Thursday, October 30, 2014

Ready For Halloween

Ok, we've been eating and walking and talking about "trick or treating", hoping that this year we'll be able to do better than last. 
Jack walked around half a block more or less on his own, and I think walking around with a cousin tomorrow night will give him a burst of energy. 

He's been eating and going to the bathroom really good this week. Last weekend was a bit sketchy, but it's been better since then. 

He clocked in at 37lbs on Monday, so hopefully he'll be showing increased weight at tomorrow's weigh-in. 

We'll post an update this weekend with pictures and loot. 

Monday, October 27, 2014

A Busy Monday

Jack had a clinic visit in Omaha this morning and PT this afternoon back in Lincoln. His weight is a bit down, and he still have bouts of constipation and nausea at times. Seems like a never ending battle. The high dose of Accutane he takes has a list of side effects, a few beings it's an appetite suppressant, (which is opposite of what we need!) constipation and it's hard on the ole tummy. We take our last dose on tomorrow (Tuesday) and have a two week break before we start the last and final two week dose. We go back on Friday for another weight check. Fingers crossed he'll be up a half of a pound. Bring on the chocolate, cheeseburgers and french fries!

We had a great weekend. Friday, Jack and I saw the movie Alexander and the Terrible, Horrible, No Good, Very Bad Day. We both really enjoyed it.
We took a few walks each day to build up some stamina for some trick or treating on Friday.
And, the greatest news ever... (drum roll please) Jack is walking on his own now. Hooray! He's still a bit unsure of himself, but he was out walking around the yard and kicking the soccer ball with Chase this weekend. It was great to see and a definite a confidence booster.

Today I'm grateful for:
- Jack walking again!
- loving the fall leaves. (maybe not so much the raking)
- thank you to my dad and Shellee for coming up on Sunday to help out with some yard work.

Monday, October 20, 2014

Busy Playing Poker

This weekend we stayed active and busy. 
Jack vomited his feeding tube Sunday morning and we decided to keep it out and see if he will slowly start eating solid food, and I'm happy to say he did. 
We started pretty slowly yesterday, crackers, Nutella, and banana bread, and worked up to eggs and ham sandwich, chicken nuggets and ice cream, pretzels and cheese sticks today. 
He's also walking on his own finally and getting back into the grove of things. 

We got a kit of playing cards and chips, so we've been playing poker every night since Saturday. It's good exercise for his fingers, plus it's great fun when we're all betting against each other. 
Chase had three of a kind tonight, and was betting strong, but Jack beat him with four 8's. 
He's been using his lawman badge as a lucky charm. 

It's payback for Chase beating my two full houses the other night. 

Lots of things we're grateful for:
- nice weather allowing us to go for walks,
- Jack finally being able to walk on his own. It's pleasantly surprising to see him sneaking around the house. 
- Jack eating solid food and not having an upset stomach. 
- Poker... Gives us a nice excuse to play together. 
- Entertaining and helpful physical therapy. 

Thursday, October 16, 2014

The Last of the Shots!

Jack took his last shot/injection today!! Horray!! We opened up the sharps box and counted all the shots we did at home, 94 of them. We also figured about 30ish shots he received while inpatient at both UNMC and Children's, and we have a grand total of 124 shots! 
Yes, there were lots of tears, begging and pleading, but we made it through. What a rock star! 
Yesterday was a beautiful day, so we walked through the Lincoln Zoo. Yes, I said walked, no wheel chair! We held hands, and I would guess he walked about a quarter of a mile. He was tired and feet were a little sore, but he did it. (No pain meds either) He's getting super strong and I think just maybe, he'll be walking all by himself by Halloween. (Fingers crossed) 

Today was physical therapy, and Jack's therapist was so happy and proud with all his exercising he's doing at home.

Tuesday, October 14, 2014

Every Weekend Should Be A Three Day Weekend

We've had a great and relaxing long weekend since Jack came home on Friday. (Columbus Day, for those who are not in the know.) 
The weather was fantastic, so we took some nice drives, went for a couple of short walks and played a lot of poker. 

Recovery from last week's treatment is going slow. Jacks stomach and bowels are all sorts of a mess, so he makes frequent bathroom runs. (All day and all night.) But hey, things are moving, and that's better than constipation or diarrhea. 
He is drinking water and chamomile tea like they're going out of style, which is fantastic. Still doesn't eat much, maybe a couple of crackers per day, but his new no-clog feeding tube is keeping him well supplied with nutrition. 

But, we don't have any checkups for another two weeks, and we'll slowly work on getting better and better. 

Today, I'm grateful for:
- The weather. Makes it much easier to get the little guy outside and in fresh air. 
- Chase, being supportive and inclusive. He's been playing poker with us and entertaining Jack. (Maybe he's just trying to get out of homework, but hey I'll take it. )
- The new feeding tube. The new feeding tube, and one more time, the new feeding tube. Getting nutrition in him just changes the whole dynamic. He's getting stronger, (he's even grown half an inch since transplant) and I'm not hovering over him nagging him to eat. 

Friday, October 10, 2014


Home, what a wonderful place!

Jack was sad to say goodbye to all the nurses and staff but promised to come and see them all again. 
They made a giant card for him, wishing him well and how brave he's been. 

Jack's not quite done with treatment yet, but this was his last inpatient hospital stay. He has shots for another week and then Acutane until the end of November. 
Scans and the whole nine yards first part of December.
Until then, he will still do physical therapy until he regains his strength and mobility. He will continue school at home, as he hasn't been reimmunized. (bone marrow transplant wiped out all those shots he got as an infant.) His immune system is still out of wack and the last thing we want is for him to get sick. 

Back up to Omaha on Monday for a checkup. Jack's weight was up to almost 47lbs when we left. So a little bit of water retention. He has some pretty cute chubby cheeks. 

Thankful for:
- so close to seeing that light at the end of the tunnel.
- coming home to a clean house, thank you boys.
- hello fall weather. Love all the colorful leaves around the neighborhood. 

Thursday, October 9, 2014


I think it's starting to sink in, at midnight, Jack will be done with his last antibody treatment!
Woot-Woot!! At full dose, he has handled the past four days like a rock star. A little loopy from the morphine at times, but he didn't have any pain. (This treatment is pretty painful.)

Today we spied a Nebraska State Patrol Officer visiting another kido in the room next door. We said  hello, saw his cool badge and took a quick pic with him. Jack has a new love for police officers and badges. He wants to ride in the back of a police car with lights, sirens and the whole nine yards. Thank you Mr. Officer for taking the time to be a celebrity in Jack's eyes! 

We said goodbyes, gave hugs and knuckle bumps to the nurses who won't be here tomorrow when we leave. It's bitter sweet to say goodbye, but it's more like see you later, as we will stop up on our clinic visits to say Hi to everyone. All these lovely ladies (yep, all girls around here.) feel like family since we have spent so much time up here. I will miss all dearly. 

Tuesday Update

Jack had a rough first day back. He's getting the full dose of antibody (meds) this time around. It's been a few treatments since he's had a full dose, his weight and being pretty weak has been a factor in dosing. (Week five was half dose, week six was three-fourths dose and this week (7) we are at full dose.) The dose strength and rate increased, which increased his morphine rate also. Jack very much dislikes the loopy, fuzzy feeling of the morphine at first, but I think after a while, he just gets used to it. We had some pretty funny conversations last night. He doesn't ever remember them, and I'm never quick enough to get them in a video.
Jack can't leave the floor because of all the monitors, but sometimes we unhook and take a little stroll around the floor. (usually in the mornings when the morphine is really low.)
Physical therapy comes in everyday and works with Jack for about 30mins doing some exercises and stretches. Also, the teacher comes in to help out. This is soooo nice, it's nice to have a break and he usually doesn't tell Ms. Peggy no. He has no problem with eye rolling and sighing at the fact it's homework time with me. 

Here is his newest invention, a back scratcher.  (Actually we make one every time.) Two forks, five tongue depressors and some foam tape makes the best back scratcher ever. The morphine makes him itchy all over, so along with some Benadryl and this handy-dandy contraption, he's usually good. 

Watch TV/iPad. Scratch. Sleep.
That's how we roll this time around. 

Wednesday, October 8, 2014

It's Wednesday

Day three! We're getting so close to Friday! Today was pretty uneventful, which is good. Jack usually has yoyo fevers, getting up to 104 during the day and evenings, but slowly they come back down. NG tube feedings going well, he did get an upset stomach yesterday and it came up. :( He's drinking (and peeing) like a rock star and snacking a little here and there. Every calorie counts! 

Dad and Chase came to visit this evening. Jack was sleeping when they first came and was pretty happy when he woke up. 

Today I'm grateful for:
- treatment going well
- a visit from dad's friend Tom. 
- great nurses here. They become part of your family when you spend so much time up here.

Sunday, October 5, 2014

Last Immunotherapy Treatment

Jack and mom are all packed up for our last inpatient treatment. Our weekend was pretty low key with staying up late, sleeping in, playing lots of video games and taking a few good walks for exercise.

Jack had a doctor appointment on Thursday to check his labs and to start his GM-CSF injections. He was not a happy camper when told he would be getting shots for the next two weeks. I told him, these are the last of the shots and how happy he should be. That didn't seem to help out very much. He takes them like a trooper, also, we give him $1 for each injection.... seems fair.

Fingers crossed for an uneventful week. He will have Physical Therapy while he's up at Children's and our favorite teacher, Ms. Peggy will be there to help out with homework.

Today I'm grateful for:
- last scheduled treatment. Nothing is ever set in stone when it comes to fighting cancer, so fingers crossed and lots of positive thoughts that this is our last week of treatment.
- great weather for lots of little walks and running errands.
- Jack is getting around good, still not walking on his own, but getting so close. We just hold on to each others' pinkie finger.