Sunday, June 4, 2017

Summer Break!

Allright, grade 4 is in the books!
Jack is in full summer mode, riding his scooter up and down the block and taking karate and swimming lessons at the YMCA. 
He is slowly gaining weight, he's finally over 50lbs. 
He's still a movie buff, we caught Alien Covenant recently and compared it to all of the other Alien (and Predator) movies. 
Summer should be fun, we have a cabin camping vacation planned, camp COHOLO (ran by Children's hospital) and a trip to Dallas for a videogame convention. 
We hope everyone has a fun and safe summer!
Today I'm grateful for:
- all of Jack's friends and cousins. They all have a blast playing together. 
- playing at the pool with him. We spent 3 hours together one night this week. 
- watching movies at the theatre with him. 
- his electric scooter, which he was too weak and affraid to ride for a couple of years. 
- awesome staff at Campbell Elementary that support him and look out for him at school.

Tuesday, February 21, 2017

We Come From A Land Down Under

Well, we're back from Australia!
Yep, Make-A-Wish flew all four of us to Australia, as that was Jack's wish. 
It was a week full of adventure, surfing, airplane flights, limo rides, meeting cool Make-A-Wish people on two continents, penguins, kangaroos, Dory fish, and even koalas!
Needless to say, we had a magical time exploring Sydney and nearby attractions. 

Back home, Jack is still loving karate at the Y, and is starting to swim again, and has learned to ride the bicycle. 

Here are a few pictures from our incredible Aussie adventure:


Incredibly grateful to Make-A-Wish for giving us this gift of worry free family time.





Tuesday, January 24, 2017

A bit over a year post treatment

This December was one year since Jack's treatment was finished. So far, so good!
He did end up with a bacterial overgrowth in his colon, probably a result of the illiostomy, but that is now being treated with antibiotics. 
Little dude is enjoying school and friends, and finding excuses for not doing homework :)

He is slowly gaining weight, so it's good to see that. And when I say slowly, I mean slowly... he's still pretty twiggy. 
But, he is taking karate lessons at the Y, and LOVES it. 

So... going good and wishing everyone a happy and healthy new year!


Saturday, June 4, 2016

Resting after Surgery

^^^ Mr. Froggy has been with Jack through every surgery, procedure and hospital stay. He and Jack are best buddies. 

Sorry for a little delay in the updates. Been a rough few days for the little dude. X-ray found a kink/blockage in the intestines. (Which explains the nausea and vomiting.) 
The blockage must of happened during the last surgery when a piece of omentum was pulled down and used as a cushion between the colon and bladder. 
Our doctor wanted to try draining the stomach in hopes of the bowel reversing itself, tricking it in a way. In order to do this, Jack has been getting all his nutrition through TPN. (IV Food) 
Doctor gave this three days, taking X-rays daily checking to see if there were any changes.
Negatives on fixing itself. :( 

Jack went in for another surgery this morning (laparoscopic- four little incisions) fixing the kinked intestine. Only a minimal amount of damage was done to the intestine wall and the surgeon feels it should repair itself.
Jack will continue the TPN for a day or two, allowing the intestine to heal. Then switching him over to real food, making sure he's able to eat, digest and poop everything without nausea or vomiting. 
I'm guessing we'll being staying in our Children's hotel suite until Tuesday or Wednesday. 

Tuesday, May 31, 2016

Quick Update


Discharged on Sunday afternoon and back Tuesday morning. Little dude super nauseous, dehydrated and not tolerating/keeping down anything. Took an X-Ray of his stomach and labs earlier today, will do another set of X-rays tomorrow morning. Draining out all nasty bile out of his stomach through his G-button and diet for today as been ice chips. Really don't know exactly what is going on, hopefully more answers tomorrow.

Wednesday, May 25, 2016

Surgery Bear #25

(Jack studying the drawing Dr. A drew on his bed sheet detailing the surgery plan.)

A seven hour surgery down in the books today. All smooth sailing - bladder fistula repaired, colon reconstructed again and some omentum pulled down from around the stomach area and placed as a cushion between the bladder and colon. (The original plan was to take a muscle from the inside of the thigh and use that as the cushion. Surgeon was very happy omentum membrane was healthy. One less incision. Faster recovery.) 
They reopened scar from last surgery (8in across the lower stomach) and did all the repair work. Jack is hooked up to some good pain meds tonight. A folley still in place to give the bladder some resting time. All in all, he looks pretty good for quite the exciting day. Hanging out on the sixth floor with all our favorite nurses probably until Saturday. 

An oncology update -- we still go in every three months for CT scans, lab work and urine marker tests keeping a close eye on the Neuroblastoma staying away. Jacks appointment at the end of April was clear and clean. Hooray! Yahoo! Always a relief. 

Tonight I'm thankful for:
- successful surgery. 
- Jack being in such good spirits through all this.
- Tibor and I passing the long day together laughing. It's not easy sitting and waiting and waiting. 
- All our family and friends thinking out the little dude and sending positive thoughts his way. 

Monday, May 23, 2016

Third grade walking field trip

Ok, 3rd grade is in the books!
To finish of the year, Jack's grade had a walking field trip around downtown Lincoln. 
It was awesome, and he managed to walk the whole time. (Honestly, it was a lot of walking...)
Here are some pics. 


While we were visiting Governor's mansion, he asked the staff if they ever greet the Governor with 'Ello Gov'na (Hello Governer, in a British accent). That created a good round of laughter. 

We have a surgery coming up on Wednesday. They will go in to repair his bladder, and clean up scar tissue around colon. It will be a 3-5 day stay, so hoping to be out by Sunday. 

We're still grateful for good things:)
Let's see,
- Holiday on Monday,
- Awesome memory creating field trip,
- Jack's friends, and cousins who keep him active
- He's finally starting to eat a bit better.  He has new food for his nightly feeds, and it seems to be working better.