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. :) )

Happy Birthday Jack!

Well, tomorrow, the little guy turns 9, and he is very excited. 

He will open a few presents before school, and then we'll have cake and festivities after school. 

Otherwise, he's doing well, still not gaining much weight, but he doesn't seem to mind. 

His legs are getting stronger, and he can walk fair distance. 

My goal is to have him trick or treating this year. 

We had a great weekend, playing with cousins and even swimming a bit in a pool for his cousin's birthday party. 

No other news, he will have check up scans in the near future, but I don't think they're this week. 

Back to School!

Ok, Jack started the third grade, and had a stellar first week. 

He is able to stay the whole day, and loves it. (We know because he doesn't cry when we drop him off and is happy when we pick him up.)

Since the last blog update, Jack went to a camp put up by the Children's Hospital, and had an amazing time. I think the camp taught him that it's ok to be independent, and it's fine to be away from us. 

Then, we went on a camping vacation in Colorado's beautiful Rocky Mountain National Park. 

There, we let Jack help with firewood, he got some ninja throwing stars, and even drive/steer a boat. 

(Or skipper it, as it's sometimes called.)

He did need to sneak a couple of procedures in between (colon dilations), but those are outpatient procedures, and he handles them like a champ. 

Onwards and upwards for now, he still weighs about the same, but looks and moves good, his bowel movements are OK, and he eats OK. 

Here are some pics:

At Camp!

So, camp COHOLO, (COurage, HOpe, LOve) organized by Children's Hospital, is finally here!

https://www.facebook.com/CampCoHoLo

We've been waiting and talking about it for over a year now. Jack was supposed to go last year, but a treatment or something else got in the way. 

So, we dropped him off today, (the camp is midway between Lincoln and Omaha, 30 mins. away) without any tears. He'd been talking about it all week and was genuinely excited, but we weren't sure how the drop off would go. 

Luckily, with all the other boys in his cabin, and very friendly adult leaders, he was comfortable, and ready to do his own thing. He's been talking about pranking the staff and nurse Anissa, and eating s'mores, so hoping he'll get to do that. 

We will pick him back up on Wednesday, and I can't wait to hear all about it. 

There is a circus from New York there, and they will teach kids juggling and other circus things, and we will have a special surprise show when we pick him up, with kids performing their new skills. 

Otherwise, Jack is weighing in at 42lbs, so that's an improvement. I'm hoping the camp activities get him out and about, as we have been weathering the heat indoors.

Extremely grateful that Jack is spending time with his own peers and hopefully getting a bit out of his comfort zone in such a supported and loving environment. 

Clean scans and labs, and having a great summer break.

It's been a busy few days, busy with a hospital visit, and also with playing. 

Jack had CT scans on Monday, and they were clean:) His urine samples were also normal. Double :)

He'll have same set of scans in 3 months. 

And also, he is cleared to start getting his immunization shots, except for measles, for which he has to wait until Dec. 2016. So hopefully all other kids in his classes for the next year and a half have their measles shots. 

Not sure if he's gained any weight, but he looks, acts and feels stronger. He can jump and run much better and has longer stamina. 

Otherwise, wow, we're enjoying summer to the fullest. We play soccer and tennis in the evenings (not really playing, but running around, passing the ball to one another), we ride the motorcycle, and last week we fired off some rockets. His school has open library in the mornings, so he's also gotten some books, which he reads in the mornings. 

Tonight on our motorcycle ride, we rode by a restaurant, and it smelled so good, he agreed to have dinner there. Usually dinner involves a lengthy negotiation, but tonight he was ready to go. Pic below. 

It's now our secret place, and we're not telling mom and Chase where it is. 

So, looking forward to 4th of July weekend, and just playing it cool till then. 

School's out. Mostly

Ok, the summer vacation has started, but we signed Jack up for a two week reading and math workshop at his school.

The only bad part is that it cuts into his morning sleep, but he does go to bed at night easier. 

Otherwise, we're going day to day with his eating, bowel movements and nightly feedings.

He doesn't eat the best, as he still has a lot of constipation. He tolerates the nightly feedings we'll enough (the food formula doesn't upset his stomach), but if he sleeps on his G-button, it becomes sore, and if he gets the feedings when he is constipated, his stomach cramps up and keeps him up all night. 

So, we judge whether to give him his feedings by how backed up he is. 

We are spending as much time outside as the weather permits, going for walks, playing soccer at his school, and playing with Nerf guns. 

We did go and see Mad Max in the theatre, which he throughly enjoyed. 

So, day to day... minding his intake and output, and playing in between.  

Recovery And Feeding Tube

Jack is recovering well from Monday's feeding tube surgery. His stomach was a bit sore, but is better now. He went to school for a few hours on Friday, and will go back tomorrow morning. 

We took a nice walk at Toys R'Us and PetSmart. We like to look at Lego sets and Predator figures, and then see what kittens are available for adoption. We were both impressed with a tarantula and a scorpion they had at PetSmart. 

When we came back home, we had some grapes, and then he rode his bike up the sidewalk a few times. (He sat on a bike at Toys R'Us and decided he would ride his when we got back.)

Nightly feelings are going well overall. He gets about 500-550 calories without problems. (As opposed to the nose tube from a few months ago, which kept plugging up, and coming out of his nose. Not to mention all the anxiety over re-inserting it, and throwing up.)

He does wake up a few times a night (screaming) if he sleeps on the new one, or if it gets sweaty, but he goes right back to sleep, so it's not a big deal. 

Today, I'm grateful for:

- the tube supplying much needed calories. Hoping to see some weight gain in a week or so. 

- Jack feeling strong enough to go for a walk and ride his bike. 

- a break from the rain, allowing us to go out and get moving. 

Surgery #10

Jack had a G tube (gastrostomy tube) put in today at Children's. It's like button tubbing inserted through the abdomen that delivers nutrition directly to the stomach. Jack will get supplemental feedings at night to help him gain some weight. Little dude is still at 40lbs. The surgeon also did a rigid sigmoidoscopy making sure there isn't a blockage around the colon, as this is what all the X-rays and CT scans were showing. Well, there is a blockage, lots of scar tissue from both the removal of the tumor and radiation treatment which has blocked a good portion of the colon. So today the surgeon dilated the colon to 1.5 cm. He has another surgery scheduled June 4 to do another dilation, hoping to slowly get the colon back to its normal size. If the colon has shrunk back and didn't stay dilated, the surgeon talked about more of a in-depth surgery. (It's a pretty complicated surgery and fingers crossed we don't have to go down that road.) (There are other options too, from possibly just using laxatives to keep his stools soft, to maybe placing a stent. We'll see if dilations "stick".) 

Jack is doing okay this evening, the local numbing cream has worn off and his stomach is pretty tender. He has some pretty good pain meds that are keeping the pain down. They are planning on starting a feeding tonight at 10pm, so hope that goes okay through the night and his stomach doesn't get upset. It's been a long day, a 1.5 hour surgery turned into 2.5 hours and mom and Jack are both tired. The plan is to go home Tuesday morning. No school for a few days, just going to lay low and heal. 

Got Some Nunchuks And Good Lab Results

A few weeks back, a urine lab came back with some irregular numbers (certain hormone levels) that may have indicated presence of a tumor. (However there were other numbers that were within the norm too.)

These hormones can also be on the increase in times of stress or high level physical activity, so the doctor wanted a retest at a later date. So, we did that early last week, and the tests finally came today, and all numbers were in the normal range! So yeah, a big sigh of relief here. 

It does look like Jack will need a gastronomy tube (G-tube) "installed" to help him gain weight. Since he is barely gaining weight, doctors are concerned about stunned growth. 

Gastrointestinal doctor may talk to us some more about it tomorrow. He will also give us his opinion on whether there are any intestinal blockages that may be responsible for Jack's unusual bowel movements. They also took blood samples to test for celiac disease (gluten intolerance) and we should know those results tomorrow. 

At the beginning of the week Jack took a pill that had these 20 little plastic discs, and then he had X-rays through the week to see how the rings progress through his intestinal track. You can see the rings on the last X-ray. 

School is going well, although he is taking advantage of being able to come home after lunch. But with his sudden BMs, I don't blame him. Plus, he's not the only one with "spring fever."

We did go to his school carnival this weekend, and he had an exciting field trip too last week. 

His grades are good too, at least his spelling tests are, but he does need to read more. 

Jack saved, scrounged and otherwise came into possession of some money and bought himself a pair of Nunchuks and a dragon necklace. (BOGO weekend at the local sword shop.)

So he's been practicing with those over the past few days. 

So, we're waiting on:

- the opinion on intestinal track, 

- celiac disease test results and 

- G-tube consultation. 

(And of course Avengers on May 1st, and Mad Max on May 15th.) (And midnight showing of Star Wars on Dec 18th, but that's long term...)

Eating Good

Happy to report that jack is eating well. 

He's trying new foods (tonight he picked cabbage pizza over pepperoni, and last weekend he tried steak and loved it. Also orange popcorn chicken, and shrimp made it on his "likes" list.) 

So that's a big "whew" for us... Throwing in variety and vegetables into the fried chicken repertoire. 

We had a great weekend, we boys ran errands, played soccer and redecorated Chase's room. Jack is getting really mobile and active and is able to run and jump around. Not as much or as fast as usual, but he's getting stronger little by little. 

He even went for a walk by himself today! (Just down the block.) He did come back running/waddling straight for the bathroom. His BMs are still like that, they come on so suddenly, he just has a minute or two to make it to the bathroom. 

Otherwise, school is going great, he loves it, and is able to stay full days most of the time. (He came home early twice last week because he ate too much for lunch! Score!)

Here is a pic from tonight, he's trying raspberry pudding. He didn't like it though, only giving it a 4 out of 10. (I'll take care of the other 6 tonight, as that is one of my favorites.)

A quick trip to Omaha tomorrow, they'll run some urine analysis, and check in with gastrointestinal doc. We'll see if he gained a pound or so. He weighed himself at school and said he's at 41 lbs. He does look better, not so skinny, so we'll see...

Happy Sunday

Jack had a rock star weekend, enjoying the warm weather and playing outside with the neighbor kids.
Friday we had smoked brisket from Phat Jack's BBQ, add this to one of favorite foods. (He also loves shrimp now?!) I have no idea how to smoke brisket, it might be one of those take out foods.

Jack had four full days and one half day of school last week, which was pretty awesome! I think now that he's back at school, he enjoys going and looks forward to chatting with his friends. He's always sneaking something to show his friends, last week it was a Lego dude, a cool rock and a crazy bouncy ball. Hey, if that makes him happy and he has less meltdowns in the mornings, I'll let him stuff his pockets full!

This week should be pretty quiet, we do have a radiation followup appointment I need to schedule.
His eyes are slowly getting better, they aren't so sluggish and dilated all the time. I need to have his eyes rechecked and see if his lenses need to be changed out. GI doctor follow up visit in a few weeks. Also, while we are up at Children's, they will recheck his VMA & HVA Urine levels, as previous labs came back elevated. The doctor isn't overly concerned, but she wants to wait a few weeks to see if the levels come back down.

I'm thankful for:
- Jack wanting to go out and play with the neighbor kids, he can be kinda a hermit on his iPad at times. :)
- A nice visit and lunch at Tokyo's with the boy's Papa and Gramme.
- His appetite slowly, slowly increasing. Some days he surprises us and eats like a horse and other days not so much.

CT scans look good

We had our three month appointment today, and things are looking good. 

CT scans look good, urine and blood work are also fine. 

The little guy is still not gaining weight, he may have even dropped a pound, but is getting more mobile and is able to run, jump and climb stairs on his own. 

We knew today would be trying day for him, (he gets pretty worked up over the IV needle they need to stick in) so we ordered him a giant gummy bear as a prize/bribe to look forward to. 

A couple of pics of him eating it:

Long time, no see...

Wow, it's been a while since we wrote an update. 

I guess that's a sign that things are going well. 

Jack is still hovering around 40lbs, he has a hard time gaining weight. He eats OK, he has good days and bad days when it comes to eating and pooping. 

A few positive trends: 

- he is trying new foods.. Green peas (yea), shrimp (yea), squash (nay), orange popcorn chicken (a big yea), and finally flavored yogurt (yea).

- he poops without much pain, and sometimes without laxatives. It's been a while since he was on the toilet crying from pain, or needing a suppository. 

- he is getting more mobile. This is a slow but steady progress. Tonight he climbed two stairs in front of the house without any assistance. The last time he was on these stairs on his own was after one of the immunotherapy treatments last year when his legs gave out and he collapsed. So it made me super happy to see him climb them not once, but twice!

- he is going back to school, and staying the whole day probably 3 days/week. 

Gastrointestinal doctor does not see any blockages in his intestines, so we're not sure what exactly is causing bowel issues, but for right now we're focusing on getting him and his intestines stronger and regular. 

Otherwise, we're doing homework, playing Minecraft, reading books and apps about planets and molecules, watching movies (we even watched the Oscars) and waiting for Mad Max and Avengers to be released this summer. 

We have seen all the Aliens and Predator movies (9 all together) and were extatic to hear last week that one of our favorite directors will be directing another Alien movie. 

(He is a bit disappointed that none of his classmates know the difference between 6 or so different Predator types.)

He'll have scheduled check-up scans next week, and we'll post more as that gets underway. 

Grateful for many things:

- Nice weather coming up, phones will be unattended as we plan on playing lots of soccer. (Futbol as we call it.)

- Jack trying new foods, getting mobile and pooping without pain

- Chase being supportive and pushing Jack to try harder. (The other week they walked 20 minutes one way, 20 minutes in the store, and then 20 minutes back, to get supplies to make dart blowguns.) 

Weekend Update

Jack had a barium enema done Friday at Children's. A barium enema is when a contrast dye is injected into the rectum, making the colon, rectum and large intestines visible. The radiologist went over the pics with me, showing that Jack's rectum is about 50% blocked. Though not for sure why it's blocked, the radiologist is guessing it's a build up of scar tissue from when his tumor was removed.  It's good to finally know what has been causing all the stomach problems with the little dude. We are still waiting to hear back from our GI doctor, who I'm sure is working with our oncologist and surgeon discussing a plan for surgery. Hopefully getting this blockage cleared will get Jack back to being 100%. Going to the bathroom shouldn't be an issue and his appetite will pick up. 

His weight on Friday was 40.6 lbs., so no weight gain or loss. 

We enjoyed the nice weather over the weekend. Nothing too exciting to report. Jack loves watching the King of Random on YouTube, discovering new gadgets to build. He and Chase made some pretty cool blow guns out of PVC pipe on Sunday. It was great seeming them building and playing together instead of eyes glued to a screen. 

I'm grateful for:

- a evening of playing Monopoly. Mom won! 

- Everyday there is one more minute of light. Please spring, hurry along. 

A quick update

It's been a long time since our last update, but that's a sign that things are going well. 

Knock on wood, we've all been staying flu/crud/whooping cough free, and hoping to stay that way. 

Jack is slowly returning to school, but depending on his general feel, or oncoming bowel movement, or random foot pains, he only stays at school for the morning. 

His bowel movements are problematic, and he'll have an X-ray on Friday to see what's going on with his intestines that gives him so much trouble. He has a hard and painful time every time he has a movement, which can last for days at a time, so he doesn't eat the best when that is going on. 

He's still only 40lbs, so hopefully the X-rays will help the doctors diagnose what's going on. 

He's doing well otherwise, enjoying his friends at school and going for walks around the block when weather permits, or to toys r us, or on treadmill when it's cold. 

Here is a pic from around Christmas, I don't think we had posted it already. 

First full day of school!

Quick little update here on Jack. He had his first follow up appointment and labs came back within the normal range, which is awesome news. His counts are just barely sneaking into the low range of normal, which is super cool especially since we are in the cold/flu season. Ugh! He's been around some kids with cough and runny nose and knock on wood, he hasn't come down with anything yet.

Last week at school, there was a case of whooping cough, so we kept him out of school. He spent enough time in the hospital going through treatment, we didn't want to take any chances on him getting sick.

Little dude is still having problems gaining weight. He's still on an appetite stimulant (Megace) which is also a steroid hormone (the one bad side effect is him being moody) but it's not helping him gain much weight. Our doctor told us it usually works too well, and kids gain weight with no problem. Not so much with him. He's still sitting around 40lbs. Skinny as a stick. We are being referred to a GI doctor to get a better look to see if there is a problem with stomach, small and/or large intestines. He also has troubles having BMs. Tummy aches, tuff time going to the bathroom and no real interest in food, something is going on. :(

We got the okay to visit the dentist, as the chemo has done a little number on his teeth. Four cavities. It could of been a whole lot worse.  Jack graduated from physical therapy two weeks ago. He still can't run and his walking is about 80% normal. We're told as he gains more weight and gets stronger, his walking and jogging/running will come back too. 

On Tuesday, Jack went to school for a few hours. It was even warm enough for him to play outside with his friends at recess. (No insulation on the little dude, so he usually reads in the office if his classmates have outdoor recess.) And today, Wednesday he rocked a full day of school! I was waiting and waiting for a call after lunch to come and get him, and nothing. He came walking out happy and proud after school that he was there the entire day. What a rock star! 

I'm grateful for:

- Jack rocking a full day of school! 

- everyone is healthy and happy in our home.

- loving the warm weather! That means lots of time outside for a walk or a little soccer game. 

- it's a family affair of playing Minecraft. Mom has now joined in on the fun. There is some eye rolling going on at times, as I have no idea what I'm doing, but they haven't kicked me out yet! :) 

Ready For School

So, we're going back to school tomorrow. Only half a day though. 

Hoping for an uneventful week free of viruses. We'll check with the doctor during his checkup on the 8th to see how and when they want to handle his immunizations.

We're all caught up on our Aliens and Predator movies, and are moving on to King Kong. (He's also a huge fan of Titanic, but then who isn't?)

He's still enjoying his Chrtistmas Legos:

(Nothing like keeping Legos in a biohazard baggy, huh?)