Thursday, November 28, 2013

Happy Thanksgiving

Nice and relaxing … that pretty much sums up our day. Jack was feverish last night - with temps ranging 100.1 - 100.4 bobbing up and down for an hour and then finally settling in at 99. Tibor, the super star he is, got up several times in the middle of the night to make sure his temp didn’t creep back up. (100.4 is when we need to call the doctor) 
This morning and early afternoon we lounged around the house, the boys played games and there was some intermittent brawling going on, Tibor watched Space Odyssey something or other and I ran to the store picking up a few groceries for the feast I was planning on preparing. We watched Planes later on in the afternoon - which I give a 3 out of 5 stars. It was ok, not my favorite movie. For dinner I made ham, (Chase’s choice of meat) mashed potatoes and gravy, sweet potatoes, green bean casserole, stuffing and some home made dinner rolls. For desert, we had good ole, no fail pumpkin pie. 

Jack has a few sores in his mouth and more down his throat so he really didn’t eat much today. Cold drinks and Luden’s throat drops have kept the sores somewhat manageable today. He has labs tomorrow, so I’ll have the nurse take a look and see what she suggests. They have a “magic mouthwash” prescription that is really supposed to help out, we might need to try that out. Other than that, nothing else exciting going on in our home. 

I’m hoping tomorrow Tibor will cut down the apple tree in our backyard. The apples are nothing special and it makes a huge mess, right along with the asian pear tree. Good grief, talk about bees this past summer. So if anyone is interested in some apple wood for smoking, let us know and we’ll save the logs. 

Below, Jack and Tibor are playing a game of Ancient Greek Battleship. 

Today I’m thankful for:
- My awesome coworkers at Duncan Aviation - your card and gift made our Thanksgiving super special. Thank you so much!
- FaceTime - it was great to see both our families. I think Jack was a bit sad we didn’t make it to Tibor’s family. I told him that maybe in the next week or two we can squeeze in a trip north to the farm in Wynot. He loves exploring the barns, checking on the cows and playing with the dog. 
- Spending time together as a family. There is never a dull moment having 2+1 boys in this house. Tonight the basement was converted into a RC track and now I’m pretty sure Chase and Jack are playing hockey in Jack’s bedroom. What’s that saying — Keep Calm and Carry On! 

Tuesday, November 26, 2013

Energy Levels And Blood Counts Are Dropping, But We're Doing OK

Ok, looks like chemo side effects are kicking in, and his counts are dropping, which is expected. 
But then again with sun setting at 5 who isn't tired? (A thought just occurred to me... Instead of fiddling with every single clock in the country, twice, every year, (for daylight savings time) why don't we just buy headlights and flashlights for the farmers so they can see in the morning?) 

A tutor for Jack has started coming, so hopefully that will help us stay on track with his school. We read now quite a bit more than before and do math verbally, but he does need to keep up with other things like recognizing consonants and doing math on paper. 

Jack has been saying when he grows up he wants to design sentry turrets, so this is how we do math:
"If you load your sentry with 250 bullets, and it fires off 100 of them, how many are left?" 
That one was a bit tricky, but he got it on the second try. 

So, one day at a time, monitoring his counts, getting ready for the surgery. 

Sunday, November 24, 2013

Having A Great Post Chemo Weekend

Wow, this chemo cycle was a breeze. (So far anyway, maybe side effects will kick in later than the previous cycles.)

Jack ate fine while at the hospital, he's eating fine at home, and has almost unnoticeable nausea.
He received doses of Daunorubicin, Adriamycin, Oncovin, and Cytoxan. 

We went for a walk outside yesterday, and to the mall to get Jack a new winter coat. Today, boys and I chatted with my parents, played a board game, and played some Call Of Duty. I also made some wheat muffins, while Sarah baked up a storm and cooked a nice chicken soup. 

Next up, scans, followed by surgery. That will be happening once his blood counts recover, probably in a few weeks. 

Today I'm grateful for:
- Jack feeling good, eating and sleeping good and just being himself,
- An easy cycle of chemo, giving us a breather, and giving Jack a chance to gain weight,

Thursday, November 21, 2013

On Their Way Home

Mom and Jack are on their way home. 

A few petting puppies visited Jack and other kids at the hospital, and that makes everyone happy. 

He looks skinny in that pic, but I think it's mostly lense being weird. 
He's been eating pretty decent in the hospital over the past few days. 

Today I'm grateful for:
- great support we continue to receive from coworkers, friends and family,
- Jack using dictation to send me text messages,
- spending a fun evening with Chase while waiting for Sarah and Jack. 

Wednesday, November 20, 2013

Mom Writes A Blog Post

Our day started out rather early at 4:30 am. With a bedding change, bright lights and all the commotion, Jack was thinking he was up for the day. With a few episodes of Good Luck Charlie (thank you Netflix) he was conked out by 5:30 and slept in until 8:30

Later in the morning, solders from Offutt AFB visited to deliver teddy bears. They are a wish bear, so Jack made a wish and one of the solders zipped it in the back of the bear where his wish would be forever safe. He giggles and tells me he’ll never tell me his secret wish. 

Lego building was next on the list. It ended up where it was mom building the legos while Jack was either running from a zombie in Minecraft, hatching eggs in Dragonville or trying to beat his last score in Subway Surfer. He has a system of toggling back and forth between games. Just as I was wising for an early afternoon nap, a 2:00 Bingo game started. Four games were played and a black out round. Jack won the third round and got to pick a prize from the game closet and scored some cool racing matchbox cars. Dad popped in after work, he had a meeting in Omaha today, so that worked out great. Cousins and friends stopped in for dinner, catching up and of course some gaming between cousins. 

This round Jack is doing super. No nausea, but I can tell he’s doesn’t quite feel like himself. He’s in good spirts, a bit bossy sometimes but is still my cuddle buddy. One of his medicines is a continuous drip for 24 hours, which limits us to not leaving the 6th floor. This is no fun because we would make our daily rounds to the lobby to throw some money in the fountain, pop in the gift shop to see what’s new and if the weather is nice, outside to one of the garden areas. 

The plan is to be released tomorrow after the last round of treatment is finished- which is 9:00 PM. It was originally 11:00 PM, but they were able to bump it up by two hours. Or we can stay until Friday morning. I’ll take a late evening release to sleep in my own bed anyday and I think Jack feels the same. 
I’ve heard a chance of snow tomorrow, so keep your fingers and toes crossed it’s nothing big and all is good to make the 45 minute drive home. 

Today I’m grateful for:

- My sister-in-law, nephew, and Tibor’s friend stopping by this evening to visit Jack.
-  All the great staff here at Children’s. This is our sixth time here, (about 30 days total) and you start to really know the nurses. They are all great and I really appreciate all they do.
- And I know we say it time and time again, but the incredible support system we have. Words are hard to come by how wonderful everyone has been to us. I look forward to paying it forward when the rough waters still and we can help other families going through a similar situation.

Tuesday, November 19, 2013

Doing Well (And A Movie!)

Chemo has started last night, around 10:30. Two drugs have been moved to 5 PM today and over the next few days, but one of them is straight for 72 hours, which means he'll be in the hospital until Friday.
(So not a short stay:) But it's OK, we don't have a better alternative, plus you couldn't ask for a better place to do that then Children's.

Jack is doing well today, he ate at least twice, and hasn't complained (much) about nausea. So, hoping for no mouth sores, or fevers. (Many chemo drugs cause mouth sores, which make it even harder to eat. So, you can imagine having no appetite, feeling nauseated, and having mouth sores, and then having a Bosnian dad nudging you to eat...)

Here is Jack passing the time with Legos:

This Saturday, the boys and I were home alone and we made this little "movie". (It's really a film, so that's why the movie is in quotation marks.) Many of you have seen it on my Facebook, but here it is for Jack's blog followers.
Gory movies are always the most fun to make, and this is just such a movie. So, make sure you watch it before you let your kids see it. It's all special effects of course, and we had a great time making it.

Sorry if you don't see the movie, the blogger service uses Flash, i don't have any control over that :( 

Today I'm grateful for:
- He ate and wasn't nauseous! An extra day of food in his system is hard to beat!
- FaceTime, for letting us video chat back and forth. (For free!)

Monday, November 18, 2013

Fourth Chemo Cycle Starting.

Ok, Jack was cleared to start the next cycle of chemo. This one will consist of three different drugs, given over three days. Past cycles consisted of two drugs, given over 3-5 days, but supposedly the drugs in this cycle are easier to tolerate than cycles 3 and 5. 

Here is a little pic of Jack and me doing some video chatting: 

There is a lot of that going on these days with him chatting with family members and to some extent school. 

Coincidentally, I am writing this post while stuck in the elevator, leaving work. 

A few things I'm grateful for:

- maintenance guy is here, I'm free!
- nice weather this weekend and tonight, which makes trips to Omaha safer and more tolerable. 
- playing nerf wars with the boys on Saturday. (We spent about 2 hours playing real life capture the flag. )

Thursday, November 14, 2013

Duck Dynasty Special

For those of you who are fans of Duck Dynasty, here's a pic of those two goons funnin' with the D.D. iPhone app.

I myself am only a fan of the original Dynasty and Joan Collins. 

A slight delay on this chemo cycle, Jack's counts are a bit on the lower side, so the docs will wait until Monday. I'm happy about that, as we'll get another weekend to play together. We may be investing in a new rocket. 

Wednesday, November 13, 2013

Rocket Shooting

Today was the highlight of our week...

A coworker's friend (pictured below) invited us to fire off some rockets with him tonight. 
Jack had been waiting for it for a few weeks and was stoked to get to see these big rockets. 

We fired three different rockets, with minor damage to two of them, while the third one failed to deploy a parachute and was crushed upon "landing". (That one was ours, and I take the full responsibility for not packing it properly.)

We also got some fish this weekend. Meet Domino, Lemonade, Cookie, Monster and Root Beer on the very right. 

Things have been pretty normal for the past couple of days, which is a prelude to another cycle of chemo. That should be commencing on Friday. 

I'm grateful for:
- a few normal days,
- getting to fire rockets!
- Jack being happy to have the new fishies. 

Monday, November 11, 2013

Three Day Weekend

We had a super nice long weekend here. 

On Saturday, we did a bunch of maintenance around the yard and the house and the cars, getting ready for the winter. We got a few rocket engines too, but haven't fired them yet. 

On Sunday, we had a fantastic day with my host family (the Uhings) visiting and catching up. Jack thoroughly enjoyed company and attention and was sad to see them leave. 

Today, it was he and I at home, and we read books, played video games (Team Fortress 2), and, get this -- set up his own Apple ID so he can get his own apps. 

He's been eating surprisingly good, knock on wood, so I'm happy about that. 

If everything holds steady, he should be starting a round of chemo (fourth cycle) on Friday. 

I'm thankful for: 

- a fantastic weekend all around. Got a bunch of stuff done, great visit with relatives, Blackshirts doing their stuff,
- playing TF2 with Jack. (I showed him the importance of properly placing, defending and maintaining a sentry gun. It's a father-son thing.)

Friday, November 8, 2013

Infusion Complete

OK, he got some more fresh blood today, I believe to boost the red cells. 
His type is B-, and as they were out of it, he received some O-.
It went well though, and he requested some hamburger helper for dinner. Not the healthiest, but I'm going to grind up some cauliflower and broccoli and half and half into the sauce so he'll still get some nutrients. 

I got lots of positive comments about his funny pics, so here are some more:

Hopefully that's all the visits we'll need until next week, when we're supposed to start another round of chemo. 

Thursday, November 7, 2013

Infusion Time

We had a lab done on Tuesday, and while the infection fighting white counts were good, his other levels were low. (Platelets and whatnot.)
So we had another lab today, and his platelets were still low, so the doctors ordered a round of infusion. (Platelets today, blood tomorrow.) This was done in Lincoln, so that's pretty convenient. 

While waiting around and receiving the infusion, he passed the time making funny pics on the iPad:

Tuesday, November 5, 2013

Doing Good

Ok, I think we may be back on track. Jack is eating and his blood counts are good. (He had blood tests today, levels are good. Good enough as a matter of fact, that he doesn't need any more neupogen shots for now.)

So we have a bit under two weeks to fatten him up for the next round of chemo. 

He just requested some watermelon so I made a quick trip to the store to get some. 
There's quite a bit of that -- running to the store or fast food joints to get him whatever he is hungry for.

Jack and Sarah went to school today to set up a tutor to come visit so he doesn't fall back too far in school. He is starting to slip a bit, but I'm confident we'll catch up. I will employ all my tiger dad training that came with me from the old country. 

Tonight I'm grateful for:
- still fever free!
- return of the appetite,
- no more shots until after the next round. 

Monday, November 4, 2013

Stardate 11042013

Captain's Log

The wretched beast that has been haunting the bowels of my ship has been expunged. 
My crew is weary, but at the moment, the poop deck is clear. 

Naturally the whole ordeal has left me quite pooped, and I will retire for the night. 

Captain Jack. 

Sunday, November 3, 2013

He's Doing Good, But It's Still Touch And Go With Food

Well, we're still trying to go a day without vomiting, I'm hoping maybe tomorrow. 
This afternoon Jack did have a protein mix with ice cream, and a little bowl of cereal, and then requested Cane's chicken strips, of which he ate one. 
On the way back from Canes we recited our favorite Spongebob skits. As far as I'm concerned Spongebob is right up there with Johnny Carson and Groucho Marx when it comes to funnin' around. 

Greasy food is not the best for his stomach, but he really wanted it. I sure hope it stays down tonight. 
Also, he hasn't had a BM in about a week, but he hasn't had too many solids either, so I'm not too concerned. 
He is peeing good and tooting, so at least things are moving. 

He had a trip to the ER last night, nothing serious, we weren't sure if his central line was properly flushed, so we wanted a trained professional to look at it. 
I'll elaborate more on the line flushing and maintenance in the next few days. 
Anyway, everything was nominal, and he was home soon after the visit. 

He's in bed now, so we're hoping for a quiet, uneventful night, and maybe Skyping with his class tomorrow. 

Today my grateful list includes:
- Jack earring the protein mix and ice cream. In the past he refused to touch it, but today he really liked it. That mix packs a nutritious punch, so if we get him to like it, that'd be great. And it actually tastes very good. (Let's just say the other half didn't get thrown away... Yum, yum)
- Sarah doing all the technical stuff, like flushing his line and giving him his nightly shot,
- Chase's friend spending the night last night and helping Jack feel included. 

Friday, November 1, 2013

Halloween Update

The last few days have been pretty touch and go with the little guy. Between nausea and decreased/nonexistent appetite, he hadn't really eaten or kept anything from Monday until today. And considering he had a surgery last Wednesday, his fuel tank has been pretty low. 
He did have breakfast today, a little bit for lunch, and seems to be excited about dinner. So I think we've made it over that hump. 

We tried to go trick or treating, but he got tired before we reached the first house, so he helped hand out the candy. He was pretty excited about that. Luckily his awesome brother and his great friend did some recon trick or treating, and brought him a hefty bounty. 
It's ok, we're just glad he wasn't in the hospital for Halloween, that would have made him sad. 

Here he is in his Ninja Morph costume. Which as far as I'm concerned takes all the fun out of a ninja costume, and defeats the purpose of a Morph suit. But hey, it makes him happy. 

He feels OK now, we're getting ready to watch Monsters U.

Today I'm grateful for:
- him being home and getting excited for Halloween,
- Chase getting some candy for Jack,
- no mouth sores from chemo. That would make him eat even less.