Today we got the results that the blood cultures from yesterday’s blood draw from the new lines were negative for infection. That’s a good sign, but we’re hoping for three negatives in a row. That’s when they call it official. He’ll still be on the antibiotic until January 28th, but hopefully the infection was in the old line that is now gone.
Last night around 8pm, Dr. Kushner stopped by to see Eli because he heard that he had his line pulled. I asked if he was on rounds and he said, “No, I just wanted to see how he was doing since I heard his line got pulled.” That gave me the opportunity to chat with him about Eli’s counts (unfortunately they are STILL at 0.1), his central line options, and the next steps after his scans.
Regarding the port vs. central line, Dr. Kushner tended to agree that we are probably done with stem cell harvests and a port might be the right answer once this temporary line has lived out its 6-8 weeks.
Regarding his counts, he said that Eli is on “day 23” (which is calculated from the first day of chemo) and that some kids actually go 30 days before their counts start to rise. It’s usually between 20-30 days on average. So he wasn’t overly concerned. The other Neuroblastoma doctor, however, came in today and said, “I think we need to start getting a little concerned. We’re going to talk on Monday with the team about possibly using some of the stem cells we harvested and doing a stem cell rescue.” So, who knows what we’ll be doing. Obviously it would be great if his counts started to come up on his own and we didn’t have to do that, but it’s also great that we have the option of using those stem cells we harvested here.
Regarding his scans the week of the 28th, I asked Dr. Kushner if we were going to use those results to determine whether to do another round of chemo or start 3F8. He surprised me a bit with his answer when he said, “No, I don’t think so. I think we’re ready to start 3F8. He has seen a lot of high dose chemo and he suffered through a lot of hemorrhagic cystitis with the last several rounds (not this last round actually), so I think we can say that we have done what we can with chemo and it’s time to throw something new at it.” I was actually happy with that comment because I tend to agree that we’ve really blasted him with 7 rounds of good chemo and if it’s still hanging around, we need to show it something new. The options still on the table as far as I’m concerned are 3F8, Radiation, and MIBG therapy. I won’t go into all of those now, but once we start definitively talking about what we’re going to do, I’ll let you guys in on more of the details of what it entails. I’m sure you can Google those options if you really want to know more now. 🙂
For those curious, our new roommate that moved in an hour after the other family moved out is also fantastic. We feel blessed to have had great roommates these last 2 rounds. His name is Charles and he isn’t too much younger than I am! He is a 23 year old with Ewing sarcoma and his last roommate’s name was Eli, too. Ewing sarcoma is a rare soft tissue tumor that usually hits kids under 18. The rule at Sloan is this: No matter how old you are, if you get a childhood cancer, you can be treated on the Pediatrics floor. Most people chose to be treated by Pediatrics, because frankly the care is so much better. I’ve literally seen a 40 year old being treated in the Pediatric Day Hospital. Anyway, the doctor who basically wrote the book on Ewing sarcoma is doing Charles’s surgery next week. Charles is recovering from chemo that has been shrinking the tumor on his shoulder and he’s at 0.1 WBC and neutropenic just like Eli. He’s definitely not as ornery with the nurses, though.
Tonight Eli hung a bat on his IV pole and hid a snake under his covers to scare away the nurses so they wouldn’t touch him. I guess he figured that growling at them whenever they entered the room wasn’t working well enough. 🙂
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