3 down 2 to go

Andrew is HOME!!! We are really happy to be home as a family again. Kind of funny though, we set Andrew on the carpet and he didn't know what to think of it. He just stayed there on his hands and knees but would lift one hand up all the time. When the arm supporting him got tired, he would switch arms and keep the other one in the air. On another note, an interview about Andrew should be on KSL's PCMC radiothon.

Whoa, move over chemo, time for some Rhinovirusing

So Andrew's amazingly explosive diarrhea has become a thing of the past, replaced with a watery running nose, itchy red eyes, and a little man who refuses to nap. We put a swabby up his nose to see what was causing his symptoms, and it turns out it's a rhinovirus. Whew! Man, if you had to make me choose a virus to give Andrew at this point, Rhino would be one of my top picks. If I remember right from virology, it causes about 50% of colds and lives in your nose because your body temp is too hot for it, hence the "rhino."

It's been a rough week overall, just because the solution to everything for Andrew is mama. He wants to be held all the time, although it's gotten better in the last 24 hours. Makes it hard to get out at all, and I've found myself staying up late talking to people in the unit for some social interaction. Stew has been so helpful when I need him most (very late at night), holding Andrew until he falls into a deep sleep. I didn't realize how tired I was until Stew told me that a few nights ago that he was half-shouting at me right above my head asking if he thought we should give Andrew some oxycodone, and I didn't respond.

One of my more social/outgoing activities lately was going to give blood at ARUP. I didn't realize this, but they are the sole provider of blood for a bunch of hospitals up here, including Primary's. My crit barely passed at 38, though. Compared to Andrew, though, that's pretty high.

I've been meaning to donate blood for a while now. I'm keeping a faithful tally, with 4 more transfusions to add to the total this round (two RBC, two platelet). The platelet one on Friday was a bad one, though. His blood type is B+ and they only had AB+ platelets, which is what they gave him. I'm going to insist they match next time though (even though they don't have to), because I think since it's only leuko-reduced that the contaminating red cells of that AB donor were what gave him this huge nasty rash on Friday that had him screaming for hours. Doesn't matter if it's irradiated--if it has red cells in there, the antigen will still be there. I really should have known better--I just wasn't thinking. No fun, but I've learned my lesson.

Anyway, Andrew's still zeroed out for neutrophils, so as long as you're over 14, you wear a mask, and haven't been sick for 2 weeks or around anyone who's been sick for at least a week, you can come visit. I have so many people to thank for calls, visits, dinner, etc., even though it's been 4 months since Andrew was diagnosed with cancer, you're all still going strong! The speaker up here on Sunday talked about how important it is to be grateful, especially when you're having a rough time. I think that's probably hard for conventional wisdom to understand, but I really feel like it's true. We're really so grateful for the support, everyone, so thanks!

More on Andrew

Things are getting a lot better! Andrew's fever has been controllable because he's been able to keep down some Tylenol (the FDA only recently approved intravenous tylenol, and it hasn't been incorporated by Primary's yet), and his TPN kicked in late last night, so instead of being floppy like a newborn, he's been starting to fidget and even play with toys again. He spent most of yesterday sleeping or being held, and today he's still been sleeping for most of the day. They have yet to tell me what organism is causing the watery diarrhea and vomiting, but we can cross off C. diff, rotavirus, and norwalk off the list (apparently Norwalk has been making the rounds).

They have him on vancomycin, flagyl, and zosyn to cover their bases. It is quite likely that it's just the chemotherapy that has irritated/damaged the lining of his intenstines either causing his villi to slough off a bit or to release fluid. They are a bit puzzled that we haven't seen these symptoms before, as there were no new chemotherapeutics this round. My opinion of the matter is that it was just the concentration of the chemo that has been hitting him hard--after all, he's been throwing up for a week now. Although he has nasty GI symptoms, the good news is that the GI tract is one of the quickest places for healing in the body.

Andrew's taken a few sips of milk here and there, for which I am very grateful. I'm definitely breathing much easier as the PICU is becoming less and less likely of a possibility.

quick update

Andrew has been sick the last few days. Today he got much worse. He had a high fever all day and he hasn't had any food stay down for a few days. As a result he was receiving total parenteral nutrition (TPN), lots of fluids, and some heavy antibiotics. Anyway, tonight between 9pm and 10pm his fever started to go down a more normal temperature. We just hope that it stays down and he begins to eat again.

Round 3... bleah!

I decided I should take some time to write while I got the chance. I've been really busy lately holding Andrew for most of the day. He's definitely feeling pretty terrible and wants to be held. We got moved from the closet room in 4425 to 4424, which is much more private and has a window, yay!

I was really worried about the ARA-C this round. Last round, it made him get these nasty rashes on his face, trunk, arms and legs, and since the dose is tenfold higher, I assumed he would turn into a beet. He actually hasn't really gotten that red, so I've been very thankful. Older kids in here will talk about how it burns and itches a lot, so I'm glad it's at least better than last time. However, the Etoposide (VP-16) has lowered his blood pressure, so he's gotten a few boluses (boli?) of saline to try to raise it.

Andrew has had a really hard time keeping anything down. He's been throwing up or gagging for much of the morning. He's only kept down a few gulps of milk before he's gone to sleep, but anyway... better go brush my teeth before he wakes up.

Aspirate & LP Results

Last Thursday we headed back up to Primary's to have a bone marrow aspirate and a lumbar puncture to check for leukemia cells in his marrow. They gave him some ARA-C in his spine because often when the leukemia relapses, the spine is the place it comes back. They just called us to tell us his marrow is clear, so that is fantastic! Although it is rare for a relapse to occur between rounds, it is certainly possible, and they need to change tactics if the cancer is taking a more aggressive turn.

This was the third time I went to the RTU (rapid treatment unit) with Andrew for an aspirate. I was pretty used to the protocol by now that I would bring Andrew into the room for the surgery, and be with him when they put him under. They gassed him the first time, used Remifentanil through his broviac line the second time, and used Remi again this last time. He was fighting it, so I stayed a bit longer than the last time to try to keep him from rolling off the table. The nurse said she would take over, so I left as usual. Apparently, only moments after I left, he started having a reaction to the Remifentanil that made his chest wall muscles become so rigid he couldn't breathe. They told me his oxygen dipped, so they had to intubate him until the drug had metabolized, then his muscles relaxed and they took him off the oxygen. They told me if he had become more rigid, they would have given him a paralytic and kept him intubated. Apparently you can develop a sort of resistance to these drugs so that you'll need more of the drug to have the same sedative effect, but the amount they used on Andrew was too much for him. Muscle rigidity is a known side effect of this drug to everyone when administered at high levels, but now along with morphine and codeine derivatives, we'll have to cross the fentanyl family off the list. This is not a great thing because it's a pretty big family of drugs.

I am glad for the protocol the doctors used in this situation--first, that they didn't have me in the room during the procedure even though it is routine, because I would have totally panicked. Secondly, I'm so glad the anesthesiologist took me in the room where Andrew was before he started telling me everything so I could see he was okay instead of panicking, wondering if he was really okay. I was only half listening to what he was saying anyway, and I wouldn't have listened any better outside the room.

This was a not-so-gentle reminder to me of the seriousness of Andrew's condition. That if just one little thing goes amiss, it can have life-threatening consequences. I know Andrew is a whole heck of a lot less maintenance for me than some other kids in the ICS, but I just hope I don't do something stupid like forget to ethanol his lines when I flush them, or forget to give him his oral meds, or get him around someone who's sick, or just something that will land us in the PICU.

Anyway.... It turns out he's still on track for his height, but he's dropped a few percentiles in weight. It is true his appetite hasn't been up to par this last round, and I know it'll only get harder, but we're just grateful he hasn't lost weight so far. He's been holding strong at around 18 pounds, so our job is to fatten him up as much as we can over the weekend before he starts chemo on Monday.

Chuggin

The time at home has been absolutely phenomenal! I forget every time just how much better it is at home. No one's walking in on you when you're breastfeeding, no vitals every four hours, no weighing every diaper. And I am LOVING the sleep! When we're at the hospital, I get up with him 4+ times a night because vitals wake him up, while at home, it's usually just once a night. I am going to miss the sleep! I also just miss hanging out with Stew every night. We get to be together at home--every night.

We will probably be back in on Monday. When we went home last Monday, his ANC was 100, on Thursday it was 200, and this last Monday it was 300, so we thought he would have the same exact pattern as the last time. Not so! Today it doubled to 600, so they decided to keep the aspirate and lumbar puncture they had scheduled for tomorrow (this also includes a chemo injection in his spine). This will likely mean we'll be readmitted next Monday if he keeps it up.

Also, we're scheduled for an MRI on his eye and an ultrasound on his testicles on Monday. I'm not thrilled about the MRI, not only because he has to be NPO (no food or water) for so long, but because the barbituates they gave him to sedate him last time made him panicky. I was hoping they'd schedule it at the same time he was under anaesthesia in the RTU for the LP and aspirate (on the same floor, just a few hallways over), but they say they the nurses can't move between units. I'm not loving all this anaesthesia, but oh well. I don't make the rules.

We're so grateful he's not been so slow coming up! We've also been so glad he hasn't gotten any sort of infection that has landed us back at the hospital, or in the PICU. He's been fussy after the chemo this last round--just a general unhappy sounding kid, unless he's distracted. We're pretty sure he just doesn't feel great when his counts are low, but neither does anyone else in the ICS. But, he's been consolable and distractible almost all of the time. So much to be thankful for!

Andrew when he was much younger. It's amazing to think he will someday grow hair like this.