Christmas at CHKD

Well, it's now the day after Christmas. Christmas itself was a rather low-key event, though we had a good time.

CHKD provided a bunch of toys for us to put out for Cole, and we brought a few of the more transportable ones from home (his new train table turned out to be too big to bring in the room, go figure!). Consequently, when Cole woke up we had a bunch of toys piled on the end of his bed. Cole was quite impressed and took to opening his presents straight away. He was quite enamored of Hungry, Hungry Hippos and a firetruck and airplane that you can take apart with a screwdriver.

Late in the afternoon, my mom brought Christmas dinner (once again all the food was provided by our neighbors, bless them all) and we pigged out while singing carols to Cole. Cole, in turn, sang us the theme song from Little Einsteins.

Cole continues to run periodic fevers, especially at night, but thus far the doctors don't seem very concerned about that. He's still receiving 2 antibiotics by IV, though they may discontinue the Vancomycin tomorrow.

There's no definite end to our hospitalization, unfortunately. Cole has to be fever free for at least 24 hours, and we may opt for 48 hours just to be safe. We definitely don't want to bounce back in here again once we do go home.

In the back of my mind is lurking the fear that there is something else that didn't get cultured and that is only being partially treated, though I can't imagine what it might be. Hopefully, this is just the baseless fear of a father for his child.

Pray that Cole's fevers stop and that his infection is treated fully. Also pray for strength in this continued hospitalization, as we've now been in the hospital for almost 2 weeks. We're all holding up relatively well, all considered, but it never hurts to pray for what you know you'll eventually need.

Merry day after Christmas to you all, and a happy New Year!

Still Standing

This has not been a spiritual experience. I had always quite thought something of this magnitude, something this disastrous, would mean that I'd walk in a constant reminder of the Lord's presence. That has certainly not been the case. As a matter of fact, the Lord's presence has been noticeably absent during most of this time. I can't say that there has been a sweet thing, sweet being what the Lord's presence is, about any of this.

Overwhelmingly, I've found myself tired. Exhausted, really. This has been the most mentally and physically demanding thing I've ever done. Dragging myself out of bed at all hours and coping with a toddler that is not only jacked up on meds but made willful by them is rather tedious.

When I've not been exhausted, I've felt altogether human. Felt. Isn't that what a "spiritual experience" is, though? It's an experience, which means it's something that must be felt. If it's felt, then it must be a feeling, and if it's a feeling, it must be subject to all that affects regular human perceptions. Perceptions are intrinsically flawed and subjective. I'll let you do the math from there.

I'm not trying to take away from spiritual experiences, though. They can and often are the way that God chooses to reach us, or the way that we are most able to be reached by God, I should say. I've had some awesome spiritual experiences and, before this, they were the primary way that God and I communicated. They are also unreliable, though, as I've found many times when a spiritual experience was not to be had and I felt abandoned by God.

However, I don't feel abandoned now, even though I have had a noticeable lack of any spiritual experiences recently. Quite the contrary, I feel born up by the hand of God, sustained by Him. See, in this time, I have a new proof that He is with me. I know He's there by the simple fact that I'm still standing.

After Surgery Update

Cole is still doing well, and some of the cultures have already grown some Streptococcal chains. Dr. Buescher, our infectious disease doctor, says that this is very treatable and he seems happy with things so far. He also thinks it's unlikely it's a contaminant, so we might be dealing with the real McCoy.

So, right now, all the news is good and Cole is being treated in just the right way for what they've cultured so far.

Surgery Done

Cole had his surgery today and everything went well. It took them a little longer than they expected, which was hard for Dalynn and I to endure, but in the end everything came out OK.

We had a shock this morning when they said that Cole had the condition meningitis. I say condition because meningitis is actually a condition with many causes. It means he has an inflammation of the meningeal lining (I think that's what it's called), and the likely cause is that the infection in his lungs and heart has also infected the meningeal lining (that's the lining around your brain). It showed up as white blood cells, which were not leukemic, in his spinal fluid.

The incredibly preliminary results are that it is a bacterial infection (as opposed to a fungal infection), which is good. It means it can be treated with antibiotics. We'll know more tomorrow once the cultures have had a chance to grow.

I'm sure we're going to be here a while, this time, probably through Christmas, but that's OK with me, now. I just want Cole to get on the other side of this and get well, so that he can continue his treatment and beat cancer.

As I sit and write this, Cole is sleeping soundly in his nifty bed, his pulse a low 135 and his O2 stats in the high 90s. To most of you, this won't mean much, but to us, it means all is well, at least right now.

Back to the Hospital

Well, we're back in the hospital again. We enjoyed our one night out, kind of, but we found the hospital too irresistable, it would seem.

All joking aside, they've finally found the reason for Cole's fevers over the past week. Cole spiked a fever of 103 this morning before we came to clinic and this prompted Dr. Owen to order a CT scan of Cole's chest. The scan found roughly 10 "masses" in his lungs, what are most likely either a bacterial or a fungal infection. Further testing, via an echocardiogram (ultra-sound of the heart) showed that Cole also has several more masses in his heart.

The source of this infection seems most likely to be his picc line, which is not uncommon. They pulled his picc today, but thankfully were able to get a new IV stick with just one try in the clinic, so he has IV access. Pray that his IV functions properly until it is not needed anymore.

Cole will be going into surgery sometime tomorrow morning for a biopsy of the masses in his lungs. From this, they hope to get an idea of what the infection is so that they can successfully treat it quickly.

As a result of all of this, one of Cole's chemo drugs, vincristine, was held today. I don't know when it will be given to him, but it is a pretty major thing to completely hold a drug like that.

Pray for Cole to come succesfully and safely through surgery tomorrow, and for the biopsy to reveal what the infection is. Then, pray for a quick treatment with no lasting effects for Cole.

The only note of encouragement I can give you right now is that the doctors are optimistic about the outcome of Cole's treatment. Pray for wisdom and guidance for them as they continue to treat Cole.

Cole 1, Cancer 0

Cole's minimal residual disease (MRD) came back today, and it was 0. This means Cole has no cancer cells in his bone marrow.

Praise God.

The Good

While things have not been easy of late, there have been some very good things that have occurred recently. I think I'll take this time to go over a few of these.

First, and probably most significant, Cole's day 29 bone marrow came back with 0% blasts! We are waiting on the Minimal Residual Disease, which is much more sensitive than the other tests for the final word (and praying for less than 0.1% blasts from that), but by the old definitions, before they had all the fancy tests, Cole is almost in remission. We're waiting on his counts (or good cells) to come back up. Remission means that his bone marrow is not producing cancer cells and is producing good cells. It's not a "cure", it just means that the cancer is under control.

Another good thing that has happened recently is that we have finished with induction, stopped the steroids, and our little boy is coming back! Even while we've been in the hospital, Cole has started to rebound from the zombie he had become while in induction, due in large part to the steroids. He's laughing and smiling again, making jokes, and talking! He's talking almost non-stop again, which is much more like him. He's still eating a lot, but his appetite is obviously decreasing and his puffiness is going away before our eyes. It's breathtaking to get your child back in what is almost the blink of an eye, and I can't wait for him to make a full comeback.

Lastly, Dalynn and I are starting to distribute the load of Cole's treatment better. For instance, only one of us (me, tonight) is staying at the hospital with Cole at night. The other is able to go home, enjoy Logan and get some sleep. We're also planning on trying to solo the clinic, though that will most likely be Dalynn to begin with, as I try and get back to a more normal work routine.

Distributing the load may sound trivial, but it's very important. It means that we're less prone to burn-out and that we can more easily manage our daily lives, since less of our daily lives are being consumed by cancer.

All in all, even though we're in the hospital again, things are "looking up", as Gary would say.