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.

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.

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.

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.

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.