Time

Well, it's been over 48 hours without a fever, woohoo!

Dalynn and I had the night off (my mom and sister stayed with Cole) and got a chance to go to church this morning. I could tell how much time had passed by how much bigger all the kids at church seemed. It was wonderful to see our church family and we got a chance to talk to them as a body, as well.

Our last service of the year was a continental breakfast style get-together and it was an ideal way to catch up with everyone. I thoroughly enjoyed it, and my heart swelled with gratitude for all of these people who have done so much for us.

We headed back to the hospital around 3.

Time seems to move differently in the hospital. I can't quite figure it out, but I think it has something to do with living one day at a time. You don't really make plans while you're here, you just wake up and all you consider is the day that lays in front of you. You live the day as best you can and when night comes you tend to spend time contemplating what went on in the day that just passed. Then you go to bed, probably earlier than you would at home. The next day will roll around sooner than you probably wish, at least from a sleep perspective.

I can't help but think of the scripture where Christ tells us to consider only today, as today has enough troubles all on its own. It's very true. To some extent, I wish I could have this hospital mentality at home. Maybe I could just place my faith in the Lord and live the day at hand to its fullest. Maybe I could just trust that the Lord will see to the needs of tomorrow and let Him, instead of wasting so much time worrying about it myself (and making futile plans, hehe).

At any rate, I know that I've lived mainly day-to-day over the past month and a half. That makes this time seem so much longer and even fuller than a regular month and a half would normally feel. Not all of it has been pleasant, but I certainly can say that I've lived more in this time than I ever have in any given month and a half in the past.

It's an interestingly satisfying feeling.

There's a Fungus Among Us

I do feel the need to apologize for the title, but it was too good to pass up.

Cole does officially have a fungal infection. Further, a CT scan today showed that it was in his brain. Dr. Lowe (one of the oncologists) says that it is only "small spots" in his brain, though, so there is some sort of silver lining. Most likely the spots in his lungs, heart and brain are all fungal.

The infectious disease doctor, Dr. Fisher, thinks it is aspergillus. That's not a good thing, from what I can gather, but it is treatable.

The course of treatment will probably last for a very long time, as in months if not years. It's very hard to treat fungal infections and they have a tendency to come back. Cole will be getting two anti-fungal medications for the time being, but will eventually get moved down to one. We'll likely be in the hospital for a while, as well, as fungal infections are slow to respond (but they are also slow to grow).

Despite all the bad news, it is nice to finally have a diagnosis (of sorts). It was pretty painful when no one knew what it was and folks kept waffling back and forth on what it could be, but no one would give us a definite answer. Now, we have a definite answer and we also have a definite way to move forward. We will continue to move on, and will continue to fight as best we are able. This really changes nothing.

Cole will continue to get his chemo on time. He will also get periodic CT scans to make sure that the infection is being treated. Our number one priority right now is to fight leukemia as it is, by far, the more dangerous of the two diseases.

Now, for some positive news.

Cole was taken off of contact precautions today so we were able to go to the play room! He played for an hour and a half, standing for at least 30 minutes and even trying to walk on his own. At first he was rather shaky on his feet, but as he stood he got steadier. It was good to see him playing and having a good time.

Also, when we got back from the PACU after the CT scan I was eating a piece of cheese. Cole saw it and decided he wanted it, so I gave it to him. He spent the next 5 minutes talking to and about the cheese, but not eating it. I finally asked him, "are you going to talk about it or eat it?" Cole looked at me, and with a very serious expression said, "I gonna talk about it".

All things considered, our spirits are good, and we're settling in to whatever this new diagnosis will bring. I'm not feeling stressed about being in the hospital, and we're back to sharing the load, so I guess that's good.

Fever City

Cole's still running fevers, some of them high. Our infectious disease doctor, Dr. Fisher (he's filling in for Dr. Buescher) took some time to personally look at Cole's slides from his biopsy and got a surprise. He found fungus that had been overlooked previously.

They're going to start Cole back on the anti-fungal medicine, which is something that Dalynn and I had wondered about. When they took him off of the anti-fungal medicine he started running fevers again.

Though this is bad news, it does appear to be an answer to prayer, as well. Most of us have been praying for the doctors to have wisdom, and this sounds like a cut-and-dried case of a doctor having wisdom.

So, continue praying and now pray that the anti-fungals wipe out the fungus wholesale.

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.