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.