Feb Update

little disclaimer...I am sick and have not edited this. I think I ramble...(no surprise)

Brian went to Nemours yesterday for his regular monthly infusion. He is still taking his oral meds daily. Yesterday we were able to see Brian's regular Hemotologist/Oncologist. We discussed our concerns with him about Brian's symptoms and our fear that the oral meds Brian is currently taking are not quite enough to keep symptoms away. We know that Vinblastine and steroids work for Brian so we discussed going back to those meds. Returning to that specific drug and steroid combination could happen a few different ways. We could either do another initial six weeks of weekly infusion and daily steroids followed by the "pulse" of every three weeks of chemo with the following five days of steroids (Exactly like round one of chemo. That was effective at treating the symptoms but didn't quite "kick it". Perhaps a year of treatment verses seven months would work.) Or we could go straight to the pulse. Our other option is to continue with the 6mp (Mercaptopurine) and Methatrexate that we give Brian orally at home with his once a month infusion at the clinic.
   Right now we are waiting one more month to see if Brian's symptoms go away, get worse or remain the same. We (well, really the doctor...) will decided after the March appointment what route we will go. Obviously the most convenient treatment for Brian and our family is to have him go once a month to the clinic. Plus his energy level and behavior is very normal while on the drugs he is currently taking. It makes me sad to think about going back to weekly chemo at the clinic with steroids. Brian becomes a fixture on the couch. He sleeps ALOT and doesn't have energy to do anything. AT ALL. However, both Fred and I have said it before, we want to take care of this now. Brian prays every day to have "no more chemo when I am 5".  We would rather have a year of "the bad" then keep revisiting chemo drug combinations every year because of recurrence. Brian really wants his port out because he knows that no port means no more chemo. Having the first one removed only to have a second one put back in five months later was TOUGH. Brian sobbed. We sobbed. It was really a blow. Now, Fred and I don't want to make the decision to remove the second one until we know that the meds Brian is taking have done their job. While there is no 100% guarantee, we will be more cautious this second go around. Brian would not deal well with having a third port put in. Anyway, I digress. I guess I am just putting all the thoughts that are swirling around in my head out there. We are kinda thinking that we would rather be more aggressive and prayerfully have Brian's port out by five or very soon thereafter. If we stick with the drugs we are using now the port removal is a possibility, but we are hesitant to take it out given Brian's current symptoms. If he moves back to Vinblastine he will not be having his port out as that is how they administer that drug. Anyway...
    Please pray that God would give the doctor wisdom and that we would have a peace about what route to take. Obviously we just want to be DONE with chemo, ports and hospitals.
  Just another peak into some hospital drama. When I took Brian to the ER on Jan 18 Fred was in Atlanta for work. I called him crying saying they were going to admit us because of Brian's fever and he was neutropenic. (As I had been told by the nurse attending to us.) The nurse came back in the room and said, "You are lucky, Mama, your doctor said you could go home and follow up in the morning. I had all your admissions paper work ready." So, yesterday at our appointment the doctor was going over Brian's labs from the ER and said his counts were low, but he wasn't neutropenic. I immediately told him what the nurse said, etc.. Come to find out according to adult patients Brian's counts were neutropenic, but for a child he was OK. You would think that the Pediatric ER nurse would be all over that, but apparently she didn't remember the difference between child/adult numbers. Our Hem/Onc nurse said she was not surprised and gave us the speech to give during any future ER visits. Our nurse also told me what size needle we use to access Brian's port b/c the ER nurse wasn't sure. Before accessing Brian in the ER the nurse asked me what size to get and came in and out of the room about five times looking at her tray and coming back with something new. She ended up using too large of a needle. It left a mark. It kinda looks like a hole in an ear after you've taken an earring out and let it grow back together.  And people wander why we are skiddish about taking Brian away from his doctor. We can't even leave the fifth floor of the same hospital without some sort of drama. He's four. Keeping things predictable and the same makes a huge difference in how he responds to the visit.