Follow Justin’s four-day experience with MIBG therapy, an up-and-coming treatment for advanced-stage neuroblastoma. This therapy involves radiation and requires Justin to stay in a lead-lined room, alone, until his radioactive levels have lowered. Justin is battling childhood cancer for the fifth time and is a St. Baldrick’s Foundation 2012 Ambassador Kid.
The updates below have been provided by Justin’s mother, Lori.
Friday, May 18: The “caged animal” is being released. Justin passed the radiation test this morning and has been cleared to leave, not a minute too soon either… he has been having foley issues and we think it is on its last leg. So instead of repairing it, they are just going to pull it. He would be excited, but he is still sleeping… because of course, according to Justin, he had been a – ready for this… “a caged party animal.”
Anyhow, just waiting for our schedule for the next few days and then we are out of here and marching back to the Ronald McDonald House. Hopefully it’s not raining.
Thanks for your prayers and thanks for checking in. It’s going to be a good day.
Thursday, May 17: Justin is still doing well. He is almost back to his normal, goofy self.
This morning brought more vomiting, but it was quickly controlled. It also brought a glimpse of almost freedom. His radioactive emission number has dropped significantly… it started in the thousands range and as of this morning it was down to 11 something – whatever they measure radioactivity in. They were hopeful that he would get below 7 in this afternoon’s read. Unfortunately, he wasn’t and was very disappointed that he couldn’t leave. His buddy Ben is here now and he doesn’t want to waste any precious time with Ben. There was a bit of crying, but he worked through it with the 5th Harry Potter movie and a promise of spending weekend time with Ben.
Tomorrow we should be released. He has three days of tests – Friday, Saturday and Monday. If all is well, he will be cleared to leave on Tuesday and hopefully back on our home turf in Colorado on Wednesday. Then school on Thursday and FIELD DAY on Friday – priorities, I know. He hasn’t gone to school for months, but makes it back for the choir performance, field day and of course, the last day of 3rd grade.
The doctors say the next few weeks between the two therapies should be pretty good and his quality of life should be awesome. So we will take advantage of that. June should be a busy month: a week of school, a week of cancer camp, a week of relaxing at home and then we are off on a little much needed R&R with his buddy, Carter, and his family before heading back to N.Y. for round two of this therapy.
For now, we will focus on the next few days – promising the next month will be fun for him. Then we will focus on July and finishing this treatment and maybe, another little break.
Thanks for checking in on this crazy ride. Justin is soon to be back to his old dancing self….
Wednesday, May 16 (2): Justin is much better today.
The night was pretty rough – vomiting and some jaw pain (both known side effects of the treatment). But we worked through it, got some pain medicine and ice packs and that seemed to calm him enough to finally fall asleep under a new “blinkie” the Ronald McDonald House gave to Jeff, and I prepared for twirling at midnight. He was finally asleep by 2 a.m.
Today he is more chatty and has a much better disposition. He still has break through jaw pain, but the ice packs are very helpful in minimizing the pain. He is no longer chanting and the bed is only being raised in order for him to get a better sitting position.
Justin is still on isolation behind the lead shields. We are waiting for the radiation team to come in and do their measuring, hopefully soon. We can talk to him though, and see him if we need too or if he wants us. The TV controls are on our side of the room so he sees us when we change out the movies. He has just finished Harry Potter #4.
We test on Friday, Saturday and Monday to see what this treatment is doing to his cancer. Please continue prayers for improvement.
Wednesday, May 16 (1): The infusion went well. A “robot” gave Justin the injection. It was pretty cool for him to say the least. There were five doctors and us in the room and once the injection started, we all had to clear the room. Justin handled it pretty well and even fell asleep for a little while during the 24 minute infusion.
Justin also enjoys the radioactive beeping that initiates from my dose-a-meter when I get too close. He thinks that is pretty cool. Unfortunately his spit doesn’t glow in the dark – that was a big disappointment to him. In addition to not glowing in the dark, he is having terrible anxiety with all of this – I wasn’t prepared for the lack of touch part of this whole thing. During the last six years of treatment, hugging, cuddling, rocking, rubbing and twirling have been part of his soothing and calming process. We don’t have that now. I can’t touch him and anything he touches has to be discarded. We knew that going in, but he decided that he didn’t need a back-up blinkie for twirling and keeping him calm. He didn’t want to have to throw away any of his blinkies. Well, that was a bad call on my part and I should have been prepared. He has resorted to crying, chanting that he feels like a “caged animal” (he is boxed into the lead shields) and raising his bed up and down. Jeff was on a frantic look at the Ronald McDonald House for a blanket at 10:30 p.m. last night. They have also given him anxiety meds. It’s all so overwhelming to him; even though he was prepared, we just missed the mark. I feel bad for him.
All in all, the treatment infusion went great. We will get this other part worked out and he will end up having a good rest of the week.
Tuesday, May 15: We are all checked in, plastic is everywhere. Justin is still in good spirits. Slowly the room is becoming a bit over whelming. Justin is in his position on the bed…we are on our side of the room too. At this point we are waiting for the lead shields to be moved in – they are in the hallway – which will seperate us for the next four days. There is a huge box labeled radioactive, awaiting placement of Justin’s output. The trash can also says radioactive. We are still waiting for the radiation team to visit, but as things get set up, we are pretty sure the jest of the next few days.
Justin’s procedure went well this morning, but now he is complaining about the catheter. We haven’t even started and he is complaining, so hopefully that is not a preview of the next few days. Please say a quick prayer that Justin handles this all very well. His BFF back at home is even down in the dumps, so please say a prayer for him as well. They need each other.
We just got word that they will be starting around 2pm. So at 2pm eastern time, if you can take a quick break and say a prayer for Justin, this treatment to lead to the answer for Justin here on Earth, his doctors and family, friends and fans. Lets storm heaven all at the same time…sounds like a good plan to me. Please join us.
I will update soon…things are starting to fall into place.
Click here to read: “What is MIBG Therapy?”