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.

Legoland

Legoland must be the dream of a little kid that grew up and still loved Legos. I can totally relate. When Joshua got his first set of Legos almost 3 years ago. I remember sitting on the floor playing with them after he went to bed. Me and my sisters used to make mansions that we were so proud of. Well, those so called mansions are nothing compared to the stuff they have made at Legoland. All of the life sized figures, street signs, and an entire Miniland are all made out of Legos. The other cool thing is that there are literally buckets of Legos on every other street corner for kids to just sit and create. So fun!

This is clearly Darth Vadar and R2D2. Every bit made out of nothing but Legos.

Honestly, the rides are not that amazing if you are looking for roller coasters and awesome 3D rides (which I usually am!). But with 2 kids under 6 and me pregnant, it was perfect.

The dragon. All Legos. WOW!
Las Vegas strip, New Orleans Bourbon Street, New York Time Square, Eiffle Tower, Taj Mahal...all picture perfect out of Legos. I wish I had taken about a billion more pictures.
Lego driving complete with driver's license.
This was Andi's shining moment. She was able to ride several rides because she is officially 36', but this is the only one she could ride without parental assistance. She liked not having us around quite a bit. Worries me a little. Haha.

San Diego Zoo

What a great day...High 72...a view of the ocean from the highest point in the zoo...and four mesmerized kids!
The tickets the zoo provided for us included passes for the tram and the double-decker bus. The kids loved riding both of them so some of our time was spent just waiting to get on them again. I'm sure the deer didn't mind that we chose the tram over seeing them.
This orangutan was copying everything Joshua did. Brilliant!
This one is for you, Parker. Those tigers were 2 feet away through the glass and huge. Andi wouldn't get anywhere close. This picture doesn't do justice to how big they are.

We packed a lunch on our park days. Our theory, pack a lunch and pay for Churros and ice cream :-)
Joshua begged to have his face painted and spent the rest of the day crouched down, acting like a wolf. Andi got these precious little butterflies. I think they both decided it might not have been worth it when we finally had to scrub it off.
After 6 hours of animal viewing, we were wiped out. Joshua and Andi both slept the full 1 1/2 car ride back to our hotel.
A long day like this calls for a fat cheeseburger from In-N-Out. After hearing all the hoopla, I figured, "It's just a fast food joint, how good could it be?" I'm here to tell you, it is yummy!

Vacation side note: As I am creating all of these posts, I am reminded of how great a blessing this trip was to us. Without the kindness of CBU, Give Kids the World, and ultimately our Heavenly Father, we know this would not be a possibility. So, let it be noted that we boast only in the riches of the One with cattle on a thousand hills. Otherwise, this all just seems fleeting and insignificant.

California Baptist University

Our trip was fantastic. I plan to do several posts to fill everyone in on our adventures. Today is mostly about our wonderful host, Cal Baptist (what the locals call it). We thoroughly enjoyed our time with them and will proudly wear these awesome new CBU sweaters they provided us when we left on Friday.

California is a long ways away and with some kind of head wind, it is even longer. Our first flight to Phoenix was supposed to be 3 1/2 hours and ended up being 4 1/2 hours. The kids did great. And Michael was Super Dad, letting both kids sit with him for the entire flight. The next flight to Ontario was short and even had an extra seat for Andi's baby doll.

Michael was asked to speak during the university's SeekWeek. So, Monday, Wednesday, and Friday morning Michael spoke to 1200 students twice a day. Knowing that a 5 and 2 year old were not going to sit quietly through the service one time, much less twice, the kind staff arranged directions for us to a local park.

After Michael was finished each day, we were treated to a great lunch with the Spiritual Life Staff as well as some students that Michael spoke to. It was great to be alongside Michael during ministry and to have our children be around such great people.

I'm excited to share more later this week. The zoo, the beach, and of course, Legoland, still to come.

California Here We Come

Michael landed a sweet preaching event at California Baptist University over the next week. So, we decided we would make a family trip of it. Michael preaches on Monday, Wednesday, and Friday mornings. Therefore, Tuesday and Thursday are our play days.

We are so excited because in the year following Joshua's Give Kids the World Visit, he and his family, get into parks all over the world for free. Our kids love the zoo here in Nashville so the San Diego Zoo is going to be fabulous. More importantly to Joshua, is our plans to visit Legoland. He has been having dreams of roads paved with Legos for weeks now. I have no doubt Legoland will deliver to the fullest for him.

So, we look forward to sharing all the photos of fun with you very soon.