Chemotherapy Cycle #1 Day #2

We have been absent from our family blog for one month exactly as our son Thomas was diagnosed with cancer. We were publishing over at CaringBridge (https://www.caringbridge.org/visit/thomaslauer/), but are now going to try to bring the two together seamlessly in order to continue the family blog I have written for 14 years. This blog post is copied from CaringBridge and is being published retroactively. Please subscribe to our family blog to receive updates as I publish!

On Day 2 of Thomas's chemotherapy infusion, more than 24-hours after the start of his chemotherapy, Thomas has yet to experience any nausea or vomiting. He has actually been quite cheerful throughout.  We are hopeful that this will continue, however we are also aware that there is a known type of chemo-induced nausea and vomiting which is delayed.  Thomas may have avoided the acute phase of reaction, only to be effected by the delayed phase for several days following treatment.  We remain hopeful.
Also we are really tired as our overnight rivaled the difficulties of newborn care. Thomas is receiving massive amounts of saline to flush the chemo, and what goes in must come out. Between 9pm and 6am he woke 12 times with an extremely urgent need. I would have mere seconds to wake from sound sleep, dash to him, and stop him from leaping off the bed in a tangle, which could tear out his port IV. We would rush his pole to the restroom, then I would use one hand to hold the tubing out of the way and hold the plastic urinal in my other hand because they have to measure all his output. What a comedic scene played out all night, all day, and anticipated to continue!

The staff here is wonderful and so kind. I learned a little tip today: If one can ever get through to a Room Service phone operator, one should place orders for breakfast, lunch, and dinner trays all at once, as it can take hours to get through. This morning when our nurse learned that I had been calling Room Service for three hours, she was so distressed and went to the cafeteria downstairs  herself to get us trays of food.

Thomas got to recreate in the play room (alone with me, not with any other kids, due to COVID-19 guidelines). He visited the rooftop garden with Dad, played with stickers, watched TV, and beat his parents repeatedly at Dino Dig.

Chris stayed with Thomas for four hours while I dashed home. Everyone seemed exceedingly secure and not perturbed by my absence except for the 2- and 7-year-olds. I read Joseph two chapters of Narnia and nursed David a lot, so I hope they felt loved.

The big sad event of the day was that we informed Thomas that chemotherapy would cause him to lose his hair. I had asked the Child Life Specialist to meet us in the play room where she explained it to Thomas. Any of the staff who has interacted with Thomas for the last month will say that he is unfailingly cheerful, friendly, and talkative. Yet I watched and participated in the conversation only to witness Thomas give us the silent treatment. He would not look up from his bead artwork nor acknowledge us or respond. The Child Life Specialist told me that was okay, he may be processing the information, and we would probably have repeated conversations.

Later when Chris and I swapped so that I could go home for few hours, Chris had another conversation about it with Thomas and this time he definitely responded and expressed his sorrow. I would almost have preferred he throw a tantrum, but Chris told me that Thomas curled up in bed quietly and sadly turned his head away to hide his tears. 

I anticipate much more processing about hair loss to come: from Thomas, from Mama and Daddy, from siblings, from community. I know I haven't cried my last about it.

Thomas is voicing his readiness to be home now. We are all glad he will be gaining his independence on Independence Day!