A Plea for Help

First, a quick update. Cole is doing well. He feels great and we have had no low blood sugars. Cole is now back on 6MP and another of his chemos, methotrexate. The plan is that he will receive his usual dose of steroids and vincristine this coming Tuesday. So, things are getting back on track.

The big news, the normalcy changing news, is that the decision has been made on how to treat Cole's fungal infection going forward. He will be getting an older anti-fungal called Ambisome (brand)/amphotericin (generic) which is very effective in treating aspergillosis (the fungal infection which Cole is believed to have). The side effects are mainly infusion toxicity (which he can be pre-medicated against) and renal damage/failure (which can be monitored). As Dr. Owen said, it is not a matter of "if" he has some kidney damage, it is a matter of "when" and to what degree. They will be monitoring him very closely.

What makes it normalcy changing is that amphotericin can only be given by IV infusion and it must be given at the hospital in order to monitor for the two major side effects. This will necessitate Cole being at the hospital twice a week for the foreseeable future (Tuesdays and Fridays). It also means that he will be accessed (via his port) from Tuesday to Friday. Given the stricture that we are not allowed to bring our children to clinic with us, we will now need child care for Logan and Ava on most Tuesdays and Fridays.

We are asking our church family and immediate friends for help with this. If we can find 6 to 8 volunteers then we can arrange it so that no one person will watch Logan and Ava more than once a month. This is obviously a lot to ask, and we do not ask it lightly, but we really have very little choice. So far, we have had 3 awesome folks offer to help us out, so if we can get 3 more, we will hit what we consider our minimum.

If you would like to help, please contact me via email or this blog.

What Fungus Among Us?

The results of yesterday's CT scans came back today and the news is very good. The fungal infection in Cole's brain is basically gone, the infection sites in his lungs are either gone or greatly reduced (I think there were twelve sites total) and they only found 5 white blood cells in his spinal fluid (as opposed to 18,000).

All in all, that means that the treatment of his fungal infection is going extremely well and if we keep at it, which, of course, we will, it should be gone sooner rather than later.

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.