Saturday, September 1, 2012

The latest on Jonah, 9/1/12

September? Wow. August 20 seems like an age ago. Did finding missing socks and paying library late fees ever seem remotely important to me? Two weeks ago would I have believed that I would now know how to flush a PICC line with saline and would have words like "Daunorubicin" and "lymphoblastic" rolling off the tip of my tongue? I cannot imagine living through such a sudden and spectacular transformation without knowing that we are upheld by the God who does not change.

After he endured a very long week full of nausea and weakness, Jonah's doctor adjusted some of his medications, and he seems to have finally turned a corner. His appetite, thanks to the steroids he's been on, is now back with a vengeance. He wakes up in the night wanting a snack, and he called me on Friday asking me to bring him some popcorn, two homemade two-egg omelets (because the hospital ones taste like damp dish sponges), and a bag of Buffalo Bleu Kettle Chips, all of which he ate in short order. Since then he's managed to consume remarkable amounts of food—strawberries, peaches, yogurt, bacon, sausage, pepperoni pizza, cheeseburgers, chicken couscous,  root beer, cranberry juice, and so on. After he lost several pounds, we are thankful that he's eating again and keeping it all down. And at this rate he looks like he's going to gain that weight back sooner than later.

Jonah is also the most cheery and talkative we have seen him in weeks. This weekend of seeing him acting more like himself again has been an emotional boost for all of us. We know he will continue to have ups and downs over the course of his treatment, but it is such a joy to have Jonah up and about, smiling, cracking jokes, and with some pink color back in his cheeks after a month of looking pale and tired all the time.

We were able to meet with Jonah's oncologist yesterday, and, as long as he continues on his present course, she is planning to release Jonah from the hospital as early as next week. His blood count is near its nadir, meaning that his immune system is at rock bottom, leaving him at high risk for infections, but as long as his numbers start to come back up as anticipated and he stays free of infection, they would allow him to leave the hospital on Tuesday. This does not mean that he can come home yet; we live too far away for that, but it would still be a welcome change. Thank you for your continued prayers to that end.

We also learned that Jonah will probably be allowed to come all the way home (and sleep in his own bunk bed!) for short intervals much sooner than we thought. This is also a huge relief, since earlier this week another oncologist told us she thought he might not be able to come home at all for six to nine months. That is still a possibility if his blood count is slow to recover after each dose of chemo. But over the next nine months Jonah will very likely be able to come home for varying periods of time in between his stays in the Spokane area. He may even be able to join his class at school for part of that time. So please pray for his body to recover quickly from his treatments and that he (and the rest of us) will remain infection-free  so that we can be together in Moscow as much as possible. We would all—obviously—love to have Jonah home again.

In the meantime, we have found a place to stay, at least for the next couple of months before snow comes, that is within the one-hour allowable driving distance from the hospital. Some church friends have offered the use of their vacation home on Lake Coeur d'Alene, and who could say no to that? This is a huge blessing which is going to make the prospect of living away from home much sweeter for Jonah. The boys may even get to enjoy some autumn fishing together before the weather turns.

We continue to be humbled and astonished by the kindness and love shown us by our Christian brothers and sisters both here and around the world. Hopkins was right: "Christ plays in ten thousand places, / Lovely in limbs, and lovely in eyes not his / To the Father through the features of men's faces." Every time we turn around, Christ is there, and He is unspeakably lovely. Every hot meal, every generous gift, every kind note, every offer of help, every hug, every prayer on our behalf has been Christ to us during these long two weeks. And we are grateful.

UPDATE: Just in the time since I sat down to write this, Jonah's nausea already started to return, and his temperature is now slightly elevated. Please pray that the nausea and fever would subside quickly and that he would still be able to leave on Tuesday.

This gives you some idea of how each day goes for Jonah right now. By the time I start to write one update, the situation changes so that my "update" is already out of date before I hit "publish". We are certainly being kept on our toes, so thank you for praying, even when we don't know what to ask for from moment to moment. God knows our needs even before we do.


jess said...


We have been following your blog closely and it brings back loads of emotions. Please know that we are praying for you and are available at any time if you have any questions or just want to talk. Please let Jonah know that Lizzie is praying for him and knows exactly what he is going through. We love you guys!

Jess, for the Kliers

Michele Dickison said...

I just read your update and the comment you left on Femina - hold on to the joystick. And know that you have an army behind you, with you in this trial. Continuing in prayer. With love, Michele

Kissy said...

The Rayners are praying for you in TX. So uplifted to hear of Jonah's progress even though it seems to change often. Sounds to us that he is in the right place for his treatment. We are praying for Jonah and all of your family. May God bless you as you go along these days ahead before you can all be home again together! Much love, Patty & Freddy Rayner

Evelyn said...

So good to hear and update. We've been wondering..... And praying, of course. Thanks, Hannah!

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