Training Begins! Cue Rocky Theme!

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!

Thomas told me today, "Mama! I am feeling better and better every day!" We started the day with me pulling him in a wagon on my morning walk (he refused to ride in a stroller, I think because he considered it babyish), later he walked slowly around the cul-de-sac with Dad, and then I had to start shadowing him because he would try to climb things and would mention that he wanted to jump off things. Considering he is not allowed to climb on the playground or ride his bike for three weeks (due to risk of tumor spillage), Mama is a Nervous Nellie. I try to keep a big sibling assigned to him at all times I'm not following him around.

Last night I had carved out time after the children were asleep to read the big medical training binder the oncology office sent home with us at our last visit. "Read this carefully and then when you come on Thursday, we're going to read through the whole thing together to make sure you understand it."

It turns out that bedtime was not the best time to learn all about what it will require to take care of a child undergoing chemotherapy.

I woke up (after what sleep I got) on a mission. I planned a family meeting to prepare all of us for more changes than I had imagined. I let the two littlest tots watch the Winnie the Pooh movie and then used my Mom Skills to set out a lunch buffet solely of tasty snacks to increase their patience. 

Ninety long minutes of presenting a tremendous amount of information taxed us all. There was really no way to introduce changes gradually, or tell only the older children, as all the lifestyle changes our oncology team is asking us to make affect the entire family and need to be prepared for this week. I can't wait until Thomas begins chemotherapy (likely next Friday), I can't work on the organization required while I'm in the hospital with him, or wait till he's home and feeling sick for me to carve out the time necessary.

I spent the day lining up babysitters for our first chemo cycle, brainstorming with Chris long-term child care (months), ordering supplies on Amazon, labeling things around the house (for future babysitters), revamping our entire weekly and daily chores schedule so the children can help more to keep the home orderly, and papering our Cancer Binder with questions on yellow Post-Its for our oncology team. 

I'm going to have to learn how to clean the house differently (and my close friends know our home is really clean already), cook differently, play differently, socialize differently--everything different! What is going to be the same?

What I want to answer is that our family's love for each other is all that will remain the same . . . but even that is going to change, be strained, and grow stronger.

Play outside? Can't climb or ride bikes. Can't play in dirt (fungal spores). All our favorite neighborhood doggies who the children pet when they walk past our home daily? Can't touch animals (wild or pets). No more catching lizards and snakes in our back yard. Not allowed to be on freshly mowed grass or in a sandbox.

Cooking? Can't allow any kids to share cups or dishes anymore (tell that to wee David and to Thomas!). Wash all foods like crazy. Nothing undercooked. No fast food milkshakes. No buffets/salad bars. Be extremely careful with leftovers. Long lists of high-calorie foods to try to prevent Thomas from losing too much weight. Long lists of bland foods for when Thomas is vomiting.

Cleaning? Have to do big spring cleaning in the next few days before Thomas starts chemo. Keep his bathroom and bedroom and bed absolutely clean all the time. (And we have not yet received training on how to manage the cleaning of everything contaminated by chemo, which I have already learned on Google will be its own serious matter.)

Socialize? Can't go in crowds. Not supposed to socialize with more than two friends at once (all of our friends have huge families!). Have to screen visitors for everything, down to a runny nose or a cold sore or whether someone has had a live virus vaccination lately. The oncology team is emphasizing how important it is for us to maintain social ties and not isolate entirely--"socializing with friends will be vital!"--but when I read our training binder and how danger lurks everywhere, I don't know how we are supposed to let Thomas play or for our family to socialize with other families. (We will be getting much more guidance on this.)

I was so grateful for the G family who dropped off a chicken feast tonight so I could just organize and plan all day before sitting at the dinner table in the evening. All the cards and comfort food and gifties we are receiving daily lift our spirits so much. You are helping to bear us up so we can be strong and cheerful for Thomas: believe me, he feels cherished right now. Let me share that when I spoke for 90 minutes to our pediatric oncology social worker yesterday, she was overjoyed to hear me describe in detail how much support we are receiving, as she said, "You just don't see that anymore--you just don't!"

Thomas has always been my most independent sleeper of the six kids, but he asked me tonight if he could sleep on my same pillow in my arms . . . and you know my answer was yes!