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?)