Wednesday, October 30, 2013

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?)

Tuesday, October 29, 2013

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. 

Monday, October 28, 2013

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 :(

Sunday, October 27, 2013

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. 

Saturday, October 26, 2013

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!)

Thursday, October 24, 2013

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. 

Wednesday, October 23, 2013

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:

Monday, October 21, 2013

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.

Friday, October 18, 2013

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. 

Tuesday, October 15, 2013

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.

Monday, October 14, 2013

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. 

Saturday, October 12, 2013

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. 

Friday, October 11, 2013

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.

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

Tuesday, October 8, 2013

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.

Monday, October 7, 2013

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. 

Saturday, October 5, 2013

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!

Friday, October 4, 2013

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

Wednesday, October 2, 2013

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.)

Tuesday, October 1, 2013

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!