How Should We Proceed?

Dear friends,

Last week, Liam ended up in the ER with a fever and extremely painful chemo mouth sores. We discovered that his blood counts were very low, so he likely had a septic infection. They admitted him to the hospital that night and began antibiotics and several blood transfusions. He also needed oxycodone and morphine because his mouth was in so much pain.

He actually couldn’t talk for several days because of the sores on his tongue, so we had a very quiet hospital stay that week with lots of hand motions and guessing what he needed. Fortunately, he felt much better after a few days, and we were able to come home on Friday. 

By yesterday, his blood counts had totally recovered, and we were able to begin the the cycle of chemotherapy treatment. He gets “mild” chemo through outpatient care every day this week, and next week he’ll begin the really intense chemo treatment. The doctors would like to keep him in the hospital for that entire round of chemo and until his blood counts recover, so we will be in the hospital for at least a month, if not longer.

This upcoming Friday, we actually have a meeting at Seattle Children’s Hospital to get a second opinion with one of their infectious disease doctors. Apparently, it can take up to three months for a consult referral to go through, but our case went through almost immediately. Our nurse navigator said that that never happens, but it shows that they thought Liam’s case was urgent enough to get us in right away. 

Liam has had so many infections that he is still recovering from, and it makes him extremely complex going forward with chemotherapy. While we have so much respect for the infectious disease team at Mary Bridge, Liam is so complicated that it’s hard to know what to do with him regarding disease prevention. They are currently working on a plan to attempt to keep him stable through the final phase of treatment, but we want as many people involved in that decision as possible in the case that someone at Seattle Children’s has possibly seen a kid like Liam and had successful results. 

The doctor at Seattle Children’s will either agree with the regimen in place for Liam at Mary Bridge in Tacoma, or they may have other ideas. We are hoping that they will confirm with us that Liam’s care at Mary Bridge is sufficient and that we won’t have to start traveling to Seattle, but we are more than willing to do whatever will be best for him.

How to pray

• Please pray that Liam tolerates chemo this week.

• Pray that we have clear answers from our appointment in Seattle on Friday.

• Pray for Liam next week as he begins the really intense chemo.

• Pray that he would continue to heal from his previous infections and that he wouldn’t get any new ones! 

• Pray for leukemia to be eradicated.

Thank you for coming alongside us and being our wonderful prayer warriors. We love you all!