June 19, 2024

Ben Spector
Jun 18, 2024
3 min read

Liam's Status

As many of you know, Liam has been spiking fevers over the past few days. This is not surprising to the doctors, yet it is still concerning. After switching antibiotics, Liam’s “fever curve” has improved (I feel like we’re going to medical school with all the new things we’re learning). This simply means that over the past two days, when he has spiked a fever, it has not been as high as previous ones, and the time between fevers is getting longer. This is a good sign that something has shifted for the better. With that, Liam started to gain more energy today, which makes life a little easier for all of us.

Specifics on Treatment

Along the way, we’re also learning more and more about what treatment actually looks like, the potential timeline, how the medical team is assessing the effectiveness of treatment, etc.

Here are a few details we’ve found helpful. My apologies ahead of time for all the information. I trust it will be helpful to track with future updates.

In T-cell ALL (Liam’s diagnosis), there are three risk categories, and Liam falls into the lowest, which is considered “standard risk” (this is good news).
We get updates on Liam’s blood counts every day. As he receives chemotherapy, the goal is to kill leukemia cells. The negative effect is that chemo kills all the other good stuff in Liam’s blood. We track blood counts to ensure Liam gets blood transfusions when specific things in his blood get below a safe threshold. We also track blood counts to see when he is producing what are called neutrophils or ANC. These are baby cells that, in one sense, constitute the immune system. Once these start rising, it’s an excellent sign that Liam’s body is doing well, and going home may soon follow.
The effectiveness of treatment in Phase 1 (we are on day 17 of 28 days of treatment) is ultimately unknown until day 29 (July 1) when Liam receives another bone marrow biopsy. That’s when we’ll know how well the chemo has worked and what treatment will look like in Phases 2 and 3.
Phase 2 will take place largely from home. Liam will likely go to the cancer clinic every few days to receive more chemo. This usually lasts 6-9 months. It’s likely to be a rough summer and fall for him.
Following this is Phase 3. This is the longest phase. We’ve been told it is the easiest, but Liam will nevertheless be taking chemo meds orally, at home, every day during this season. When you put all the phases together, they typically total around 2-3 years.

We’re taking it a day at a time, which is all we can (and should) do. Thinking about the future feels overwhelming. Praise God, we’re not there yet! He’ll give us the grace we need when we need it. Today, the win was that Liam had the biggest uptick in ANC since treatment started, and his fevers seem to be getting better. We’ll take it! If Liam goes without a fever for a while, has no bacterial growth in his blood, and if his ANC continues to rise, he could come home before Phase 1 is done and finish Phase 1 through outpatient care. We hope this happens.

Emily and I continue to feel stretched in various ways. Nevertheless, with each day, we feel a little more stable.

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