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?)

And the Central Line is Out!!

Jack had surgery this morning to remove his central line. The procedure went well and he's pretty happy it's out. He had a minor melt down when there was talk of an IV, but surgeon said it wasn't necessary, thank goodness! No stitches, he can shower on Sunday and the steri strips will fall off in a week or so. Easy peezy. Jack says he feels okay, no pain so far.

Little dude only clocked in at 40.2 lbs this morning, so he defiantly has a lot of weight to gain yet. He's doing good eating thanks to the appetite stimulant. It's a type of steroid, so not sure how long the doctor wants him on it. Maybe another month or two max. Our next appointment with our Oncologist at Children's is January 8th for labs and what not.

Now we have a long weekend of traveling to see family for Christmas. Last year we missed out on the big family get togethers, avoiding large crowds and germs. I'm still not thrilled at the idea of Jack being around anyone sick, but maybe that's my own paranoia.  I'm sure the first week Jack is back in school, he'll come home with something. ugh!

Pics: Jack's line removed this morning and Jack sitting with all his surgery bears. One for every surgery. That's nine little bears! 

Merry Christmas

Merry Christmas to all of our family and friends!
Jack is feeling and looking good.... and even eating like a rock star. I'm guessing little dude is about 41lbs now. Tomorrow he has a small surgery to remove his central line. He's excited and a little anxious. Crying and laughing all at the same time. This will be the ninth surgery he's had, Wow!

We will be traveling over the weekend to spend time with family. Hoping Jack will feel okay and isn't to sore.

Today I'm grateful for:
- boys having a great Christmas
- everyone is happy and healthy
- and the central line getting removed. No more more dressing changes. Woot!!Woot!! 

Getting Ready For The Holidays

It's been a pretty nice week. 

Jack is starting to eat better, especially on the days when he's not having a bowel movement. 

We're continuing our walks, tonight we went to downtown Lincoln and took a picture in front of the new light sculpture. (We also discovered a pretzel bakery, which proved to be pretty tasty, even Jack asked for seconds.)

Last week, while at school, Jack received a "Distinguished Coyote" (his school mascot) award, which includes a medal. This is his third Distinguished Coyote medal, and he is so proud of them. He would wear them around house clickety-clacking with every step, but we didn't mind, as he was so proud of them. the first two really made him feel a part of his school, even though he missed a year and a half. 

His central line is coming out on Friday!!!

That is a huge milestone. Among other things, Jack will be able to go swimming, and Sarah won't need to do nightly flushes. No more weekly dressing changes either! Those are a painful ordeal for the little guy. 

Blood labs will be drawn throug his finger, which will cause some pain and anxiety, but overall it should be easier on him. 

So, surgery on Friday, then Christmas travel on Saturday. 

Today I'm grateful for:

- YouTube, Fresh Prince, Phinneas and Ferb, and other good shows that Jack's been enjoying lately. 

- Campbell Coyote, three times! (And all the wonderful Campbell faculty and staff. Everyone is so supportive and excited when they see Jack at school.)

- Being able to get the line out on Friday.