Armed and Dangerous

We have some great friends. In particular, the Tims. That's Rob, Holly, Trey and Jono. They recently moved to South Carolina, but we still stay in close contact with them. While having fabulous kids close in age to ours and being super fun to be around, they are also the most generous people we know. They pick up the tab at dinner far more often than they should, they give to Leukemia and Lymphoma Society on our behalf and most recently, sent this awesome Nerf gun. It came in the form of an end-of-chemo gift for Joshua, but it has quickly become our family's constant form of entertainment.

Ready for battle.

"You'll never escape my wrath, Daddy."

"I'm terrified of foam darts!"

"Let me know when we're playing baby dolls again."

Merry Christmas

Christmas Preparations

I think it has been made clear by now that our family loves Christmas. Over the last month we have spent countless hours getting our house and our spirits ready for this momentous day. Here are some of the photos we've taken along the way.

Decorating the house and tree...

Careful, Michael.

The beads are for the tree, not for Princess Andi. Easy to confuse.

Decorating and eating gingerbread and cookies...

Our advent tree that goes with this book. I highly recommend it...

Party Time

For 3 1/2 years we have eaten at Chick-fil-a at least once a week. We love their food and their service. Sadly, every time we were there, we had to tell Joshua, "I'm sorry, you can't play in the playground. The doctors know you could get sick too easily because of the medicine you take."

Yesterday, that all changed. The super kind manager at our local Chick-fil-a opened up their doors on a rare Sunday to allow us to celebrate Joshua's last chemo pill. Alongside Joshua's best buddies and some of the amazing people that have supported us over these difficult years, we counted down Joshua's five last pills. He swallowed them like a pro and ate the biggest piece of cake I have ever seen. It was a wonderful kid-friendly end to a super long journey.

Last Clinic Day-Sort of

Joshua last day at the clinic was a wonderful celebration. The nurses and doctors were excited with us. The "sort of" refers to the fact that we will still be going to the clinic every 4 weeks for about a year to make sure that that Joshua's blood counts begin to return to normal. BUT, this was the last day that chemo would be pushed through his port. Awesome!

Rebecca accessing Joshua's port. After an echocardiogram next month, we will be able to schedule surgery to have it removed. One step closer to normal life.

Dr. Ho checked Joshua out like he always does and then gave us the play by play of what post-chemo life looks like. Lots of details, but being there every month will help us get used to it.

Joshua found time to play with his buddy, Ben while he waited for the day to finish up.

Ms. Donna pushing his last syringe of chemo. I have always laughed at how the pediatric nurses are willing to give kids their meds wherever they are. Joshua was on his way back from the playroom and she just told him to stand still for a minute.

A quick family photo before we left. I'm holding one of about 6 gifts the clinic gave Joshua to celebrate this big day.

This is, by far, the best part of the day. The nurses sang Joshua a precious little song about his last chemo day. The last line say, "So pack your bags, get out the door, you don't need chemo anymore." I was weeping through my smiles.

We are so very thankful for each of these wonderful people. They have made our trips to Children's Hospital not only bearable, but sometimes, even enjoyable. They are gifted by God with patience, mercy, tenderness, compassion and love for all their patients. We are honored to have been entrusted to their care and know that God will continue to use them to care for Joshua and thousands of others. We love you all, VCH HEM-ONC!

Pictures of our big party and Joshua's last pills are coming very soon. Stay tuned!

A Prayer for the Last Day of Chemotherapy

"Our Father...

It seems that those words have taken on new meaning for me in the past 3 and a half years. In those 3 years, I have done the best I could to care for my son. Through sickness and hair loss. Through crying nights and days of questions. And for much of the time, I have felt myself hanging on by a thread.

But You? You know so much better than I do what it means to watch your Boy suffer. And because You do, I believe You have poured Your grace and mercy upon us. That grace has been far more profound than just the ability to get through the day, though You have been continuously faithful for doing that.

The fact that we are still here - all of us - is a testimony to your persevering power.

But You have gone beyond giving us our daily bread. You have sat with us in quiet rooms. You have rocked with us in hard-back chairs. You have cried with us as we have seen friends leave this world and go to be with You. You have lifted us up and born us on your strong back.

Over and over again, You have proven Yourself to be abundantly, exceedingly, and wonderfully able.

I think this morning of what our son's name means: The Lord is Salvation. And the truth of that statement is starting to seep in. You have saved, are saving, and will continue to save us. And through these troubles, amazingly, we have become more convinced of Your love in Christ from which we will never be separated in us.

We have believed, and yet you have helped our unbelief. I confess at times I have accused You of sleeping in the boat while the wind and the waves raged around us, but I know deep in my heart that You do not slumber or sleep. You have been ever watchful, ever mindful, and ever good.

Thank You, Father, for keeping us in faith. For prospering us and not harming us. For giving us hope and a future.

And now, will You, by Your grace, continue to uphold our family as we move forward. Help us not to forget Your faithfulness. May the remaining decades of our lives ring with the stories of Your goodness. I pray that our little boy would become convinced of Your good work in His life, and that we might faithfully be a comfort to others with the comfort we have received from You.

May it be done for the glory of Your own suffering Son who now sits victoriously, interceding for us even at this very moment.

Amen.

**Today is the last day of intravenous chemotherapy for Joshua, 3 and a half years after his diagnosis of leukemia. After his treatment today, he will take his pills for 5 more days. The last pill is Sunday.

Going Out With a Bang

That's what it feels like. Here we are, 10 days away from finishing treatment, and Joshua checked into the hospital last week. Well, we thought we had that problem licked, but he had an appointment today at the clinic to see if his blood counts had rebounded. The appointment went well, so we all went out for lunch together.

Joshua wasn't hungry. Which is unusual. He laid his head on my shoulder during lunch. Then he started shivering. After a trip to get a thermometer at Rite-Aid, we saw that he had a very low-grade fever. So back to the clinic we went.

They heard him cough and ordered a chest x-ray and... wait for it... pneumonia.

Seriously?

Yep.

So he's got some antibiotics and a 48 hour seclusion. Fitting, I guess, to go out like this. So if you need us for the next couple of days, we'll be bunkered up like its Y2K all over again.

Andi On Stage

Today, at CBS, it was Christmas program day. Since Joshua was still not up for going to school, I brought him along to watch Andi sing. It may have been the sweetest sibling moments to date. I wish I had kept my camera rolling for all of it.

Just after she waved at us on the way in, she ran up to hug Joshua and then started yelling, "That's my brother!" She was so proud to see him and Joshua was so proud of her, too. Heartwarming!

In the video, you'll see Andi waving at Joshua. Then, at the very end she blows a kiss because Joshua was blowing kisses like crazy behind me. It was just too sweet. What a fabulous way to end our week of isolation. We look forward to seeing everyone out and about very soon.

Going Home After All

Despite very low blood counts and a very compromised immune system, the doctors are sending us home. So, while we may not see any of you for a few days while we live in seclusion, we will at least be sleeping in our own beds surrounded by our winter wonderland of decor.

I tried to think of God's redeeming nature through this particular trip to the hospital. I was quickly reminded of all the people we were blessed to see here. We ran into some of our very favorite nurses from over the last 3 years. I had the chance to say a personal thank you to them as well as some of the administrators that have played a key role in taking care of us from the very start. The timing of this trip brought back some tough memories, but I was able to see God's unique hand in creating beauty from ashes. Joshua doesn't remember much about those first few months, but he does recognize that there are tons of people here at Children's that excited to hear him read, build Lego spaceships and especially to see his hair flopping around.

God's grace abounds.

Another Night Inpatient

Joshua's counts were significantly lower than they have been in some time. So, we stayed the night on the beloved 6th flood. A little family reunion ensued with some of our old nurses. There was so much to catch up on after almost a year since we slept up here.

Today his counts have only risen a tiny amount so we will stay another night. The good news? Only 22 days until we don't ever have to spend another night in the hospital for low counts. I think we can deal with just about anything until that glorious day!

This is Getting Old

The day started off with a bang around here.

With Thanksgiving over, we set about ringing in the Christmas season. And we love Christmas.

L-O-V-E Christmas.

So we hauled out the tree, added some lights and a snowman to the house, and listened to Christmas music all morning. Joshua started feeling pretty sluggish, and by 12:30 he was sleeping on the couch under a blanket.

1:15 rolled around and you guessed it - he woke up with fever. So off to the hospital we go.

And if I could vent here for just a moment. We moved into a house built in 1957 about a year and a half ago, and we love it. It's a great house in a greater neighborhood. But moving in, we got a home warranty protection from America's First Warranty cause we knew some stuff would break.

Well, last Friday night the heater went out. It was blowing, but it was blowing cool air. So we called the warranty company on Saturday morning. We didn't hear anything back until Monday, when we learned that apparently they "misplaced" the work order. A technician came out on Monday and said they had to order a part for the heater.

Tuesday came and no part.

Wednesday no part.

Thursday was Thanksgiving.

Friday, no part.

This morning they told me it would be Monday before they could come. That's 9 days without heat. Now I know I don't have much to complain about given our status in the world at large, but man - I am upset. I can't help but think that going 9 days without heat might have contributed to my son going to the hospital. I've had several "fun" conversations with the warranty company already this morning, none of which have been even close to satisfying to me, especially since this is the 4th service call we've put in about the heating / AC in the last year.

So any chance there's a high level exec from America's First reading our blog? If so, boy - I'd love to grab about 10 minutes of conversation with you.

Hopefully Joshua won't have to stay overnight. We'll keep the blog updated...

Squirrel?!

Check out Michael's post here about the critter that invaded our home. Hillarious!

Halloween 2009

We are a happy little Christian family that totally digs Halloween. We never mind spending money on costumes because our kids will wear them everyday for years to come. This year we did it up right. We hit a "Fall Festival," hosted the cousins for pumpkin carving, partied at Joshua's school and did the traditional neighborhood walk. It was tons of fun.

We also figured out that this is the first Halloween in 3 years that we did not have to be at the clinic or in the hospital for either a regular appointment or because Joshua was sick with low blood counts. Strangely enough, it is a little sad. I know, wierd! See, at Vandy they do it up right. They give massive wads of candy and presents and the staff is all dressed as their favorite medicine of choice. Hillarious! Check out the old posts here, here and here. (You may have to scroll down a bit.) Then, enjoy the photos from this year's fun.

The hard work of Michael and Jeffrey. The rest of us weren't much help :-)

Fly Tinkerbell! Fly!

Joshua's best bud from school, Adam.

All the Star Wars characters from Joshua's class. Clearly, the majority.

Ready to hit the road.

Can't wait for next year!

Last Day with Ms. Kim

Every time we are getting ready to go to the clinic, Joshua asks me if we have to see Ms. Kim today. Ms. Kim is fine person. She laughs easily, talks about her 3 sweet kiddos with great joy, and is really good at her job. Unfortunately, Kim's job at Vanderbilt Children's Hospital is the resident spinal tap expert. She performs around 15 a day. Another fact about her job is that in order to get through Ms. Kim, you must first see the anesthesiology team. Which, to a kid, means no food until you are finished seeing Ms. Kim.

Joshua is very aware of that last point. Joshua has been getting chemo pumped into his spinal fluid every 12 weeks for 3 years. And to him, the waiting to eat part is the worst. I do have memories of the first few spinal taps, which also included bone marrow aspirations. It was during the time that Joshua was steroids for a continuous 45 days or so. He was starving and not sleeping well. He would wake up at 5 and not be able to eat until after we saw Ms. Kim. It was a terrible long time to wait for a 2 year old even when she would let us go right at 9:30. Yesterday was not nearly that dramatic. Joshua waited very patiently. But with fleeting memories of those first days, we were all anxious to be finished with this final procedure of its kind.

Our turn finally came around about 11:00. The anesthesiology tech came to listen to Joshua and make sure he was clear for sedation. This part didn't go so well. After being sick this weekend, Joshua was still wheezing and neither the anesthesiology tech nor the anesthesiologist felt comfortable putting Joshua under with a cough. Finally, they decided he could have a few breathing treatments and press on with the procedure.

After he was finished with the procedure, I went to see him in the recovery room. He was so sweet sleeping, I had to snap a picture. He woke up to his favorite cherry coke icee and was wheeled away to Jason's Deli for a celebratory lunch with Daddy and Andi.

I truly felt like yesterday was a huge hurdle to cross on the way to finish line. Somehow, it made the end feel like it was possible. Dr. Engle, whom I respect greatly, did give us a some great advice. He reminded us that the end of treatment can be really scary. It is a normal feeling and it is better to confront your feelings now than to wait until the end has come and gone. So, that's just what we are trying to do. And celebrate a little, too!

Back in the ER

We really hoped that Joshua would make it to the end of treatment without being back to the ER. But with a fever of 101, he is here now and, as usual, we don't know how long he will stay.

This particular trip started out a little more frustrating than usual. When we talked to the nurse on the phone at 3:00, we were told that the clinic closes at 3:30 on Fridays. I rushed Joshua in the car and drove faster than usual to get through traffic. Unfortunately, we walked into the clinic at 3:31 and were told to go down to the ER. URGGGHHH! Just to give you an idea of how big of a deal this is, here are a few differences:

1. Clinic - 10 minute wait for a room; ER: 2 hour wait for a room

2. Clinic - 2 seconds to access Joshua's port with the needle; ER: 30 minutes with a very nervous shaky handed nurse to access the port (they try hard, it just isn't the norm down there)

3. Clinic - blood counts come back within 30 minutes and we talk to a HEM-ONC doctor directly; ER - blood counts come back hopefully with 2 hour and a nurse communicates what the doctor thinks.

4. Clinic - $25 co-pay; ER: $200 co-pay YIKES!

So, I begrudgingly marched down to the ER into the germ infested waters and signed in. Shortly after that, we learned that there were no beds on any floor, not ever for HEM-ONC patients waiting for counts. Don't we all love flu season?!

Michael may have been even more frustrated than me about the 3:31 situation. He called the clinic and managed to get an emphatic "I'm sorry" from them. Apparently, they were expecting us, but forgot to inform the front desk. I can't decide if that made me feel better or worse.

Either way, here we are now waiting once again for blood counts to come back.

(**Update: It is 10 pm and everyone is home. Joshua's counts were high enough. We will need to return for more antibiotics tomorrow, but we are sleeping in our beds tonight. We are so thankful!)

Leukemia Reflections - Year 3

Yesterday, October 18, marked the 3 year anniversary of our five-year-old's diagnosis with leukemia. On the anniversary of his diagnosis the previous 2 years, I've written a series of reflections based on the previous year. If you want to read them, you can do so here:

Diagnosis Post

Year 1 Reflections

Year 2 Reflections

This year is a little different because we are, God willing, approximately 2 months and 3 chemo treatments away from being finished with chemotherapy. So here's some thoughts 3 years removed from diagnosis day:

1. It's easy to hide behind your pain. You can use cancer as an excuse for pretty much anything - poor job performance, callousness toward others, financial irresponsibility - you name it. But no good comes from hiding behind. Cowards hide.

2. I thought coming to this point in Joshua's treatment would mean an end to fear, but we find ourselves grappling with a whole new set of fears. These are about relapse, social development, physical development, and issues later on in life. These fears, too, must be looked squarely in the eye and told the gospel.

3. No man ever collapsed from the pressure of one day. It's only when we start adding the weight of tomorrow's worries that it gets too heavy for us to bear.

4. The Lord, I believe, has a special measure of grace reserved for days like the one 3 years ago. You wake up on one of those days not knowing that this grace has been bestowed upon you; and if you did, you might very well want to give it back. Nevertheless, God provides it before we know we need it. And in that moment when the worst happens, we cry, we yell, we moan - but we keep on going.

5. It's possible for time to pass both slowly and quickly at the same time.

6. I believe God is interested in healing Joshua. I also believe God is interested in healing our whole family. The difference is that we knew what Joshua needed to be healed from. It was only in time that we began to see that we were also sick.

7. Things will never be the same after this. And that's not all bad.

8. The suffering and pain of children is, in my opinion, the clearest evidence of the devastation from the fall.

9. Our second child has never known a life without cancer. Our third child (God willing) will never know a life with cancer.

10. It's very, very difficult to be someone's friend as they walk through pain. To do so requires an enormous emotional investment, and it doesn't happen by accident. Only by rugged and determined perseverance do people walk the road of pain together.

11. I believe it's important to the Lord that the last 3 years aren't something "we put behind us." It's important for us to remember, to tell the story, and to help our children remember, too.

12. Understanding is neither promised nor given in whole this side of heaven. The Lord is too wise and has His fingers in too many places to grant our small minds full understanding of the "why" of what He does and allows. However, there's a difference, I think, between understanding and perspective. And while we don't get understanding, the little moments when we see Joshua's cancer being redeemed in a myriad of different ways in our lives and in the lives of others, that brings us perspective.

13. If you would indulge me, I'd just say that one of the greatest reflections I've had over the past 3 years is that my boy is unquestionably, absolutely strong and courageous. Like his namesake. He has been stuck with a needle 4 times as much as I have in his short life. He's lost all his hair and grown it back. He has, without complaining, taken at least 12 pills every week for the last 150 weeks. And he's done it with a smile.

I'm so proud of my son.

[CORRECTION: I made a calendaring mistake; Joshua's spinal tap and chemo is a week from today; not today. Sorry, Jana, that you had to be standing at the appointment desk at Children's Hosptial to find that one out.]

3 Years

Tomorrow, October 18th, is the 3 year anniversary of Joshua's diagnosis with acute lymphocytic leukemia. That also means that as of today, he has been undergoing chemotherapy for 2 years, 363 days.

Hard to believe it's been 3 years. We just wanted to reflect a little with a few pictures, starting just before he was diagnosed, through the early stages of treatment, through hair loss, and finally just a week ago on vacation.

On Monday, Joshua will receive - God willing - his last ever spinal tap. If you're keeping score, that means after Monday we only have 2 chemo treatments left.

Newport Beach

We were also able to head down to the beach. It was a bit chilly, but that certainly didn't stop Joshua. He ran straight for the water and loved every minute. Andi, like us, thought the water was too cold and stayed buried in the sand. We were having so much fun, I kinda forgot to take a bunch of photos. Here's what I did get.

I couldn't resist. I love my hubby.

Favorite. Picture. Ever.

The only picture we took at dinner. It was yummy seafood with a great view of some massive yachts.

Overall, a great trip to the west coast. Hopefully, it won't be our last.