Chelsea is Tired

Her body is tired. Five rounds of chemotherapy is starting to wear her down. Today, Day 25, Her ANC is still only 10. We thought it was on it's way up since it was 20 on Thursday, but we're back to wait and see. With each chemo treatment, it's expected to take longer to recover. I'm going to back up now and try to cover what we've been learning over the past couple of days.

Wednesday we found out that there was mold growing in the culture they did of Chelsea's ear. It's aspergillus, a mold that is all around and on us, but it can be dangerous when combined with an AML patient. It's complicated, but to simplify, Chelsea has no counts to fight off an otherwise harmless mold. They weren't too worried about it but yesterday morning she was particularly crabby. She's slept better the past three nights, but yesterday morning when she woke up she cried and cried. The nurse practitioner was in here when she was crying, and looked at her ear again and decided we needed to go back down to ENT to have them check it before the weekend. Thank GOD we went down there.

We were seen by a different ENT doctor (AMEN!) and she could see a fungus growing in her ear right away. They magnify what she sees as she's cleaning out the ear on a TV screen, and I could see what she was cleaning out; something white (and a lot of it) that almost looked like cotton candy with a web-like appearance. When we were there on Monday, the drainage was yellow/orangish. It took her a couple of minutes just to get it out enough to see the tube. I told her the other ENT doctor gave us antibiotic drops for the infection and she said, 'woah, no, that encourages the growth of the mold' ... HUH?!!! I was a little flabbergasted at the lack of communication between the hemonc team (who did the culture and found the mold) and the ENT doctors. Anyways, that's in the past, she is now OFF of those drops and on antifungal ear drops.

The ENT doctor yesterday was extremely thorough. She asked me questions about Chelsea's treatments so far as well as her history such as her tube placement last year. She was honest with me in that she was very concerned about the mold considering Chelsea's counts are so low. She feels we need to keep a close eye on Chelsea's ear. The ENT doctor recommended even after we are released from the hospital that we return every other day to have her ear cleaned out by an ENT, and if this doesn't clear up in a week or two we need to talk about removing the tube (which we don't want to do until she has better counts b/c it's too dangerous!). The ENT, oncologists and ID (infections disease) doctors don't think Chelsea is showing any signs of the fungus spreading anywhere else in her body. She's acting happy for the most part and she's not tugging at her ear. If it did get out of control though, it could spread into her bone which would be extremely painful and would require surgery.

The doctors just rounded and we bombarded them with a handful of questions as we do daily. The plan for now, is to get her in to ENT Monday where they will culture what is in the ear canal (the initial culture was only what was on the outside of the ear that you can see with your bare eyes). Then the ENT doctor will once again clean her ear out as it becomes full of this goo every few days. We are praying that the culture shows there is no mold INSIDE her ear, that would be the best we could ask for. I'll admit I'm skeptical that will happen because as white stuff they cleaned out made me think of a fungus growing, and because we've been feeding this warm moist area with ear drops that promote fungal growth for five days. URGH!!!!!!

To add to all of this, Chelsea's liver enzymes have been high lately. Not critically high, but about three times normal. They figured out Wednesday that the medicine that was damaging her liver, ironically, was fluconozole ... a preventative anti-fungal medicine she's been on for months. She's been off of it for three days now and her numbers are half of what they were, so much closer to normal.

If the culture Monday grows mold/fungus we would: (which it could take up to a week to grow)

* likely do some sort of a scan to see if it has spread (maybe a CT scan)
* give her another anti-fungal either orally or through IV to help clear it up, we'll have to decide if the benefits of a new medicine would outweigh the risks it poses to her liver
* discuss a shot that can help boost her counts (which in turn would help her body fight the fungus) ... it might seem like this would be an easy answer, but they do not do these shots on AML patients as some studies have indicated the medicine can encourage relapse (yep, the risks are endless, it seems everything we do is super scary)

Whew, that was a lot, but I wanted to figure out what was going on so I could post the details before worrying everyone. Although you may be worried now. Ryan and I are just trying to be optimistic and we're spending some quality time with her, and, when she is sleeping, with each other. We actually went out for a little bit after she went to sleep. We felt like teenagers being out so late, but it was really fun and we talked for hours. In fact we were up until 2am, we definitely haven't stayed up that late for a while (out of our own free will that is!)