ENT Update

I guess everyone gets to have a bad day. Thankfully, our ENT did have another one on Friday. Our visit actually went really well. Dr. Goudy was much more kind and considerate of us and of Joshua's health. He did see a need to do something more to help Joshua. He gave us a new medicine that may or may not help. Dr. Goudy also explained that he was trying to avoid surgery due to Joshua's compromised immune system, but would be willing to remove his adenoids if things did not improve with the new prescriptions. As alway, we'll keep you updated.

ENT, 21, and 4

Tomorrow, Joshua heads back to the ENT (Ear, Nose, Throat doctor). A few months ago Joshua's HEM-ONC doctors sent us to see the ENT. Dr. Zieber intended it to be a reassuring appointment to help ease us into another Fall with a bit more confidence. Sadly, the ENT we met with was less than compassionate. He was very competent and knew his field well, but he didn't seem very sympathetic to our situation. To make matters worse, the appointment last time required us to wait for 2 hours before seeing even a nurse. Then, another hour before we saw the ENT, himself. We are hoping that tomorrow's appointment goes much more smoothly and the doctor is able to understand our needs better.

Wednesday is Joshua regular monthly appointment, where he receives his intraveneous chemo. For those of you keeping track, it has been 21 months since Joshua's diagnosis. The magic number is 36. 36 months of treatment. It is encouraging that 21 and 36 seem relatively close together. I remember the days when 3 years felt like an eternity. It is just good to feel like there is an end in sight. 

Now 4. On Tuesday, it will have been exactly 4 months since our last hospital stay. We have not stayed out of the hospital longer than 4 months throughout Joshua's treatment so this also will be a milestone. This is one of the reasons the ENT appointment is so crucial. If he can help our HEM-ONC doctors to keep Joshua healthy, we can continue to have long stretches of healthy, hospital-free days. Please pray to that end with us.

Here are some photos of one of those kind of days.

Bitter Hardship and God's Glory

Once again I am stealing from someone else's blog. This one is from Ashley. The message Sunday at Grace Community Church was amazing. Take the time to listen to it this week. This is Ashley's take on it. Basically, she beat me to it and frankly did a better job than I could have. To read the entire blog go here. My thoughts are at the bottom.

God shows up in hardship. This is contradictory to this world's idea of, "if I have enough faith, this will all work out." We are often afraid to look at real suffering. We think sin and suffering reflects poorly on God and that we need to protect His reputation. Maybe I just don't have enough faith. Moses didn't try to hide the hardship. He stared it straight in the face with no fear of embarrassing God. He simply records the hardship and let's God's glory appear in due time. The reality is that God's glory is often displayed most in the most difficult things of life.

The pastor took us back to the passage in Exodus where the people of God were experiencing oppression. The interesting part of the story lies in Genesis where God told his people to go to Egypt. We might be tempted to look at the story and say, "Surely Satan is behind this oppression." But no, God is. God led them to this land and God brought them under this oppression for a purpose. The point was not the hardship. The point was their obedience to follow God into the unknown. Through that oppression He birthed in them a hunger in their soul for a land of freedom, the "Promised Land." Canaan was on the other side of that oppression.

Scott went on to remind us that no place on this earth is unaffected by sin. Even the promised land became a place of idolatry. Sin resides in every human heart. Life will inevitably disappoint us. Even the relationships that we think are so "perfect" will fail us. They can never be perfect. Not on this side of heaven. Praise the Lord that nothing on this Earth can truly satisfy the longing on our hearts that only eternity can fill.

The last 18 months have been a picture bitter hardship in our lives. Joshua's cancer is the affect of a world filled with sin and God can handle it. He has and is handling it. He has heard our cries, remembered us, and knows each of us (Ex 2:24) It amazes me that we can already look back and see the ways that he has revealed His glory through this. The Isrealites had to wait for 400 years to see His redemption. Obviously, I would rather our hardship not include Joshua's pain, but I am thankful that we are not facing this without the One that hears us and knows us.

The Big Read

I found this post on a blog I stumbled across called Thoughts From a Retro Overthinker. I am making it my own. The Big Read asked people to nominate their favorite books in order to find the most loved book. Below is the list. The fun thing to do is to put in bold all the ones you've read. Someone estimated that the average adult has read 6 of the 100. I'm going to see how I did. There is the original link...

http://www.bbc.co.uk/arts/bigread/top100.shtml

And here are the "rules."

1) Look at the list and bold those you have read. (Bold doesn't show up for me, so I will put a *)
2) Italicise those you intend to read.
3) Put a ! next to the books you LOVE.

1. *The Lord of the Rings, JRR Tolkien
2. *!Pride and Prejudice, Jane Austen
3. His Dark Materials, Philip Pullman
4. The Hitchhiker's Guide to the Galaxy, Douglas Adams
5. *Harry Potter and the Goblet of Fire, JK Rowling
6. *!To Kill a Mockingbird, Harper Lee
7. Winnie the Pooh, AA Milne
8. Nineteen Eighty-Four, George Orwell
9. *!The Lion, the Witch and the Wardrobe, CS Lewis
10. Jane Eyre, Charlotte Brontë
11. Catch-22, Joseph Heller
12. *Wuthering Heights, Emily Brontë
13. Birdsong, Sebastian Faulks
14. Rebecca, Daphne du Maurier
15. The Catcher in the Rye, JD Salinger
16. The Wind in the Willows, Kenneth Grahame
17. *Great Expectations, Charles Dickens
18. *Little Women, Louisa May Alcott
19. Captain Corelli's Mandolin, Louis de Bernieres
20. War and Peace, Leo Tolstoy
21. Gone with the Wind, Margaret Mitchell
22. *Harry Potter And The Philosopher's Stone, JK Rowling
23. *Harry Potter And The Chamber Of Secrets, JK Rowling
24. *!Harry Potter And The Prisoner Of Azkaban, JK Rowling
25. *The Hobbit, JRR Tolkien
26. Tess Of The D'Urbervilles, Thomas Hardy
27. Middlemarch, George Eliot
28. A Prayer For Owen Meany, John Irving
29. *The Grapes Of Wrath, John Steinbeck
30. Alice's Adventures In Wonderland, Lewis Carroll
31. The Story Of Tracy Beaker, Jacqueline Wilson
32. One Hundred Years Of Solitude, Gabriel García Márquez
33. The Pillars Of The Earth, Ken Follett
34. David Copperfield, Charles Dickens
35. *Charlie And The Chocolate Factory, Roald Dahl
36. *Treasure Island, Robert Louis Stevenson
37. A Town Like Alice, Nevil Shute
38. Persuasion, Jane Austen
39. Dune, Frank Herbert
40. Emma, Jane Austen
41. Anne Of Green Gables, LM Montgomery (Seeing the movies 100's of times doesn't count?)
42. *Watership Down, Richard Adams
43. The Great Gatsby, F Scott Fitzgerald
44. The Count Of Monte Cristo, Alexandre Dumas
45. Brideshead Revisited, Evelyn Waugh
46. Animal Farm, George Orwell
47. A Christmas Carol, Charles Dickens
48. Far From The Madding Crowd, Thomas Hardy
49. Goodnight Mister Tom, Michelle Magorian
50. The Shell Seekers, Rosamunde Pilcher
51. The Secret Garden, Frances Hodgson Burnett
52. Of Mice And Men, John Steinbeck
53. The Stand, Stephen King
54. Anna Karenina, Leo Tolstoy
55. A Suitable Boy, Vikram Seth
56. *The BFG, Roald Dahl
57. Swallows And Amazons, Arthur Ransome
58. Black Beauty, Anna Sewell
59. Artemis Fowl, Eoin Colfer
60. Crime And Punishment, Fyodor Dostoyevsky
61. Noughts And Crosses, Malorie Blackman
62. Memoirs Of A Geisha, Arthur Golden
63. *A Tale Of Two Cities, Charles Dickens
64. The Thorn Birds, Colleen McCollough
65. Mort, Terry Pratchett
66. The Magic Faraway Tree, Enid Blyton
67. The Magus, John Fowles
68. Good Omens, Terry Pratchett and Neil Gaiman
69. Guards! Guards!, Terry Pratchett
70. *Lord Of The Flies, William Golding
71. Perfume, Patrick Süskind
72. The Ragged Trousered Philanthropists, Robert Tressell
73. Night Watch, Terry Pratchett
74. *Matilda, Roald Dahl
75. Bridget Jones's Diary, Helen Fielding
76. The Secret History, Donna Tartt
77. The Woman In White, Wilkie Collins
78. Ulysses, James Joyce
79. Bleak House, Charles Dickens
80. Double Act, Jacqueline Wilson
81. The Twits, Roald Dahl
82. I Capture The Castle, Dodie Smith
83. *Holes, Louis Sachar
84. Gormenghast, Mervyn Peake
85. The God Of Small Things, Arundhati Roy
86. Vicky Angel, Jacqueline Wilson
87. Brave New World, Aldous Huxley
88. Cold Comfort Farm, Stella Gibbons
89. Magician, Raymond E Feist
90. On The Road, Jack Kerouac
91. The Godfather, Mario Puzo
92. The Clan Of The Cave Bear, Jean M Auel
93. The Colour Of Magic, Terry Pratchett
94. The Alchemist, Paulo Coelho
95. Katherine, Anya Seton
96. Kane And Abel, Jeffrey Archer
97. Love In The Time Of Cholera, Gabriel García Márquez
98. Girls In Love, Jacqueline Wilson
99. The Princess Diaries, Meg Cabot
100. Midnight's Children, Salman Rushdie

Many of these are due to Michael and I reading together (Awwe) before we had kids. We may need to pick that back up again. Obviously, I have a ton more reading to do. How about you? How did you do?

Andi's Books

Just in case you missed Michael's weekend post, check it out here. It's worth the extra click.

The Couponizer

If you have spent much time with me in the last 4 months, you have probably gotten an earful about all that I am saving using coupons. My sister-in-law, Jenny, first convinced me to try it and then I went way overboard, turning it into a game. My competitive nature came out even stronger than normal and I started reading blogs and websites to learn more. One of my favorite blogs is MoneySavingMom. Crystal Paine is a champion couponer and all around financial guru. 

Every now and then, Crystal will post a giveaway for a featured product or book. This week it was The Couponizer and I WON! Right now I use envelopes that are already falling apart. Basically, this going revolutionize my shopping experience. This also confirms that I am truly a soccer mom, just without the mini-van.

I don't plan to make our blog about my couponing, but I thought I would share the good news.

Abraham Was No Dummy

I am working through the book Feast by Derek Leman. It is a Threads study about Jewish traditions. Currently, I am reading about Yom Kippur, the day of atonement. I have been knocked over learning more about the sacrificial system, specifically Christ as the sacrifice, once for all. This morning I read this:

Hebrews 10:1 Since law has [only] a shadow of the good things to come, and not the actual form of those realities, it can never perfect the worshipers by the same sacrifices they continually offer year after year.

The law is not only a shadow. The law is a shadow of good things to come. Imagine being trapped in a dangerous alley and needing rescue. You hope your rescuer will come, then you see his shadow coming from around  the corner. You suddenly have hope and peace. That is what the Law does. It was and is a shadow of good things to come. Yom Kippur is not an empty picture, a mere trifle. Yom Kippur is a beautiful image, a wonderful sign of hope that would come.

As Abraham, Isaac, Jacob and all of their descendants observed Yom Kippur, they weren't only sacrificing in the Holy of Holies because the law said they should. They were sacrificing because they believed in the sacrifice that is once for all.

Thankfully I worship with the knowledge of Christ, but studying Yom Kippur hopefully leads me to mourn my sin and live with a contrite spirit. 

Getting Settled and the 4th

The kids are very quickly getting used to the new house. It took Andi a few days to get the lay of the place. The poor girl kept thinking she had lost us if we left the room. She just didn't know the house well enough to find us. Now that is behind us and we are spending most of our time outside. We have done some yard work and Joshua has developed a smooth car system for driveway and has turned our fort into a pirate ship. Oh, to be 3 again. The imagination never stops.

Also, after nearly 4 years in Nashville, we went downtown to watch the big show. We weren't super close, but it was impressive nonetheless. Here's a few shots of us getting ready for the fun. To see great pictures of the Nashville fireworks, visit my friend, Amanda's blog here.

The Move - Report

Let's just get it out there - moving stinks. Nobody likes it. In fact, I have often thought that moving for all of eternity might be what hell really is. Moving is bad... except when it's good. Here's a brief rundown of some key events from Kelley Move '08.

9 am - People begin arriving and immediately begin to throw stuff in cars and trucks.

9:15 am - Reassemble to officially start the organized portion of the move.

9:18 am - Jana takes a crew of 4 to the new house to clean and begin unpacking the previously moved kitchen.

9:18-9:50 am - People divide up into 2 teams, half loading furniture in the U-Haul and the other half pulling up cars one at a time to load boxes.

10:10 am - Doors to the U-Haul close because the house is done.

10:30 am - Unloading begins at new house.

11:15 am - Doors close on truck a second time cause it's done.

Amazing. Some 25 generous friends joined us on Saturday to pack and unpack. All went above and beyond the call, staying until boxes were unpacked and beds were reassembled. Thanks for making Kelley Move '08 one for the record books. See you in '09. (Just kidding. I hope.)

Here are a few photos of the finished product. All boxes unpacked and all pictures hung.

Treatment Day Yesterday

Yesterday Joshua went in for his normal monthly treatment. The appointment went well. Doctors and nurses were, as usual, personable and caring. Joshua's counts were a bit lower than normal, but not alarming by any means. Joshua even woke up this morning feeling great.

For the past two months we have been overwhelmed by how well Joshua has recovered from his chemo and steroids. I guess that is why I wasn't too worried about how this week would go. Honestly, I didn't blog about treatment coming because sometimes I feel overdramatic when I ask you all to pray and then our week goes so well. That is some very messed up theology if I do say so myself. 

So, this morning, when I took Joshua and Andi to the park and Joshua said, "I don't want to play. I feel so tired. I want to take a rest" I was completely surprised. We got back in the car and came home so that Joshua could eat and take a long nap. He has now been asleep for about 2 hours. My hope is that he can wake up feeling better, but I'm afraid that he may be in for some tough moments in the next few days.

So, here I am asking once again. Please pray that his little body will recover quickly, especially since this is moving weekend for our family. He's got enough on his plate to adjust to without feeling crummy because of his chemotherapy.

Move '08

This weekend we are moving; this branch of the Kelley family is heading north to our new neighborhood. We've been planning to do so for a while, and the truck gets packed on Saturday. Love the new house and the fact that we're moving; hate moving itself. So I'm focusing on the positive stuff about the move to get me through the process of moving. Here, then, is the list of the top 5 things about the move.

1. We are moving to a neighborhood with mature trees. This will be awesome. Lots of shade to guard our albino-like son. If you haven't noticed, Andi is the only tan one in our family. Not sure where that came from.

2. The backyard. It's large flat, and completely shaded. It's already got a tire swing and enough room for more furniture, fire pit, hammock, and that car Michael's been wanting to restore (just kidding about the last one).

3. The commute. Trips to the clinic will be cut by 2/3. The gas implications for those trips, as well as Michael's commute, are really good.

4. The new house adds a playroom to our children arsenal.

5. The scooter. This is still in doubt, but my husband, the professional editor, the published author, the preacher, the guy who occasionally wears jeans with holes in them, now has a route that allows him to get to work without getting on the interstate. He is considering buying a used Vespa. Pictures to follow if this actually happens.

Old House

New House

King Who?

Joshua and Andi's uber-cool babysitter and our very good friend, Sarah, posted about a question / answer time she had with Joshua the other night. What we have long suspected is now proven true - Michael and I are the least holy people in our house.

Check out the blow by blow here.

A New Pool and My Second Thought

The Maryland Farms YMCA in Brentwood completely revamped their outdoor pool* this summer. Initially, I was very overwhelmed with both kids and everything that is there, but now that Joshua has figured out his boundaries, we are having a great time. Also, every time I go I get to see friends from church, from my days of teaching or from some other phase of our Nashville life. It's like a little reunion every week. Last week, I ran into Tiffany. It had been nearly two years and two kids since we had seen each other last. Today, I saw my new friend Beth and her three sweet kiddos. All in all, this new pool has been a load of fun for us. So, basically what I'm saying is if you want to join the party, Maryland Farms is where it's at!

*This is not the pool I referenced in the last post. I want to thank all of you for all the kind and thoughtful comments, emails, and phone calls. They were all very encouraging. I also walked away from that post with a new verse to memorize. Psalm 141:3-4a Set a guard over my mouth , O LORD; keep watch over the door of my lips. Let not my heart be drawn to what is evil. Not a bad thing to take away from a day like that. Both my self-doubt and my frustrations with the unnamed woman were not drawing my heart to righteousness.

One last thing, I was serious about not being afraid to talk to me. You can now all stop with the apologies for what may or may not have been said over the course of the last year. If that is the case, I need to start calling everyone I know.

Hold That Second Thought

Why oh why is it so hard to say the right thing to someone living in crisis, or in our case, living on the edge of crisis? I know that I have done it, too. You want to say the thing that makes the person in crisis feel cared for and loved, but then you keep talking. It is my observation that the second thought is always the one that could be left out. The initial reaction is kind, considerate and full of understanding. The second comes with a level of comfort that may not have been granted by the one in crisis. Take for instance the encounter we had today.

The woman I met was very kind. She talked and asked probing questions about our lives and our children. Very kind. Then, Joshua took off his life vest (we were at the swimming pool) which revealed the spot where his port is placed. This kind woman asked what that was for and I explained the last year and a half of our life. She was kind enough to listen. She said she was sorry and mentioned she knew someone else going through the same thing. Then, it hit, the second thought. She said, "I have read about all the things that people feed their children that causes leukemia." What I heard was, "You fed Joshua things that caused his leukemia."

Once again the second thought gets someone in trouble. I know that this poor woman did not mean to do it, but I have spent the rest of the day going over what I fed Joshua in the first two years of his life. Did I start formula too soon? Did I start table food too soon? Did I then and now let him have too many sweets? These are the unnecessary questions that happened because of a second thought, even though I know the answers.

The lesson? Sometimes it's more about quality than quantity. Words are powerful things. I hope I'm learning to choose mine more carefully.

PS - nobody be afraid to talk to me any more, please.

Hooray!

We love summer!

Lesson Learned

Yesterday it made a week since I had run. It has been about 8 months since I went that long without running at least a few miles. Now that I am finished training for the half-marathon I have been trying to keep running in my routine. This past week it just didn't happen. I set the alarm twice to run before Michael left for work, but I just kept sleeping. Two other times I chose to watch TV instead of leaving for the gym at night. So, this morning I did it, I got up and ran very early. Each step reminded me I should have run those other times. It occurs to me that when you run consistantly, you body forgets that running hurts so much. I guess the lesson I learned is that if you don't want it to hurt, run more often.

Here is a little video that sums up running for me.

Forward Progress

I have been pressing Michael for about a year to start his own blog. He has such amazing ideas and insights into what he is reading, what he is watching, and mostly what God is revealing to him. Our family's blog has been a place for him to talk about some that, but there a twinge of constraint that we exercise when you know that about every third post is going to be about Joshua's health. My hope for Michael's new blog is not only that he will be able to share more of his thoughts, but that it will be a conversation between him and all of us thinkers. There is nothing Michael loves more than to sit down with a few friends and discuss movies, culture, theology, questions, television, you name it. Now he has an avenue to do that with people across the street or across the globe.

So this blog is going to be pretty much our family blog, and that one is going to be Michael's "professional" blog. But this one about our family will still continue to be updated by both Michael and I.

You can find his new blog here. The title is Forward Progress. Michael's first post explains the title. It is a worthy read. I would encourage you to link to it from your blog, subscribe to the feed, or put it on your Google reader. He tells me there will be something new every day, but we'll see...

My Beautiful Girl

Our dear friend, Andrea Rhodes, snapped these great shots at the park last week. She is obviously very talented, but she is also very affordable. This is just five of the hundreds she took. If you are looking for a family photographer, we highly recommend her. You can view her website here. Thank you Andrea for capturing Andi so very well. We look forward to Joshua's in July.

The Good Cancer

Please read this blog by my friend and fellow cancer fighter, Renee. She speaks clearly about a a phrase we have heard from some well-intentioned people. She also tells about Matthew. A young man we were in-patient with on several occasions. He needs your prayers right now.

Another Month Down

So apparently praying works. Go figure, right?

Joshua had a spinal tap along with his regular dose of intravenous chemo on Wednesday, and we buckled in for what is usually the worst 5 days of the 12 week cycle we're on. And people prayed. And Joshua didn't cry. He didn't throw fits. He didn't lay on the couch. He played, laughed, and even mowed the grass (man, can't wait till he can do that himself). How about that - God doing what He does - answering a mass of prayers from His people for that random kid in Tennessee.

Thank you.


We also passed another mile marker without calling much attention to it, but in case you're counting, we are now past the halfway point in leukemia world. Actually we're well past it. Joshua has now been in treatment for leukemia for 19 and a half months. Halfway point was 18 months. And now, sitting on the back half, maybe there's room for a few more reflections. I don't think God wants us to be thankful for leukemia; I don't think that's what giving thanks in all circumstances means. However, He has been faithful to remind us on a near daily basis what the true meaning of redemption is.

To redeem - to buy back. That's what we see happening here. We see our good God buying back Joshua's sickness in a thousand tiny ways. He's teaching us to laugh more, cry more, hurt more deeply, and feel joy more fully. He's teaching us to hold loosely to stupid things and grip tightly those things that are significant. He's teaching us about the nature of hope, and that hope by its very nature involves a measure of pain. He's teaching us about contentment and joy. And we are doing our best, sometimes better than others, to listen.

And maybe that's one of the best things any of us can do. We don't respond perfectly, or even very well, when the days are trying. But maybe we're learning to listen better.