A Quick Holiday Update

We had a fantastic Christmas, boys got lots of fun presents and are still enjoying them. As a matter of fact, even Sarah joins in on the Nerf wars in the basement. Two on two team deathmatch baby!

And, thankfully, boys slept in until 8:30 in the morning, rather than getting up at the crack of dawn to see what Santa brought. 

Jack is doing well, although he's had a runny nose for the past couple of days, we'll see if it turns into anything to worry about. 

We'll see more cousins this weekend, then off for a surgery follow up on Jan. 2nd. I think the surgeon wants to check on Jack's healing progress, and maybe he'll give us an idea of when to get ready for the fifth cycle of chemo. 

Otherwise, things are pretty normal around here. 

Time to lock and load, so here are a few things I'm thankful for:

- playing board games and Nerf wars all together,

- the weather, seriously, can it get any better for December?

- a great Christmas with family and happy kids. 

Merry Christmas

Getting Ready For Christmas

Well, Jack got a very special letter from Santa today, which informed him he was on the nice list. Santa also said he's watching Chase which made Jack very happy and giddy. 

We will be traveling this holiday season, and I'm very happy to be doing just that. Jack spent his birthday and Chases birthday at the hospital and didn't get to see any cousins for Thanksgiving, so we're all happy to be on the road and visit with family. 

He is doing really well, and with a break from chemo it has really been pretty normal around here. 

Sarah's coworkers took Jack and Chase shopping today, and boys apparently didn't want any toys, just some gift cards to online app stores. (They're such nerds :) (I like to tease them about their love of computer games, but rest assured, I get pretty excited when Chase asks me to set up a game server for him and his friends.)

Here is Jack toiling over a letter for a pen pal. It took him (us) an hour to get it written. But at least his handwriting is readable. 

Today I'm grateful for:

- being able to travel and visit cousins,

- a "free" lunch today,

- our thoughtful and caring coworkers,

- my parents who provide me with awesome jokes for the boys

Union Bank's Magic Moment

A while back, one of Tibor's co-workers nominated Jack for a Magical Moment sponsored by Union Bank. We were one of the lucky 10 chosen to receive a special wish. With Jack being such a trooper throughout all this treatments and surgeries, we thought a special bedroom makeover would be just perfect. With his love for rockets and space, we settled on a space theme. Our home has been a bit of a zoo the last few weeks with painters, carpet people and designers coming up with something super special for his room.
Today was the day for everyone (including the news crew) to present us with some special gifts.
Here's the link to watch the clip that was played on tonight news:

http://www.klkntv.com/category/190066/klkn-channel-8-video?&clipId=9648906&autostart=true

We would like to give special thanks to everyone who donated their time and talent to make sure Jack has a super cool bedroom.

Mike from Mural Mural Graphics:  oh my... the mural he painted on Jack's wall is magnificent! His talent is amazing.
Dan and Carl: Thank you so much for painting the basement and for Diamond Vogal for donating the paint. (pst... the fart machine you guys gave him is the best, he loves playing pranks on everyone! Must be a boy thing.)
All the gals at Design Works: All the decor you picked out for Jack's room looks beautiful and works so well together. Chase likes to write surprise messages on his dry erase board for Jack to see later. Most of them are in good taste. :)
TG Construction: Thanks for the carpet in Jack's room and the basement. Working with Carpetland was wonderful, who knew all the options for carpet.
Lori, Tibor's co-worker: Thank you so much for thinking of our Jack.  It warms our hearts knowing how many people read the blog and have such big hearts.
Union Bank: Without your generosity, none of this would have been possible. Thank you for reaching out and showing your support and warmheartedness to our community.

Thank you again, you all have a special place in our hearts.

Recovering From The Surgery

Just a quick update...

For the first few days after the surgery, Jack was pretty sore and had a hard time walking. 

Last night, we got him out of the house for a little walk at Toys 'R Us, which gave him great exercise. 

By today he was even running around the basement. 

So, the recovery is going well. 

We Are Back Home

Well, that was quick...

We are back home already, and Jack feels and acts much better. 

He was quite a bear today, even telling his doctor to leave the room and leave him alone. 

But, now he is back to his nice self. 

I can not believe that yesterday he was in a two hour surgery, and tonight he is home, on the couch, playing on the iPad.

Obviously, I'm very grateful he is home and in good spirits,

I am grateful for his surgeon, who is an artist with his blades, and 

Spending quality time with Chase, watching Trailer Park Boys. 

Out Of Surgery, Plus A Photo Of The Tumor

Ok,

We've been waiting for today's surgery for a long time. The surgeon got a really good look inside Jack, and in addition to removing the tumor, everything looked clean, which is very encouraging. 

Neuroblastoma related rumors often start around the adrenal gland, and his looked clean. There were no infected or out of place lymph nodes either. 

Jack has three very small incisions on his navel line, and then a bit longer one just below his "bikini line".  (An inch, inch and a half maybe.)

If he pees tonight and today, the surgeon felt comfortable with maybe even releasing him tomorrow which would be great. 

And, here is a photo of the tumor being extracted:

The black stuff is from cauterization. The tool they use has a saw to cut and uses ultrasonic vibration to cauterize. 

Jack is napping now, which should help with his pain. Here's hoping he comes home tomorrow, though as far as hospital stays, one won't find a much better place than Children's. 

Next steps:

- Finishing up the chemo protocol with one more cycle of chemo. (He had the same chemicals in cycle 3, and they were hard, but we'll get through it, and know what to expect.)

- starting the autologous stem cell transplant, during which he'll be hospitalized for at least a month, at UNMC. 

I have a lot to be grateful today, but here are the two I'm most grateful for:

- a successful surgery,

- Jack's insides looking clean.

Hardware

We talk a lot about Jack's central line and port and the maintenance that goes along with his fancy hardware.

Central Line: this guy (photo on the left) is connect directly into his jugular vein. The dressing is changed once a week and the area is scrubbed with an antiseptic soap to keep it super clean. The soap stings, and the process is quite unpleasant for Jack. I'm not sure if it stings *that* bad, but I don't question his emotions. 

The white circle thing is a slow release antibiotic, to keep the cut in the skin clean. 

Sarah flushes the two access lines (blue and red) with a solution called Heparin every night. They both wear masks and gloves, and the blue and red caps are sterilized using alcohol wipes before flushing. Heparin stays in the lines and prevents them from closing up. When Jack has labs drawn (twice a week), they are able to just connect the syringe to one of the lines to draw the blood. No more finger pokes! 

Since the dressing can't get wet, Jack can't have any baths, only showers. We put on an aqua guard (a sheet of plastic with sticky tape around edges) or sometimes we use press and seal Saran Wrap (which works better) to keep the dressing dry. 
The central line is fairly new, it was installed when he had his white cells harvested at UNMC. When we're in the hospital, he receives all his fluids, meds and chemo through this line. 

Obviously, cleanliness is the name of the game here... daily flushes, weekly changes, no getting wet, local antibiotic...

Power Port: (pictured on the right) This was put in right when he was first diagnosed and is also connected to a major blood vessel. It's accessed using a needle, and then a dressing is put on to keep the needle in place. Before we would leave for the clinic/hospital, Sarah would apply some numbing cream to help so it wouldn't hurt when it was accessed. Once connected, he would receive all his meds, fluids and chemo though the port. This access method required less maintenance, as once we would leave the hospital, the needle was taken out and he would be good to go. Jack could take baths and even go swimming if he wanted. 

Since the central line was installed, his port is unused and is only accessed once a month to get flushed to keep it from clogging up. 

In essence, both of these access lines do the same thing. One is just bigger, allowing for faster cell harvest and transplant, while the other one requires significantly less at home maintenance (but accessing it required a poke, which too was quite upsetting for Jack.) 

"I'm not getting dressed and just going to wear my PJs all day"

As I looked outside this morning to see the white fluffy snow (yes, I love snow) I was thinking how fast winter came and where did fall go? Fall is our favorite season and I really don't remember the trees changing or the evenings getting cooler. About that same time, Jack (we also call him Buggy) with his big blue eyes and bald head ran to the window to join me to see the snow. Time has certainly flown by and sometimes stood still since the beginning of September. At the same time,  Jack declared he was not getting dressed and planed to stay in his comfy PJs for the rest of the day. Fine by me. I am a firm believer in picking your battles with kiddos - and wearing jammies on a Sunday is the least of my worries.

Our weekend was busy doing house work. We've been slacking off a bit on the "to do list" and it was starting to get out of control. It was actually nice, we kept our minds and bodies busy and the boys played video games. Minecraft is still hot as ever around here, and when Chase's friends join in, excitement flares. When Chase has FaceTime active chatting with friends, you would think his room is filled with kids with all the chatter going on. Hey, if they're happy, so am I.

Bosnia qualified for the World Cup and this weekend they announced groups which was pretty exciting.  If you didn't know, we're not really football fans. I know, I know, Huskers and all doesn't really get us excited but World Cup games coming up next summer is all the talk around here.
(United States is in a very tough group with Germany and Portugal, and with a lot of travel involved.)

I'm graftul for:
- Amazon and Target online. Thank you for helping me get 80% of my Christmas shopping done.
- Snow- white fluff is way better to look at than 200 shades of brown, right! :)
- A low key and productive weekend. Oh and The Little Mermaid is on tonight too on Disney.

Done With Scans, For The Time Being

We went today to do the MIBG scans at UNMC which went well. We haven't received any results, but at least we don't have to go back tomorrow, as they took great pics. 

We learned a lot about the nuclear medicine there, well not a lot, but more than we knew before. 

For example, the machine (camera, as they call it) they used is only 6 years old, and they have five of them at the research center. 

They get their radioactive medicines from a distributor in Omaha, who have their own centrifuge where they can concoct some of the needed medicines. 

Here is Jack waiting for the camera to do its thing:

Unless we hear the results of these scans, and we may not, the next thing on our agenda is surgery at noon on Wednesday. 

CT Scan News

Today we were at Children’s for a CT scan to determine how the cancer is reacting to the chemotherapy. I received a call from the surgeon this afternoon with good news. He’s very happy with the amount of shrinkage and has scheduled surgery for next Wednesday. The plan is laparoscopic surgery, which is a 1-2 day stay, but if larger incisions are needed, it will be a 3-4 day stay. 

The two major masses - one wrapped around his aorta in his abdomen area, was 7-8 cm and now it’s
1 cm and is not longer attached. (They are especially happy with this one, aorta being a major blood vessel they prefer to keep lasers away.) 
The other mass that is by his pelvis/rectum was 10 cm and now is 5 cm. He had other small masses in his abdominal area that are almost 100% shrunk. We’ll have more details after the MIBG scans on Thursday and Friday.

For the MIBG scans they inject a radioactive substance through his central line and the compound attaches to any neuroblastoma tumor cells. When they do the scans, the cells/tumors light up. 
They will scan his whole body, making sure no cells have snuck out of the abdomenal area. 
I remember very well the glowing blobs on the screen the first time around and the tech not being able to tell me anything. (Not because he was being mean, but he’s not a radiologist and can’t officially read the scans) It’s was pretty hard sitting there watching. 

Schedule for the next few days: 
Wednesday: UMNC to get radioactive drug injected
Thursday: Scans
Friday: More scans if necessary.

Grateful for: 

- Seems like a no brainer - great news from surgeon.
- Jack being a super star through all this - I mean all the waiting around we do and he barely complains. 
- For all the prayers and thoughts from everyone. Thank you!

Oh and one more note that will make you chuckle - Jack plans asking the doctor if he can keep his tumors in a baggie and store them in the freezer for ever and ever. Hummm…

Scans Scheduled For This Week

It's been a long day for Sarah and Jack. 

They were in Omaha this morning at 9:30 and started the lab work (checking blood counts.)

His white counts were fine, but platelets and hemoglobin were low, so he got transfusions of those two. 

They were two separate transfusions, each one taking a few hours. Looks like they are about done and will head home soon. 

Doctors are ready to start scanning him this week, tomorrow they will start with a CT scan, and Wednesday and Thursday will be MIBG scans.

 http://www.insideradiology.com.au/pages/view.php?T_id=13#.Up0Sg7K9KK0

Part of Jack's treatment is for doctors to determine if MIBG scans are useful for diagnosing and treating his type of cancer. 

The results will likely go straight to doctors for their interpretation, and they may discuss them with us this week, otherwise I suspect next week. A lot of different eyes will look at them to make sure they're all in agreement on the findings and course of the treatment. 

If everything is as they expect, next step will be a surgery. Maybe next week, but we really don't know. 

Today I'm grateful for:

- fever was gone this morning,

- they had his blood type, so less chance of an adverse reaction,

- calm weather.

Off To Children's With A Fever

Well, it was a very nice, low key, long weekend until this afternoon. 

Jack got a fever of around 101 and is in process of getting transported to Children's. 

He is currently with Sarah at St. Elizabeth's in Lincoln, getting a blood lab, chest X-rays, a nose swab, and urine sample. My guess is that doctors are trying to identify whether he has a bug of some sort, or if the fever is caused by low blood counts. 

It's not unusual to get fevers during his type of a treatment, so all we can do is follow doctors' orders and wait it out. 

So, that's where things stand currently, I'll post more details as I get them. 

In addition to all the standard things to be grateful during thanksgiving (friends and family (oh, and football, right!)), I'm also grateful for:

- tomorrow being Monday, and all the docs will be back at work, and transfusion center will be operational if needed. It would have sucked if he got a fever on Thanksgiving day. 

- the couple of sores in his mouth have healed. He was eating normal today, and was drinking OJ like it was going out of style. (We had to keep OJ away for a couple of days because of its acidity.)

- Sarah's mom coming to Lincoln and helping us take some nice family photos. 

UPDATE: OK, looks like he's not going to Children's after all. He is not showing any flu type symptoms, and his counts are not too terribly low, so they're letting him come home tonight, and we are just to watch him. I think the other tests came back clean too. 

Here is a pic of him waiting for the andibiotic drip to complete, and then they're getting discharged: 

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! 

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. 

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,

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. 

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.

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!)

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. )

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. 

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. 

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.)

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. 

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:

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. 

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. 

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. 

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. 

Got The Punkins Carved

Jack's been pretty woozy all day, not leaving his little "emergency" bucket too far away. But, he's been keeping what little liquids he's had down. 

Maybe he'll have a few bites for dinner, and hopefully will be able to eat some more in the next few days. In the evening he usually feels better. 

We got the pumpkins carved tonight and are on track to go trick or treating tomorrow. 

I'm grateful for:

- getting to carve the pumpkins with the boys,

- no fevers or infections,

- no vomiting, except for Chase's pumpkin. (Did you catch it?)

Back At Home

Ok, Jack and Sarah made it home a bit ago. 

He even had a chicken finger after getting released, and nibbled on a second one when he came home. 

He has some ringing in his ears, which is a common side effect of one of the chemo drugs. 

We will see what comes out of that in terms of permanent side effects. 

He seems well otherwise. Chase and Jack are watching RC (remote control) videos in Chase's room right now. 

I'm thankful for:

- having everyone back home,

- spending time with Chase, talking about guy stuff, and watching guy movies. I think he had his first BK Whopper tonight. 

My Spooctacular Little Boy

Ok, as promised, here's a pic with Halloween decorations. The Constant infusion of IV fluids makes him pretty puffy. 

The scull's name is Steve, though I wanted to name him Scully. 

Jack is pretty happy when all the nurses notice the spiders and hanging witches.  

Chase wrapped up a blanket on the bed, and put the scull on top of it, making it look like it was a person lying in bed. We didn't think nothing of it, until one of the nurses noticed it and got pretty spooked. It was pretty funny actually. 

Nothing much else to report, he is holding steady. Chase and I had a dinner for kings, Raman noodles with vegetables, leftover beef and vegetable soup, followed by banana bread and decaf Earl Gray. (Chase liked a little touch of class at the end.) WE MISS YOU MOM!

Today I'm grateful for:

- decorations making his IV pole pretty fly and brightening up his room,

- a list of Halloween jokes he got to share with doctors and nurses,

- spending time with Chase

Aha, a little update, here he is rocking a PBn'J sandwich!

Well, another update, PBn'J came back up. So no food for today :(

Late Sunday Update

It was another long night for us at the hospital, just making sure Jack would go to the bathroom often and get the chemo out of his system. We would get him up every 60-90 minutes, so none if us slept good. 

Jack was a bit nauseated in the morning, so he got some Benadryl, and then slept from 10 until noon. 

We didn't get to go outside, so we didn't take any pics :(

He didn't eat the best today, some mac and cheese, goldfish crackers and sunflower seeds, and some barbecue flavored chips. He drank one Capri Sun, and a little bit of lemonade. We had company today, and Jack was in good spirits, though maybe a bit ornery. He doesn't like to share things...

He has some bruising around his central line, possibly because his platelet counts are low, and he bruises easily, so for now we are watching that. But otherwise no fevers and no vomiting. 

Chase and I are at home, going to school and work tomorrow, with Sarah sending us updates on the little guy. 

I'm grateful for:

- our friends, family and coworkers, without whom this would be a very lonely ordeal,

- no fevers or infection, (I think I'm becoming paranoid)

- Jack getting a nap this morning, and no vomiting. 

Chemo, 3rd Cycle

It was a long day yesterday, but we did start chemo around 8:30PM. So we should be on a similar schedule for tonight. 

We fell asleep watching The Empire Strikes Back. (I don't mean to brag, but I have laserdisc rips of the original trilogy, which is the only digital version where Han shoots first.)

Jack handled it good today, his stomach was upset but he held it all in. 

He even ate surprisingly well and had a couple of bowel movements. 

We went for a nice little walk around the hospital, and tomorrow we'll probably venture to an outdoor area if he still feels good. He doesn't lay in bed anyway, he's usually on the couch playing with toys and activity books. 

So, all things considered, we're doing well.

I'll have some pics tomorrow. His pole is decorated in quite a spooktacular fashion. (Eh-eh-eh-eh!)

Blood Stem Cells Collected, Chemo Confirmed For Tomorrow

Jack is smack dab in the middle of a demanding treatment week. 

Yesterday he had a surgery, today stem cell collection, and they confirmed that they want him to come in for the third round of chemo tomorrow. 

Stem cell collection went well. He responded excellent to the procedure and was able to go home on schedule. 

Harvesting typically causes calcium levels to go down, which causes tingling in the lips, or if it goes lower yet, seizures, and so on. Fortunately he only got tingly, was able to take some liquid Tums, and proceed as planned. 

Doctors confirmed that they got plenty of cells and they look good. (Otherwise he'd have to go in again, for another collection.)

The whole thing takes 4 to 8 hours, he got it done in 5.5. 

Here he is playing some Minecraft while the machine was doing its thing. 

So... Chemo tomorrow. This cycle will use different chemicals from the past two treatments, so we'll see how he'll tolerate them. 

Also, this cycle is shorter, consisting of only three days. 

He is doing really really well. He is not whiny or lazy, and everyone praises him for how easy he is to work with. Sure, he gets crabby sometimes, especially at Chase, but overall he's pretty level headed. 

Today I'm grateful for:

- his little body handling the collection like a champ,

- a successful and uneventful collection,

- Sarah being able to take him. (There's no way I could be (conscious) in the same room with a blood centrifuge. I have what some would call "weak constitution"...)

- chemo moving along,

- his good attitude. 

Central Line Installed

OK, he got the central line installed. (It's a catheter accessing his jugular vein.)

So, they will use that tomorrow to collect his stem cells, and a few months down the road to give him his stem cells back. (Autologous bone marrow transplant.)

A little interesting factoid... For the collection, they want his white blood counts to be "super high". So for the last two nights they had us double up on his Neupogen shot. A normal count is 4 to 10 thousand... His count is 105 thousand! So wow, I guess his little bones are just crazy blood making factories. Hopefully they stay that way for the transplant. 

We were goofing around last night and got a pretty funny pic:

Weekend Update And Harvest Is On

A quick weekend update...
On Saturday evening, we met with Jack's cousins at the Omaha zoo, for their spooktacular event. Jack had a lot of fun walking around dressed in his "morph" costume.

On Sunday, we took a nice motorcycle ride around the neighborhood. Then he mostly played Minecraft with Chase, but in the evening we had a pretty epic Nerf gun fight in the middle of the living room, complete with pillow and cushion barricades.

Today, he slept in until 10:40 AM and proclaimed that it's nice to sleep in like that. Then him and Mom made a surprise visit at my work, and had lunch at Raising Canes. (Two and a half chicken strips were consumed, along with garlic bread, fries and a lemonade.)

Not a bad way to spend a day. 

OK, the surgery to put in his central line has been scheduled for Wednesday, and then they'll do the stem cell collection (or harvesting) on Thursday. Both of those will be happening at UNMC.
Harvesting apparently is not painful, the worst thing is waiting 6-8 hours for it to be done. To me, the procedure is similar to dialysis, but I'm not really too sure what dialysis is.

And... if his blood counts are good enough, they may even start another round of chemo on Friday or Saturday. If that happens, this chemo cycle will be 3 days long.

So, it may be a busy few days around here, but I'll keep everyone in the loop of what's going on.

Today I'm grateful for:
- Having a great weekend with the boys, and seeing Luka, Maria, Colin and Henry
- Harvesting being scheduled this week, rather than waiting till next week,
- Chase making Jack laugh and giggle with his funny antics.

Counts Are Up, Maybe Harvesting On Wednesday

Ok, Jack's white counts have recovered nicely, from 200 up to 13000, which is quite a bit. (4500 to 10500 is about the normal.) 

Dr.'s office called, and they'll try to schedule a surgery to install a central line on Tuesday, and do a stem cell harvest on Wednesday. (Central line is a "pipe" into his circulatory system, a little bit wider diameter than his existing "port" line.)

That will be happening at UNMC, and I'm not sure at this point if he will be out on Wednesday after the harvest, or if they'll keep him in the hospital. 

He's doing good, we just went out for a walk, and then kicked a soccer ball for a while. 

Today I'm grateful for:

- things moving in the right direction with respect to his counts and harvest,

- Jack still having no pain, I think the chemo is really doing a number on his tumors,

- Jack eating like a champion for the past couple of days. 

Temp Is Holding Steady, And Next Step

All is good on the temperature front. He's holding steady at 99-98.

He looks good otherwise, and ate like a champ today: Frosted Flakes, half a ham & cheese sandwich for lunch, nutella for afternoon snack, chicken nuggets for dinner, then yogurt and granola for another snack, and finally some crackers. 

It's not the healthiest of diets, but for now it's all about quantity. 

His blood levels are so-so. Red and hemoglobin counts have improved since Friday, but platelets and white counts have decreased. We'll get them tested again on Friday. (It's all pretty normal. Chemo does a number on blood cells.)

I am hopeful they'll start recovering by then, between food, sleeping, and Neupogen shots. 

So, what's the next step?  It will be a stem cell harvest at UNMC. 

They'll hook him up to a machine that will filter his blood to harvest stem cells out of it. It's a six (or so) hour procedure, and should be out patient. (That is my understanding at the moment.) That should be happening a week from coming Monday. 

Stem cells will be cryo-frozen, and given back to him in a few months, after one specific chemo treatment. 

I don't think too far in advance, as it can be overwhelming, so for now we're just focusing on keeping him fed, rested, clean, and engaged with schoolwork. 

Speaking of schoolwork, he got a huge monkey doll that will take his place in the classroom, so his little friends will have "someone" in his chair while he's away. 

It's a pretty cute concept, and maybe I'll write more about it in the next few days. 

Maybe his teacher will send us some pics of Sam, the monkey ;)

I'm grateful for:

- he's eating well, (I know it's repetitive, but we're going day to day...)

- no fever! (we check him 3-4 times per night when it's hovering around 99, so not having to go to a hospital at 2 am is a huge relief.)

- his red and hemoglobin counts climbing up.

Weekend Update

We had a nice three day weekend. 

We went to the zoo on Saturday, worked around the house on Sunday, and cleaned house some more today. We also went shopping, and got Jack some new shoes. 

He's been hovering around 99-100 Fahrenheit last two days, so we've been monitoring that closely, but tonight his temp came back down around 98, so hopefully that holds steady. 

He does go to Omaha tomorrow morning for another lab test. I'm curious to see what his counts are. 

Last time he was tested (Friday), his white count was 300. Normal range is above 4000, so we'll see if the Neupogen shots and transfusion are helping. 

Speaking of Neupogen shots... For the last two days he does them with Sarah, without me, and it takes them about 4 seconds, and no drama. 

So that's something to be grateful for. 

Other things I'm grateful for today:

- still no trips to the hospital due to fevers,

- great new books he received from everyone, we've reading them to each other. 

A Day At The Zoo

We took advantage of the beautiful fall weather to visit the Omaha Zoo today. 

Jack was impressed by the train ride and the dinosaur exhibit, which was very cool. 

We stayed out of the enclosed areas and stuck to the open exhibits. We took it pretty easy, with lots of breaks to rest. Due to his low blood counts he tires easier, but he did score a piggyback ride on the way out of the Zoo. 

I think he was very happy to be out and around other people and kids. He did draw a lot of stares because of his new hair style, but it didn't bother him. 

Here are our two good boys:

Today I'm grateful for:

- no fevers! I told him it's my Transylvanian werewolf blood, but he gave me a pretty goofy look of disbelief,

- a great, great day at the zoo,

- Chase doing a goofy dance to make Jack laugh before the Neupogen shot. 

Transfusion Time

Jack is doing good after his second round of chemo. We can read his mood better, and know what to expect from immediate side effects. For example not being hungry for the first couple of days.
But his appetite is coming back, he had half of a cheeseburger last night, in addition to snacking all day, and he had 4 chicken nuggets for lunch today.

A few things have been a bit topsy turvy however. On Wednesday night he took his Neupogen shot like a champ. He reminded us it was time to do it, he iced his leg, nodded to Sarah he was ready, and we were done in 5 seconds.
Last night, however.... It took us an hour to get through it, we had to use two shots, and multiple icings and cleanings of the shot area. He wasn't in a mood for it I guess.
We thought on Wednesday that maybe we had it conquered, but maybe we don't.

Today he's in Omaha, getting a blood transfusion to boost his counts. (which takes about two hours, but of course, it's one of those deals where he's in Omaha at 9:30 AM, and transfusion doesn't start until 2 PM.)
If he gets a fever from the transfusion, it's a 2 day hospital stay.

Here he is playing a game with some of the volunteer staff there:

So, things are going as expected. He is eating and sleeping well, and he's in good spirits. (Especially around friends and cousins.) Still fever free, which is awesome. Hopefully that trend continues, but we'll see what the transfusion will do.

I'll try to have another post tonight when things sort out.

Update:
Transfusion went well, they're on their way home!

Coming Home Today!

Not that Children's isn't a very nice hospital, but we're always glad to be released, rather than waiting another day. 

They've moved today's chemo down to 3:30, and that usually lasts an hour or so, and said we should be released right afterwards.  (The past week's chemo would start at 5:30.)

We did homeworks, activity booklets, took a little walk to an outside area, and briefly discussed Milky Way and Andromeda's eventual collision. (He brought it up, he saw it in TV apparently.) It was beautiful outside, so we snapped a few pics. Here is one:

He'll be back in Omaha on Friday for a blood infusion. They'll give him donated blood to boost his red blood counts. That should be an easy in and out procedure. 

And of course, tonight (or maybe tomorrow) we resume the Neupogen shots at home to boost the white counts. 

I'm grateful for:

- spending time outside with him and talking about galaxies,

- he's drinking really well,

- getting released today,

- blood donors, but that goes without saying.

Benadryl, The Magical Elixir

Do thorns prescribed Jack some Benadryl in addition to the regular nausea drugs, and so far Benadryl is two for two in keeping him from vomiting. 

Jack ate like a rockstar today, and weighed in at 47lbs. I'm sure a lot of it is IV, but he's been eating well so we're happy. 

Here he is doing some homework. We'll set up Skype tomorrow, so he can be with his class. 

(Note the money next to homework... No doubt he negotiated a sweet payoff in exchange to do homework.)

He still has a bit of a stuffy nose, and a dry cough, but it's of no concern apparently as long as there is no fever. 

Tomorrow should be his last day of this chemo cycle, so we're excited to plan on getting back home. They should release us either late tomorrow night, or Wednesday morning. 

Today I'm grateful for:

- no casualties in Wayne from the weekend tornado,

- Chase visiting Jack and playing minecraft with him. (boy there are a lot of minecraft mentions on this blog...)

- 3 lanes on I80, which make driving back and forth much easier than it used to be. 

Kind Of A Brutal Nightly Schedule

Chemo is going well. He gets sick right about 4 hours and 15 mins after he starts receiving it, vomits once, and then is good to go. It's like a clockwork. 

The worst part right now is getting through the night. He's getting a lot of IV pumped through him, so he needs to be woken up to pee every 90 minutes. Otherwise the sheets and blankets can get soaked and need to be washed right away. (Twice, because of the chemicals involved.)

Fortunately he falls right asleep, so he's getting decent rest. 

He got some new toys today, and he's been playing with them the whole day. We've also been doing mazes and other activities from his care packages. 

Yeah, his teeth are coming out like it's going out of style, so he's looking like a brawler, albeit a cute one. (Again, teeth are coming out on their own, it's not related to chemo.)

Here he is, showing off his new toys:

Today I'm grateful for:

- his good response to chemo,

- awesome nurses at Children's, and nurses and healthcare staff in general,

- Huskers winning, GBR!

Second Chemo Cycle Started

Just a quick update, we vere able to start the second cycle of chemo. 

This cycle is the same as first, same drugs, same doses. So he'll be here until at least Tuesday. 

Sarah and I will be taking turns being at the hospital with him. 

There was a nice delicious surprise waiting for him at the hospital, courtesy of coworkers, which made Jack very happy. (It made me pretty happy. My middle name is Donut Holes.)

The next step, after this cycle, and once his blood count levels return to normal, will be to harvest his blood for a later procedure. (The marrow transplant.) I think that will be in at least a couple of weeks, and I'll post more details on that as I learn more about it. 

Today I'm grateful for:

- the goodies welcome packet,

- that tornadoes have, so far, stayed away 

- continuing care from our coworkers, friends, and family

Of Minecraft And Plutonium

I'll get to plutonium in a bit, but first an update on the little guy. 

Two hours of schoolwork with his friends over Skype in the morning, some Minecraft and soccer in the afternoon, followed by homework and chips and salsa in the evening. 

We even toyed with the idea of going by his school when his friends were coming out, but decided against it, in case anyone was sick or carrying any little germies. 

When we played soccer after the school was out we ran into his principal, and it was really nice for them to see each other. 

His high calorie diet (or "full feed", as I was informed), continues to go well. He's even trying new stuff... Tonight he had salsa and loved it!

OK, on to Minecraft and plutonium... 

He and I have been playing Minecraft together, mining, collecting ore and building things. It's actually a very nice and creative game. Even Chase joins us from time to time and points out some of the cooler things we can do. 

Here is a little picture of the world we're building:

(That's him down below.)

I like our Olmec heads, looking over the ocean, giving us spiritual protection when zombies and creepers visit.  (Although, we have diamond swords now, so we're not too frightened any more.)

Anyway, back to plutonium, ever since he started playing the game, mining iron, gold, coal and diamonds and smelting them, he's been asking about different ores. So, I downloaded a very nice app on his iPad that shows him all the elements in the periodic table. We've been looking at them at night, reading about iron, copper, gold, carbon and of course the more kaboomy ones like plutonium and uranium. He's also expressed interest in radioactivity, so I try my best to explain it to him in simple terms. 

I bring this up for three reasons... 

Firstly, because his treatment will include radiation therapy later on, so I'm glad we have the chance to learn about it on his terms, rather than it being a boogeyman later on. 

Secondly, I was introduced to a periodic table of elements in seventh grade. It was a bunch of letters, numbers and ugly colors that didn't make any sense. I promptly failed that class and avoided chemistry like the plague in highschool and college. 

It amazes me that children can now approach the same subject through interactive apps in the palm of their hand, at a much younger age. I look forward to the future they will build. (Lest you think I'm bragging how smart my kid is, I assure you I'm not, we still write our 3s backwards...)

And lastly, looking at all these metals like calcium and sodium reminds me that we are all literally made of stars. (Yes calcium and sodium are metals. While they are *found* in earths crust, they were *formed* in stellar forges.)

OK'd For 2nd Round Of Chemo

Jack and I drove to Omaha today tor a lab (blood) test, which thankfully came back nominal and his doctor OK'd us for the second round of chemo. He and Sarah will check in on Friday morning and I'll stay at home with Chase.

OK, so his hair started falling out, which doesn't bother him at all. We had it cut as close as possible, but his scalp is extra sensitive, so the results are a bit patchy. But it will even out as more and more hair falls out. One of his loose teeth came out this weekend, and another one is about to come out. (Not related to chemo, they're just coming out on their schedule.) He's having a great time playing with it and making funny faces: 

Today I'm grateful for:

- spending a whole day with him, playing, doing homework and chatting

- treatment going according to the plan

- continued absence of pain and fevers. (He is probably in the clear of fevers until the chemo kicks in again and wears down his white blood count again.)
- oh yeah, he's gained 2 lbs since the last round of chemo!

Cousins Came A For A a Visit

Jack had a great day today, my sister came with two of her kids, and fantastic time was had by all. 

Jack's hair started to fall out this weekend, I'm hoping to have a pic for upload tomorrow. 

Tomorrow him and I are heading back to Omaha for a check up. 

I'm hoping we'll be ready for another round of chemo this weekend. 

Today I'm grateful for:

- my sister and her little ones,

- playing Nerf wars and Minecraft with the boys over the last few days,

- Jack not being bothered by losing his hair. He knows it's a good look. 

A Very Good Friday

Two good news today:

1. Jack's lab results came back very good. Good enough where he doesn't need to take his last two Neupogen shots! (These shots help boost his white blood count, which help fight diseases.)

2. Today, at a school assembly, he was awarded a Distinguished Coyote award. He wasn't there to receive it, but will be happy to wear it on Monday while Skyping. He also got a 100% on his spelling quiz. 

I'm hopeful his health will continue to keep up with the treatments, and that we'll be able to keep up with his academic needs. 

(This is his second Distinguished Coyote award, and I have to tell you he's pretty excited about receiving them.)

I may not have much to report over the weekend, he does have two wiggly teeth, but that may not be blog worthy. We plan on enjoying the weekend outside. 

Today, I'm very grateful for:

- good counts, and not needing the last two shots

- specialist's distinguished coyote award

- Jack's excitement over these two nice surprises