Immunotherapy

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. 

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. :) 

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

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. 

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.

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. 

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.