Mortality

Something has been niggling at my brain about Cole for a few weeks. It finally hit me tonight while Cole and I were outside playing with some neighborhood kids.

Before Cole got sick, he always had this devil-may-care twinkle in his eyes. He just looked like he was up to something most of the time. This is the first picture I ever took with our digital camera, and it's a little old, but it portrays the idea I'm talking about:


Besides being adorably cute, doesn't he look like he's up to something?

Now, take a look at the picture that heads the top of the column on the right. I see a happy boy, but I don't really see the devil-may-care twinkle.

I was watching Cole interact with the neighborhood kids tonight, and a couple of them were riding scooters. Whenever they'd come riding by, Cole would crowd up to me on the sidewalk and kind of hide behind me. This struck me as a little different than Cole might have acted before he got sick.

I started wondering what the difference was, and it didn't take me long to arrive at the conclusion that Cole is somehow aware of his own mortality. I'm sure that that's not how he would think of it, but he's aware that things can go wrong. And, I guess they have for him at times.

So, with him hiding behind me on the sidewalk, I started thinking about how old I was when I think I realized that I was mortal. I was probably between 17 and 21. It seems sad to me that Cole should be aware of this at this age, and I can only hope that the realization fades.

I had a lot more I wanted to say, but it's kind of all out the window, now. I hope you can just read between the lines.

Some Updates and the End of Delayed Intensification

Well, Dalynn pointed out the other night that I haven't uploaded any pictures since, well, November. So, I went through about 3 months worth of pictures today and uploaded some of the best. They can be found here.

I hope you enjoy them, there are quite a few of Logan, and more than a few movies. No captions, sorry, but I think the pictures will speak for themselves.

Let's see, what else? Well, Cole is doing well, and yesterday we finished with delayed intensification! That's huge news.

I got to take Cole to his clinic visit yesterday and we had a good time despite his being cranky. And I mean C-R-A-N-K-Y... Still, once he got some mac-n-cheese in him, he perked right up (and after we got the needle sticking through).

Sticking is something Dalynn and I are considering deeply right now. Currently Cole doesn't have a line in. That means that there is no line maintenance (we had to flush both ports on his CVL every day when he had it). That also means we can bathe him as we see fit, and don't have to worry about dressing changes afterwards.

The down side is that he has to get stuck every clinic visit so that they can check his counts and if he needs some kind of medicine or blood they have to start an IV. Believe me when I tell you that the blood draw is bad enough, and the IV sticking (which uses a much larger needle) is down-right terrible.

Ideally, they could fit him with a port-a-cath. But, if you remember, they tried that before and couldn't get it in due to Cole having a blood clot at his "junction". That's the place just outside your heart where your two major veins/arteries come together and go into your heart. The clot is there from his first line, his PICC, and due to it they couldn't thread the catheter in for the port-a-cath.

In case you don't remember, and why should you (I have a hard enough time keeping all this straight, and I'm involved...), a port-a-cath is a permanent line that actually resides just under the skin. It is less prone to infection and doesn't have to be handled in any special manner. It's the Cadillac of lines.

To access it they use a right angle needle and just push it through the skin that is right over the port. They can numb that skin with a topical pain killer so that the patient doesn't even really feel it. The only thing they can't do is draw blood off of it. So, even if he had a port, they'd still have to stick him to draw blood.

But, that's all assuming they could actually get the port, or any other type of line, in past his clot. Once the line is in, there's always the chance of infection, too. Installing any major type of line is a major surgery, too.

So, do we continue to try to get our 2 year old son used to being stuck on a regular basis, or do we try for another risky and potentially unsuccessful surgery?

It's a tough decision. The best thing that could happen is that his clot would dissolve, and then we could easily get a port in, even if that would mean another surgery (and more scars)...

What Do You Do with a Dead Whale?

This simply speaks for itself:

Surprise Surprise

Well, they discharged Cole yesterday around 6 pm. He was happy to go home and see his little brother and Granddaddy.

He starts his second round of Cytarabine today, so we're praying he doesn't run any fevers, as that would put us straight back into the hospital. Please pray with us.

New Cancer Treatment?

This isn't something that Cole would need, as hopefully he'll be cured by the time this rolls out, but here's a nifty 60 Minutes report on a potential new cancer treatment that would have very little side effects.

Line Out

Well, Cole's line is out. It came out last night and they started an IV at the same point. Before they took the line out, though, they topped him off with some red blood, so hopefully he'll be feeling even better.

Dalynn and I are now planning on being in the hospital for at least another week, perhaps longer. One of the doctors has made noises about us going home soon, but we're not putting much stock in that. Our thinking is that we may just opt to stay in for another week.

The reason is that his ANC is going to be down below 500 and he starts cytaribine again on Thursday. With cytaribine, he seems to run a low grade fever. Since his ANC is below 500, if he does run a fever then that's an automatic trip to the hospital for an extended stay til such a time as either his counts come back up or his fever goes away for at least 24 hours. Consequently, we'd probably end up leaving the hospital for a day only to find ourselves right back in.

We've done that before (left the hospital for a day, only to turn right around and come back) and it's really just not worth it. It takes forever to get admitted, first off, and now we're "set up" at the hospital. We have a bunch of clothes there, food for Cole, we have toys from the play room and we have a room that we like. Why pack all that up, haul it home for a night, then go back?

So, we're looking at this as being in for the "long haul". Hopefully it won't be for more than a week, but if it is, we're prepared.

It's the Line, Jim!

If you can pinpoint that title reference, then you're a true geek.

The second culture came back positive, so it's definitely a line infection. Further, since Cole's ANC dropped below 500 today, he's starting on IV anti-fungals.

Now, if you analyze that series of statements closely, you'll see that there's a problem. The quick treatment for a line infection is to remove the line. But, if we remove the line, how is he going to get the IV anti-fungals?

Well, the short answer is that they're going to put in an IV, but that means we can't go home since he must be at the hospital while he has an IV in. The possibility is that we'll be in the hospital for a bit.

Of course, they could always wait a few days and put in another line, such as a PICC line, for the duration of the IV anti-fungals, then pull that one as soon as he's done with the anti-fungals. But, really, another line... I guess I'm OK with that, but I'll be happy the day that we can put all lines behind us. They're such a pain, though they do allow for some convenience and less pain.

Even after all of Cole's lines are pulled, though, he'll still need to have IV access at least once a month for his Vincristine, but we're planning on just letting them put in an IV while he's at clinic. At this point, with all the troubles we've had with lines we feel that the down-side of the pain is balanced by the lack of an infection vector. I hate to do it to him but I know he can handle it. Still, that whole logic seems cold to me...

So, they're pulling his CVL tonight. I do have to take this moment, though, to stop and thank God for the fact that we rode that CVL for 2 months. It was a temporary, and it should have lasted 3 weeks tops. To get it to function for 2 months with as little trouble as we did have (it only had to be TPA'ed twice, for instance) is nigh on miraculous.

In the Hospital Yet Again

We spent yesterday in the ER when Cole spiked a slight fever (100.5) and held it for an hour. By our "rules" that meant we had to take Cole in, and since it was the weekend, we went to the CHKD ER around 8 am.

They ran all of the normal cultures, treated him with an antibiotic and released us to go home. The expectation was that we'd be coming back the next day (Sunday, which is today) if he ran another fever at all (which he did). However, much to our surprise, we got a call at 3 am this morning from the hospital. They had cultured a gram-positive cocci bacteria from the cultures they took on Saturday and they wanted us to come in immediately.

So, at 3 am we hauled ourselves out of bed, got Cole and his diaper bag and took off for the ER yet again. Long story short is that we're now admitted to 8B, room 801, again and we're likely to be here through at least Tuesday, perhaps longer.

The best scenario is that the culture is a contaminant. If it is, then it won't culture again. If it doesn't culture again, and he doesn't run any more fevers then we're sprung and we can go home. Of course, we've been down the "hoping for a conatminant" road before and I don't particularly feel like putting my hope in that.

Second best scenario is that it isn't a contaminant but it responds to the antibiotics that he's getting already, in which case we could still get out of here sooner rather than later.

The "no fever" part may pose a problem, however, as we're pretty certain Cole is running low grade fevers due to a chemo, cytaribine, that he's currently getting. Tomorrow is his last dose of it, though, so hopefully we can keep the fevers to a minimum.

It's hard not to want to just get out of here. I truly find the hospital to be a dragging, dull place. The atmosphere is lightened by Cole himself and the staff here, but it's still hard not to resent just being here. My mood, though, has gotten better since I got a little bit of sleep. A little...

I think it's easier on Dalynn, but I can't figure out why. I think it may have something to do with feeling comfortable with being in someone else's care, whereas I don't take as much comfort from that. It's really hard to say. Maybe it's just a guy thing, lol!

The main thing that I keep telling myself, though, is that it's important for Cole to get better. So, I'm constantly revising my impatience with that. Not an easy thing to continually do, but it's possible.

All in all, though, I do feel a peace, whether or not it's the peace of the Holy Spirit, I honestly can't say, but I feel a peace. I'm not overly concerned with the bacteria, and part of that is that Dr. Werner, the most conservative of the oncology docs, isn't overly concerned with it. Part of me figures that if he doesn't see a reason to worry and be cautious, then there may be no reason to.

This is a video of our other child, Logan. I pulled out my guitar tonight and Logan decided he'd break it down for us.

I quite honestly don't mention Logan a lot, but I'd like to change that. As you can imagine we've been very focused on Cole's treatment, but we haven't forgotten about Logan at all. I'll give you a little update on him.

He's recently, in the past two weeks, started motoring around on all fours. You put him down in one spot, turn your back, and he's gone. A couple days ago, I put him down in the living room, then went to get some water. I hadn't even started putting the water in the cup when a horrendous crash came out of the living room. Dalynn and I ran in there as fast as we could, but Logan was fine. He was up on his knees, looking at the table he'd just pulled over, wondering what all the noise was about.

He also thinks his brother is the best thing since sliced bread and a very tasty teething ring. Logan, Cole and I spent the morning before I went to work playing. We were playing on the floor and Logan kept leaning over and trying to bite Cole. Cole was not a fan of this, "He's touching me!" However, if Logan wasn't trying to gum Cole to death, he just wanted to be near him. It's was very sweet.

I'll try to keep you all up to date on Logan as well as Cole.

Cole starts the second leg of delayed intensification tomorrow. He's done with the first leg, and is recovering well, though we don't know how the next leg will effect him. Our prayer request now is that Cole will not have any side effects from this next leg, specifically that he won't run a fever. A lot of kids run fevers as a side effect, and since they're neutropenic, that's a passport to the hospital until the fever clears up. Being in the hospital is very difficult, so we'd prefer to not go there.