ANC and Complications

Liam's Status

Emily and I had a care meeting today with Liam’s medical team in the same conference room where we wept on May 30 when we first heard of Liam’s diagnosis. This meeting wasn’t much easier. In this post, I will attempt to lay out the facts of where we are at. First, some good news.

Over the past few days, Liam’s ANC has risen exponentially. Today, it’s over 5,000. This means his bone marrow has started to recover from Phase 1 of chemo, and his immune system is returning. Additionally, his body is now working overtime to fight this fungal infection. As a result, his fevers have worsened, and he is pretty out of it. But this is good news. Now on to some hard things.

First, in our meeting this afternoon, we found out that only 2% of patients get this sort of fungal infection. It’s very serious and life-threatening. The doctors are concerned for Liam and are wading through lots of complications. Though the anti-fungal medication Liam is on seems to be targeting the infection, and his immune system is working to fight it, doctors are still not sure what fungus it is and are worried about it spreading to Liam’s bloodstream and other organs. All of this could be fatal. Tomorrow, Liam will have another CT scan to see if it has spread and to determine if a biopsy can be done to narrow down the type of fungus.

Second, the anti-fungal medication itself is a source of tension. The current medication Liam is on, amphotericin, is the heftiest anti-fungal available. The infectious disease doctor called it their “big gun.” Yet, with big guns come big damage. Amphotericin has all sorts of harsh side effects, including adding a high amount of toxicity to Liam’s body, which is hard on his kidneys. Adding to this is the fact that he needs to be on anti-fungal medication for 6-12 months, and the idea of having him on amphotericin that long isn’t good. There is another group of anti-fungals available, but they have awful interactions with a particular type of chemo medication Liam needs for treatment in Phases 2 and 3. The last option is a third type of anti-fungal, micafungin, which Liam was on, and they are trying to determine if it failed to treat this infection or not. The hope is to get Liam back on micafungin ASAP. This would be ideal at is has less side effects. The situation is complicated and the doctors are not sure what they are going to do.

Third, we have a limited window in which we can hold off starting Phase 2 of chemo. The longer we hold off, the more Liam’s recovering immune system can tackle the fungus. Once he starts chemo again, his immune system will disappear. At the same time, if we wait too long to start Phase 2, Liam will likely relapse with leukemia. It looks like we may wait another week to begin Phase 2.

Finally, going home is up in the air at this point. The usual window to go home was this past week. We and the doctors don’t know what to expect with these new issues. We were told Liam might get to go home for a few days in the next month before returning for more chemo treatment. But we’re not getting our hopes up. At the end of the day, we’ll be here as long as we need to see Liam get the right treatment.

In all, we’ve known we have a long road ahead, but over the past few days, that reality has really sunk in. These words from the hymn, Whate’er My God Ordains Is Right have been on my mind today:

"He is my God, though dark my road

He holds me that I shall not fall

And so to Him I leave it all

And so to Him I leave it all"

How to Pray:

• Pray the fungal infection would cease.

• Pray for wisdom for Liam’s medical team.

• Pray that the fungus wouldn’t spread to other organs.

• Pray for no adverse and long-term side effects from medications.

• Pray for clarity on what fungus this is.

• Pray leukemia would not return.

• Pray that we would have faith.

• Pray for our comfort.

• Pray for our endurance.