Wednesday, April 30, 2014

Done with Radiation Therapy

Jack had his last radiation treatment today. Horray!!
We have a follow up with the doctor in four weeks where they'll take more CT scans and make sure abdomen area looks good. Jack handled the treatment like a trooper. He has quite the radiation "sun burn" on his lower back and butt, but we have some cream to put on the area. It doesn't seem to bother him, maybe a bit itchy. 

We're are 55 days post bone marrow transplant and the next phase of treatment starts around day 100. We have some downtime before we're back at Children's Hospital for Immunotherapy and plan to enjoy every day of it! 

Jack ringing the "I'm done with treatment" bell. 

Tuesday, April 29, 2014

Home, building Legos.

Jack was released from the hospital nice and early today, and had his second to last radiation treatment. 
Then he and Sarah stopped by to see me in Omaha and meet some of my coworkers, where he scored some very nice caramel popcorn rolled in white chocolate and Oreos. 

On the way home he are a whole kids meal Subway sandwich. 
Currently he is building a new lego set. 

It's great to have him back home :)

Monday, April 28, 2014

At UNMC with a fever

Jack and I are hanging out at UNMC for couple days. Yesterday his temp was creeping up slowly all afternoon, so we were thinking a trip up to Omaha might be in the works. Darn-nabbit fever!

Fever broke last night, his temp got up to 101 when he received his first dose of antibiotics.
He's on Celephine (antibiotic) every 6 hours and a little maintenance fluid. Jack received blood and platelets this morning - counts were pretty low. (Hemoglobin was at 6K, should be around 10K and platelets were 32K, should be around 150K. ) His blood pressure was pretty low too, so they were keeping a close eye on his last night and into the morning. I was reminded of the sleepless nights in the hospital rather fast.
No radiation today, they'll squeeze him in here tomorrow and we'll finish last round back at Village Point on Wednesday. 

If all goes well, and by that I mean, no temp and blood cultures come back negative (which means no bacteria or fungal infection in blood stream, which shows up in the first 48hrs.) we should be discharged tomorrow. If cultures come back positive.... we'll I didn't ask, but I'm think we'll be hanging out here a little longer. 

Child Life came in around noon to hang out with Jack, they made some rockets and a cloud in a bottle. There were launching rockets across the room, it was pretty cool. Anything to pass along the time. 

All in all, Jack feels fine, he's a bit tired, but with getting some blood today, he'll be like a super star tomorrow. 

Today I'm grateful:
- Jack's fever starting in the early afternoon and not at 10pm. I'd rather no fever, but a 3am drive to Omaha is not my cup of tea. 
- all the nurses were happy to see Jack. The doctor this morning said how good he looked being 54 days out from transplant.
- Tibor and Chase - here's to you and the house to yourself for a day or so. I've given up on your cooking ability, so just eat cereal for dinner. Lots of choices and virtually no mess to clean up. :)

Sunday, April 27, 2014

Had To Make A Pit Stop In Omaha

Well, week two of radiation is done, Jack is tolerating it well. He did get a bit of a temperature this evening, 100.9, so as per protocol, needed to go to UNMC for the next two days to make sure he gets over whatever it is that's giving him the temp. He's been playing pretty hard with some new friends, so maybe he caught something there. 

Not sure if they'll delay his last two radiation sessions, but I'm sure they'll let us know tomorrow. 

So, that's it for now, we'll post updates as we get them. 

Tuesday, April 22, 2014

Day 7 of Radiation Therapy

Jack is rocking through radiation, already at Day 7. Treatment has been changed up a bit, and Jack will only be getting 12 treatments versus the 20 they had initially thought. (See, they're always changing up treatment :)) Because he is on a study, there are certain protocols that all the doctors follow. The doctor and other radiologists reviewed his CT scan last week and he doesn't need the additional boost of 8 treatments, which is great! (The additional boost is based on the current size of the lymph nodes around where the mass was growing. I think this is right, but don't quote me on this. This treatment, protocols and what is what is confusing. We ask question, which only gives us more questions. Sigh.... ) But anyways, Jack is doing super. We had labs today and his hemoglobin is a bit low, so not sure if some blood is in the plan later on this week. He has a bit of a "sunburn" on his back and stomach from the radiation, but it's very light and we have some creams for it. 

We had a nice Easter, stayed in town and did some grilling. (We're still told to avoid crowds until Day 100.) Easter bunny made a pit stop here too. I asked before Easter what the boys thought if I brought them a Steam Card (like an iTunes gift card, but for online games) and a chocolate rabbit. They were super stoked with that idea. The amount of candy given at holidays seems out of control at times. (Our opinion of course) We love candy (chocolate) just like everyone else, but the thought of buying three pounds of candy gives us the willies... and makes my teeth hurt as well. It's Tuesday and neither child has eaten their chocolate bunny, it's even the good chocolate, not the waxy chocolate flavored chocolate.
(Seriously, who invented that crap anyways?!) So, I'm guessing they're not candy deprived.

Jack is catching up with school work like a rock star. Our tutor isn't coming right now while he is getting radiation, so it's nurse, teacher, mom doing all it again... which is going a lot better than before. He sleeps a good 12+ hours everyday, still recovering from bone marrow transplant and fatigue is starting to come from radiation. Sleep is how the body recovers, and we just let him sleep. :)
Here's Jack today about to get radiation today, they had to move some stickers around.

Today I'm grateful for:
- neighbor boys playing outside and inviting Jack to play with him. 
- radiation being on west end of Omaha. It's a small thing, but once we leave Lincoln, we're there in 45 minutes. Doesn't make a huge dent in our day. 

Saturday, April 19, 2014

Tolerating Radiation Well

Ok, week one of radiation is under our belt. 

So far, so good. No major skin irritation, and no fatigue yet. 

His energy levels are really excellent. For example, today we went to Air and Space Museum, which was excellent as always, and we walked for a few hours and looked at everything. Then we went to a nearby park and climbed the observation tower. When we got home, he played with neighbor kids for an hour, then went for a walk around the block. (I did have to carry him on the home stretch though:)

Another week and a half of radiation left. Hoping he tolerates it well. Fatigue and bowel irregularities are what to watch out for, so no hospital visits in that respect. 

The recovery from the stem cell transplant is going well too. His blood counts are climbing up, and they only need to see him every two weeks, as opposed to every week. 

We had a really great day today, and I was thinking of those weeks before he was diagnosed, the mystery pains in his belly, the sleepless nights, constipation, etc. so I'm really grateful that the treatment has given him (and us) relief from all that. 

I'm also grateful for:
- fantastic spring weather. It is so nice to be able to go around the house and run around. And all the doctors agree on one thing... Play and activity is the best thing for him. 
- a fun-filled family day at the awesome SAC museum!

Monday, April 14, 2014

First Day of Radiation Therapy

Jack had his first radiation appointment today, which was pretty quick - lasted about 10 minutes. They took a few X-Rays and gave him some new stickers on his tummy. (They use X marks to line him up with the lasers.) Jack had some nausea on the way home and was quick grabbing a plastic bag. He got sick again when we got home. Poor little dude. His stomach is getting a bit of radiation just because of its position. We have a prescription for Zofran to take an hour before his treatment, hopefully that will help any nausea in the future. 

While Jack is getting his treatment, no one can be in the room with him. The door that closes is about 12 inches thick, it's like a fortress. They have cameras all over and an intercom system so they can talk back and forth. (They play music for him while getting treatment, song of choice - Happy by Pharrell Williams. It was also in Despicable Me 2)  The arm (top part of the machine) does a 360 around him, total time is about three minutes. He hopped down, gave the techs a high five, and said see you tomorrow! That's it. 100 miles, 2 hours of driving for 10 minutes of treatment. 
Lots of driving. I need a Nissan Leaf. :)

Tomorrow, (Tuesday) is our long day. Jack has his weekly lab/doctor appointment downtown, then the radiation appointment across town and then we meet with the radiologist afterwards. Jack suggested since Tuesday is our long day, that we take a different way home, making a pit stop in Greenwood at Baker's Chocolates. Hummm.. great idea! Chocolate after a long day will make anyone's day better!  

Sunday, April 13, 2014

Weekend Update

On Saturday we went to Monster Jam down at Pinnacle Area. It was awesome! This is our second time at Monster Jam, first time was three years ago at the Mid-American Center. One of Jack's favorite truck was there - El Toro Loco, along with Monster Mutt, Grave Digger and a few others.
Grave Digger and Monster Mutt biffed it during a race. No one was hurt, but it was kinda cool to see them tip over. (Is that bad to say?!) At the end during Free Style, Grave Digger's tire popped. So between crashing earlier and his flat back tire, his truck was looking a bit sad at the end of the night.

Not much else to report. Tibor and I did some more yard work Saturday morning. Our back yard's retaining wall is looking a bit sad, so we're trying to fix that up. Boys played Nerf guns for a while and then retreated to the house to play some "shoot 'em up" video games. Glad they have some variety in their schedule.
It was nice to have some rain on Sunday.. good excuse to lay low, relax and watch a Rocky marathon on Encore this afternoon.

We start radiation therapy tomorrow. Jack is requesting that Tibor set the van up with an internet connection since we will be spending so much time on the road. This going without internet is a bit of a inconvenience to him and his Minecrafting. :)

Today we're thankful for:
- boy's Papa and Grammy coming to Lincoln to hang out with us today. Had some great Chinese from the Great Wall for lunch.
- Jack eating like a rock star this weekend.

Thursday, April 10, 2014

Enjoying the weather

We're all loving the weather the last few days. Tibor and the boys went and played soccer again. Not sure how many goals were scored, but the came home tired and hungry. 
Wednesday was the first day the Lincoln Zoo opened, so Jack and I were eager to check out the new animals and love watching the penguins waddle around. Jack had so much fun yesterday, he and Tibor went again today. 
It's great seeing him run around, being active and then eating like a mad man. 
Our last doctor visit, little dude was up half a pound. Slowly and surely he'll put his weight back on. 

Tuesday, April 8, 2014

Radiology Consultation

Jack is doing super! It's great seeing his energy levels picking up, appetite increasing and all around starting to feel better. The chemo really does a number on tastebuds and how food tastes and its texture. 

On Sunday, Jack and Chase walked up to Campbell school to play some soccer. The school is about 12 blocks away and Tibor and I were both a little leery letting him walk that far. After an offer to  drive them, Jack declared no way, he was walking and that was that. So with a phone in hand, snacks, and a water bottle, the boys walked to the school and played soccer for an hour. 
The boys played and Tibor and I did some yard work, it was a nice afternoon. Jack came home, ate four of his fish sticks, two of Chase's and asked for more. So yeah, we let him play outside as much as he wants to. 

Today we meet with the radiologist at the new Cancer Center out at Village Point Plaza in Omaha. (It's part of UNMC.) It was a long day of Q&A, CT scans, labs and a simulation of how radiation will go. I joke with Tibor that most times we leave a consultation more confused then before. 
Everything regarding a treatment plans end with an asterisk. So, here's what we think we know. (This info is based on the consultation today and before the doctor had a chance to read the CT scans.) 
Jack will have 20 rounds of radiation starting on the 14th, next Monday. We'll go to Omaha every day, Monday through Friday. The radiation therapy is pretty specific to the primary location of the first tumor (around the adrenal gland in abdomen, this is where neuroblastoma usually starts) and depending on how the CT scan reads, additional radiation treatment to the secondary location. (I'm not exactly sure where at in the abdomen area and how long that treatment lasts) 

The side effects of course range from short term to long term and are pages long. Treatment shouldn't hurt and takes about 15-20 minutes. Most of that time is getting him prepped and all lined up with the machine. They even made a mold for his body to lay in and he has stickers on is tummy that will help line up him with the machine.
I'll take pics of him on Monday before they start, the machine is gigantic! 
I'm sure by next Monday when the doctor has read the CT scan and has the treatment plan all ready, we'll have a more concrete plan for treatment. We're just going with the flow for now. 

Today we're grateful for:
- great Spring weather, and playing with boys outside. 
- Ben and Jerry's ice cream. OMG, I thought Eddie's ice cream was fantastic. We're an ice-cream family that goes nuts for great ice cream.
- moving forward in treatment and Jack being super brave for starting something new.
- Jack's blood labs being good. This not only reinforces his positive recovery from the transplant, but on the more visible side. He only needs to take three pill in the morning (it was 6, weekends was 8) and none at night! This makes a 25 minute night time routine into a five minute one. That is huge! (Yes, it would take him 25 minutes to take six pills.) (To that, add line flushes, going to bathroom, having a snack (of course), brushing teeth, reading books, watching a bit of iPad, feeding the fish, and you can understand how it takes us 2 hours to get him to bed.) (There was also neupogen shots for a ten days after each chemo treatment, which required icing the leg and mustering up courage, but thankfully we haven't had to do those for a while.)

Tuesday, April 1, 2014

Transplant - Day 27

Ahhh... the weekend came and went again so fast. We did some Spring cleaning around our house on Saturday. Clean and clutter free! The weather was gorgeous and the boys played some soccer and of course some console gaming was played between the three boys.

Make-A-Wish came on Sunday afternoon to meet our family. If you're not familiar with the organization, they grant a wish to a child that has/had a life threating illness. Jack's wish is to go to Lego Land in California. He wants to go paragliding, learn to surf and the list goes on. We would also love to visit Yosemite National Park and see the giant sequoia trees and visit Tibor's cousins in LA. We won't go on the trip until he has his central line removed (hopefully next summer) since he can't get the line wet and Jack wants to spend some serious time in the water. 

We are planning to sneak away for a few days after his radiation treatment and before imunetheropy. The plan is to spend a few days in Colorado after Chase is out of school for Spring break.  We all need a little break and a get away would do us all good. We need an okay from the doctors and we'll start to put together something once Jack is finished with radiation theropy. Hopefully the last week in May. 

Today we were in Omaha for labs and a doctor appointment. Jack's counts are on a roller coaster of ups and downs. Blood chemistry fell below the range a bit from last week, but his weight stayed the same. His eating is a bit out of wack too, just depends on the day. Tonight we had tacos and Jack usually loves them, today not so much.

Today we're grateful for:
-Spring weather!
- Seeing the boys run around outside and have fun.
- A clean house - we're on day three and it's still clean! That my friends, is unbelieiveable.