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
Much to our chagrin Ben’s biopsy has been delayed until next week. Per his oncologist, the surgeon thinks that the spot in his neck is actually a lymph node and that he can successfully get to it via surgery.
Unfortunately the surgeons’ schedule was already booked this week so it’s another week of waiting… It’s the waiting that can sometimes be the worst part of this journey. At least when you know you can make plans and tackle the beast.
So, until we know for sure, please continue to pray for Ben and all the kids out there who are battling pediatric cancer.
On that note, I just found out that our good for nothing congress critters let the Carolyn Price Walker Conquer Childhood Cancer Act lapse… This was supposed to put millions of dollars into pediatric cancer research but the bastards couldn’t fund it. I don’t think this is a party thing, but more just the elites in congress doing what they do best: Funneling money to their special interest groups and ignoring the little people. (Yes, I’m ranting a bit. I’m pissed.)
If you know of anyone battling pediatric cancer then you know how important it is to do research on a cure. Call your congress critter and ask them why they can fund buildings and such but let little kids die. That should get their attention…
Ben turned 13 yesterday and I do believe that he had a really great birthday party! His one request that he just have some friends over to play video games with him, since that’s his thing, and that’s exactly what he did. Not to mention, the new PS4 helped with that quite a bit. As did the games…
This was also a big deal for Ben because, while I’ve always expected him to make it to 13, Neuroblastoma sure has a way of changing life’s plans. With the news we got this past week, it was refreshing to just relax with friends and enjoy the day.
I couldn’t be prouder of the young man Ben has turned out to be and, if it’s God’s will, I’m very much looking forward to the man he going to become. (Watch out, folks, your daughters will not want to miss out on this guy!)
He’s a great kid and, to borrow from God:
“This is my son, whom I love; with whom I am well pleased.” (Matthew 3:17 NIV)
I love you, Ben, and am proud to be your Dad!
We did not get great news today after all. The PET scan showed that the spot that was previously lit up was still lit up. It also showed a new, deeper spot that is a bit lower in Ben’s chest.
While we don’t know 100% that this is new disease the likelyhood of it being anything else is slim. I’d say our 95% chance from yesterday flipped, i.e. we now have a 95% chance that it IS new disease.
They’ll be doing a biopsy on Monday and we should know by Tuesday or Wednesday what it is and what next steps are. On the plus side there are many options available here in Colorado and other facilities across the US. If Ben does MIBG he could be the first kid to do it here in CO, so there’s that honor…
I’ll keep posting as we get updates.