June 10, 2024

Last night was a bit restless as Liam received his first blood transfusion. Nurses were in and out, checking on him throughout the night. I awoke each time they entered our room, and breathed prayers of thanks that they were caring for him so well while I tried to sleep. Praise God there were no complications. 

This morning, I woke Liam up for an early breakfast. He was required to fast from 7:00am to 3:30pm in preparation for his lumbar puncture. It is not easy to keep a five-year-old boy on steroids happy on an empty stomach! Thankfully, Dad, brother, and sister came to visit, and we tried to make the most of our day. 

The lumbar puncture this afternoon went well. When Liam woke up, they immediately sent him back to his room for chemotherapy. Thankfully, he didn’t have any nausea this time. In fact, he was starving from fasting all day, so he ate twice the amount he normally would for dinner! 

The evenings with him are so sweet. We snuggle up in my hospital couch/bed and read and talk or play yet another game. I am cherishing these moments while he is still feeling well. 

Several people have asked us what our life looks like in the hospital. Honestly, it’s more taxing than we anticipated. Our first job is to keep him comfortable and entertained. We are playing lots of games and taking a lot of walks. After that we are responsible for recording his food and fluid intake, catching and measuring his urine, watching for various side effects for medications, ordering nausea meds as needed, making sure he is taking all of his medicine, getting him out of bed often enough to avoid blood clots, etc. 

We don’t mind doing any of these things, and they will continue when we get home. But we have found ourselves feeling depleted when we leave the hospital to go home to our other kiddos who are also desperate for our time and attention. We are taking turns sleeping at the hospital, so one of us can be with Liam and the other with Lily and Jack. Please pray for extra strength during this season to parent all of our kids well. We are still grieving and adjusting to our new normal.