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.

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.

Cole's Star

My cousin, Jeff, was deeply moved when Cole was diagnosed with Leukemia. So much so that he wanted to do something very special for us. His answer was an amazingly touching thing to do.

Jeff had a star named after Cole.

If you look at this link here you'll see a group of numbered stars. The star "Cole Michael Rollins" is star #89.

The star is in/near the constellation Hercules and is also designated Her89. Here's another information page about it. It's on FTP for some reason, but it still displays.

This last week saw Grammy and Katy joining us. They left on Sunday, and I was quite bummed that they did. It was a great visit, and Dalynn and I were able to get out 3 times by ourselves, once for dinner with our friends Anthony and Nerissa (and Raymond, too).

So far, we have to say, Delayed Intensification has been better than we expected. We attribute that to a direct answer to prayer. All in all, Cole's side-effects haven't been as bad. We were really afraid that things would be as bad as they were during Induction. Instead, we have had a relatively side-effect free time. Relatively, mind you.

Cole has still had some side-effects, but they just haven't been anywhere near as bad. He's been pooping better (he pooped today, as a matter of fact, 3 times so far) and he's been sleeping well. He still wakes up once a night, but that's nowhere near as bad as the 3 to 4 times a night he'd wake up during Induction. Dalynn and I are still alternating every 2 nights. So I take 2 nights on, and then she takes 2 nights on. It's very manageable.

Lisa will arrive tomorrow and she'll be here through the end of the week, most likely. Then Megan comes.

We're still not sure what we're going to do during the second half of DI. The problem is that we have to wait for Cole's ANC to recover (that's the count that determines if he's neutropenic or not). That could take as long as 3 weeks.

Once his counts have recovered, then we embark on a two week course of completely new chemo. Some of it will be given daily by shot, too, which we're not looking forward to. We've heard that some kids fly through this stage of DI, and some end up in the hospital with side-effect caused fever.

Please pray that Cole flies through it, and please pray that we continue to have a better time of things than we did in Induction.

One Week Down

Well, we're one week in to delayed intensification, and so far so good. Cole's had some constipation problems, and will get another enema today, but the steroids don't seem to be messing him up as bad as I thought they would. If things continue as they are (and I use "if" as a kind of "knock on wood") then it will be tolerable.

Of course, in Leukemia Land, nothing is as it seems. That's something that's been proven to us already. But, hopefully, things won't get worse.

One thing that I can say is a plus is that Cole has not gotten sick recently. We've had some kind of nasty cold running around our house. Both Logan and I have had it, though with Logan it was RSV, which I don't know if I had, but the antibiotics sure didn't seem to touch it. Anyways, Dalynn might be coming down with it now, too. And this isn't the first cold/bug to work its way through our house over the past couple months.

However, Cole has stayed consistently well, even with neutropenia, which is nothing short of miraculous. Now, if he can stay well for the next few weeks, it'll be really awesome. So get your prayer on.

Delayed Intensification

So, Cole's delayed intensification began today. I've never looked less forward to something in my life.

Here's a very good write up my mom did that will walk you through the stages of delayed intensification:

Thursday, March 13th, Cole begins an 8 week arm of his treatment known as delayed intensification . This is a very intense portion of his treatment where he will be getting 8 different forms of chemo. Three of them he has never had before, and two he has had only once. Here's how the next three weeks will look starting Thursday, 3/13;

1. 21 days of steroids by mouth twice a day
2. Starting Thursday, 3/13, he will get two of the drugs, vincristine (IV) and doxarubicin (IV) - new -, once a week for three weeks.
3. On Thursday, 3/13, he will have a spinal tap where they will place methotrexate into his spinal fluid.
4. Either Sunday, 3/16, Monday, 3/17, or Tuesday, 3/18, he will get PEG asparaginase (IV) - had 1 time.

Staring Thursday, April 3rd, he will have one week off.

On April 10th, he will begin a two week period where he will get;

1. A spinal tap on 4/10 with methotrexate placed in his spinal fluid.
2. A one time dose of cyclophospamide (IV) - new - on 4/10
3. 14 days of Thioguanine (by mouth) - new -
4. Cytarabine (IV) - had 1 time - on 4/10 thru 4/13 and 4/17 thru 4/20

Starting Thursday, April 24th, Cole will have a two week break!! Whew.

I think the thing that I fear the most about all of this is that Cole will return to the zombie he was during induction. I've been savoring the past week. Cole, while challenging as any normal 2 year old is, has been delightful to be around. His personality is developing daily and some of the things he comes up with are awesome.

For example, Cole loves Backyardigans. If you haven't seen them, I highly recommend them. Backyardigans all end the same, with one of the casts bellies rumbling for food, at which point one of the others will suggest, "Let's head to my house, we're having X." And off they all go. In a recent episode Tyrone suggested that they have sushi. At this point, I told Cole, "Sushi is my favorite food."

Fast forward to today, 5:45 am, we're watching the same Backyardigans episode (you have to watch them multiple times to pick up all of the nuances, you see...). When Tyrone suggests sushi, Cole looks at me and says, "Sushi is my favorite food!" To which I responded, "It's my favorite food, too!" He reacted with a mixture of self-satisfied shock and glee. It was quite literally too cute for words.

It's little things like this that I'm afraid that delayed intensification will take from us, even if it is only for a time. I just pray that there's no return of zombie-dom. With everything else that's going to be going on, not losing his personality completely would be a blessing.

But, in the long run, I have to be grateful for delayed intensification. Grateful. That's really, really hard. I want to hate it all with everything I have. But, I can't. It's saving his life.