Wednesday June 30
Eli was discharged from the hospital in the morning. He wanted to go on a walk, so we walked to an international market down the street from our apartment. This was tiring for him and he was out of breath.
Later, we went to a youth activity with the youth group for the local congregation of our church. It was nice to get out and about and socialize with others. Being surrounded by signs telling us to be socially distant (as opposed to physically distant), has been wearing on me. I need the support of community: family, friends, neighbors, and strangers, so the response to the pandemic has been very challenging and demoralizing. I was grateful to be able to interact with others outdoors where we could be together in a less risky setting.
Thursday July 1
Eli already wrote his post about our zoo trip. We spent about 4 hours there. We took it slow and he relaxed in the wheelchair almost the whole time. That evening, he spiked a fever again, so he was admitted to the hospital. There wasn’t a room available on an oncology floor, so we ended up with orthopedics. The silver lining was that he got a “corner office” (When he was inpatient back at original diagnosis, he had a corner room that was accessible through another room that we dubbed the “air lock”. He called his room the corner office). We really enjoyed the view from the 11th floor and the extra set of windows. However, Eli was sad every time it rained because he wanted to go play outside in all the watery wonderfulness.
Friday July 2
Eli spent the day playing on the computer or looking for other things to do. Our friend Elisa came to play games with Eli. One of my favorite aspects of this trip has been making new friends with the many kind people here.
Walking to and from the game room tired him out and he was still out of breath. They determined that he had slight pneumonia and Cytokine Release Syndrome still.
This was probably the low point of the trip for me. Eli was losing patience with being stuck in the hospital and I was just tired–tired of no sleep all week, tired of hospitals and the extra damage to my face from all the mask wearing, tired of cancer and thoughts of death, and tired of being apart from my husband and other children. At one point I stepped out of the hospital so I could cry to my friend on the phone and vent about all my frustrations. The only place I could do this was sitting on the street corner, in the muggy Houston heat. Anywhere indoors, I was suffocated by the mandatory mask or in Eli’s room, where I had no privacy. Good thing I brought tissues with me.
However, there’s nothing more tragic than being without ice cream, so I went to McDonald’s for an M&M McFlurry before I returned to the hospital room.
Saturday July 3
We were moved to the oncology floor. I was glad to have access to the resources there. The room was huge, but the view was mediocre.
Elisa helped me move out of the apartment in which Eli and I had been staying and into the house I had reserved for us through VRBO when Adam and the kids joined us. They arrived late that night.
Sunday July 4 – Independence Day (in the USA and Texas Children’s Hospital)
I arranged to meet the family at church. I don’t have a picture of the moment, but the children all clustered around me as we engaged in the best group hug ever. Being reunited with them and Adam after the two week separation was pure joy.
Meanwhile, Eli was at the hospital scheming to be discharged. Elisa and I went to the hospital after church to play games with him.
Eli convinced us and the doctors to let him skip his last dose of the CRS medication and he was discharged that afternoon. When we joined the children at the house, Ella was taking a nap. It was raining when she woke up and she saw Eli playing outside in the rain with the other kids.