Tough Choices

This week, my family is forced to make some very tough choices about something we haven't talked a whole lot about. My dad has Parkinson's Disease. The Parkinson's that my dad was diagnosed with 5  years ago has now been further diagnosed as Lewy Body Dementia. While most people think of Parkinson's and think about the physical symptoms that accompany it, like the inability to walk and shaking hands, Lewy Body adds some additional symptoms. The symptoms of this progressive disease require our family to move him to an Alzheirmer Care Facility. 

Less than two years ago my dad was sitting on the bench as a district judge. This terrible disease has caused dad's body and memory to deteriorate at a rapid rate. He has good days and bad days, but unfortunately the bad days vastly outnumber the good ones. And the good ones are getting less good.

Some days he remembers who everyone is; alot of days he doesn't. Some days he can pick out what he is seeing as a hallucination, and some days he can't. 

So I'm in Texas a few days early, visiting some facilities, sorting through finances, and being a part of the decision-making process with my family. 

Here is one of those parts of life you never really expect and aren't really prepared for. 

Only 10...

...Days until Christmas.

Happy Birthday Mom

Ramona Casey grew up in the tiny farm town of Causey, New Mexico. At the age of 4, my mom met a sweet little boy named Joe Parker in her Sunday School class at the local First Baptist Church. During their high school years they began to date and both realized their desire to pursue higher education, something uncommon in this tiny town. Upon high school graduation, they were accepted at the University of Eastern New Mexico, where they both pursued degrees in education.

Shortly after starting college, at the age of 19, they were married with a borrowed dress, a wedding cake made by her sister, and yellow daisy adorning the church. Only a few years later, my mom experienced difficult loss through a tubal pregnancy that left doctors unsure of her ability to have more children. Thankfully, God blessed them with 3 daughters over the next 7 years. During that time, mom completed both her bachelor's and master's degrees in education and began a teaching career that would last nearly 20 years.

Mom was always a great support to my dad as he pursued his career as an attorney and eventually as a judge. Somehow my mom always managed to work while also keeping us fed with wholesome homemade meals. Not only that, but she also showed me and my sisters how to pursue Christ through a daily quiet time and by using her spiritual gift of hospitality. I can't remember a time without extra dinner guests, planning the next year's Labor Day breakfast, or hosting a weekly Bible study.

As my children begin to learn loving books and Bible stories, I am reminded of the many hours my mom spent reading to me every night. I also think of the night I became a follower of Christ. I was 10 years old and on the way home from the grocery store, my mom and I began to talk about Jesus' place in my life. After we pulled into the garage, we sat and prayed together. It is a vivid memory in my mind and a foundational moment in my walk with the Lord. 

Thank you mom. Have a very Happy Birthday. 

The Memphis Report

It was a great race for all of us. My 3 friends and I were able to complete the half marathon in just under two hours. We all had made this our goal, but I was unsure of my ability to keep up with everyone. Thankfully, the many posters along the way that reminded us of the many children we were running for combined with the encouragement of my friends, we were able to get it done. Check out their posts here and here.

Michael also did a great job in the full marathon, improving his time, once again, by 20 minutes from the last marathon he ran. I am so very proud of him. You can read a little more about his thoughts here. Just to give you a little more insight into my husband, Michael crossed the finish line looking deservedly tired and claiming this was his last marathon. Today, he using words like someday and maybe. Next week, he will start talking about when he will start his training for a marathon in the spring. Maybe he will snap out of it and be finished or maybe he will run 25 more. Either way, he has proven that he is not only an amazing athlete, but also a person of courage and determination.

If you have ever considered running a half marathon, this a great one to do. A great cause, a good (flat) course with a fun finish line. On the other hand, according to Michael, the second half of the marathon is a bit bleak with a few more hills at the very end than he expected. Still a great cause, but it takes a lot more heart to run when there is no one cheering. 

Thank you Jason for the pictures.

Memphis

Tomorrow we run. Michael will run the full and I will run the half. I am really looking forward to this race, but even more looking forward to the weekend as a whole. We have the privilege of hanging out with some really quality people:  the Seavers, the Smiths, and the Hayes.

I look forward to telling you all about it when we return. Have a great weekend.

Our Girl

Here's Andi using her spoon all by herself. Fruity Cheerios in a Dora bowl. What could be better?
Andi got her first Christmas present early while her Gram and Papaw were in town for Thanksgiving. Her first baby doll stroller. No hesitation here. She knew just what to do with it.
Doesn't she look so big here? I didn't think girls learned how to hold that sassy stance until they were at least 10. Boy, do we have our work cut out for us. But with that sweet grin, it is worth every moment.

Daddy's Home

While Joshua has continued to feel pretty yucky today, I'm reminded of what a wonderful sound it is to hear Michael come in the door. He is great at allowing it to be a time of relief for me. More importantly though, it is a sweet time for him and the kids. I usually just sit back to watch and listen.

Andi usually runs to him and yells, "Mama! Mama!" and then snickers because she knows how to say Daddy. Joshua is most likely hiding in the same spot he was in the day before waiting to surprise Michael all over again. Then, a few weeks ago Michael started asking Joshua to share three things about his day with him. It is a great tradition because now Joshua has taken to asking Michael the same question. Right now, the answers on both sides usually includes something about food and maybe something about a friend. My prayer is that this can continue into those dreaded teens years with everyone included.

Thanks for being such an amazing father and husband to us. We all love you so much!

Couches and Stadiums

Joshua was pretty sick at his stomach every afternoon this week. We weren't certain if he would be well enough for us to use the Titans tickets the Leukemia/Lymphoma Society had given to us. Thankfully, Joshua woke up Sunday morning feeling good enough to try.

Joshua spent most of his time waiting for the next snack and watching T-Rac, the Titan mascot. (Does anyone know why the Titans have a racoon for their mascot? We're curious.)

When I said most of his time, I meant the time that he was a awake. The poor guy was still worn out and slept from the end of the 2nd quarter to the start of the 4th.

The game was a great experience that I'm glad we were able to be apart of. Unfortunately, this happened to be the game that broke the Titans 10-0 record. Final score Jets 34 Titans 13 :-(

A Long Day

We are finally home from the clinic. Today was a very busy day with tons of patients trying to get their appointments finished before the holiday. Because of the large number of patients, the wait for each step of our day was a little longer than normal (not the best day to be without food, since Joshua couldn't eat before his spinal tap). That being said, Joshua, as usual, handled the day like the champ that he is. 

He waited in the clinic waiting room patiently. 

He waited in the line to have his port accessed patiently. 

He waited for Dr. Zieber to be available to see him patiently. 

He waited for a chair on the chemo floor patiently (since they were all full). 

He waited for his IVIG to finish patiently. 

He waited for his Vincristin to be pushed through his port patiently.

He waited in the surgery waiting room patiently.

He waited while they gave him two breathing treatments before sedation patiently.

He waited for the sedation team to come to the surgery floor patiently.

He waited for his Icee to come after he woke up from the spinal tap patiently. (not the toughest wait of the day)

He waited for our car to come pick us up. (yes I use valet on sedation days and I'm not ashamed of that)

Ironically, when I left to pick up Joshua's medicine at the pharmacy and they didn't have it ready. I quickly gave a big sigh and asked how long I would have to wait. Maybe I should take a cue from my boy!

My friend, Rebecca, refers to this portion of our 12 week cycles as the "dark days." I want so much not to feel that way and I pray each time that my emotions will not be landblasted. Unfortunately, I am always met the harshness of this experience. Today, however, I am graciously reminded that the Lord is my LIGHT and my salvation and that He, above all else, is the stronghold of my life. (Psalm 27:1-2) Today, I will do my very best to rest in that.

A Second Try

Because of Joshua's hospital stay, his doctors chose to postpone last week's chemo and spinal tap. Instead we will go tomorrow. Following tomorrow's appointment, he will take the usual five days of steroids. As you have so many times before, please pray for patience as Joshua waits to eat until after the spinal tap, for a smooth procedure, and for minimal side effects throughout the week to come.

Quality Play Time

Andi has discovered her girly side. Here she is blow-drying Abby Cadaby's hair while wearing a her new princess crown. Thank you Seaver girls for getting her started! I'm sure Christmas will add to the girly fun.

Joshua is still really into his action figures. I love to see him take such care in setting up the story. Here he is setting Batman in a battle against the pirates and the knights. I asked him who was going to win. His reply, "Batman, of course." I guess I should have known that.

Home Again

Everybody's back home today after being discharged about 11:30. All seems to be well. We're hoping that we can get back on the "no hospital train" again after the last 4 weeks and 3 hospital stays. Thanks for praying for us.

Moving Rooms

Well, it happened again. We were asked to move to another room. When we left the ER, we were placed in the Myleosuppression Unit. This unit is saved for HEM-ONC (hematology-oncology) patients like ourselves. It is so great to be in that unit because we know all the nurses and they know our history of being there. When we got to the floor, they weren't sad to see us, but excited. They knew this visit was just a blip on the screen of a whole bunch of terrible previous visits. They always celebrate how far we have come, how big Joshua has gotten, and how Andi has grown (they always remember her name and ask to see pictures). I think it probably feels good for them to see some of their patients thriving and for us to remember the journey that we've already walked. On top of all of that, they give excellent care. The respond promptly and take initiative to ask doctors questions on our behalf. Unit 6A is the tops.

If you read the post about the last time we were asked to move you probably saw that Michael made a very convincing argument that we handled the move with grace and dignity. What you didn't see was my reaction. I was angry and this very pregnant and emotional mom did not take it well. I had a very sick little boy that wasn't sick enough to be in that unit. I couldn't understand why they didn't see that the way I did. 

This time is much different. When our nurse came to tell us that there was a transplant patient that needed our room, I asked how soon we could be in another room. Since the last room move, we have known 6 children that lost this terrible fight. 5 of them were transplant patients. Today I just wanted to do everything I could to help someone else's fight. Because, as hard as it is to believe, Joshua is in the final rounds, regardless of the 13 months we have to go. Today I just wanted to be thankful that Joshua's fight has not had to include a transplant of any kind.  Today I just wanted to pray that the family that moved into our room is able to win their fight against cancer. Please pray to that end with me.

One More Day

The word from the doctors is that Joshua will probably get to go home tomorrow morning. That's 48 hours after he came in. The good news is that he's feeling better today and started eating again. So one more glorious night in the hospital.

Good News, Bad News

The good news is that Jana and Joshua are being moved upstairs from the ER. That's very good.

Bad news is that they are going to keep Joshua for at least 48 hours again. So there you go. Since this is the third time in 4 weeks we've been in the hospital, we're praying that he would be able to kick whatever nagging viral / infection he has that keeps putting us in there. We'll also be spending some time talking and praying about if there's something in his schedule that needs to change to keep him out of the hospital.

Also, we were supposed to have an appointment today for Joshua to get his intravenous chemo and have a spinal tap. That's going to be moved to a week from today.

Still in the ER

It's approximately 11:10 am, and Jana and Joshua are still in the ER. No room at the inn for the little boy.

He ran fever all night, and still doesn't feel very good. Not eating very much, so we are hoping he doesn't have some sort of stomach bug.

Jana had the distinct pleasure of "sleeping" on a fold out chair last night. I've done it; it's awesome.

More soon, but we're still waiting to talk to a hemoc doctor to see what's up.

Back to the Hospital

I hate to write it, alot, but Joshua didn't feel well when he came home from school today. We watched him all afternoon and evening, but he didn't have a fever . . . until 8:45. So Jana and Joshua are headed to the ER. Again. Sigh.

Would you please pray for us? We're all a little discouraged, and in fact, I'm coming off a day of food poisoning so not at my best. Please pray if you read this tonight that Joshua doesn't have to be admitted to the hospital and he can come home.

The New Layout

I have never considered myself to be very lucky. Blessed, of course, but not lucky. Now, since the blowup of blog giveaways, I'm starting to change my tune. First, I won the very useful, and super nerdy Couponizer. And then a few weeks ago, I won a blog redesign worth $60. WOW! Thanks to link on MoneySavingMom to The Glorious Mayhem. I left a comment and low and behold I won. 

So, here it is. It was designed by RS Design. She did a great job, especially considering that Michael and I asked for something neither feminine or masculine. Revka was great about answering questions and going with whatever flow I sent her way.

Also, the photos at the top were taken by my dear friend, Andrea Rhodes. She is an amazing photographer and all around good person. You can check out her site here.

It Was Exactly 48 Hours

So, it has been brought to our attention that some of you assumed we were still in hospital since we had not updated. We showed up at Joshua's MDO yesterday and our arrival was clearly a surprise to everyone. Then, when we saw some friends at the park, they had the same reaction. So, I apologize to everyone for being slow to share the good news.

The doctors let us go home at precisely 9pm on Monday. Apparently, having the chills means the doctors need to watch both Joshua and his blood cultures for exactly 48 hours. It was very different to be waiting by the door to see the clock tick over and hear the nurse tell us it is OK to go. Usually, we are watching counts and waiting curiously as we try to read the doctors minds about when we will go home. It was kind of nice. Nice in that I hope we don't go back to the hospital soon way.

I Got Chills, They're Multiplyin'...

We learned something new this weekend. "Chills" are a big deal. Who knew?

Joshua had a great day on Saturday, even completing some home improvements with daddy (with only one extra hole drilled in the wall of the living room.) Then he took a bath, and got out saying he was so cold. And he couldn't get warm. Then the fever came, so we called the ER. And we said the dreaded word: chills.

Apparently "chills" can be an indication that there is an infection in his central line, the port in his chest through which he gets his chemo every 4 weeks. So even though his fever wasn't high and hasn't returned, and even though his counts look good, here we sit on the 6th floor in our own little room of the children's hospital.

The docs have taken some blood cultures to make sure there's no infection; so far so good and they're not really concerned. Nevertheless, the word is 48 hours for observation. The good news is that this is one of the few times we have been in the hospital where Joshua has been well enough to leave his room, so we can actually get out in the hospital a little and look around. Hopefully we won't be here too long.