Joy and Lament

Dear Friends,

Thank you so much for praying for us as we have transitioned from hospital to home. It has been wonderful to be together as a family again after almost three months apart. However, it has also brought us into a new phase of grief. 

Now that Liam is home, his illness seems more obvious, more glaring. He is so sick and so weak. We were used to seeing him in that state in the hospital, but in his home context, it feels so unnatural and heavy. He sleeps a lot. He often feels yucky. And it’s very difficult for him to move around and play.

He has moments when he remembers what it is like to be a normal kid again, until he is crushed by his limited mobility. Yesterday, in a moment of feeling well, he tried to jump over a pillow on the floor and immediately fell. He didn’t want to play for the rest of the afternoon after that. It is heartbreaking to watch our child in this state, unable to live life as fully as every child should. 

Liam has also been having fevers since we left the hospital. The doctors believe this is still IRIS (an overactive immune response). These particular fevers seem to start when his blood counts recover, and diminish once they drop with the chemotherapy. Thankfully, the doctors have allowed us to remain at home. We have almost daily check-ins with traveling nurses, and we will continue to have appointments with our doctors at Mary Bridge Outpatient Clinic at least twice a week. 

On Monday, Liam will have surgery to get a Hickman line placed in his chest (think of it like a long-term IV). He will also begin the next round of chemotherapy on the same day. Please pray that the surgery goes well, and that he doesn’t have any bad reactions to anesthesia. When he got his liver biopsy, he had a reaction and became hypothermic, so we are a bit nervous about it. 

Finally, although it’s been challenging at home, we are so thankful that Liam is alive and with us. There were many moments in the hospital when we thought we might lose him, and each day that we get to have with him is an incredible gift. We are cherishing every moment with our boy.

Please pray that Liam would come to know and experience that Jesus is with Him through these difficult circumstances. Pray that he would have joy and peace. Pray that he wouldn’t give up trying to play, and that he would get stronger. Pray that he would be healed from leukemia and all of his infections.