On Friday, Lucas moved back up to the oncology floor and had a care conference with his specialties. 

ENT named 3 difficulties Lucas has with his airway: 

1. Vocal cord paresis. 

2. A congenital “shelf” of extra cartilage under his vocal cords that make his airway narrower. 

3. The swelling beneath his vocal cords caused by his long intubation, but could be re- aggravated by viruses.  

The vocal cord paresis is improving by the week! He had a flexible scope today and it looks like his vocal cords are opening wider than they have before. 

The ENT’s hope that as Lucas grows, his airway will grow with him and the shelf will cause less of a problem. 

Finally, the swelling may be something Lucas deals with as he gets viruses this year. ENT plans to keep a close eye on him and intervene if Lucas’s symptoms return. It could be less aggressive interventions if possible or more intense if his condition calls for it. Right now we are treating with an inhaled steroid. 

Speech is planning on repeating a Swallow study next week to have a new baseline to introduce solid food. As of now, we are only feeding through his Gtube. 

As far as Oncology, Lucas will get a week off then do a 2nd month of Bilunatumomab. This will involve a 2 day admission to monitor for side effects.  

After this immunotherapy treatment, Lucas will start the 2nd phase of treatment called consolidation. It will be more intense chemo treatments and include weekly lumbar punctures with chemo into his spine. The following month, the same chemo will repeat but without the weekly LP’s. The goal after Consolidation is to have a bone marrow biopsy and find less than 0.01% leukemia cells which will put him into remission! 

Tonight is the first night we’ve all slept in the same house since 2/21. We’re so grateful to be home! 

Thank you for all of your prayers ♥️ Lucas has come a long way & we pray that God will continue to heal and strengthen him. 

Love, 

The Kromminga’s