Monday, June 23, 2014

Weekend Update

Jack had a bit of a tough weekend recovering from his week of Immunotherapy. A combo of fevers, upset tummy and diarrhea Friday night and all day Saturday. On Sunday his symptoms calmed down a bit to just feeling worn out and not so great. His tummy is still bothering him a little and he really has no appetite yet. He's having a lot of blurry vision, which is one of the temporary side affects of the treatment. He can see far away, but everything close up is blurry, which is definitely cramping his iPad watching. 

Today we were in Omaha for a doctor's appointment and labs. Labs look good and Jack is starting to feel a bit better, but still not close to funny and playful Jack. Our doctor said give him a few more days and he should start the climb back up to feeling better. It was a hard weekend, Jack felt terrible and I would almost say worse then coming home from a hard chemo treatment week. He felt so bad, he was crying on the toilet from pain and everything he's been going through. He's been so brave and powering up incredible courage and strength throughout all his treatment, it was hard seeing him breakdown and hurt so bad. We are always telling him how proud of him we are and love him to pieces. We had a lot of cuddle time with him, watching TV and chatting about random things. 

We will start a new medicine tomorrow; Accutane, which is normally used for acne. This medicine is part of Differentiation therapy (which is part of the Immunotherapy) and teaches the neuroblastoma cells to mature again, i.e. to stop growing and turn into mature nerve-like cells that do not grow and divide. In this way, differentiation therapy is used to stop any remaining neuroblastoma cells from growing and causing relapse. Jack will be on this medicine on and off throughout the next six months. 

We will go back in for the next round of treatment July 7th. This next set of treatment is two weeks back to back. We are in patient Monday through Friday, go home for the weekend, and come back the following Monday and stay until Friday. (Ugh!)
He has a surgery Monday the 7th to put in his new central line, and then will be admitted for treatment afterwards. 

Jack is pretty excited that he won't be in the hospital for the 4th of July, he loves fireworks! As soon as his incision site where they removed his central line is healed, (hopefully a few more days) he is ready to hit the swimming pool. We are planning a trip to Grand Island to Island Oasis for a day of swimming like no other and for sure hitting some pools in Lincoln too. 

Today we're thankful for:
- no admit over the weekend for Jack. 
- labs look good, no blood or platelets transfusions needed.
- great job US soccer team, you're still in the games! On a sad note, Bosnia is going home. 

Friday, June 20, 2014

Home from therapy

Jack and I got home aground 4:30 this afternoon. Sooooo glad to be home! This five day stay felt long.

On Thursday morning, Jack's neck was swollen in two different spots. The doctor popped in and took a peek and had the nurses try to flush both his lines. The red line wouldn't flush and really hurt when they tried. We went down to X-ray where they put a dye through each line to see what was going on. The blue line was working and the red line had sprung a leak, fluid from that line was going up into his neck. Because the anti body treatment and the morphine can't go into the same line, they had to put in an IV. Treatment was delayed a bit, and we didn't get started until 3:00 in the afternoon. We finished at 6:00 am on Friday. A bit of a long night with vitals every hour. Jack can maybe sleep through them, but not me. :) 
So the plan for Friday afternoon was to remove his central line. Surgery came into our room and removed his line and will put a new line in right before we go back for treatment. (He needs a line with two working lumens.) So he is line free for two weeks! He's pretty happy. He can take a bath and even better, go swimming! 

Jack left weighing 47lbs, so we have a good three pounds of water weight to shed. I'm told to expect fevers through out the weekend, but we are still to call and let them know. Fevers are expected 24 hours after anti-body treatment, but typically not afterwards. So I have a feeling if Jack has a fever on Sunday, we will be going back up to Children's. If not, (please, please no fever!) we have a doctor appointment on Monday afternoon for labs and follow up. 

Today I'm thankful for:
- being home. (seems like a no brainer.)
- Jack finally being off the morphine. Man, that stuff had him sleep talking like crazy. 
- Tibor and Chase having the house look nice and clean when we got home. D'Leons for dinner tonight, I'm too tired to cook. 

Wednesday, June 18, 2014

Mid Week Update

Immuneotherapy treatment is going smoother. Jack's on day 3, with one more day to go. We start treatment around 10am and are done about 15 hours later. One of the many side effects is fever and water retention. He's starting to get a bit puffy in his face and feet and his fever is constantly up and down. He's getting some Ibuprofen now too, Tylenol just isn't quite cutting that darn-gone fever. He's also getting Benadryl every four hours to help with the side effect of itchiness from the morphene. So between those two, he's a bit groggy/sleepy at times and is a bit moody. 

College World Series is in town, so some baseball teams have been stopping by. TCU was up here today and Jack was happy to get another signed baseball. 
We're also watching some World Cup games. (When he's awake:)) 

Today I'm thankful for:
- another day with awesome nursing staff.
- Jack was hungry tonight for dinner. He wanted some chicken nuggets, Cheetos and mandarin oranges. He really hasn't ate anything substantial since Monday morning. He ate just a little bit of his food, but anything is great! 
- Jack got out of bed this afternoon and wanted to sit on the couch for a while. He's had it with being kinda stuck in bed.
The nurses moved the monitors around a bit and he was a happy camper.  

Monday, June 16, 2014


After Day 1, I think I can say they saved the worst treatment for last. Cripes!
(Pain wise, treatment is bad, but this is a great last phase treatment -- finding any cancer cells floating around the body.) 

It's been a game of getting all the pain meds and the treatment meds balanced. 
This evening I think we finally found a somewhat comfortable balance. First day is the worst, but now when we start meds tomorrow, nurses will know where/what/how much of meds. 

This morning and afternoon were pretty rough on him. (And me too.) The morphine now has pretty much knocked Jack out to mostly sleeping. I don't think it's a deep sleep, he's been talking in his sleep- talks about weird things or he wakes up uncomfortable and cries. Weird aches in his legs and feet. He's hooked up to monitors, so even if he was awake and felt good to get out if bed, he really couldn't go too far. 

Texas Baseball team came by this afternoon, but Jack was not up for company. They signed a ball for him. He hasn't even been on his ipad today, which is not like him. Kinda stinks. 

We'll get through it. We have our own nurse and she is awesome! She's here tomorrow too. Only a handful of nurses have had special training for immunotherapy, which is great so they know what's going on. 

On a funny note, Jack asked for Coke and not Sprite. He told the nurse he needs the caffeine to help him stay awake. She got a good chuckle from that. 

Sunday, June 15, 2014

Happy Father's Day

We had a terrific weekend that flew by way too quick! We were busy and watched and played lots of soccer! 

Today I've been getting blankets and clothes washed and suitcases packed. House is pretty clean and the fridge and cupboards are stocked for the boys for the week. With school out for the summer, and my always hungry teenager, it seems like I'm always stocking up and running to the store. Who knew Chase could eat so much! 

Jack's fish, Monster was floating in the tank on Friday afternoon, so there was a bit of tear shedding. All is better now, I said he could get another fish when he gets out of hospital on Friday. He said no, wants to wait a while. Poor little dude was pretty upset. I should have scooped the fish out, cleaned the tank and then ran to the pet store to find a twin. I know, I know, sounds horrible, but he is kinda emotional about things. 

We need to be on the road for Omaha by 6:15AM tomorrow morning. Off to bed by 10PM? That's my goal, but thinking it's probably not gonna happen. 

Boys played Nerf Guns this evening. Jack sporting his green alien morph suit was shooting up Tibor and Chase left and right. I'm sure everyone driving by got a good chuckle. :) 

Friday, June 13, 2014

Celebrating Day 100

Today we're celebrating 100 Days post bone marrow transplant! It's a big milestone in the transplant world. Looking back, it has flown by, but the three week stay at UNMC is still fairly fresh in my memory. During these first 100 days, we were admitted only once for a fever, a few blood, fluid, and platletes transfusions, radiation treatment and a weight gain of three pounds. It was a busy time and lots of trips back and forth to Omaha. 

This weekend we are going to live it up before treatment starts back up on Monday. What's on the agenda? A trip to the movie theatre, mini golf, being outside riding bikes or playing soccer and of course, watching some World Cup games on the big screen in the basement. 
Some good news we received on our doctors appointment Thursday: bone marrow biopsy came back clean, and MIBG scan that showed previous resudual cancer back in Februray, is clean and clear now.

All heart and lung tests came back good and his hearing didn't get any worse from the last high dose chemotherapy. 

Labs came back good and we are all set for Immuneotherapy Monday morning at 7AM. 

We started Leukine injection today, they don't sting like the Neupogen shots, which is great since we have about 14 days of these bad boys. 

Today we are thankful for:
- clean scans. I should put this 10X I'm so happy! 
- Jack eating and full of energy. He's like the Energizer Bunny.
- Chase rallying up friends to play soccer games almost every evening.
- World Cup. Bosnia plays on Sunday

Wednesday, June 11, 2014

Mid Week Fun

Jack loves picking and eating mulberries from our neighbor's tree. He won't eat blueberries, strawberries, raspberries or any fruit ending in the 'berry, but mulberries are fantastic. (So he says and remembers from last year.) He hasn't eaten any tonight... so I'm wondering if he'll try and still like them. Just depends on the day if he's into certain foods or if he's "not a fan anymore." He cracks me up. 

His head is all fuzzy with hair and looking good. It's super soft and fine like a new born baby's hair. 

Tomorrow we have a puliminary function test, lots if labs and a doctor appointment at Children's. Glad to be back at Children's Hospital, it's a bit closer than UNMC and easier to park and maneuver around. 

Monday, June 9, 2014

Playing Lots Of Soccer

We've had quite a break from treatments and Jack has been getting stronger ever so slowly. He is over 44 lbs, although when this all started he was at 47lbs. 
But, after the transplant, almost 100 days ago, he was only 41 lbs. 

So, since the weather is nice, and his energy levels are great, the three of us guys have been going to his school's soccer field and playing around. He usually suits up in his cleets and socks. 

Also this weekend we went to a little carnival in Omaha with cousins. Much fun was had at various rides (of dubious quality and safety standards.)

When at home we like to watch Regular Show. It's a cartoon on Cartoon Network. Let me tell you, you need to be quite a connoisseur of cartoons to appreciate that show. Luckily, Jack and I have broken through the other side, and quite enjoy the adventures of the slacker raccoon, bluejay, and their housemates, a lollipop and a gumball machine guy. 

Next week, we start immunotherapy. That will be a new experience. Jack will be in hospital Monday through Friday. 

Still grateful for:
- Transplant and radiation recovery is going well. Day 100 this coming Friday. I think that's the last transplant milestone. 
- World Cup. We're all excited about Bosnia, Brazil, Portugal and Argentina squaring off in Brazil starting this week. 
- Relaxed summer schedule. Now that the school is out, it seems it's easier for the boys to sleep in. Jack has been regularly knocking out 10+ hours of sleep per night.

Thursday, June 5, 2014

Bone Marrow Biopsy

Jack had his bone marrow biopsy procedure done this morning and all went well. They even did his dressing change while he was back in the OR. 
We're on our way home with a pit stop at Raising Canes, he's starving. 

The doctor came in to chat with me afterwards briefly going over next week appointments. Biopsy will get sent off and results will be back next week. MIBG scan from last week looked good, no new lesions and nothing lit up on the scan. (Radioactive material causes any new tumors too glow, and he doesn't have any.) Horray! 

It will be a nice lazy day with lots of Sponge Bob cartoons and ice cream, so I'm told. :) Jack's in good spirits and ready to go home. 

Tuesday, June 3, 2014

Home from a Mini Vacation in St. Louis

After Jack's scans Friday morning, we headed east for St. Louis for a long weekend. First stop- Bosnia vs Ivory Coast soccer game at 7:30 PM. Lots of teams from around the world come to the US and play each other in preparation to the World Cup. (which starts in nine days.Yippie!) We had awesome seats, off center a bit and 4th row from the field. (The game was at the Edward Jones stadium where the Rams play.) The game was fantastic! Bosnia won, 2-1. Kids had fun, lots of cheering and singing, very different from a football game.

We were in St. Louis for three nights and headed back Monday morning. Our weekend was packed full of authentic Bosnian food, St. Louis thin crust pizza at Dewey's Pizza and custard at the famous Ted Drewes. We visited the Arch and walked around down by the river and spent an afternoon at the Science Museum. Another afternoon we had a picnic at Forest Park and kicked around some soccer balls that the boys got at Dick's Sporting Goods. (Dick's Sporting Store got an "most definitely", but when I mentioned Macy's, there was a bit of eye rolling going on. I'm always out numbered! :)) We also spent some time at The Incredible Pizza Company.

Visiting a new city always (well, with us it seems) comes with getting lost a few times and ending up in some shady neighborhoods. St. Louis traffic is a bit crazy driving in at times.
We have all decided that St. Louis was fun to visit, but declined on packing up and moving there.

Last night when we got home one of our suitcases didn't get brought into the house right away. Long story short - someone decided to take it. Grrrr... It was the boys' suitcase that had their clothes, Bosnian soccer jerseys and scarves. Tibor went out looking for it and talked to our neighbor across the street who saw the whole thing happen. We called the police, filed a repot and within an hour, the officer had found our suitcase! Hooray! We were so happy and thank goodness for our awesome neighbor who had a great description of the vehicle and driver.

Jack's bone marrow biopsy was rescheduled to Thursday morning.
Should be a quick procedure and will be home late in the afternoon.

Today we're thankful for:
- a great family trip before Jack starts his next phase of treatment.
- boys are having so much fun with their FIFA Panini sticker book and collecting stickers.
- getting our suitcase back! Oh, and the two people got tickets and a court date.