Thursday, December 26, 2013

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. 

Friday, December 20, 2013

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

Wednesday, December 18, 2013

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:

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.

Monday, December 16, 2013

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. 

Thursday, December 12, 2013

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. 

Wednesday, December 11, 2013

Out Of Surgery, Plus A Photo Of The Tumor

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.

Tuesday, December 10, 2013


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.) 

Sunday, December 8, 2013

"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.

Thursday, December 5, 2013

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. 

Tuesday, December 3, 2013

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…

Monday, December 2, 2013

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.
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.

Sunday, December 1, 2013

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: