M-spike is down and staying down!

The M-spike is the specific marker for multiple myeloma. It is secreted by mutant plasma cells, and Richie's initial value was close to 9.0. Once the initial Velcade/Doxil/Dextamethasone treatments were given, the M-spike dropped first to around 3.5, then to 1.5, then down below 1.0 to where it's pretty much been since June. In December, the M-spike was down to a point where it's referred to as being a "trace band" where the actual value is so low it cannot be reliably measured. Basically the take home message is that the myeloma has been knocked down to molecular remission. It's still there...cowering in the shadows, waiting for a moment when Richie weakens and it can pounce. But it has been effectively beaten down to the point where it is at a standstill. On the 10th it will be four months since the transplant. Awesome.

Survivor day: 12/26/2007

This is the anniversary of when Richie was diagnosed with multiple myeloma. Richie is doing fine...yesterday we took a walk between our house and about 2/3 of the way to the hospital at which Richie was diagnosed, and I was more winded than he was.

Two more of our friends were diagnosed with cancer recently. One has a blood cancer that's basically a kissing cousin of what Richie has, the other has prostate cancer which I lost an uncle to a few years ago.

I know that Richie isn't out of the woods...it was explained to us that the only way to know that you have beaten multiple myeloma is to die of unrelated causes. Sort of like what happened to Peter Boyle...he died of a heart attack unrelated to his myeloma. However, we are quite hopeful for the future. Things aren't perfect: there are limitations we'd like to learn to work around right now. The maintenance meds that Richie's on need tuning, which is something to be expected considering that it's a new regimen.

It is likely we will not be updating this site in a while, but every now and again I'll post some bits about Richie's progress. Also there's the album recorded at the benefit gig...it'll come out. Eventually.

T+13: too much!

OK, so maybe the Neupogen worked a little too well. On the 13th day after transplant, Richie's white blood cell count is now at 13. Remember I mentioned that normal is between 4 and 11? Other good stuff: platelets and red blood cells are in normal territory for the first time.

The last hurdle before we take Richie home is eating. Richie needs to be able to eat well before they let him go. He will not be taking home the big bag of IV formula. This is easier said than done because Richie's throat and other mucous membranes are still inflamed and peppered with sores...the sores are healing but they're still there. It is likely that a six or seven mini-meal approach will be better for him than three squares.

I'm going home this afternoon...I have tons of stuff to do between Monday and Thursday. However, everything changes when Richie needs to go home. I might have to take an absence that day if it happens on a school day. Hoping for 8 hours of sleep and a nice shower. I was able to shower in the Village on Saturday and back at home on Friday, but this morning I'm feeling the need for another one.

T+10: Back at CoH

Richie has been through the Nadir point and hopefully is coming out the other side. His white blood cell count, although not normal, is on its way up. He's still having problems with mucous tissue inflammation and with a few mouth sores, but those are healing up. He's certainly better than he was when last I wrote here...sorry about being remiss about keeping up the updates.

Tomorrow is Richie's birthday. We are both confident there will be many more to come. It's 10 days past his "second birthday" as some people with multiple myeloma refer to the day they get their stem cells back in an SCT. While we won't go so far as to say this is like being reborn, (after all he was born right the first time!) this is definitely a turning point.

I have to go back to the Valley tomorrow to grab a few things I forgot (3 hours there, 3 hours back, oy gevalt...) but I intend to be back later in the day and spend the rest of his birthday with him.

I wonder if I can get him cake. Or something. He has the keyboard, at least, and that delighted him...thanks Tom. Thanks also to Bruce for visiting and bringing a few CDs for Richie's listening pleasure. Thanks to all who have been calling and emailing and generally rooting for him. We appreciate it. A lot.

T+3

Richie sounds really good today. He slept a lot, but after staying up all night with the hiccups some good sleep is just what the doctor ordered. They found something that worked to suppress the hiccup reflex, so sleep came easy for him.

Before I called him this evening he was up and around...he walked three times around the wing of the hospital.

Tomorrow I go to Duarte. I want to get out of here as early as possible. Gotta drop by the ATM, then it's time to grab the bus out. It takes me three buses -- one is a dedicated busway and so it's more like light rail -- a subway and one real light rail line to get there, and it takes something like 3 hours time-wise. But it's doable. Difficult but not impossible.

Off and on, I'm spending the weekend there. I will go out to Downtown for the Wired Next Fest and a LinuxChix LA meeting on Saturday, but I will get back to Duarte after that. Hopefully I won't get stuck in Pasadena...eep...