So we managed to make the trek... Julie, the ambulance with Emmah and myself all arriving at different times. Julie the furthest away actually made it first. I left Comer before the ambulance did but managed to arrive after them. I guess I didn't know about the short cut. ;)
Yes, we are here... he platelets have somewhat recovered and are 91... go figure. That is that much closer to 100. The perplexing count for us is her WBC... it's gone from 5.5 yesterday to 9.9 today. Under normal circumstance, I think that it'd be no big deal, but we've never seen that kind of jump. It's still in the normal range 4-13, but it's odd to us that it went up so quickly.
The doc that we are working with here worked along side one of the docs (Dr. Mosse one of the study's chair) over at CHOP. The BMA that was supposed to be today will be tomorrow along with a CT. They will run her through a battery of blood test and a urine test. So pending the results of her work ups and pending her platelet count, the doc is hopeful that we can start her on the trial med on Wednesday. Here's hoping since it's been excruciating to sit here doing nothing these past two weeks but "manage" her pain and even that wasn't done very well. It's been so hard to let each day pass knowing that we are doing nothing at all to arrest any tumor growth.
So far what we understand is that this is a Phase II trial, so we're testing the efficacy of the med. The dose that she is being given is the highest tolerated dose from the phase I trial. Only one pill a day for 7 days then 14 days off to recover... rinse and repeat. Emmah actually will be the first one here at CMH to be doing the Phase II for Neuroblastoma.
Blazin' the trial trail!
We've also talked with the palliative pain management team. It's the doc's belief that they would be better to talk to that just the plain old pain management team. So upon them coming in, they are of the opinion that we need to change up her pain regimen. Right now Emmah is on 7 different meds that are supposed to be managing her pain. The best we can get her to on the current regiment is like an 8 on a scale of 0-10... 10 being the worst. That's not good and that's not managing it. Of the 7 that she's on... five are opioids, one is the anti-depressant and the other is for ADHD. The ADHD med has been found to be effective in neuropathic pain and opioid detoxification. She's getting it for the pain and not the detox. The anti-depressant has an effect on neuropathic pain as well.
So it's the consensus of the team that we simplify (and in my words streamline) her meds. The plan is to add up that opioid total that she's getting and just take one med at an equivalent dose... we will keep up with other two meds. Hopefully changing up some things and getting started on the trial med will lessen the pain load. As of me writing this, they've already started stepping her down... one of their concerns is too much stress on renal function.
Yet again... here's to hoping!
KEIYTAP
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