in the last few weeks. A highlight was Easter weekend, since we had Kelli’s grandparents (“Gram and Bones”) come visit from Iowa, as well as her sister (“Aunt Lulu”). It was really great to see them and spend some time together, especially since Easter coincided with my birthday this year. To celebrate, we went on a duffy boat ride in Balboa Bay, and had dinner together at Gigi and Grandpa’s house in Dana Point.
Last weekend we also went to the last pre-season Angels game here in Anaheim. The stadium is only about 15 minutes from here, and we had a beautiful afternoon for it. Everyone is now officially an Angels fan, as you’ll see in the pictures. Being there was particularly special, since a handful of Angels players came to visit Amos during radiation last summer. Ever since then the Angels have had a special place in our heart, and Amos and Grandpa have been faithfully reviewing the rules of the game in anticipation of a day at the park together. What a blessing to finally do it!
Kelli and I also had a nice few days with some of her friends from North Carolina this past week, David and Becca, whose kids are about the same age as our little guys. What a nice change to have some friends to spend time with.
We do have some important things coming up. The most significant is Amos’ port removal, which is tomorrow morning at 11:15am (PST). This was one of the procedures scheduled for the eye surgery week, but which we postponed due to how hard Amos took the eye procedure. Now that he’s recovered, we’ll finally get the port out. This is the internal and semi-permanent IV line that he used for chemotherapy, so we’re very happy this is going to be out of the picture! We also plan to hear from the UK Home Office this week about the status of our visas.
- That we would hear about the status of our visas this week
- That we would hear definitively that the visas will not be cancelled (or “curtailed” as they say)
- That Amos’ port removal would be quick and simple tomorrow morning
- That Amos’ eyes would continue to heal, for full range of motion, and that his vision would recover
- That the sensation, reflexes, and strength would continue to quickly return in Amos’ airway so that the swallowing and breathing issues would resolve soon
- That Amos would be completely and permanently free from cancer
“Sing to the LORD, all the earth! Tell of his salvation from day to day … For great is the LORD, and greatly to be praised, and he is to be feared above all gods.” 1 Chron. 16:23, 25
Much love in Christ,
Will, Kelli, Amos, and Luke
Some pictures (click to enlarge)