Thank you for your patience, it's been a fast paced two months :)
Picking up where I last left off...
So, nothing came of the spots in his lungs, they just stopped showing up, that's fine by me. We were discharged and sent home with 4 days of oral anti-biotics. As soon as those were up, 72 hours later, he started going through the numbers again; fever, sluggish, rush to the ER, septic shock. While this time it was less frightening, you haven't seen anything until you see that kids jugular skipping along at 172 beats per minute =/
Turns out the anti-biotics didn't clear him of the infection, apparently they call it a line infection not because that's where it came from, but rather because the biofilm that makes up the central line harbors bacteria and shelters it from treatment. This time an infectious disease Dr. got involved and it was determined that his port needed to come out. He had surgery to remove that and had a PICC line placed under his right bicep, fast forward two weeks and he's off anti-biotics and doing just fine.
SO, now that we're done with that detour, back to fighting cancer...
On 8/27 we traveled up to Fort Worth to Cook Children’s Hospital to get a second opinion on River’s next step in treatment from a Neuroblastoma (NB) specialist, Dr. Megan Granger. It resulted in additional scans requested so mom and River stayed up there for 3 days and returned last Friday night. The plan is to pass his scans around to a few top surgeons nationally and see if any can have a chance at removing some of his tumors.
A part possibly not shared before; about 40% of River’s original tumor still remains, packed tightly in his pelvic region. This being the case, River’s disease now is officially classified as “treatment resistant”; not good sounding, but not the end of the line just yet as overall, he’s still in relatively good health. This translates to him being healthy enough to try more treatments, all of which put his body through hell. Previously we have been following a proven Children’s Ongology Group (COG) protocol, but since there is still remaining tumor, we’re now out on the “frontier” of treatment options, with a goal in mind, but what will work is more loosely defined.
A little side-note about NB tumors, they aren’t necessarily homogeneous as one would think, a single mass can have two different “compositions” if you will, resulting in different characteristics; one of them being reaction to treatment which is what we have seen with River’s where the tumor shrunk 40% after the 2nd round of chemo, but only saw minimal reduction after 4 more rounds (different drugs mind you) and radiation.
A local surgeon’s opinion of tumor removal was that it was “inoperable”, meaning that the tumor couldn’t be removed without dire effects to the patient; in River’s case, losing his colon and/or bladder function. We’re hoping that the surgeons that specialize in NB tumor removals mentioned above will have a better outcome and possibly help us to remove possibly key parts of the tumor, not necessarily all of it.
While we await for additional surgical opinions, and due to the delays from the bacterial infections, the Dr is wanting to start a treatment in the mean-time to not only keep the tumor in check, but also to try to see if a different combination of chemo drugs will hopefully reduce the tumor’s size, in-turn increasing surgical outcomes.
2 weeks of waiting, not something easily done when you know there's still avid tumor :(
We finally heard from Dr. Granger and she is wanting us to take part in a clinical study (ANBL 1221) of a combination of chemo drugs aimed at killing the tumor.
The study that the Dr. wanted River to take part in is actually closed, but the drugs that are involved in it are commercially available so we’re able to proceed with following the methods of the study, just not officially in it. Here’s a link for those interested: https://clinicaltrials.gov/ct2/show/NCT01767194?term=ANBL+1221&rank=1. This being the case, last week ended up being just a doctor’s visit to sign some consent forms and some additional tests (bi-lateral hip aspiration) done prior to our treatment that started last night. Joscelyn and River drove up Sunday afternoon and are now in-patient at Cook Children’s and through 2/5 chemo treatments, antibody should be starting in a few hours. This is a big one, you can read more here (https://en.wikipedia.org/wiki/Antibody) but to sum it up it is VERY pain intensive and is rumored to be one of the toughest treatments to endure. We’re staying at least until Saturday, barring any complications. After 2-3 “cycles” of the treatment, we’re going to have some new imaging done and see if there’s been any reaction to the tumor, and make a decision there on whether to undergo more cycles (up to 5) or try something else.
This treatment begins our first that has us separated as a family; Sparrow and I stayed behind and will be driving up on Wednesday night to start the shift work and give Joscelyn some downtime. Until then it’s a pseudo single-parent mode for both of us as it’s just us and one of the kids; Joscelyn, by far getting the tougher end of the deal as she’s trapped with a soon-to-be-enraged toddler. We have been lucky thus-far to receive all of our treatment here in San Antonio and we are truly thankful to have gotten as far as we have without any major travel involved. Hopefully progress is made and we can keep our treatments in Texas ;)
» Edited on: 2015-09-15 13:57:56