D+44: [This space for sale on eBay]

WBC 1.7
ANC ~1200 (nurse did not provide specific count)

Ryan's kidneys are roaring back into action. His creatinine this afternoon was 0.4 and his BUN was 40. Major, major improvement. The creatinine is basically normal now, so we just need that BUN to come down a bit. The increased fluid intake is obviously helping and it doesn't appear to be causing significant problems in other areas (e.g. lungs, heart).

The GVHD seems to be getting a little worse. It's actually easier to see that happen when you know that you'll be back on cyclosporine soon. The doctors are not surprised by this development and they're confident that it can be kept under control.

We continue to wean Ryan off of the morphine and ativan. Dr. A actually withdrew the regular doses of ativan and wrote the Rx for "as needed." So it's up to us to administer (rather ask for it to be administered) when Ryan needs it. We need to be really careful here, because it looks like Ryan may be showing signs of pain/agitation again. It looks like urination is becoming more painful, and since he does it about 50 times a day, we can assume that this puts him in constant discomfort.

Chery is doing a great job of advocating for Ryan. There is a medication called pyridium that is specifically targeted at urinary tract pain. Up until now, the pharmacy has said that they can't provide it in a form that Ryan can take (something other than a pill). Well, Cheryl refused to take 'no' for an answer and Ryan's first dose of pyridium will arrive this evening.

Ryan's WBC went up to 2.7 this afternoon. What's really interesting about that is one of the medications he is on, ganciclovir, is notorious for suppressing bone marrow function. Yet, Ryan's counts have been growing faster than ever before while he's on the stuff. Go figure.

They finally got around to Ryan's CT scan in the late afternoon. Nothing major to report, which is a good thing. The gunk in Ryan's lungs has moved, indicating that the respiratory therapy is working to dislodge it from his lungs. A few deep coughs from Ryan and that stuff is going to shoot right out. Yum! Everything else was normal, including the normal (read: huge) quantity of poop sitting in his intestines. Cheryl is trying to time it so that all of it comes out on my shift over the weekend.

D+42: Change in weather?

WBC 1.5
ANC 945

The news over the weekend pretty much sucked. Luckily, today provided some relief on a number of fronts.

First, Ryan's temperature returned to normal this morning. He had a fever all night long, which persisted despite a very large dose of steroids (anti-inflammatory) and regular doses of Tylenol. I was pretty scared at first, because Ryan's fever persisted for about 5 hours after receiving the steroids. The doctor warned me that it could take 6-12 hours to have an impact, and sure enough, the fever began to drop in the 7th hour. It's good to see normal temperatures again, but we probably aren't addressing the source of the problem (e.g. infection), just the symptoms. If the fever is related to GVHD, then the steroids will actually address the underlying problem to a certain extent. However, we really need to get back on the cyclosporine ASAP.

With all the increased fluids, Ryan is giving us a lot of 'output'. We want to see urine, since that indicates his kidneys are working (and hopefully healing). We do not want to see diarrhea, which can dehydrate you in no time flat (the opposite of our goal with the kidneys). Dr. A told us about a teenage patient that lost 6 liters of fluid in an hour. He said that if the kid was not in the hospital when that happened, the dehydration would have certainly killed him. So, this is not something we want to mess around with. Ryan is receiving some drugs which discourage fluid from entering his intestines and the resulting diarrhea. It seems like Ryan is urinating more and pooping less, so that's a very good thing. Hopefully, he can keep it up.

On the GVHD front, Dr. G feels pretty confident that we can keep it in check for the immediate future. They are basically throwing every drug they can at Ryan that doesn't affect renal function. It appears to be working; Ryan's rash is receding a bit.

In other news, we changed rooms today. Apparently, the hospital has a policy that a room must undergo a full-clean if it has been occupied by the same patient for more that 30 days. So I guess it makes sense that on Day 54 of our stay in the hospital they actually get around to doing it. It actually worked out in our favor, because we are now in one of the 'kids' rooms. The theme is 101 dalmatians and the color scheme is yellow and green (huh?).

D+40 & D41: Pick your poison

Day 40:

WBC 1.0
ANC 760

Day 41:

WBC 1.5
ANC 1005

Last Saturday, Cheryl and I met with Dr. Graham to discuss weaning Ryan off of the pain meds so we could get out of the hospital. At that point, it looked like we might be out in 2 weeks. This Saturday, we have a completely different picture. A number of things have been gaining momentum over the past 4-5 days:

* Worsening rash
* Persistent fever that seems to be getting higher
* Creatinine and BUN levels increasing

It's clear now that the first two are the result of acute GVHD. The creatinine and BUN measure kidney function, so increasing levels indicate that Ryan's kidneys having trouble. The kidney issues aren't a huge surprise, because Ryan is on a ton of nephrotoxic drugs right now. Last time this happened, we just pulled back on all of the drugs that affected renal function and waited for Ryan's kidneys to fix themselves. We are following a similar path this time around, but his kidneys are not cooperating. On the plus side, the levels are not getting worse -- his creatinine topped out at 0.9 the other day and has stayed in that range (0.7 - 0.9) ever since. The problem is that they aren't getting better either.

The kidney function issues take on a whole new significance when you consider that we can't give him Cyclosporine during this time. Cyclosporine is the standard (and most effective) treatment for GVHD, so each day off of it means that the GVH can get worse. Frustration abounds. The docs are going to try and increase Ryan's fluids to alleviate some of the burden on his kidneys. Everything we do seems to have positive and negative consequences, and the fluid increase is no different. Additional fluid will help the kidneys, but could harm his lungs and heart which are prone to fluid accumulation.

There are no easy choices here.

D39: Little Buddha

WBC 1.1
ANC 858

Ryan woke up this morning with an enormous belly. He has experienced a little abdominal distention in the past, but this was a full 26" of gut busting pressure. Cheryl said that it looked like her stomach at full-term pregnancy. It seemed unlikely that Ryan was 9 months pregnant, so the doctor considered some other alternatives. They decided to do a CT scan to get a good look at Ryan's organs (kidneys, lungs, and bladder in particular). Initial results from the CT were normal, so we're not looking at any major issues right now. They did find some 'gunk' in his lungs, so the doctor ordered respiratory therapy 3x day for the next couple of weeks. Ordinarily, they force kids to march around the halls to clear out their lungs. That's not really an option for Ryan at this point, so they need to find other ways to stimulate his respiration. Oh ... the source of the abdominal distention? Poop! Would you expect any other answer in this blog?

Ryan's fever has been hanging around now. They can't pin an exact cause on it, which means that GVHD (graph-versus-host-disease) could be to blame. We'll keep a close eye on the fever and his rash for the next couple of days to see what develops.

They switched out Ryan's feeding tube today. The new one goes a bit farther down than his stomach, extending into his duodenum. The new positioning greatly reduces the risk of reflux aspiration, a particularly dangerous trigger for pneumonia.

Pumping Iron

Regan in the middle of her daily dumbbell regimen. Two sets on each arm ~ 25 reps each.

D+38: When good techs go bad

WBC 1.0
ANC 640

Today was pretty uneventful. The counts aren't exactly rocketing up, but they aren't going down either. With the low-grade fever and pokey counts, it seems like there must be something behind the scenes working against Ryan. Maybe a virus or bacterial infection that hasn't quite announced itself yet. Hopefully, Ryan can keep it at bay with his emerging immune system and the antiviral/antibiotic drugs.

I won't name names, but Cheryl had it out with one of the PCTs (patient care technician) today. I'm not sure what the tech's deal is, but she can't seem to remember the rule about putting on a gown and gloves before she comes into the room to check Ryan's vitals. We complain about it, but the issue persists. As an aside, we are consistently told that the gown and gloves are to protect other patients from Ryan. The implication being that we need not be concerned about it if people break the rules. Well, guess what? If they're not following the rules in Ryan's room, what do you think the odds are that they are following them in other patients' rooms? At any rate, Cheryl got medieval on this tech in the afternoon when she noticed her coming out of the room without gown and gloves. The funny part is that they are supposed to take that stuff off before they leave the room, so it's possible that she actually followed the rules for once. No matter. I'm sure she could use the reminder.

Finally, a bit of feel good news. The girl next door just returned from a 3-week stint in the PICU (Pediatric Intensive Care Unit). Kids don't always come back from there, so we are quite happy for her and her family.

D+36: Up your nose with a rubber hose

WBC: 1.0
ANC: 520

Ryan was a lot more comfortable today. I'd like to attribute this to a clearing viral infection, but I'm afraid it's probably just the cumulative effect of the increased morphine dose. Of course, that's nothing to complain about. Cheryl and I are both happy that Ryan seems to be feeling less discomfort now.

We are still trying to figure out the source of Ryan's discomfort and bloody urine. A bunch of labs came back today that ruled out bacterial infections, so it looks like we are dealing with a virus. If you remember from Cheryl's earlier post, some labs were drawn on Monday to test for two of the most likely culprits: BK virus and adenovirus. Well, it looks like the urine was not collected and/or processed correctly, so we get to start all over tomorrow. Now we won't know until Thursday which virus Ryan has. It's not super-important from a treatment standpoint, since both viruses are essentially treated the same way, but Cheryl and I like to know so we can focus our anxiety accordingly. Speaking of viral tests, Ryan came back negative today for the HHV-6 that was stifling his counts last week. Nice to scratch one off of the list for a change. Then again, perhaps it was just being polite -- moving aside so that Ryan's new virus can take hold.

Ryan has been battling a fever off and on for the last 24 hours. It comes and goes, so hopefully it's just transient weirdness and not something else. His pulse has also been quite high over the past day or two -- occasionally jumping up into the 200+ range. Dr. Graham thinks he may have a little fluid around his heart, which can cause this type of rate jump. An echocardiogram is scheduled for tomorrow to check things out.

Since the beginning of this process, Cheryl and I have struggled with the decision of whether or not Ryan needed an NG tube to help take oral medication. As it turned out, he dominated the early stages of treatment, defiantly sucking down the chemo drugs and liking them! Things are a bit different these days, however. Ryan's throat is really torn up from parainfluenza and the aftermath of mucositis. Add to that his typical level of sedation (heavy), and you can see how it might be difficult to administer oral meds at this point. So, we finally took the plunge and had a feeding tube inserted today. It's basically a plastic straw that they insert into your nose and run down to your stomach. Ryan did very well during the procedure and actually helped things along by swallowing at the appropriate times. We're hoping that we will only need it for the next week or so.

First chair

Look at this cool new chair that Mommy bought me.

D+28: Steady as she goes

WBC: .5
ANC : 104

I can get used to this continuous improvement stuff. Ryan came through with another strong showing this morning. We have a ways to go, but we are definitely headed in the right direction. One growing count that we're not as ecstatic about is Ryan's weight. He came in at 18.2 kg this morning! We are a little worried about all this extra fluid sticking around, but Dr. Graham says it's pretty normal with steroids and constant IV nutrition. The one thing you do want to keep an eye on is fluid in and around major organs. Fortunately, Ryan's chest X-ray from the other day was normal in this regard. For the time being, we will just have to get used to our little Sumo. In fact, Ryan is already practicing his new craft by throwing Cheryl out of the bed at 4:00am every morning.

D+27: Fore!

Actually, 0.4 to be precise. Ryan's count is on the move again (in the right direction). His ANC is up to 64, which is also a good thing. If you don't remember what ANC is all about, check this out.

We may have overstepped our bounds with Ryan's morphine adjustment. We are trying to wean him off slowly, and prior to today, things seemed just fine. Unfortunately, Ryan was thrashing around a bit more today and making some strange faces. By the evening, he was definitely uncomfortable. After quite a bit of discussion/debate, Cheryl and I decided to hit him with supplemental doses of morphine until he feels better.

In the course of discussing Ryan's morphine requirements, Dr. Graham started talking about Ryan's discharge from the hospital. No timeline yet, as we are still in the thick of things now, but it sure did catch me by surprise. All this time, we have just been thinking about making it to tomorrow, hoping for the counts to climb a little bit more. It's nice to think about, but Cheryl and I have learned that measured optimism is the best way to go. For now, we'll stay focused on the counts and hope Ryan feels better as his body recovers.

D+26: Two steps forward, one step back

Ryan's WBC is back down to .2 today. We knew there would be some fluctuation in his count, but this hiccup may be attributable to something else. Ryan woke up with a slight fever this morning and his other counts (platelets, red blood cells) were down as well. Dr. Graham came in a bit early to see what was up. He thought that an infection may be responsible for the fever and the depressed count (Ryan's new white blood cells were enlisted to fight the infection). He ordered a chest X-ray, some blood cultures, and Tylenol to treat Ryan's fever. More anxious waiting ... The X-ray and blood work came back normal. Ryan's fever is gone. Hopefully, we dodged a bullet with this one.

Dr. Graham seems quite anxious to get Ryan off of the morphine. Of course, Cheryl and I were just getting used to the idea of having him on it all the time, so we have some mixed feelings on the matter. On the one hand, we definitely want Ryan to be more awake and alert. On the other, we don't want him to be alert just to feel a bunch of pain all the time. Anyway, the initial results of lowering the morphine are promising. Ryan is more alert, but he is not in significant discomfort (easy for me to say). He laughed at me like four times this afternoon, which really made me feel good. The only sad part is that the harder he laughs, the more it hurts his chest/throat. So the laughter starts with a smile and ends with a cry. Poor boy. There is a bright side to the crying - he manages to hack up a bunch of mucus from his airway.

I want to give a shout out to my cousin, Kathleen. Forever the champion of good causes, she traveled from San Francisco to Los Angeles last week by bike ! All in the name of charity. Well done.

Heads Up

Regan is so cool. Cheryl and I were talking the other day about how easy going she is about pretty much everything (exceptions: waiting for food, sitting in poop). It seems like no matter what we do with her, she's happy just to be along for the ride. Go for a walk? Sounds good. Take a bath? You bet. Tummy time ...? Let's do it. My experience has been that babies universally despise tummy time, but Regan is totally cool with it.