Difficult Decisions

The past few days have been a roller coaster for us. The medical team’s decisions have been changing daily as they assess how Liam is doing and seek to make the best decisions.

What’s New?

The potential bacterial infection seems to have been due to contamination, not an actual infection. That said, Liam’s fungal infection is still an active and serious issue despite his immune system fighting it this past week. Throw in the risk of leukemia rearing its ugly head again, and the situation becomes complex.

Doctors have been intentionally holding off on starting Phase 2 of chemotherapy in order to give Liam’s body a chance to fight the fungus. Seven to ten days after chemo starts, Liam’s immune system will vanish as a result. Without an immune system, the type of fungal infection Liam has is deadly, and antifungal medications can only do so much. At the same time, if Liam’s specific type of leukemia (T-cell ALL) comes back at this point, we’ve been told it becomes highly difficult to eliminate. Both situations are life-threatening.

With all these tensions in mind, Liam's medical team made the hard decision to move forward with starting Phase 2 of chemo today. The hope is that Liam’s body has been and will continue to fight the fungal infection before his immune system plummets in the next week or so, thus setting him up to handle chemo well. But right now, we're not sure. Again, the concern is that the fungal infection will get worse as a result of chemo and become fatal. Yet, it’s as if we have no choice but to start chemo again because of the risk of leukemia returning.

As we start chemo, we were told to expect a hard month. The chemo he’ll be receiving is harsh and usually comes with all the side effects you associate with this sort of treatment. Once his immune system vanishes, it will not come back for a few weeks and he'll be seriously immunosuppressed. Add in the heavy anti-fungal medication Liam is on along with the active fungal infection, and Liam will be in a fragile state.

Regarding the anti-fungal medication, the doctors are now hopeful to switch to a less intense option once Liam’s fevers subside. Thank you for praying to this end.

How Are We Doing?

Liam is the most tender and temperamental he’s been since we arrived at the hospital on May 30. It’s understandable. He’s been stuck in the hospital for over six weeks. He also feels horrible most of the time (fevers, nausea, vomiting, lack of appetite, fatigue, etc.).

Lily and Jack are doing great. Grandparents, church members, and friends have all stepped up to help them. It’s been wonderful to see. Thank you.

Emily and I feel worn out both physically and emotionally. With new circumstances come new realities to mourn. The continued separation of our family, caring for Liam, and the shuffle between the hospital and home are also contributing factors.

Despite all this, Emily and I are also aware that we have new opportunities to trust our Lord. We are taking comfort in knowing that, despite doctors, decisions, and developments, God is the one who is ultimately in control. Our trust is in Him (Ps. 20:7).

We were told today that we’ll be here at the hospital until at least August 15, if not longer.

How to Pray?

• Pray for healing, that the fungal infection would end, fevers would cease, and that leukemia would not return.

• Pray Liam’s spirits would be lifted and that he would have the energy to get out of bed, play, stretch his legs, eat, etc.

• Pray Liam’s immune system would stay intact as long as possible despite chemo so he can fight the fungal infection.

• Pray the less intense anti-fungal medication will work to treat Liam’s infection.

• Pray for wisdom for Liam’s medical team as they navigate complicated decisions.

• Pray for strength to endure and faith to trust the Lord for our family in this ongoing season of suffering.

• Pray for better sleep at the hospital

• Pray that God would be glorified in and through these difficulties.