T+18: Back Home

We're home now. Richie is actually doing better than I am this morning and slept better last night. He got up early this morning and started the van...it sprung to life as if it hadn't been sitting for 3 !/2 weeks.

He seems none the worse for the less sanitary conditions here.

He will still have to deal with having a "baby immune system" for the next few months. Eventually he'll need to be revaccinated, and I am going to have to get all my adult shots as if I was going overseas. Ouch.

Anyway, I'm not a morning person, I still feel tired, so I'm going back to bed. Once I get up for good, I've got a lot to do.

T+16 and T+17: three to get ready...

If you didn't get it, the last entry's subject line was a reference to the song "I Shall Be Released." And today, theoretically, is indeed the day Richie should be released from CoH. Dr. Forman confirmed it, and so have several other staff in the hospital, who have been dropping by and giving their best wishes.

Of course, it could be delayed for another day. If it is we're all screwed, because neither Richie nor I have extra clothes and I only brought enough meds for last night. Tim Snyder will be picking Richie up at 4pm. I suppose if he comes out for nothing it wouldn't be that bad...he only lives a few minutes away from here. I will also run out of cash (not money, thankfully) if I have to stay here another night.

The sticking point is the Hickman catheter. It's coming out before Richie leaves. With the staph issue it's a must.

So, keeping fingers crossed. Richie is rarin' to leave here. So am I. In fact, if it looks like there will be a delay I will have to leave, Richie or no Richie.

The waiting is the hardest part.

T+14 and T+15: Any day now, any day now...

So Richie now has his release date: Thursday.

The Hickman Catheter will be removed before that. If there will be a need for maintenance chemo, Richie will get another PICC line. The fact that the Hickman leads directly into the heart, and that he got a mild dose of staph infection at the entry site, suggests that for safety's sake the catheter has got to go. And this is not staph you can get from the outside: it's one of those nasty hospital strains. This suggests that, even though our house is a bit cluttered and not a showplace cleanliness-wise, we were able to keep Richie's vein access devices (VADs) nice and sanitary.

I don't have numbers now, but according to Dr. Forman he's pleased with Richie's progress.

By necessity, I'm playing hookey from College today and Thursday. I will have to go to CoH on Wednesday so that I can be there and help on Thursday.

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+11 and T+12: off the air for a while

Patient network difficulties made it impossible to post for about a 24-hour period. However, the news that's been awaiting the restoration of the network access is good: Richie's white blood cell count is now in normal range. Thursday he was at 0.2, Friday he was at 2.9, and now he's at 6.6. Normal is between 4 and 11.

The last thing he needs to do is to get back the ability to eat real food again. He has been being maintained on what can only be described as an intravenous "formula" which includes amino acids, vitamins, minerals, dextrose and electrolytes. He's eaten some things, but he's not been eating 3 normal-sized meals or six small but substantial meals. He must get to that point before he can be discharged, no matter what his white blood cell count says.

Yesterday was his birthday. I owe him dinner at Coco's. Now that he's 55 years old, he can order from the Senior menu. w00t.

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.

Still T+7, with news of keyboard arrival and improvement in Richie's status...

The keyboard arrived at exactly 1pm. It's in good shape, it's got 61 working keys, it has a great sampled piano sound, a fully General MIDI compliant sound set plus a bunch of extra sounds. This freed me up to get out to the local Mart Of Evil (it's within walking distance and Target is not, and besides Target is almost as bad with jawboning suppliers and mistreating employees as Wally*World is) to grab a few items that were needed.

The next time I stay at the City of Hope, I will sleep on an air bed instead of the torture device masquerading as a fold out chair bed. Richie will have all the underwear he needs for the rest of his stay. I now have a new soapy brush to wash dishes with...the one I was using was in bad shape and prolly loaded with bacteria.

I had better get some sleep. Tomorrow's a big day at school.