Friday, December 26, 2014

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! 

Thursday, December 25, 2014

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!! 

Sunday, December 21, 2014

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. 

Sunday, December 14, 2014

Walking Weekend

Jack is becoming a real walking machine. He loves to go to stores and talk about toys and things. 
We've visited Target, Shopko, ToysRUs, Hobby Lobby, Hobbytown, and even Home Depot. 
We walked around the neighborhood and even on the treadmill. 

On Friday, Jack also spent half a day at school, having a great time with his classmates. Hoping he'll be able to go a few more times this week. (If he's strong enough.)

Last night, we found some "BeanBoozled" Jelly Belly jellybeans at Hy-Vee. BeanBoozled are these heinous jellybeans that have flavors such as vomit, rotten egg, stinky socks, skunk, lawn clippings, etc. But in the same bag you get the normal ones, like cotton candy, popcorn or tutty-fruity, so you don't know which one you're about to eat. So that's what we did for fun last night, tried rotten egg jellybeans and recorded ourselves. It is hard to describe how bad they taste, and how funny it is to watch people eat them and the faces we make. Some tastes, like toothpaste, stinky socks, or lawn clipping are just as bad as they sound. Biting on a rotten egg one, or skunk or vomit is pretty much a life altering experience. 

He eats OK, nothing more than necessary, but he does surprise us sometimes and eats a whole meal without nudging. I don't think he is gaining any weight, but for now I'm just hoping he gets into the more regular habit of eating without complaining. 

Bowel movements are still hard for him and get him bent out of shape for a couple of days every few days. He does take a mild stool softener and a laxative, but if we overdo those then he has just as much trouble with cramps, runny stools and running to the bathroom every twenty minutes. 

So, the focus for now is a steady, healthy, high calorie diet, and lots of walking and moving around. 

I'm super grateful for:
- An awesome weekend, and great walks. Nice mild weather lets us enjoy fresh air,
- Drawing and painting with Jack, we're making some Minecraft inspired masterpieces,
- getting BeanBoozled. 

Thursday, December 11, 2014

Test Results

Our doctor called us early this evening and gave us the best news ever, all Jack's labs, urine and bone marrow results look good! Hooray!! 
On the MIBG scan, the radioactive marker uptake did show up in the liver. But compared too the CT scan, the doctor isn't overly concerned. The plan is to keep an eye on the it through labs and make sure the liver is doing ok. 
His eko-gram did show his heart wasn't releasing all the blood it pumped in, so we will redo those tests. Fingers crossed it was just anxiety right before the surgery, Jack was pretty upset and squirmy while they were doing the test. (It's like having an ultra sound done on your heart, and there isn't much fat on him. Any sort of pressure on his ribs in not the most comfortable.) 
We have the thumbs up for his central line to be removed, which Jack says he wants it done before Christmas. Those weekly dressing changes stir up quite the drama, so it will be one less thing to worry about. Plus, I won't have to flush his line every night and worry about the dressing getting wet when he takes a shower. Another hooray!! 
We go back up to Children's the second week in January for some more labs and a check up. When his central line is removed, clinic visits will involve a poke for labs. He's had pokes in the hospital before and knows those phlebotomists are like rock star with a needle. (What a job!)

We are planning on Jack going back to school after the Christmas break. Slowly easing into the routine of school and hopefully it won't be to overwhelming for him. He hasn't been to school for a year and a half and he is pretty excited to go back. (Some days he is and others he has declared that I will homeschool him for the rest of his elementary days. Nope, not happening.) We are planning on going for a visit tomorrow and a few days next week for a few hours.

So tonight we are all doing the happy dance around the house. We have been anxiously awaiting the test results, which take a bit longer because the bone marrow and urine samples are sent elsewhere for testing. Plus there has been talk back and forth between doctors, nuclear radiologists and cardiologists regarding test results. Our doctor thought by Tuesday we should know more. Nothing. Add another 48 hours onto that and our brains were thinking of every possible scenario. The good, bad and the ugly. Whew!    

What now? Moving forward, Jack will have routine clinic visits and labs to make sure his blood counts are still increasing back to the "healthy child" range. Any decrease in counts is a flag that something is going on. We have asked lots of questions about the Neuroblastoma coming back, is there a time frame, how will we know, how is his immune system and so many more. There is no one answer, except we just keep an close eye on Jack for signs and go from there. We knew there are no concrete answers and no rules apply when it comes to cancer. We watch and wait and hopefully it's ugly face doesn't reappear back into Jack's and our lives. I've had my fill! 

We are thankful for:
- well, it's a no brainer-------> CLEAN SCANS! 
- and many other things. Tonight we are emotional drained, but walking around with huge smiles on our face.

Thursday, December 4, 2014

Done With Scans

Whew, it's been a somewhat busy week, with three trips to Omaha. But we're all done now and nothing planned for the weekend. (Except watching a few remaining Aliens and Predator movies.)

Bone marrow biopsy and second MIBG scan went well. Jack was/is a little sore on his back from the biopsy, but is doing good. He also ate like a rockstar. 

His doctor mentioned that if everything is showing up clean, we'll be able to remove his central line soon, and have him go back to school after the break. They'll brief us on the vaccination schedule, as it nears. 

So, not much else. We're glad to be done with running around, and most importantly that all the procedures went without a hitch. 

I can't overstate how grateful I am for the knowledge and technology available to us so close. Seriously... Using gamma radiation to do a non-invasive full body scan...

Wednesday, December 3, 2014


Jack is rocking through all his scans. Yesterday it was a long day at Children's with the CT scan and doctor appointments. The hearing test was good, no additional damage to the ear. He does have some damage, so when he returns to school they will keep on eye on him too see if he'll need some special accommodations. The CT scans always causes some drama. Before the scan, they prepare a delightful 24 oz. beverage containing some liquid contrast one needs to drink 90 minutes before the scan. We didn't get all 24 ounces drank but they still got good pics. (Thank goodness!)

Today it was MIGB scans and we were told to come back tomorrow afternoon for additional images. So, bone marrow biopsy at 9am (be there at 7am) and then MIBG at 1pm. It's going to be a long day and little dude is probably not going to feel so great. I might need to make a quick run to ToysRUs tonight and get a little something special to get us through the day. A little Lego set is sure to brighten the day.

Pic: Jack pointing at the radioactive symbol on the machine. He's a bit like spiderman. :)

Today I'm thankful for:
- scans going good so far. We don't have any results yet, but Jack is being a trooper.
- good weather for our drives back and forth.

Monday, December 1, 2014

Happy Monday

We had a great Thanksgiving weekend traveling and visiting family. We were back home Saturday night to enjoy all of Sunday lounging around watching movies and staying toasty warm. Chase caught a cold in school and Jack is a little sniffy now. I'm sure being in a car next to his sneezing coughing brother might have had a little play in his sniffles. No fever, so that is good! 

Jack has a busy week:
Tuesday: doctor appointment and labs, hearing test, CT scan, Xray and in afternoon we head over to UNMC for his radioactive dye injection. 
Wednesday: MIGB scan at UNMC. 
Thursday: EKO test and bone marrow biopsy. (Bone marrow is a same day surgery, so no inpatient stay.) In the afternoon a tentative appointment set up at UNMC for possible second set of MIBG images. 

Asking for lots of positive thoughts as we take this set of scans and tests. It's scary, exciting and nerve racking. Little dude (especially) and our family has been through a lot in the past 16 months, we all have our fingers crossed for good news. 

Jack on the treadmill today at physical therapy. He was jogging a bit, going 2.3 mph for one minute. He did that twice! Jumping jacks, crab walks and he can get up from the floor now into a standing position. He's getting back slowly to his mobile self. 

Monday, November 24, 2014

Hospital-free Week

This is our first week without any Dr.'s visits and checkups and it feels nice. 

This weekend, courteousy of Make-A-Wish, we saw Disney on ice, and Jack thought it was really fun. Disney movies are not his cup of tea, but watching the skaters and lights and fun music was quite enjoyable. 

He took his last dose of Acutane today. Acutane is supposed to starve the neuroblastoma cells of vitamin A, and it also dries the heck out of his skin and gives him mood swings. So we're glad that he'll stop "molting", and hopefully return to his normal bossy self. 

Jack is getting stronger and more flexible too. He can bend his knees now, which should help with running and jumping. He can't run yet, but is starting to jump. 

We will be visiting family for Thanksgiving, and although I don't expect him to eat much, he should get plenty of opportunities to walk and move and get exercise. He likes stuffing, so at least there's that. 

We're thankful for many things this week:

- Make-A-Wish giving us a fun Sunday afternoon,
- Jack walking around on his own, and getting stronger,
- The upcoming long weekend to watch movies, play with cousins, and get stuffed with stuffing. 

Sunday, November 16, 2014

Showtime Sunday

We had a super relaxing Sunday today. 
Jack is a big fan of Aliens and Predator movies (I wonder where he gets that from?) so we got a couple of movies from that series and watched them today. Sometimes we walk around the house making the clicking Predator sounds. We also have games on our iPad we play together and learn about those two. (Aliens and Predators.)

Jack is eating well and trying out new foods. Tonight he wolfed down a runza casserole with mushrooms and cabbage, which is quite a leap from his go-to meal of fried chicken.  

Physical Therapy is going really well. Jack is waking and starting to run on the treadmill. He still can't run on his own, but as he gains more muscles and flexibility, I think he should be OK. 

Dr's checkup on Tuesday, I think mainly to check his weight, and maybe discuss the next steps. 

Here are a few pics from yesterday, he recently got his second haircut since his hair came back. 

Today, and for the past few weeks, I'm grateful for:
- Jack eating and getting stronger. It's very nice to be able to have him walk around the house on his own. 
- feeling cozy and watching movies while it's snowing outside. 

Thursday, November 6, 2014

Quick Update

Sorry for the late update, but Jack is doing super! Last Friday Jack had a quick weight check, he clocked in at 38.2lbs. Yep, he gained 1.2 pounds in five days. Rock star here!

Trick or Treating weekend was good, it was a little chilly for him even being all bundled up, but he got a fair share of candy. His cousins shared some of their candy with him too. It was a nice weekend getaway.

Jack is on an appetite stimulant (Megace) and it's working like a charm. It's was great hearing him say last week that he was hungry. We haven't heard those words for so long. He feels better, mentally and physically and is walking around good. I would say today, Thursday, he weighs a good 40 lbs.

Jack's still busy with physical therapy twice a week and of course his school work. When he wasn't feeling so hot with constant stomach issues, it was hard for him to do homework. But now with him feeling better, everything is easier. We have our fingers crossed that he'll be able to slowly transition back into school after Christmas vacation.

We have another doctor's appointment on Monday, weight check again and labs. Jack will start his last two week dose of Accutane on Monday. And then no more meds! Hooray!

Today I'm thankful for:
- no brainer, but Jack finally gaining weight!
- great weather for yard work. It's almost done.
- everyone happy and health in our house. Flu shots scheduled next week for us.

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.

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


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


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!

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


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.

Tuesday, August 26, 2014

Tuesday Night Update

Our awesome Home Healthcare nurse came over on Monday and put Jack's NG tube back down. Oh, and lucky me, I got trained too. So next time it comes out, I'm the one that gets to put it back down. (eyes rolling) I can't even imagine the drama radiating from our house when that happens. Calming meds for two please! :)

Jack's busy working on school work and the glasses make reading so much easier. As we are continuing through treatment, his pupils are slowly bouncing back to normal size. He's been wearing his glasses more and more. Getting used to the bifocal only took a few days and he was good to go. 

Today, little dude was in good spirits and didn't need any pain meds until 6pm this evening. 
He was up late last night, not sure what was going on, but he was still snoozing at 1pm today. In the last few days, he's really been getting up and walking around.. without his walker!! He's still a bit shaky but doing pretty darn good. He's still skinny, but I know he's put on a pound from our last doctor's visit. It was slow coming off, so it will be slow putting it back on. 

This afternoon we made a pit stop at Ivanna Cone. He was craving some good old fashioned ice cream. 
He's usually a mint chocolate fan, but today he went with straight up chocolate. 

We have physical therapy Wednesday and Thursday to help with strength training. He really likes going. They have a punching bag that he is giving some good punches too and kicking the soccer ball around. Other than that, our daily routine is pretty low key since his energy level and walking is still low. 

Today I'm grateful for:
- for our awesome neighbor mowing our yard. 
- Jack starting to feel better each day. He's even a happier little guy too.
- the glasses were pretty easy to get used to. I was a bit worried, but he loves them now. 

Monday, August 25, 2014

Kind Of A Crazy Weekend

Jack had a busy weekend. 
On Friday evening, he and mom had to go to the emergency room in Omaha because his central line was plugged up. (Blood naturally clots around such things.) Since that is the line through which he receives his treatments and transfusions it has to be kept open and able to "flush". So, a couple of hours at the ER and anticoagulant flushes later he was scott free. (When they left, around 10 pm or so, apparently the place was still full of little tykes. Those nurses must never get a break...)

On Saturday, we went to see inlaws and play with cousins. 

Today we just watched movies and critiqued the latest spider-man flick. (Three out of five stars from both of us.)

One little setback tonight is that he vomited, so his feeding tube came out. I guess that's actually two setbacks as he'll miss out on a night of calories and he'll be pretty worked up tomorrow when the nurse reinserts the tube. 

Tonight (well this morning) I'm grateful for:
- the line flushing on Friday. If it hadn't flushed, he would have needed another surgery to replace it. I was doing a happy dance when Sarah texted me from Omaha. 
- a fun day yesterday, giving Jack an opportunity to be active and play with his little cousins. 
- Jack got some glasses, yay, so he can finally go back to reading and seeing things on the iPad. (The treatment dialates his eyes pretty bad, so things are fuzzy up close.) He's got some snazzy bifocals now and is happy to be able to see and read things. 

Wednesday, August 20, 2014

Quick update

Jack is home! Horray! He was released Monday and we got home in the early afternoon.

Monday night was pretty tough with aches, pains and just didn't feel too hot. I think by 4AM, he was up 10 times. NG tube was vomited up too. :(
Tuesday was a lazy day of taking naps off and on catching up on sleep. Wednesday we were at the doctor's all afternoon. Labs, dressing change, replacing the NG (feeding) tube. We are still taking the GMCSF injections until Sunday. (A few got added to the schedule.) 
Labs looked good today, so not sure when we'll be back at the clinic. I need to call on Monday with how the weekend went. Fingers crossed for smooth sailing. 

Jack started taking the Acutane pills, so here soon, he and his Burt's Bees Chapstick will be best friends. 

His NG feeds are just running at night to give him some extra calories. (About 800 calories over 12 hours.) Hopefully in the next few weeks he'll start to put on and keep on the weight. Today, he weighed in at 39lbs. 

He is able to walk on his own, but is a bit shakey, so we still use the walker or he just holds our hand. But he is visibly walking better. 
He'll have some physical therapy tomorrow, and that really seems to help. 

Tonight he tried some chamomile tea, so Tibor and Jack drank it up like a couple of gents. Pinky up and everything. 

Sunday, August 17, 2014

Hoping For A Release Tomorrow (Monday)

This treatment was an easy one compared to the last few. 
Jack received only half the normal dose, so he needed much less morphine. 
He may need a little transfusion tomorrow but maybe not. His blood counts were borderline, so the doctors will make a decision tomorrow. 

More importantly, his urine samples are clean and nominal, so it looks like kidneys and bladder are handling everything like superstars. 

Jack had a busy day with company, which was really great for him and made the day go by faster. 
He even went for a walk around the floor and walked around four times, plus two and a half times in another session for a total of six and a half laps. This is more walking than he did in the past three weeks combined. 

Tonight, I'm grateful for: 
- kidneys handling everything
- Jack getting stronger
- fun company, giving Jack an opportunity to socialize, eat better and get more exercise!

Thursday, August 14, 2014

Week 4 of Immunotherapy Treatment

Jack started his antibody treatment today. It's just half of his usual dose, so it will be a little easier on him. He's still on morphine and all hooked up to monitors, but I can tell the pain isn't as bad. He spiked a fever of 103 tonight, so they drew cultures from his line and he's getting an antibiotic, Rocephin every 24 hours for the next few days.

Jack's weight is down 15% from June, so NG tube was placed today for a while to help him gain some weight. We're going home with it, so I'll get trained on Monday on how to do the feedings at home. He says it doesn't bother him now, he's used to it, so hopefully it stays that way.

Today we had the Storm Chasers Baseball team come in with some cool stuff for Jack. Also, Thursday is pet therapy day, so a visit from the dogs is always fun.

Kinda of a quiet day, (except when the put in the NG tube, Yikes!) but quiet is good. He even took a walk around the nurses station with his walker, making all the nurses hoot and holler how strong he's getting.

Today I'm thankful for:
-Jack's not feeling so rough today with only getting half the dose of medicine. Hopefully in the next few weeks with NG tube and PT, he will gain some of that strength back so we can get back on track with treatment.
- Chase seems to be really liking High School so far. Granted it's only the first week, but going to a new school and making new friends seems to be going good.

Wednesday, August 13, 2014

It's Wednesday.

Jack was released on Tuesday afternoon from Children's Hospital. Word was to keep an eye on the rash and wait for more tests to come back from the lab. It's not chicken pox or anything in that contagious category of viruses, which is good. 

Today Jack and I had a busy day. We spend enough time in the hospital, and with a day at home, no way were we going to be bumps on a log. 

We spent almost two hours at the Lincoln Zoo. He's a big fan of the turtles. He wants to build a little area in the backyard for some turtles to roam around during the summer. In the winter we can bring them in the house, or he said we can move somewhere warm where they can be outside year round. I said no to both. (I know, such a mean mom.) 

Later on this afternoon, we had an eye doctor appointment. His vision is pretty blurry still and he says words and letters on the ipad look like Chinese characters. His pupils are constantly dialated and pretty sluggish responding to light, causing the blurriness. Not a good thing since school is starting. He will be soon sporting a nice pair of bifocal glasses. He's happy to be able to see better. 

Lunch was at his favorite place, Raising Canes. He's still a big fan of the chicken fingers and Texas toast. And to finish out our day, we had our home healthcare nurse pop over for a dressing change. 

Our suitcases are packed and ready for tomorrow when Jack will start his fourth round of Immuneotherapy. Hopefully the plan is to get released on Monday, but who knows. We'll just play it by ear. 

Monday, August 11, 2014

Monday Update

Oh man, what a day! We were here bright and early this morning gearing up for treatment and ran into a big hiccup. First, his heart rate was pretty high, so he had another EKG and Echogram to make sure heart looks good. Heart is good, just beating about 160/minute. A bit fast for their liking.

Pic: Jack sporting a pudding mustache earlier today.
Then as Jack was changing into some shorts around 10am, I noticed he had a pretty good patch of raised bumps on his thigh, a few on his knee and some around his groin area. I didn't see them there last night and this morning Jack was dressed quick like in the dark and popped in the car right before it was time to leave. That little rash patch caused quite the stir, we had three doctors checking it out and then a team from Infection Control to take a looksie at them. Labs were drawn and rash was swabbed and all came back negative for anything serious. The plan is to watch it through tomorrow and if it looks better, we get to go home until Thursday. The doctors want the cultures to grow for 48 hours to make sure it's nothing serious. His immune system is all out of wack and since we were out and about this weekend, who knows what he could have picked up. As of now, we don't know what has caused this little raised rash.

His weight is still down, lower again since last week. Which I have no idea how, he has been eating like a super star. It's very frustrating playing the roller coaster weight game. We never have enough time in-between treatments to put any weight on him. It's to the point where there isn't any more wiggle room for weight loss. There is talk about a NG tube again to help with a nutrition supplement. He has no idea about this and glad he doesn't read the blog. Sorry little dude. 

Physical therapy came in today and worked with Jack. They did some stretches, range of motion exercises and some standing and sitting. Jack did good and didn't give the lady to much flack. :) 

Also, we asked that a Child Psychologist came in to talk to Jack. He's been having some increased anxiety since starting the Immuneotherapy. It's been a long road, almost a year now of being sick, poked and going through this whole shebang of treatment. Although he has been amazing throughout this, there is only so much a seven year old can handle. Hopefully we can get him back to being happy, somewhat carefree and whistling.

On a side note, the moon looked pretty cool this evening from our room. It was the highlight of our crazy day!

Sunday, August 10, 2014

Happy Sunday which is ---- National S'mores Day!

Jack had an great weekend. He's feeling a little better each day. Still not walking on his own, but he is getting around pretty good with the walker. His appetite is pretty good but is still pretty skinny. He's been drinking chocolate milk like no other. I am sneaking in some Carnations Instant breakfast for more calories, protein and fat. He thinks this 'new' chocolate milk is delightful.

We quit taking a couple of meds this weekend, Periactin (appetite stimulant) and Gabapentin (nerve pain). I think the side effects of were doing more harm that good. Jack is also having to take the injections every morning. They are going so-so. There isn't any fat on him, so I think this little thighs will be getting sore. He will have to take shots for the next 12 days.

Saturday, Jack and Tibor went and saw Teenage Mutant Turtles. Jack loved it! Saturday night Tibor built a little fire pit, and we roasted some marshmallows and made some s'mores. Yea, it was in our backyard, but we pretend we were in Colorado camping in the mountains. Sunday we all went to see the movie Into the Storm. It was pretty good. Walked (Jack wheeled) around the South Pointe Mall for a bit. It was nice to get out for a while. We had tacos tonight for dinner and for desert, it was custard from Culvers (Bonefire S'mores of course) for desert.

We are packed and ready for our week of treatment. Check in Monday at 7am. He'll be getting the anti-body med, so he'll be hooked up to monitors. Just a half dose this time, so hopefully an easier go around this week. I hope and fingers crossed.

Today I'm thankful for:
- having a nice weekend. It was calm and relaxing. Just what I needed.
- Chase starting school on Tuesday. He's ready for school, I think he's been ready for a while.
- for great co-workers at Duncan Aviation. It was my last day on Friday. Jack's treatment this last phase is pretty intense and I felt that all my time and energy should be spent on him and keeping our crazy family in order. :) We didn't say good bye, but a 'see you later.' In the 2.5 yrs that I have been there, I have meet some incredible people that I can call friends now. I foresee lunches in the future together, I know they would like to continue to see and hear how Jack is doing. 

Monday, August 4, 2014

Monday Update

Today Jack had another followup at the clinic. Labs all look good and blood pressure is coming down. (High BP was related to kidneys being damaged. BP lowering, kidneys healing themselves more and more. We are halving the dose of BP medicine.)

His weight is pretty low, only clocking in at 39lbs, this is the thinnest he's ever been. We're encouraging lots of protein, fats and what ever else looks good to eat. I'm hoping the increase in mobility will get him more hungry. We have also increased his appetite stimulant to 3X a day. He's not a fan of peanut butter or nuts, some cheese is ok, he used to love yogurt and granola, but not sure what happened there and won't drink shakes either. Sigh.... he makes it difficult at times when it comes to meal and snack time.

Plan is to still admit on the 11th of August for a week of anti-body treatment with some adjustments. He is only going to receive half the dose this time around. I asked about waiting a week or so and the doctor said a week isn't enough time to really make any great weight gain. So, some medicine is better than none, I guess that's the logic.

Because Jack has lost a lot of strength, the doctor wants us to start some physical therapy. We have an appointment at Handprints and Footsteps (Pediatric PT) on Thursday morning. Back up to Children's Thursday afternoon for another follow up. I'm pretty sure we will start the injections on Friday and they go throughout treatment. Not sure how these are going to go since there is no fat on on him. Maybe I'll see if he'll let me try his hip instead of thigh, not looking forward to these. Ugg!!

Thursday evening we have open house at his school. Even though he won't be starting this fall, it will be good for him to meet his teacher. Maybe we can do some FaceTime with the classroom too when he's feeling up to it. So, a busy day on Thursday. He asked to go to the Lincoln Zoo on Wednesday, it's nice to hear him wanting to get out and about.

Today we're thankful for:
- Jack being able to use his walker more, which is saving both my and Tibor's back. :) We have a wheel chair too if he wants to go out and about.
- finally we are starting to see small baby steps to Jack starting to feel a bit better. Though I haven't heard him whistle in a while, (he whistles when he's happy and feeling good) hopefully soon I'll hear that melody out of his lips again. 

Saturday, August 2, 2014

Starting To Walk

Jack is feeling better and stronger and he even took a few steps on his own today. He has a couple of walkers too that he can now use around the house. 
Tomorrow we may even take the wheelchair and go outside or to the store. 

His blood pressure is nice and normal now. 

So, all in all, seems like we're finally on the upswing. We'll focus on rest and eating this week and hopefully he'll be ready for the next round of immunotherapy in a week. 

Thursday, July 31, 2014

Lots Of Sitting Around, But Getting Better

The little guy still can't stand on his own or walk, but he is getting visibly more stable by the day.
Water weight is gone, YAY!, but he still has a good deal of pain in his feet which keeps him up a couple of times per night. This is a huge improvement compared to five and six times a night earlier. (All last week and earlier this week, it was brutal getting up every two hours.) 

His blood pressure is starting to stabilize, but is still a bit high. We take his BP five times a day and will call the office Friday to see if we need to increase his medicine. He's not taking the Actutane currently, I think we will start back up on Monday. Not sure if this will delay his treatment, since per the study he's too take the Actutane 14 days prior to admission. We have another appointment on Monday and I'm sure we'll find out more. I think we need another week plus to recoup, to start back up in 11 days, yikes. 

Also, the appetite stimulant he takes is working! Jack wanted to go to IHOP this morning for breakfast, which he chowed down like a super star.
So, fingers crossed those muscles start rebuilding. He's pretty skinny again now that he's lost all the water weight and then some being in the hospital with no appetite.

Today we're thankful for:
- Jack eating and hopefully start to gain some weight back.
- Chase, what a kid he is getting up at 4:15am to detasseling corn. It's his first job, not the easiest, but he''s sticking with it. He said he might even do it again next year. Wow!
- going on drives with Jack. Since he can't walk around and be outside, we hop in the car and go for a drive. We've explored a lot of the city. Lincoln is getting a bit boring, I told him we should go some where cool. I was joking and said maybe we'll drive to Colorado and up to Pikes Peak. He was all about that! Too bad it's 8 hours away!
- Jack's eyes. Crazy how much his eyes and a small smile can say speak to your heart. 

Monday, July 28, 2014

Water Weight Is Slowly Coming Off

Jack is losing the extra water weight which is good. His belly, thighs and feet are still swollen but are slowly getting better. 
He's eating really well, so hopefully he's putting on some healthy weight too. 

He had a doctor appointment today and his blood labs and urine sample looked good. 

His blood pressure was very high however, probably due to water retention, so he got a pill for that. 

Unfortunately he still can't stand or walk on his own. I think once he gets rid of the water and gets a little bit stronger we'll be able to take a better look into that. 

Until then the orders are to take it easy, eat and mind the fevers. 

Friday, July 25, 2014

Friday Update

Jack is feeling a little better, but not much. He had a doctor appointment on Thursday; labs came back fine, doctor wants to keep a close eye on his fluid retention and input and output of liquids. He has only lost a half of a pound since leaving the hospital on Tuesday.
We have another appointment (follow up to the follow up appointment) on Monday.
Jack's belly, legs and feet are still really swollen and his joint pain is still hanging around. He's still not able to walk. Two more medicines have been added to his list to help with the pain. His seems happy as long as he doesn't have to move. 
Our doctor called this afternoon to check on the little dude. If his swelling increases or he can't go to the bathroom, we're to call Children's over the weekend. Fingers crossed no trip back up to Omaha. 

No big plans for the weekend, I hope he'll be able to walk...... well I'd just be happy if he could stand without wobbly legs and not cry. Poor little dude. 

Tuesday, July 22, 2014


We're finally home! Jack was released this afternoon from the hospital and is glad to be home. I'm pretty stoked myself and I think Tibor and Chase missed us too. Jack is retaining a lot of fluid still, weighing in at 50 lbs when he left today, he looks a like a little chipmunk. I foresee lots of trips to the bathroom in the next few days. (He weighs about 40lbs.) 

One of the side-effectss of the Immunotherapy is joint pain and swelling. Jack is pretty stiff and can barely walk, or maybe I should say can't walk. He can shuffle a few steps, but then we need to carefully pick him up and carry him. (And weighing in a 50 lbs, he's no feather. :)) 

We have a follow up appointment on Thursday afternoon for labs and to see the doctor. I think we'll talk about tweaking the next round of treatment. Last few days of kidney stress and fancy medical names like actute kidney failure was a bit stressful to hear. Those kidneys were mad as hell and my vote is not to irritate them again. The part of the kidneys that were injured was luckily a part that can heal itself and isn't permeant. 

So, slow and steady for the rest of the week for Jack. The only medicine Jack is allowed to take is Tylenol. He starts taking his Acutane medicine tonight, so we'll expect the dry skin and chapped lips next week. He still has a week or so before we start injections, and back to the hospital August 11th for a week of anti-body treatment. Not even going to think about going back, only R&R on our minds for now. 

Thankful for:
- Jack being released today
- Chase and Tibor decorated the house for us with welcome home balloons, confetti, signs and streamers. It looks like a party in our house. 
- no permeant kidney damage 
- and thank you to everyone who keeps Jack in your thoughts and prayers. It was a tough 8 days in the hospital. Well, more like 13 days. We only had a short recoup weekend (the weekend before last) before having to start this leg of treatment. 

Monday, July 21, 2014

Doing Better Tonight

It was a long day for Jack and Sarah today, again, but it looks like the night is ending on an encouraging note. 

The kidneys and bladder ultrasound (which they took last night at midnight) turned out to be OK. 
Jack was receiving maintenance fluids all day today and drinking well, but not much was going to his bladder. We're still not sure why, but apparently that is one of the rarer side effects of immunotherapy-- fluid retention. 
So he was looking all swollen and plump from retaining all that water. 
This evening he received some medication, I'm not sure what it's called, but it sends a signal to his body to get all that fluid to his bladder and shortly after he peed. 
So, hopefully he will get a handle on this retaining business soon. 
Overall he's making progress, last night he needed a catheter, but tonight he's taking care of business all on his own. (TCB as Elvis would say.)

His bones and joints are also extremely stiff and painful, so he can't move much, but he can take Tylenol for it. I'm not sure if it helps but it's something. 

He also got a blood transfusion tonight, his hemoglobin was a bit low. 
He promptly requested a PBJ sandwich. Carbs, sugar, fats and protein, exactly what he needs. 

No vomiting, no diarrhea, so that's something to be thankful for. 
On a side note, the doctor was still there at the hospital at 10:30 at night... I don't know how they do it. 

Monday - no release today

Still no pee today, so they're staying in hospital tonight. 

Jack is still retaining a lot of the fluids, rather than getting them into the bladder and passing them. 

Next step is to give him some medicine that will help the body get the fluids into urine and into bladder and see if he can pee then. 

If that doesn't work, it's back to the catheter. 

The teacher at Children's brought Junie B Jones books, -- Jacks favorites, so Sarah reads them and makes him laugh. 

Otherwise he snacks and drinks OK, so hopefully the urinary situation will start resolving itself. 

Sunday, July 20, 2014

Sunday - Hopefully They'll Come Home Tomorrow

Well, it's Sunday and Jack and Sarah are still at Children's. 

The kidneys seem to be working fine but the little guy is unable to urinate. He does have a catheter which drains his bladder, so hopefully tomorrow they'll be able to take it out and if he can pee on his own, they should be ready to come home. 

They also have an ultrasound for the kidneys scheduled for tomorrow. 

He was supposed to go to a camp organized by Children's this week, but that won't be happening now. I'm not overly upset, he needs a lot of time to get back in the eating/sleeping sync, but I'm pretty sure Jack will be upset. 

It's been a long week for Sarah and Jack and an even longer weekend, and we'll be so happy to have them back home. 

Saturday, July 19, 2014

Doing Better

Ok, it looks like kidneys are back in business. 
He did get a catheter inserted yesterday, which was removed this morning, to help relieve the bladder and get the filtration back on track. 

It seems that heavy doses of ibuprofen affected the kidneys, and immunotherapy combined with lack of drinking and eating took their toll on the bladder. 

But, things seem to be back on track now. 
He's still talking in his sleep, and zonking out throughout the day. I think that should go away once he gets in a more proper sleeping and eating rhythm. 
His bones are being overworked too making the antibodies, so that keeps him uncomfortable. 

The plan is to stay in hospital one more night, and if he can pee and eat a bit, should be released tomorrow, on Sunday.