Ben is doing well after a really crappy night. The radiation gave him an extended bought of nausea and vomiting overnight and he slept most of the morning, too.
All in all, the experience, from Ben’s perspective, has gone much quicker than he expected. Of course, the catheter is the part that bothers him the most. I’m not surprised as I couldn’t imagine having to wear that thing for 72 hours either.
From my perspective, the whole thing has been surreal and anticlimactic. Surreal because Ben was the first kid here in Denver to do MIBG so everyone was extra cautious and, even though this has been done before, it was new for everyone. Anticlimactic because once it was in, with the exception of the nausea last night, nothing happened.
Ben spent the majority of his time sleeping, watching YouTube videos, texting with his friends on Kik or playing Xbox with his cousin Anthony. All in all, it wasn’t much different than him being at home.
The plan for tomorrow is to have the catheter removed, do an MIBG scan and then release him. He’ll be going home with me as we still have to keep him away from his sister for at least another week. After that he’ll be back for labs every week as his counts are expected to drop.
Yay! More hospital time!
Thanks to all of you for your prayers and support. We do appreciate it and, even though we don’t often get to show it, couldn’t get by without it.
Today kicks off the official week of MIBG treatment here in sunny Colorado. Unfortunately, the majority of the week will be spent in total isolation for Ben as he sits in a lead-lined room to pee out a heavy dose of I-131 and MIBG.
I suspect that by the end of the week he will have a massive dose of cabin fever and will want to get out, if at least for an hour or so, to see the world. Then he’ll be back to doing the normal teenage things like sitting in his room watching videos on YouTube and playing video games. Which, not-so-coincidentally, he will be doing in the lead-lined room for a week. So, really, this is like a mini vacation for him, with the added bonus of radioactive iodine and the possibility that the MIBG will hunt down all the left over cancer cells. (What he doesn’t realize is that when we said he had to shower every day, we meant it. The radiation also comes out in sweat and that has to come off…)
So, back to the order of business today:
We check in at 7:30AM. He gets a PET scan at 9AM then an some labs and such at 11AM. At 1PM Ben goes into surgery to have a PIC line and foley catheter installed. (The radiation comes out mostly in urine, hence the catheter.) After that, we wait until Ben is admitted to the hospital for an overnight stay.
It’s gonna be a long, long day for Ben so please, pray for him.
Ben had an MIBG scan yesterday for the upcoming therapy. Unfortunately it showed a new lesion in his skull. He’ll be going in for an MRI today at 2:00 and this should tell us if it’s just a lesion or if it’s actually in his brain.
We made plans to go to Chicago for the NB conference then Sarah and the kids were going to go to Columbus to see family for the week. As of now this is all off.
Frick. I’m tired of cancer and what it’s done to my son.
One thing good about the situation we’re in with Ben right now is that there still a lot of options out there. When we spoke to Dr. Macy we were given 6 options. I believe they were given in order of least favorable to most…
- DFMO with a side of Cytoxin, aka chemo
- CH14:18 with Lenalidomide (an offshoot of thalidomide… yes, that drug.)
- Irinotecan and Temodar
- MLN8327 – Kinese inhibitor Aurora A (I hadn’t heard of this one until today)
- MIBG Therapy
Most likely we’ll be doing the MIBG therapy here in Denver and follow up with one of the above afterwards. MIBG is the least ‘yucky’ of the bunch, I believe, and also has the best overall response rate.
Now that Ben is old enough, he’s able to give consent to these things, too. It’s tough to be that young and have to give consent for doctors to experiment on you. I can’t imagine the stress he’s going through right now and wouldn’t be shocked if someday he just said “Screw it, I’m done with this crap.” I know other kids have done it and with all Ben has gone through in his 13 years in life, I know hes already worn out, mentally and physically.
If Ben signs, he’ll start his 5-7 days of isolation on July 28th. Pray for the days in between to pass quickly and peacefully. Ben and Madeline both need some time to not have to think about this crap and the summer was supposed to be fun… now it’s just more hospital time.
Ben had to go to the ER last night for yet another low-grade fever. He’s been having them consistently for the last couple of months, at least since they first spotted the spot in his neck.
Always less than the magical 101 that means immediate admission for a week-long stay at Hotel Children’s… (The higher fever usually means your child is neutropenic, aka no white blood cells to fight off infection.)
We have been waiting for the biopsy results from Tuesday and I asked the ER doc if he could see if they were in. I didn’t expect anything to come in but, what the heck, it doesn’t hurt to ask, right?
While Ben and I were in room #39 the doc came in and asked if I would come out and look at his computer.
I immediately thought “Oh, crap… this is weird.” and I was right. We went back into his office and he pulled up the pathology report. It had gotten there that morning and with it being a holiday nobody was around to actually call us to relay the information.
When I got back into the room Ben looked at me and said “Are you ok? That looked like a heavy duty conversation…” It never ceases to amaze me how observant he is when he’s playing on his phone or computer…
I told Ben the news and we talked a little bit about how we’re going to fight this beast again until we’ve done everything we can.
We go in to talk to the oncologist on Monday and most likely will walk out with a plan to do MIBG therapy sometime very soon.
Please, if you have a few minutes today, pray for Ben and our family. This has been a long, tough road that no kid, let alone his sister, mom and dad, should have to go down. We’re all a bit tired but, like Rocky, willing to get back up to fight again as many times as needed.
Ben made it through the biopsy just fine. Dr. Partrick said it was a lymph node and they took out the whole thing. He, of course, couldn’t tell us if it was diseased or not so now we wait for pathology. Hopefully that will be only a day or two then we can get moving with summer plans.
At this point we have one of two options: Enjoy the rest of summer or MIBG here in CO. Many days I wish Ben didn’t have to be presented with choices like this and could just enjoy being a kid. Turning 13 is a major milestone for a boy and hopefully he’ll get to enjoy it without going through more treatment.
Please continue to pray for Ben. We do appreciate it.
For the last 6 months or so Ben has wanted to build a Raspberry Pi enabled arcade machine. He just so happened to receive a Raspberry Pi for his birthday…
Unfortunately, setup has been nothing short of frustrating. The included Wifi utility is probably the worst program I’ve ever used, which means configuring Wifi manually is a must.
The default OS (Raspbian “Wheezy”, a debian distro) takes up a whole 54MB of a 32GB card, which necessitates going into the command line for the OS to use the rest of the card.
If you’ve got a Pi, save yourself some grief and look at these two links:
Wifi setup: https://learn.adafruit.com/adafruits-raspberry-pi-lesson-3-network-setup/setting-up-wifi-with-occidentalis
Repartition the Pi SD Card: http://analogdigitallab.org/articles/raspberry-pi-resize-your-sd-card