Day +273: Spoke too soon!

Turns out we didn't need to spend a night in the pole house after all! Mina had her procedures in the early afternoon, then woke up around 4:00 and went across the street to 7 Long. The procedures went just fine. The EN&T doctor said her ear looks great! What he was seeing was some unusual waxy buildup. He said radiation therapy can cause a reduction in the ability to eliminate wax, and he thinks the puffiness in her face is due to the vein blockage. So he took her off the antibiotics effective immediately. Removal of the catheter was uneventful as well. They still weren't sure after that whether she had a clot, stenosis (narrowing) of the vein, or both.

They put Mina Brigitta in her old room, #739, and she was just really settling in when the vascular surgical team came by. They didn't know anything yet, and talked generally about the types of tests they might do to figure out how to make sure the clot dissolved nicely and didn't move. They were going to talk to the radiologist next. A little while later they came back and said they were 99.8% sure there was no clot, so they were recommending Mina be discharged! So Mina and Keri got to come home from the hospital, much to Mina's disappointment. She was fine after she got home of course, but she didn't really want to leave the hospital. We have to monitor her carefully for signs of a clot (her face getting puffier, veins becoming more prominent), but hopefully the stenosis was caused by irritation from the catheter and will soon resolve itself. After spending yesterday and today getting reacquainted with what it's like to be worried about an immediate risk, it's nice to get back to "normal" tonight.

Day +272: Another night in the Pole House

Another new wrinkle has developed in Mina Brigitta's ongoing recovery from her bone marrow transplant. She still has her Hickman central venous catheter, which they use to administer drugs during her every other week appointments. Dr. Horn had been talking more lately about the risks of having a central line, as Mina's need for it grows less. It turns out one of those risks is going to come back to bite us. We'd noticed lately that Mina had some very prominent blood veins between her left shoulder and her chest, and also that it was difficult to draw blood from one of the lumens of her catheter. Dr. Horn was a bit concerned and ordered an ultrasound. It turns out that her subclavian vein is 90% blocked at the junction to the jugular. This is right where the end of her catheter sits. The most likely scenario is that a clot has formed around the end of the catheter, although another possibility is that scar tissue and irritation has simply narrowed the vein. There's a very good article on deep venous thrombosis here: http://www.emedicine.com/emerg/topic122.htm. All the way down at the end is a little section on subclavian vein thrombosis, which is what they think she has.

They're going to pull the catheter tomorrow, but they'll have to watch her very carefully to make sure that the clot doesn't break loose and begin to travel in her bloodstream. I expect they'll use some thrombolytic agents to try to dissolve the clot, and then they'll put her on anticoagulants for several days to prevent any further clotting. The biggest risks are pulmonary embolism from the clot traveling to the lung (http://www.emedicine.com/emerg/topic490.htm), and hemorrhage due to anticoagulants. These risks are serious enough that she will have to be inpatient for at least a day or two.

Mina Brigitta also had an appointment with the ENT doctor today, and he said that whatever is in her ear has not gone away. So she was already scheduled to undergo sedation tomorrow so the ENT doctor can poke around in her ear. They will remove her catheter at the same time and keep her in the outpatient OR until she's ready to be moved across the street to Seven Long. She still isn't acting sick; quite the contrary, she has more energy these days than she's had in a very long time, so hopefully this ear thing is nothing major. But it's another night or three in the hospital, and just was Anta Teri, Nicholas and Kennedy are due to arrive. At least Mina will have good company in the hospital. And hopefully she'll be out at a reasonable hour on Saturday so we can go out and do something to enjoy the day.

They're not planning to replace the catheter at this point, so there won't be any more dressing changes or tube flushing for the foreseeable future. Mina seems OK with it, but I think she'll miss those tubes. She helps me flush them every night, then flushes Waah Baby's tubes and changes her dressing. But it will be a relief for everyone in a way to have them out. The downside is that they'll have to place an IV every two weeks when she comes to clinic for her pentamidine, IVIG and blood draws. Hopefully that won't be going on much longer as her immune system continues to recover.

The really good news we got from today's clinic appointment was that the results of her latest engraftment study came back 100% donor! Everyone was hoping and expecting to see that, since she's 100% since the very first test, but the possibility of relapse is still frighteningly real, and donor chimerism of less than 100% would likely be the first sign. So despite the unwelcome complication, the day's news was positive on the whole.

Day +265: Still dealing with the ear infection

Mina Brigitta went back to the ear, nose & throat doctor today, and he still saw some gunk in her ear after nearly a week of antibiotic eardrops. She's still not acting sick; quite the opposite in fact, she's more energetic than ever. But he's worried enough that he put her back on amoxicillin just in case. We're not too thrilled about that; she gets a c. diff. infection pretty much every time she goes on antibiotics, and her stools have finally been returning to normal. He did cancel the CT for tomorrow, which is kind of a relief because it would have required sedation. But he threatened that if she's not improved next week, they may want to go in through her ear and get a biopsy.

Meanwhile, Keri and I both have scratchy throats and runny noses, so it would be good to get the old stuff cleared away before the next wave hits. Whatever I have appears to be pretty mild, so hopefully it won't cause any major problems.

We're still waiting on the results of the engraftment study, which they drew last week. We need to continue to see that her blood cells are 100% donor, which they've been the three or four previous times they did the study. If her own cells start to come back, they would begin to worry about relapse, and we really don't want to go there.

Saturday is the one-year anniversary of Mina's relapse diagnosis. Mina became ill with flu-like symptoms, so Keri took her in on Thursday the 6th for a routine blood test. Her counts came back abnormally low, so they called us to come in to Seven Long. I will never forget hearing the platelet number and knowing it was way, way too low. The next morning Dr. Loh came by and was reassuring, so that we almost believed it wasn't really happening. She came by again an hour or two later with tears in her eyes, having just looked at the slide of Mina's blood. It's been a long, long road since then, and we still have a long way to go. But this January is passing pretty uneventfully so far, so we have that to be thankful for.

Amber was here tonight -- she hadn't seen the kids in a month due to holiday travels and her work schedule. Her comment was that they're both much bigger than a month ago. She also noted that Mina is no longer a toddler. She's turned the corner and become a little girl. This morning she was playing "car" with Megan, and the game continued after Keri and I got home tonight. She puts the couch cushion on the floor, with the throw pillows set up to make a car seat for Waah Baby. She sits in the front and drives, Waah Baby sits in the middle in her "car seat", and the other person sits in back. She buckles you in carefully in two steps just like a car seat (between the legs and across the chest). Then she drives to the playground where you play for awhile. And then you get back in the car and drive home. It's really fun to watch as her role-playing games become more and more elaborate.

Day +258: a hopefully minor worry

The latest worry about Mina Brigitta is what apperas to be a sinus or ear infection that might be expanding. She has some pus in her ear, and her eyes have been a bit puffy the last few days. It's also true that she's been short on sleep, so that could be contributing to making her eyes look. And she's not feeling badly, not does she have any mucous; on the contrary she seems to have more energy than ever despite the sleep issues this week. So they're not real worried, but they did take an X-ray (inconclusive), order a CT scan (Mina refused to go into the machine, so they have to reschedule it with sedation), and send her to an ear, nose and throat specialist who prescribed some eardrops with antibiotics and steroids. She's supposed to go back in a week, provided she doesn't start acting sick. Hopefully pretty trivial stuff, especially when compared to others like Lily Claire who are still right in the middle of it (Lily Claire has acute Grade IV GVHD of the skin and gut, just like Mina Brigitta did; she's stable, but in a tough position).

Mina Brigitta has been very cute the last weeks. She spends a lot of time taking care of her babies. She lays them down on the couch, the chair, the floor, or wherever, carefully covers them with blankets one by one, and then comes to tell you that "Baby sleeping!" Isaac even gets into the spirit and starts saying "Shhh!" The other night she asked me to wrap her baby. It must have been something about the way I wrapped her, but she looked at it, and then said "Dis Waah Baby Jesus!" Then she wanted me to put her to sleep "On the Hay!" She was so pleased with her new game that she spent the rest of the night talking about "Waah Baby Jesus!" Kari points out that she must have forgotten about the "No crying he makes" part.

She seems to be getting more active physically. She likes to pretend she's jumping. She bends her knees, gets very low, and then "jumps" as high as she can. She still only gets one foot off the floor, but it's a start. Isaac is getting into the spirit of monkey see, monkey do these days, so then he comes over and starts bending way over too. He has no idea what for, but he laughs right along with Sissy. The other day when she just got home from somewhere, I asked her what she wanted to do, and she said "I want to run and play!" It's one of her favorite phrases these days.

Another time she was saying "Bye-bye!" and when I asked her where she was going, she said "Fun! Going to fun!" I told her I thought that sounded like a nice place. Isaac likes to say "Ba-ba!" now too. He doesn't know how to say "All done" yet, but he figured out if he said "Ba-ba!" and waved to his food, it got the message across. He's also saying "Ah-oh" when something falls. And a horse says "Knee", the cow says "Moo" where the vowel sounds like "book", the dog pants, and the cat makes some sort of high-pitched yowling noise. Oh, and many animals say "Rowr!". He also says "Dass!" for yes, and when he says it he always gets a very serious look on his face and nods his head up and down slowly. The other thing he's doing is singing. He carries no tune whatsoever, but when he walks around making high-pitched noises in a certain way, we're pretty convinced he's trying to sing. He is one funny kid.

The other story I forgot to tell last time was that Mina and Isaac got a little wooden zoo for Christmas, with a little centerhouse and pens that you can build for the animals. It's very cute, and they'll enjoy it more and more as they older. But Mina looked at it and said "What's a zoo?" So during the next clinic appointment Keri asked if the zoo was OK, and they said yes! So I took them to the SF zoo between Christmas and New Year's. We saw the giraffes and tigers and lions and gorillas, and stopped and glanced at some other animals like hippos and gibbons along the way. But the highlight for Mina Brigitta was climbing on some very realistic-looking brass lion statues. They had a great time, and the zoo is quite close to our house, so it will be nice to have another option to entertain the kids

Day +250: Lots of energy!

I just realized when I was figuring out the day number how long it's been since I blogged. Sorry about that. There really hasn't been much news. We had a very nice New Year's at Rich, Olgica and Niko's house, then spent the night and had lunch at an Indian restaurant the next day (Mina filled up on rice and bread, but didn't touch any of the spicy stuff!). The kids finally finished opening their presents a couple of days ago. They opened about one or two a day starting on Christmas Day. The last one we were saving was the trike from Grandma and Grandpa. Mina was so excited she was whispering "Bike! Trike! Bike! Trike!" while laying in bed that night. Keri asked if she wanted to call Grandma and Grandpa to say thank you. So Mina got up and we left a message on their answering machine. Unfortunately, I haven't had time to assemble it yet. I guess that's what weekends are for.

Mina Brigitta's health seems to be getting better all the time. She's still having some diahrrea, which is a bit worrisome, but she sure has a lot of energy these days! Both kids do, really. They run around the house squealing and giggling, and we're having a really hard time getting them into bed at a reasonable hour. It's such fun to see Mina in this state. It's been a long time coming, but she's really beginning to seem like herself again. The happy, carefree, giggly self, not the somber, quiet, serious person she was during the summer and fall. We're also noticing that some color is starting to come back into her cheeks. She's been kind of a strange, gray color for months and months, due partly to low red blood counts and partly to hyperpigmentation from the horrible skin rash she had in June. Tonight she was sitting in the bath when I came home, and with her wet, straight hair and rosy cheeks, she almost looked like she did last spring. I actually did a double take.

It's coming up on a nervous time of the year for us. Mina Brigitta was first diagnosed with acute myelogenous leukemia on January 7, 2004, and her relapse was diagnosed on January 21, 2005. We're obviously hoping that this January goes a little differently.