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.

Doing Better Today

We had a good day today. 

Jack had physical therapy and went with mom to school to hand in his homework and pick up new assignments. His classmates even made him get well cards. 

Feeding situation has improved too. He was on feed throughout the night, and most of the day. We've increased it to 30ml per hour and doctors recommended we slowly increase it to 35ml per hour. 

He also ate some cereal, two fresh apple slices and some Mac and cheese. So it's great that he's able to eat and digest normal food. Extremely happy about that. 

Par For The Course

The weekend started off good, Jack and I took a nice walk around the block, which was the longest he's walked in weeks. 

Unfortunately, he's having a hard time keeping food/feedings down. 

We're trying baby food and rice as well as his normal feeding liquid, but either the current medicine is tearing up his stomach, or the feed is, or maybe his stomach is just frazzed out with everything it's been put through lately.

He had some chips tonight and a cracker, and we're about to start his feed (15 ml/hour), so hopefully that'll stay down and work our way back up to 30ml/hr. 

Today, I'm grateful for:

- Jack and Chase watching "Guardians Of The Galaxy", they both liked it,

- awesome walk with the little guy yesterday (we're preparing for trick or treating), we even visited our old friend, the light post littered with nails and screws from garage sale signs,

- Jack's joint and foot pain is gone! So other than the feeding pump sporadically beeping at night, Jack can sleep without pain through the night. This is a huge relief for all of us. 

Oncology and Radiology Follow up Appointments

Jack's doctor appointments went good today. I'm happy to report he's gaining weight, 40.6lbs. Woot-woot!! Labs looked good also. Next stop was a follow up with the radiologist. All good there too. The staff was excited to see Jack with hair and glasses-- what a handsome young man they all said. 

(Jack doing some homework while we waited for labs to come back.)

No more appointments in Omaha until next Thursday. Glad to keep the running around to just Lincoln. 

Happy Monday

It was a birthday celebration weekend for both Chase and Jack. Family, food and good times on both Saturday and Sunday. Jack felt good, but come Sunday, he was pretty wiped out from all the festivities.

Today Jack had another session of Physical Therapy. He wasn't feeling so hot, not sure what was going on. Maybe just a him-ha Monday.

Tomorrow we have another follow up at Children's in the morning, checking on his weight and how he's feeling. In the afternoon, a follow up with our radiation doctor. A busy day, but at least we get it all done in one trip. Last week were were in Omaha three times, PT twice, and a dressing change.

Today I'm thankful for:
- a wonderful time with our family over the weekend!
- Jack walking around pretty good. Still not completely on his own, but getting there.
- to a someone special who was shopping in Scheels on Sunday. We did a little shopping yesterday and Jack was checking out the Leatherman pocket tools. He had a Squirt (little pocket tool) and lost it a while ago, so it was time to replace it. A sales clerk pulled me aside and said someone saw Jack looking at them and gave me a gift card for him to buy it. It was super sweet and greatly appreciated! Thank you so much! Jack carries it with him everywhere... To bed (not in bed :)), then it comes to the couch, the kitchen table, to the car and so on. 

Back up to clinic for a visit

On Monday (yesterday), Jack had a follow up and labs at Children's. His weight is slowly coming back down, and he is starting to lose some of the fluid he gained during treatment. One of his lines wasn't flushing and his hemoglobin was low. So we were back up to Children's again today (Tuesday) to unclog the line that was clogged and get a blood transfusion. He needs a little B negative boost. 

This morning, before heading to Omaha, Jack had PT at Handprints and Footsteps. He wasn't feeling so hot, so he had an easy session. Any movement and exercise is good with me. Then we were off to Omaha. 

 

It's been a long day, I think we've been at Children's for six hours. Jack's blood pressure was slowly going up, so the transfusion rate needed to be slowed down. Jack happily played games, we did some homework, mined in Minecraft and watched the Lego movie. Throw in our 50 minute drive each way, and we've been gone nine hours. 

Today I'm thankful for:

- Godzilla is realased to DVD/Blueray. (Or maybe this is Jack's thing he's grateful for. We'll be picking up a copy at Target soon.)

- Jack said he was hungry. He doesn't say that very open. We shared some Raising Canes and it was delish!

- Receiving some blood. When his counts are low, he's tired and really has no appetite. Hoping this little boost combined with a three week off treatment  vacation he'll get a bit stronger.... like the old Jack. 

A Monster of a Birthday

Happy 8th Birthday Jack!!

It was a Godzilla birthday celebration here, one of his favorites. Out of the 30 Godzilla movies, (yes, there are 30 of them!) I think he's seen about 20 of them. He loves the old ones best, I think his favorite at the moment is Godzilla vs Destroyer. But, he's a big fan of the new Godzilla movie too.

We had a pretty relaxing day, as Jack still isn't feeling all that great. The boys logged some serious hours playing video games and then we took a walk (Jack in the wheel chair) out at Pioneers Park. The weather was awesome today.

Jack's not a fan of cake, so his birthday desert of choice was a french silk pie from Village Inn. He had a few bites of dinner and a couple bites of pie and called it good. Still not really eating that hot.

Follow up at Children's tomorrow afternoon. He has three weeks at home before we go in for our last inpatient treatment. I think everyone is looking forward to some time off at home.

 Today I'm thankful for:
- Jack being at home to celebrate his birthday. Last year he was in the hospital and didn't want to have two birthdays in a row there.
- Jack got a new Nerf gun to add to his Nerf artillery collection.  Can't wait until he's running around shooting us again.
- Not needing to spend our Sunday preparing for a weeklong hospital stay.