Monday, September 29, 2014

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. 

Sunday, September 28, 2014

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. 


Tuesday, September 23, 2014

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. 

Monday, September 22, 2014

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. 

Tuesday, September 16, 2014

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. 

Sunday, September 14, 2014

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.




Friday, September 12, 2014

Friday

Jack's home! He's retaining a bit of fluids, weighing in at 47lbs, his cheeks are pretty chubby and cute. This afternoon he spiked a good fever of 105. Tylonal won't get rid of the fevers, so we add some Ibprofgin to the med list. 
It takes a few days to get the IL2 and antibody meds out if his system and hopefully then no more fevers. He feels pretty crummy, stiff and sore. The first few days at home are tough. Poor little dude. 



Thursday, September 11, 2014

Cookies in Room 603

Today I went and bought five dozen cookies from Eileen's Cookies to share with all Jacks's nurses, doctors and staff. Today (and I'm sure tonight), our room has been buzzing with smiling faces and lots of early birthday wishes. Today has been wonderful, such a sweet boy! 


Jack wrote a note to the doctors and nurses down in the clinic to come up for a cookie. His note reminds me of the book I read to him when he was younger-May I Please Have A Cookie. 

Everything is looking good so far to be discharged on Friday. Can't wait, two weeks here, Jack and I are ready for home sweet home. 

Wednesday, September 10, 2014

Wednesday

Just a quick update. Jack is hanging in there through treatment. He's spiking some good fevers, 104.2 and is starting to retain some fluid. He looks kinda cute with chubby cheeks. 

So far his Creatinine levels are staying within the normal range. (a test how the kidneys are handling treatment.) He's doing a little snacking, but not really any serious eating. Thank goodness for the NG tube. 
We have PT and Miss Peggy (school teacher) comes in every morning to work with Jack. Today he was falling asleep while he was doing school work. We had an early morning, NG tube clogged so little dude was up at 7am getting another one put down. I've lost count on how many times this has happened. 

Other than that, fingers crossed smooth sailing the rest of the week and the kidneys stay happy and working properly. 

Pic: Jack putting together some silly sentences during school time. This was pretty fun!     http://magneticpoetry.com

Today I'm grateful for:
- Jenn coming up to see Jack from Make-A-Wish. It's so nice to have some one to chat with for a bit. 
- Kidneys still doing their job.
- Love all the nurses and staff here!




Monday, September 8, 2014

Back up at the Hospital for Week 2

Well, that was the shortest 1.5 days at home ever! I didn't unpack any of our gear, just washed some laundry and everything is ready to go tomorrow morning. The weather was spectacular this weekend. It was great to have the house opened up and fresh air circulating around. Cats loved looking out the window, they are such big hunters trying to catch a fly or growling at a bird on the patio. 


Saturday I was grateful for an eleven o'clock Husker game. Not that we were excited to get home to watch it, just happy about not being in the crazy traffic on the interstate back to Lincoln. Jack was discharged around 12:30 and it was smooth sailing all the way home.

Saturday was pretty laid back. Jack and I were both tired and grateful for being at home, on our couch and no one bugging us. :)
On Sunday, Jack was a super star and was munching on food here and there. He and I went for a short walk this afternoon, almost a block down and then back up. In the early evening, we headed up to Campbell to kick the soccer ball around. Bugs were bad, so we didn't spend too much time up there.

So the plan is, 7:00am check in tomorrow (Monday). This will be our last week of back to back  treatment. Hooray! He'll be getting both the IL2 and Antibody meds, it's gonna be kinda of a tough week, but he'll power through. Last time he got both meds, our stay was eight days, had some kidney problems, came home 10lbs heavier with fluid and couldn't walk. Now that was a doozy to say the least. I'm saying a little prayer tonight that this isn't the case this week.... because, it's his birthday on the 14th (Sunday) and we need to be home to celebrate this little dude turning 8 years old!

I'm grateful for:
- Jack out and about walking a bit without too much bribing.
- I'm a huge fan of this cooler weather.
- little dude eating a little this weekend. Hey, every calorie counts!!

Sunday, September 7, 2014

Saturday



It's Saturday and Jack and I are looking forward to going home today.

As of now, that darn NG tube has come up five times while we've been here, upset tummy or it's been clogged. No idea what's going on, but fingers crossed that darn thing better stay down this weekend. It's getting to where it's not that big of a deal for Jack to have it put back down. He says he would rather have a NG tube put down then a dressing change. Not sure on that one! 

Friday we played a little poker after the school teacher left. Yep, Jack knows how to play. Look at that poker face he's sporting! 
Also, the Godfather from Godfathers Pizza came to visit. It was National Cheese Pizza Day on Friday, and he brought all the doctors and nurses pizza at Children's.
Today I'm thankful for:
- a pretty low key stay here this week, well except for the NG tube.
- Jack got some serious Minecraft hours in this week.
- PT has really helped him get stronger and Jack is starting to walk better each day.
- we popped in and saw our cousin Abe. Glad his little surgery went well and hopefully he can scoot on out tomorrow morning.
- a successful year of treatment. It's been a year now since Jack was diagnosed. He's been a super star through all of this. Hang in there little dude, we're getting close to being done!





Thursday, September 4, 2014

Checking In

Nothing to exciting to report, which is a good thing. No fevers, bumps or rashes. Jack's weighed in at 39lbs. He doesn't eat the greatest, (kinda snacks) when he's here, so the doctor bumped up his calories to 2.0 calories/mL. He will be getting around 1500 calories a day plus what ever he snacks on.
Jack's doing physical therapy every day, so that's nice to get out of the room and get some good exercise and stretching in.
Today is pet therapy day, so Jack got to pet the dogs which is one of his favorite things to look forward to on Thursdays. 

Other than that, we're just hanging out until Saturday afternoon and we should be released. 


Tuesday, September 2, 2014

Long Holiday Weekend

Jack is feeling good the past few days. He's more active, mobile and appetite seems to be slowing increasing. It's been a struggle finding a balance in a flow rate, (so many mL/hrs for his NG tube), adding some fiber to his diet and constipation that seems to be a never ending battle. At first we just ran the extra feedings at night, which worked okay. But depending on how much Jack ate in the evenings I would have to: 1) figure out a flow rate so his tummy wouldn't get too full, but then, 2) increase that rate throughout the night to make sure he got his allotted calories but not forgetting, 3) the shelf life of the liquid is only good for 8 hours after opening. I have come up with quite the algorithm, which of course changes every day. So now we run the feeding all day at a slower rate, and he still eats during the day.
This weekend Jack put on his soccer (or futbol as we call it in the house) socks and cleats and was ready to pass around the soccer ball with Chase. We went up to Campbell couple of times to kick around the ball for about an hour or so. He was always holding on to one of our hands for support/balance, but he was having a good time. Chase was playing goalie, and Jack snuck a few goals past him. Nothing too exciting to report over the weekend, just enjoying being all together with no set schedule. Big brother Chase turned 14yrs old on the 30th. I can say that I'm a pro at putting down an NG tube, not a fun job but I got it down. Life is good around the Moldovan house.

Jack was admitted to the hospital this morning. The first week is just the IL2 treatment, and the second week is both IL2 and antibody. Yep, it's a two week back to back treatment. Since we are going in on Tuesday, we won't be released until Saturday, and then back again in Monday. 

September is National Pediatric Cancer Awareness Month. Next time you're out and about in the evening, take a drive by the state capital. It's glowing all month. Jack and I went to the capital lighting, it was pretty cool. To all the little fighters out there, Keep Calm and Fight On!
Today I'm thankful for: - Jack feeling better and wanting to go outside and play. Yippie! - Chase is growing quite nicely into his teenage years. I was even told today what a nice mom I was. Score! - thinking about Jack's little cousin Abe. Jack and I will get to see the little guy up at Children's Hospital on Friday.