Friday, October 31, 2008

Halloween 2008

This is only picture I got before my camera battery died (and I've lost the charger - an issue for another day). Even still, you can see that we had some cute trick-or-treaters to send into the neighborhood.

Overall, the day was good. We took the kids to Joshua's appointment dressed and ready for a happy Halloween. We were a bit disappointed by the number of people that were also dressed up (not many today), but everyone was more than happy to give Joshua and Andi the attention they expected. Of course, the attention came with goodies as well. The kids came away with new DVD's, books, stickers, and plenty of candy.  Not too shabby.

As for Joshua's health, his blood counts are up, but he's still not clear of infection. He has two ear infections which means we still need to stay clear of crowds through the weekend. Also, we will return to the clinic again for blood counts on Wednesday. Please pray that the chemo he started again today would not draw his counts down too fast as he is recovering from the infections. 

Matthew

We have posted a few times about the struggle that Matthew Litchfield was having in his battle against cancer. Last night, Matthew's struggle came to an end. Matthew has gone to be with Jesus. Please continue to pray for his parents, Tricia and Jeff.

Thursday, October 30, 2008

Now We're Cookin'

Since we have had sufficient time at home, I decided to get the kids in the kitchen with me. This is kind of a huge thing for me. I am usually a control freak about cleanliness while I cook. You know, wiping down the counter top after every ingredient and using a wet paper towel to clean off spice jars. Maybe a bit over the top, but that's my way. This week I let that all go....well, most of it. 
We all put on aprons and went to work. We made cookies, bread, cupcakes (thanks to Noelle for the quarantine care package), and chicken and dressing (I'm already craving Thanksgiving food). The kids did great and we all had a great time doing it. They got their hands dirty and I got my kitchen dirty. It was all worth! Now, once we get out of here, we'll be happy to share all of these goodies.
Andi and Joshua digging into the leftover cake batter.
Yes, that is Joshua cooking in a Power Ranger costume. Not an uncommon sight at our house these days. I can't wait for you to see the entire get-up tomorrow.
Andi was asleep while Joshua decorated the cupcakes. I don't think she could have used quite as much restraint as Joshua did. Also, the towel over Joshua's shoulder was placed there by him. He told me it made him look like a real chef. I think he was right.

Monday, October 27, 2008

The Good News




1. Today it was cold in Tennessee. That means my kids get to wear their winter hats for the first time. Aren't they cute?!

2. Joshua's next clinic appointment is Friday. Friday is Halloween. Halloween is the best day of the year to be at Vanderbilt Children's Hospital (lots of attention and loads of candy). We should know. Joshua spent the last two Halloweens there. You can read about that here. Just scroll down a bit. Frankly, there may be no other place that Joshua would rather be. Joshua and Andi will both go dressed in their costumes. We're looking forward to sharing those pictures with you very soon.

Low Counts

Just got the word back from the clinic. They're not rechecking Joshua into the hospital, but his counts are definitely low. Lower than they were yesterday when they released us from the hospital, so it looks like there's not going to be much of a Halloween for our family here.

The low counts mean Joshua is on serious restriction - no school, no friends, no crowds, no trunk-or-treat, you get the idea. At this point, we're just hoping that some good rest and isolation will help them to rebound before he gets another fever. So we'd love for you to pray along with us that direction for the next several days.

Also, in case you were wondering what kind of crowds we were planning to be around tonight, go check out Michael's post, Cancer Gives, and Cancer Takes Away.

Sunday, October 26, 2008

Coming Home. Staying Home.

Doctors released Joshua to come home today. His blood counts are still very low which means we are on restriction until they come back up. Joshua feels good despite these low counts so we will doing some creative entertaining. Thankfully we have a big backyard with tons of freshly fallen leaves. See you all on the other side of good counts.

Saturday, October 25, 2008

Inpatient

Bad news. Joshua's blood counts weren't nearly as low as they have been in the past, but they were low enough. Probably they would have sent us home if it wasn't the weekend, but since we can't come to the clinic tomorrow because it's Sunday, the docs checked Joshua in, hopefully not for too long.

We know lots of people still in the clinic, and one of them is Matthew. Matthew is a courageous young man who has battled through leukemia, a bone marrow transplant, and now some complications from that transplant. Early this morning, Matthew had to go to the PICU because of the carbon dioxide level in his lungs. So he left his room in 6A, expecting to come back, but because "someone" needed it, his mom had to clean out his stuff.

It's hard to think we might be the someone. It's harder to think about the hard, hard battle Matthew is still fighting. And his battle is hard.

As you're praying for Joshua's blood counts to come up, I would urge you to also pray for Matthew. You can read more about his story here.

It's Been a Good Run...

... but it's 5:50 am on Saturday and Jana and Joshua are headed to the hospital. Pretty much out of nowhere, Joshua woke up at 4 saying he felt bad; he had a low grade fever, but not a big deal. About an hour later, his fever went up to the point where he needed to go to the ER.

It's been over 7 months since we made a trip like this; we're grateful for the time off we've had, and hopeful that this isn't too bad. They will check his counts, give him some antibiotics, and evaluate his situation this morning at the hospital.

We're praying his counts are good and they will just send us home rather than admitting him.

More soon...

Sunday, October 19, 2008

Two Years Later...

October 18 marked the 2 year anniversary of Joshua's diagnosis with leukemia. He continues to do well, after a 2 year cycle of oral chemo everyday, intravenous chemo every 4 weeks, and a spinal tap every 12. There's only about 15 more of those 4 week cycles to go, as we will end treatment, God willing, before Christmas of next year. 

Last year at this time, Jana and I posted some of the reflections we had over the first year. You can read that post if you're interested by clicking here and scrolling down a little bit to the entry from October 18.

To continue the tradition, here are some more reflections that have come as we finish this leg of the journey. If you've been reading the blog a while, some of these might sound familiar, but here goes:

1. God draws straight lines with crooked sticks. I once heard Harry Reeder say this, and it's proven to be true. I think it expresses the confidence that God has a clear purpose and direction in mind though the pathway is crooked. It's difficult. Faith is trusting in the one holding the stick, not in the apparent circumstances of the drawing.

2. Real community bears each other's burdens. As heavy as leukemia is, we look around us and see the shoulders of our friends and family drooping under its weight as well. They don't turn it on and off either; the carry it with us. 

3. There's nothing like a plastic sword to help out a kid. Joshua and I bought a sword for 50 cents at a garage sale, and many a tough day has been made better by fighting off imaginary dragons in our living room.

4. Everybody medicates their pain somehow; some forms of medication are just more obvious. There's alcohol, drugs, and other substances we use to try and take us away from reality, but then there's also movies, music, and, yes, even church. These are all things we can lose ourselves in, all as a part of an effort to not face up to the reality of our circumstances.

5. I think people during moments of crisis come to church, but I don't think they come there looking for answers necessarily. Maybe this is where we go wrong sometimes. Instead, I think they come looking for an acknowledgment of struggle, that life is difficult and not quite as cut and dry as we might think. 

6. In some ways, I think waiting rooms are the closest representations to heaven there is, simply because there are no petty divisions in waiting rooms. There's no black or white, rich or poor. There is only a group of people with a common linking that bonds them together. Such is the case with heaven. People aren't divided along racial or economic lines; they instead are bound together by one common thing—a pair of wooden beams nailed together.

7. Control is a myth. We strive and strive for it, but the reality is we are one moment away from life turning upside down. Insurance, 401K's, burglar alarms, seat belts - they're all fine things, so long as we don't fool ourselves into thinking we are really controlling anything.

8. There are alot of unsung heroes at the hospital, people like the care partners who take temperatures and change diapers with such skill that they don't even wake you up at night. Or the nurses who are willing to play in a pick up baseball game in the hallway. Those folks are rarely recognized but are vital for putting one foot in front of the other in this journey.

9. Those who walk deeply with the Lord are also those who have wrestled with Him. Indeed, I think a big part of our spiritual development and growth is our ability to process and embrace the pain that all of us have in our lives. 

10. That being the case, most of us never do. We never think too much about it because it hurts, and so we find ourselves outwardly moving forward but inwardly stalled in the middle of our pain, resentment, and bitterness.

11. It's okay to acknowledge the difficulties we have with God; it's not okay to live there. At some point you've got to move forward in faith. That's what the psalmist did; so many of the psalms have a section of complaint against the Lord, but they don't end like that. They end with the psalmist making the choice to believe and to have hope. And it is a choice.

12. Is there a greater blessing from the Lord than kids? Don't think so - at least not today.

13. God is more interested in who we are than what we do. I have alot of questions about the future. Where will we go? What will I do? I know those questions are important, and I know God cares about answering them. But I think He cares more what's going on inside of me, knowing that the work in me will lead to work through me.

14. God is mysterious. That's all I have to say about that.

15. Faith is work. Some have argued throughout history that Christianity is a crutch for the weak-minded, for those who cannot accept that the universe hands out disease and blessing completely at random. I disagree. In the last 2 years if would have been much easier many days to stop believing. It's harder to believe, because believing means wrestling with the truths of God.

16. Finally this - I am convinced that the Lord loves us deeply. He's not mad at us. And He wants to walk with us intimately. That's good news.

Saturday, October 18, 2008

2 Years Ago Today

Today is October 18, and 2 years ago today I was sitting in a doctor’s office. We had noticed a rash on Joshua’s stomach and I took him to his pediatrician to get him fixed up. The rash ended up being a symptom of a greater problem, caused by capillaries bursting below his skin because his white blood cell count was so high. His white blood cell count was so high because some 80% of his blood cells were affected by leukemia.

Today’s the anniversary, and today we have alot of hope in this situation as Joshua’s treatment continues to press on and go well. But it does feel strange to be grizzled veterans at this point, having done this stuff for 2 years. On the blog on Monday, I’ll be posting some reflections from year 2, but until then, thanks for reading and praying with us through this.

Wednesday, October 15, 2008

My Sisters

Amy and Kim -- You both constantly amaze me. Thank you for being a constant source of encouragement in my life. It is so good to know that I will always have a best friend to call. You are my experts for basically everything in my life and there is absolutely no one I can spend more time with in Target. I am glad to know I have you both with me to walk through all of our joys and pain together. 

Monday, October 13, 2008

So Soon

Joshua's treatment week always comes around far too quickly. Wednesday we go in to have another round of chemo and begin steroids all over again. I usually start getting nervous about this time every month. However, based on last month's side effects, we may be in for a smooth ride after all. Thanks for continuing to pray, it is obviously being heard.

Monday, September 29, 2008

Crunching Numbers



In light of the financial crisis Michael talked about here, I thought I'd put Andi to work today.

Chili's for Dinner


Today, Chili's is donating 100% of its proceeds to St. Jude's Research Hospital. While this is not the hospital that treated Joshua, it is the place where his treatment plan was developed. And by the looks of Joshua these days, it is a fine plan indeed! So, I will be nudging Michael to go out to eat tonight and I hope to see you all there. If you go, make a Chili's in Joshua's honor. Or go here and make one from home. Happy eating!

(HT: Renee)

Thursday, September 25, 2008

Ee Aww

Andi has learned only a few words so far. She uses sign language regularly, but the actually words are not quite as quick. So, the other day when Joshua came out of his room riding a stick horse, you can imagine my surprise to hear Andi stand up and yell, "EE AWW!" She ran to get the cowboy hat in the playroom and continued yelling, "EE AWW! EE AWW!" I wasn't quite sure what she was saying until Joshua starting yelling, "YEE HAW" right along with her. Now, every time Andi sees a horse or hears Old McDonald she begins say, "Eee Aww," all over again. It is really cute.

Here are a few more pictures that will make you want to give her a good squeeze the next time you see her.


Sunday, September 21, 2008

Did They Forget Something?

As you already know, the weekend following treatment is trying for everyone in our family. Wednesday night I (Michael was out of town) braced myself for several middle of the night wake-ups. Instead, Thursday morning I woke up refreshed with 2 happy kids.

A little weird.

But sometimes it takes until Friday for things to go south on a treatment week. But Thursday night came and went, and so did Friday. And Saturday. And Sunday.

In fact, the week went so well and was so comparatively easy that I convinced myself that the hospital had forgotten to give Joshua his chemo treatment at all. After all, I didn't pay that close of attention when he was getting it, so I fabricated in my mind how they had simply neglected to push through his chemo.

I actually called the hospital today to check, and they assured me that they had indeed given Joshua his medicine. Nothing to do at this point except praise the Lord for another 4 weeks down, this one without many side effects. 



Tuesday, September 16, 2008

The Battle

Tomorrow is another Wednesday at the clinic. Joshua will once again receive chemotherapy and an immune booster, followed by 5 days of steroids. It will be a difficult week, but today I was reminded of all the patients that have walked this tough road. Renee put together this slide show for Childhood Cancer Awareness Day. It shows all of the people we have come to love on the 6th floor and the poor families that have lost this ugly battle.

Tuesday, September 09, 2008

Make a Wish

If you're not familiar with the Make a Wish Foundation, it may be one of the coolest, more generous organizations we've ever run across. The idea behind it is to allow kids with life threatening illnesses make a wish, and see that wish granted.

They let kids meet random Nascar drivers, take them on shopping sprees, buy them computers, attend sporting events and play catch with famous baseball players, buy huge playground equipment for the backyard, and countless other things.

The time has come for Joshua to make his wish.

So we had a meeting last night with Jacilyn, his make a wish consultant. Now here's the thing - there have been families in the past who have tried to work the system a little bit, making their kids wish for a new hummer or to have their mortgage paid off. So we knew that wouldn't work. But to prevent that, each consultant has an interview time with the kid where they draw pictures together and answer questions. My assumption is that they take all this information to craft the experience.

Joshua's interview was pretty revelatory. Here are a few choice tidbits, complete with what we were thinking:

Jacilyn: What's your favorite food?
Joshua: Strawberries
(Wow - pretty healthy start Joshua. Maybe you should have said prime rib.)

Jacilyn: How about junk food? Do you like chips, or candy?
Joshua: Yes. I like Sunchips.
(Hmmm... we've had Sunchips once. At lunch yesterday. Daddy likes Skittles, Joshua.)

Jacilyn: What if you could have anything in the world? What would you want?
Joshua: A Wall-E movie.
(What? Really? How about a life sized robot to cook and clean instead? Or maybe a hummer?)

Jacilyn: If you could meet anybody in the world? Like a football player or a baseball player?
Joshua: Eli. I would meet Eli.
(That's great. Your cousin Eli. That you see 3 times a week.)

In all seriousness, though, it was awesome. Joshua did a great job, and he did just what he was supposed to do - be honest. We will not at this time be revealing what the end result of his wish is; you'll have to wait a while to find out, but we're pretty excited.

Thursday, September 04, 2008

30, Finally!

As my birthday has been approaching, several people have asked me how I feel about turning 30. My answer, "Bring it on." My life, up until now, has been full. It has included world travel, a beautiful wedding to a wonderful man, a successful (I'll be it short) career as a teacher, two amazing children, and great friends to accompany me all along the way. Along with these joyous pieces of my 30 years, I've experienced difficulty that I didn't think possible in my 20's: walking with my parents through failing health and disappointment and sitting with son through months and months of chemotherapy. After all of this, good and bad, I feel like I should have been 30 five years ago. 

In effort to stay looking and feeling young, I will continue to obsessively exercise, shop at Forever 21, and watch movies that were made for 15 year olds. If you see me wearing mom jeans, running for PTA president, or buying the best of Barbara Streisand, please remind me that 30 is the new 20 these days.

Regardless of how I look or what is to come in the next decade of life, I do know that my God has proven himself faithful. I look forward to all ways that God will continue to draw me closer to Himself.

Tuesday, September 02, 2008

A Better School Day


Some of you may remember the blubbering post from last year. If you look back, we confessed the tears that flowed after we dropped Joshua off at Mother's Day Out. This year was much different. Joshua didn't cry. I didn't cry. Andi, on the other hand, cried pretty hard. But then she stopped.

The kids had a great first day of school. Joshua had a blast and Andi quit crying almost immediately. Joshua's teachers were very concerned to know all about his health, his needs, and what we expected from them. Incidentally, this is the same group of teachers who almost 2 years ago pointed out a rash on Joshua's stomach that would eventually lead us to the leukemia diagnosis. It's pretty amazing to think that many of them have prayed for him for these long months and now he's back in their lives again.

We're looking forward to a great year.