Spring 2022

 Wow… 

Almost 4 years since the last update. 

Jack is a freshman in highschool, and is enjoying his time with classmates and (marching) band friends. 

He’s also picked up snowboarding, so that provides us with a nice outdoor activity during the winter months. 

This might be thelast post for a while, Jack is old enough now where he likes to keep his privacy, and I can’t say I blame him. But we’ll see. 

I’m still grateful, for a lot of things, but I’ll mention these in particular:

For his big brother, who gives us the best ideas (like to try snowboarding) and teaches Jack all sorts of brotherly things.

For good health and medical science during these past couple of years. 

For family and friends who help us get through tough times. Stay safe, see you around.

Spring 2018

Ok, 

Jack continues to do well, and is racking up karate belts. 

He is also playing drums at school band. Technically, percussion, which includes bells, triangle and anything else one can bang on. 

We love seeing him get excited for these things. 

Spring should be coming any day now, and he is getting ready to ride his electric motorcycle or bicycle to school. 

As far as the weight goes, it's moving up. He's around 55-56 lbs now. (I'm mostly putting this up for myself so I can keep track.) And he is eating good. No complaints there. 

Today I'm grateful for:

- Sharing a motorcycle ride (It was a bit cold outside today, and I had a beer in a mug already poured in (but not started!) but who am I to say no?)

- Playing ping-pong at the Y, after karate, and goofing around. (It gets late, but he always really wants to play, and who am I to say no?)

- Playing Mario Odyssey video game together. Reminds me of all of our Minecraft quality time. And he reads plenty, and stays up late reading, so who am I to say no?

Halloween/Fall 2017

It looks like the post from the beginning of 5th grade didn't get uploaded, so it's a 2 post kinda day today.

5th grade is continuing to treat Jack well. He does ocassionally call for some tylenol, and has had to come home early once or twice due to stomach cramping, but by and large, he's at school full time.

He started the school band, and does percussion. Playing on bells now and working his way up to drums. Once a week he also has karaoke club, and loves to sing with his friends.

Twice a week he has karate at the local YMCA and has earned his second belt there. His reward for that were real throwing ninja stars. (Shuriken.)

And hitting life full throttle, on most mornings he bundles up and rides his electric bike to school.

On Thursday, he did have a small procedure, a botox injection in one of the BM muscles, to calm it down and reduce the cramps. I think next time, in a few months we'll go with a permanent solution where they disconnect the muscle that is causing his cramps. But we'll see how long this injection lasts.
Oh, and he also got the G-button removed from his stomach. He says he feels much better without it.

For Halloween he rocked a spiked green hairstyle to school and wore his karate outfit for trick-or-treating.

In his free time he likes to disregard his homework, but does work with crafts, a 3D printing pen, and reads comic books or encyclopedias before bedtime.

He's also a movie connoisseur, we watched Dunkirk, Thor, and Murder on the Orient Express recently. He sure likes the new reclining chairs at the theatre. 

Still at 51lbs, I guess it's a small gain from the start of the year, but he is getting taller.

He's happy and active, and doing well, so we're all grateful for that :)

Rocket and Gonzo are still as close as ever, too :)

Fifth Grade Is Upon Us!

Ok, we are super excited for fifth grade, and 2nd week in, there have been no calls from nurse's office!

So that's a nice start. No tummy cramps or numerous trips to the bathroom.

Jack is riding his electric scooter to school and really likes that independence and a taste of freedom. 

We are also getting ready for a quick vacation to Quakecon, a videogaming convention in Texas. Yeah, we're still video games. 

Oh yeah, we also got a couple of kitties! Rocket and Gonzo are two brothers and they are inseparable. 

Jack adores them, and they love curling up next to him and napping. 

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.

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.

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!

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. 

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.

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. 

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. 

Spring Update

Hello, 

Long time, no see.

Huge apologies to all, we've been busy enjoying school and spring and no hospital visits, so didn't get to blog much lately. 

Currently, Jack is finishing up a bout with flu (influenza A), and as you may expect, hasn't eaten a proper meal in about a week. He gets his nightly feedings, but he's certainly not gaining any weight. 

He was 46.5 lbs a week ago, before the flu really hit. 

Three years ago, he was clocking in at 47lbs, so...

But, he's doing fine otherwise. He's in good spirits and has fun at school. 

Still has the illiostomy, hopefully only till the end of summer, but it's not a big deal, and doesn't keep him from doing anything. 

Here's a recent portrait he took at school, and I swear we'll buy the portrait package this time!

Merry Christmas!

A quick update on the little dude.

He's enjoying some time off from school. In the past couple of weeks, he went to school mostly half days, though he did power through a few full days. All of his little gadgets are working good. His urine is still pretty cloudy and full of mucas, so I'm guessing the fistula (hole) is still there. 

He goes in for a scope procedure on Monday to how things are looking. 

Other than that, it's pretty quiet around the house. Traveling this weekend to visit Tibor's family, and mine (Sarah's) next weekend. 

The whole family went and saw Star Wars last Thursday (premiere night). 

Awesome! We give it 9.5/10 stars! 

Home (again)

Yay, we're home and plan on staying!! 

We'll declare this week our holiday long weekend since Thanksgiving was a no go. Phew, been in the hospital a total of 9 out of the past 11 days. 

Not too much to report on the little dude.  Three contraptions in/on his little body so he has some maintenance going on. 

Follow up with surgery next Tuesday. 

Recording all his daily intake and output- goal is 60mls (2oz) an hour for input-- gotta keep him hydrated. Water has been replaced with Gatorade to make sure he gets extra sodium and electro lights. 

Looking forward to our own beds, no beeping machines or vitals taken all the time. We do have to watch for fevers similar to when we were going through treatment. Nothing over 101F. 

This is our third year getting a pic taken in front of the beautiful Christmas tree in the lobby and now we're up to 20 surgery bears. It's gonna be a little bit of a bumpy road the next few months, but we'll get through it. Jack has such a positive attitude, he's quite amazing.  

Getting closer to going home

Still in the hospital. Little dude has a bladder rectal fistula about 1cm around. The tissue in the lower pelvic area is damaged from all the radiation and after surgery, the tissue broke apart and created a hole inbetween the bladder and rectum. Poo and urine starting mixing and coming out of the wrong ends and hello infection. They placed a folley cathadar on Friday and then he has the ileostomy to keep things somewhat clean down there. He's on an antibiotic and a medicine that reduces bladder spasms. Yesterday the doctor went in with a scope to get a better look and do some light housecleaning in the rectum. 

Surgery isn't an option now because the tissue isn't healthy enough to hold any sort of stitches or repair work. 

This sort of fistula isn't that common in kids, so Urology has consulted the UN Med Center for some input. The plan for now is to keep the folley in and scope again forwards the end of December to see how/if things are healing on their own. 

Taking this month by month and making decisions based on what they see. 

So today, off IV fluid and switching over to oral antibiotics. 

If Jack doesn't get a fever today, we get to leave Wednesday. 

Fingers crossed. 

Back again hanging out in the hospital.

Jack has had some minor pain urinating the last 24hrs. This morning the pain was getting worse, accompanied with some lower back pain, poop coming out with the urine and a temperature of 102.6. 

Called the doctor and he told us to come on up to the hospital for a CT scan. Wants a better look at what's going on in the lower abdomen area.

So, long story short, little dude has a small leak in the bladder. Not sure how or the details on all the plumbing down there, but it's related to the surgery. (And then the mess caused by removing the tumor and radiation.) 

So the plan for now is a folley cathadar for two weeks, letting the bladder heal on its own. Then another CT scan to see if the bladder is all healed up. 

I think just inpatient for 24hrs to keep an eye on him. Fluids running to get all that gunk out of the bladder, he's on an antibiotic, folley in place and ostomy still working good. 

Fingers crossed for a quiet night and no fever! 

Jacks quite the trooper with all this!! Sometimes light humor is needed to make us laugh. (Pic above)

 

And we're ...

Home

Tired

Cozy

Comfy

Stocked up on some good pain meds. 

And looking forward to a quiet long holiday weekend at home. 

Happy Thanksgiving! 

This just might be the shortest blog post ever. :) 

Quick update

Jack got his epidural and cathadar removed this morning. He was pretty freaked out, but toughed it out like a rock star. His nightly supplemental feeds went well last night at a slower rate, so all good there. Spiked a fever during the evening, but it stayed under control.

Still on morphine and Ibuprofen for pain, which seems to take care of it nicely.

Little dude got out of bed, dressed and sat in the recliner for most of the day.  

He said it felt good to wear clothes again. 

His 'plumbing' is all working good, so I'm learning the ins and outs of his new contraption.

He's eating some snack foods here and there, nothing too fancy. 

That's about all to report. He hasn't walked yet, I'm guessing that will be tomorrow. Not looking forward to that as he just might be a little owly. :) 

He's done awesome so far, very proud of him!

Surgery Update

Little dude had his surgery today and all went well. A planned three hour surgery turned into five hours, it's been quite the day! We're getting all settled this evening, need to unwind a bit. 

Jack has a pretty big incision, about six inches or so across his lower abdomen. The surgeon also placed a temporary ileostomy that will help healing where the colon and small intestine were reconnected. (About 6 weeks and then another surgery to reverse it.) We don't want leaking or anymore scar tissue down there! They also placed a epidural in his spine that's delivering some wonderful pain meds. A pretty cool IV also delivering some different pain meds and fluid. A catheter, so no need to hop out of bed to go to the bathroom. He's all sort of hooked up and sewn up this evening.  

Reassess pain on Monday when they take out the epidural and talk about plans to go home. 

Today we're thankful for:

- an awesome surgeon! Lots of risks came with this surgery and no organs were damaged.

- being up on the 6th floor and having our old oncology nurses. They were sure happy to see him again.

- I say Tibor, he'd say me. Sitting for five hours was tough today. We've made quite the team supporting each other through everything. 

Update and a surgery coming up.

It's been a bit since we gave an update on the little guy, so here it is.

Earlier this month, Jack had his sixth surgery/procedure to dilate his colon, hopping it would stay open. This was done every month, an in-patient procedure. Not too invasive, but nevertheless, he's put under, it's in an operating room and there is little bit of recovery, usually two days. A month or two ago, during the fifth surgery, the doctor placed a stent hopping this would help. Unsure if Jack would be able to tolerate it, it was worth a try. This was placed on Monday. By Friday, we were back in the OR having it removed.  That week was terrible! It took us two weeks to recover from that one week of pain, vomiting, and no sleep.

His last dilation was done a few weeks ago and after the surgery, the surgeon feels the next step is to preform a bowel resection. It's a pretty major procedure, snipping out the scarred part of his colon/tract, then reattaching the ends. Of course without damaging all the other organs around it. Jack has a lot of scar tissue around that area from both removing one the tumors and radiation treatment.

Surgery is this Friday at Children's in Omaha. This will be his eighteenth surgery! We're gonna be camped out in the hospital for a minimum of 4-5 days and then some home recovery time. Fingers crossed we'll be home for a quiet Thanksgiving.

Other than that, Jack is doing good. He's up to 48 pounds!! He's still thin, but is looking so much better. He's also grown two inches, in the last 4 months, 50 inches now.

Third grade is going good. I usually get a call from the nurse once or twice a week, Jack either needs some medicine or needs to come home because he's not feeling good. Some weeks are better than others. We just roll with it.
He had his nine month post treatment scans and labs at the end of September, everything came back clean. Next set are right before Christmas.

Pic - Jack and I having lunch together.  (They have tables set up in the preschool room, this isn't what his classroom looks like. <--- Jack said to put this blurb in. :) )