Wednesday, September 24, 2014

NY (MIBG) Sept 21-

Me and Beckham are on our way back out to NY. It was an early morning our flight left salt lake at 6:30am Sunday morning.
Beckham is going to be getting a treatment called MIBG therapy.
The last 2 rounds of NK infusion followed by the 3F8 did help to reduce the cancer in Beckham but the treatments were not as effective as the doctors had hoped.
Our last trip out to NY for scans (August 26-30) showed that there was little if any change from the last treatment.
Because of this the team has decided to treat him with the MIBG therapy.
I think the best way to describe what MIBG therapy is would be to copy the definition from the hospitals explanation of treatment for this study.

"131 I-MIBG. (MIBG) is a substance that is taken up specifically by Neuroblastoma, pheochromocytoma or paraganglioma tumor cells. MIBG is combined together with radioactive iodine in the laboratory to form the radioactive compound 131 I-MIBG. The 131 I-MIBG compound concentrates more in cancer cells than in normal cells and may therefore deliver more radiation to the cancer cells while sparing normal organs"

After getting the radioactive MIBG Beckham will be radioactive for about 5 days. Day 1 most radioactive with day 5 being able to be released from the hospital.

Monday We went into clinic to get some blood draws and an iodine injection. After looking at his port they decided that they didn't want to use it. The skin over the top didn't look good at all. There were what looked like small blood blisters on it almost like it was infected (which it wasn't). They ended up having to put IV's in both arms. One to draw blood and the other for the iodine injection.
He wasn't a happy boy!
After the trauma subsided we ended up having a fun day in the playroom between waiting to talk to the various doctors. Monday is donut day and also the playroom got a copy of the new Teenage Mutant Ninja Turtles movie and had it playing. They also were handing out eye masks and big foam turtle hands

Tuesday we didn't have to be into clinic until 2 so we had a little fun and found a playground and went to the toy store.

After our morning adventure we were back in the clinic at 2:30
They ended up wanting to admit Beckham to secure the room and so that he would be all ready to go for tomorrow which would be a busy day. Wednesday morning they want to get him into surgery to remove his port and put in a new temporary line on the opposite side of his chest and have him out of recovery with enough time to administer the MIBG injection that afternoon.
We walked over and checked into our double room. Normally when admitted you share a room with another person but because Beckham would be radioactive we got a room all to ourselves. With space at a premium here in NY we literally had a penthouse suite.
Later that evening a volunteer came over to play with Beckham while I want and got a quick bit to eat. The guy's name was Jamie. After I got back to the room we talked for awhile. He a single guy that owned a software company. Really cool guy. Beckham liked him as well. He asked about him the next couple of days.

Wednesday morning a group came into the room and shuffled the furniture around and covered the floor with some sheets of rubber and put plastic over the bed table and a few other things. After they were done the Radiation safety guy came in to talk to me about what precautions to take. His name was Chris. He was an older man from England and was a really neat guy. Chris gave me a little radiation meter to wear that would measure the amount of radiation I was getting while near Beckham and it would also alert me if I was near him for to much time. It looked exactly like a pager with a little sensor on the top.

We opened a present that Eric and Stephanie Sterling had delivered. Some Dinosaurs and some chocolate milk. Beckham loved both

Beckham couldn't eat until he was done with his operation later today. Luckily he's not much of an eater while in hospitals. He didn't end up going in for the operation until 1pm. Even for a guy that only eats chocolate milk and garlic bread that's a stretch and he was really wanting something to eat by the time they called us back.
He was asleep about an hour and a half when they had me come pick him up in recovery. After picking him up we walked back to the room to meet a lady with an x-Ray machine. They wanted to take a picture of his chest to make sure the line was placed correctly.
Coming out of anesthesia Beckham gets very upset and cranky. Asking him to lay still on a hard board while we take his picture with a massive machine that was driven into the room didn't go over well.
I'V been with Beckham through many all out brawls with doctors but this was the absolute worst. They needed an x-Ray and Beckham wasn't going to let them. It was a massive fight. It was so crazy.
They ended up getting a foggy picture from the side that showed the chest area.
They said it looked good.
I wonder if they could really see anything or had just given up... Maybe they sensed that if they wanted to try again I would have shut it down and ordered them all out of the room.
I'm really glad they didn't need another X-ray

Shortly after the X-ray a group from nuclear medicine came in with Dr Modak and started the infusion of the MIBG which took about 30 minutes.
After they were done Beckham fell asleep watching the iPad

Later that evening I was reading and heard some noises coming from Beckham's bed and looked over to see his little head peeking over the lead wall.

Thursday was uneventful. Beckham watched allot of movies and I read.
Beckham had a catheter put in to drain off his urine. The urine is really radioactive so allot of safety measures are taken to make sure it's contained. The catheter drains into a lead box. The box has sides that are an inch thick. The catheter tube keeps him from going to far from his bed. At one point it was funny, I looked up to seeing him up on top of the table by his bedside.
He was being a typical kid and was doing some exploring around.

Friday morning Chris the radiation safety guy came around to check how Beckham was doing. After checking the radiation levels coming off of Beckham he told me that most likely we would be going home today. It looked like the levels were dropping and that he thought by the end of the day they should be low enough where he would recommend him to be discharged from the hospital. This sounded great! It was hard to believe that we may be going back to the RMH today because Dr. Modak had told me earlier that we would most likely be discharged Monday. But doctors and nurses as they went in and out mentioned that they heard we were going home.
Me and Beckham passed the time with some games child life dropped by.

And of coarse the Beckham's Animals

Chris came by at 3:30 and did another test and confirmed that we would for sure be going home today!
He said Beckham was a 5.5 and to go home he had to be below a 7.
I should have asked what the number represented. Oh well:)
I was able to pack everything into 1 bag and into the overflowing stroller and somehow manage to fit Beckham underneath it all.

We left the in-patient floor but weren't done yet. We needed to stop by the 2nd floor to get a MIBG scan. It's the first of 3 quick scans to show were the I-MIBG is located. To make sure all is well.
They needed Beckham to have an empty bladder so we hung around in the bathroom trying to get Beckham to pee

Beckham jumped up on the scanner like a seasoned pro

Posted from my iPhone

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