Today's counts: Platelets ~ 75, Hematocrit ~ 38, ANC ~ 238, Weight ~ 13.7
His ANC went up, again. He and I slept late today, woke up at 9:00 to a rap on the door, signaling rounds. Yikes! I really don't like reporting for rounds when I've just woken up. The way rounds work is that the team assembles outside the door and Gregory's stats are recounted by various members of the team. We then discuss what needs to take place for the day. Upon completion of this, Gregory gets a physical examination from the Attending and the PA. Questions are asked and answered, at this time, too. Today I asked The Big Question. It was a two word question. Remission? Cure? While I've made my peace with what I knew the answer to be, I have been looking for language. I needed the correct phrasing to have a conversation about this. Erica & Niki: I am so deeply sorry to open this wound.
Gregory's leukemia will never be considered in Remission or Cured. We received the results from his Flow Cytymetry testing. Here's the key phrase: "There is no evidence of abnormal cells." That is what we have to hang our hat on. There is not a magic number of years that we can count down to and consider Gregory "Cured". While the chances of his disease returning will diminish year to year, it will always be at risk of returning. Gregory is also unique in his Bone Marrow Transplant experience. He entered transplant with his disease still presenting itself. I haven't quite examined this, yet, so I can't really explain it. From what I can gather, he is as a higher risk because the JMML was still active at the beginning of conditioning (chemo). I bring this up simply because I'm sure it is on the question on everyone's mind. This doesn't mean that the JMML will return, it just means that it can and we need to be at peace with this knowledge. How do you do that? Let me know when you find out. I may appear all tough on the outside, but my head and heart are struggling with this one. The only way I can get myself around it is to make this really stupid analogy: Anyone that I know could walk out of their house tomorrow and suffer some tragic demise. The only difference here is that we KNOW it is there. I also know all about Late Effects. I'll address them, when/if we get there. Not now. Thank you, very much.
Shortly after rounds today, Gregory had to use the bathroom and was in pain when he urinated. Bend-at-the-waist-and-cry pain. Which meant that every time he tried to empty his bladder, the pain would begin and he would stop peeing. We have been making trips to the toilet every 15-45 minutes, with tears and pain, everytime. We did a UA and it came back negative. He does have protien in his urine. We collected another urine sample and it was sent out to be tested for BK Virus, which is a Polyomavirus. I have yet to discuss this with the team, so I don't have much information regarding treatment and such. He does have Pyridine prescribed, which is suppose to numb the bladder. He has had two doses and it's not working. He just recently started complaining of back pain, too. Which tells me the kidneys are now involved. Once again, we will have more information, tomorrow, post urine testing and his blood draw. Needless to say, he and I will not get a restful sleep, tonight. At least we did last night!
His nG tube feeds are continuing to be increased. We started his Prednisone taper. His TPN should be discontinued soon, too. Only because he is getting his vitamins and nutrients through his nG from the Peptamen Junior. It does mean that his "regular" fluids will increase. His TPN also had his fluid needs, they will need to be made up.
I had a rather sweet surprise, today. Fish Taco's!!!!! Thom L, who I haven't seen since Junior High, very generously brought me food from the outside. Thank you, thank you!! I'm still determined to get together for a fermented beverage!
Callie~~ Thank you so much for including AnnMarie!!!! She had a ball. Happy Birth Day, Mama and best wishes to Emily!
Lena ~ You'll make it when you can. I get it. Love you!
Jenny Y ~ Thank you so much for reaching out. All of your suggestions were awesome. If I need anything, I'll keep you in mind!
Every few weeks, I've been calling our Oncology Coordinator back HomeHome, Jennifer. I called today, left a message and I received a return phone call from Dr Reynolds, himself. I can't tell you how it warmed my heart to hear that man's voice on the other end of the line. Jennifer and I haven't had a chance to catch up, yet, but it sure was great to speak with The Man, himself.
There is also a little something-something, really great, THING brewing. I'm not sayin' what. I don't want to jinx it. Know this: Heather in Canada? I hope the pieces come together.
I love you all. 'til later, gotta jet.
Larry. I'm terribly proud.
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