Post-Op 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!

Thomas and I both caught up on sleep last night on our recovery camp beds in the den and it felt luxurious compared to the hospital, even though we had to wake by alarm every 3 hours for the next pain medications.

The little guy is slowly feeling better. He woke up and got out of bed himself to walk across the room! Throughout the day, he slowly walked around the house and played quiet activities, such as stickers, coloring, plinking at the piano, and building Legos. He took a long nap as well.

He is still vomiting (four times today at last count?) because the pain meds cause powerful nausea if taken on an empty stomach, but he won't eat because he feels bad, so the cycle continues. I'm counting bites encouragingly, such as 3 bites bagel, 2 bites Annie's snacks, 1 sip milk, 6 tiny cheese crackers (cumulative count for the whole day--so puny). We spoke to the surgical on-call team twice today and they were encouraging.

We haven't seen any smiles from Thomas yet, but we know he's improving and even so much that he sneaked out into the front yard twice today (where I quickly caught him).

Chris gave some special attention to one sibling today going on errands together and I gave some special attention to two other kids today by taking them to rigorously clean our van (and we had to fortify ourselves with a Chick Fil-A shake). There are a lot of big feelings swirling around our home right now and not enough of us to possibly give enough attention. May we all, no matter what age, grow in holiness through suffering.

Today was a day for me straightening the house, trying to open more mail but still not all of it (do you lovely people know that I cannot even keep up with all the mail you are sending us?!), doing several loads of laundry . . . and being ever-so grateful for the Taco Night FEAST that was delivered to us.

Late in the afternoon, Thomas left his artwork, climbed up on the sofa where I was trying to buoy my spirits by reading a Catholic book but really was just falling asleep, and he asked me for the first time, "How did the lump grow in my belly?" I know my Tom and how bright he is, so I explained the multiplication of healthy cells, how we grow normally from when we are in Mama's womb, what a nervous system is, and that some of the cells that were supposed to become his nervous system escaped to the wrong place and started multiplying there. After each small concept I would ask if he understand and if he wanted me to keep talking, and he always said yes. I also told him that the fancy word for his lump is "cancer" and that he might sometimes hear grown-ups or older kids using that word, but he is welcome to just use "lump." (Our Child Life Specialist had said we should make sure he knows that word because of how much he is going to hear it, but that we don't need to dwell on it.)

Thomas could explain it back to me and his sister. Then he asked me somberly, "Mama, how are they going to shrink my lump?" So, I told him he was going to learn another really fancy word: "chemotherapy." I explained that chemotherapy is a special medicine he will get through his port that will make it so the bad cells cannot continue dividing and that they die. 

My little boy was very thoughtful and asked intelligent follow-up questions to everything I said. I know he had been mulling it over for some time and he will continue to be thinking. I suggested that when we go back next week to see Miss Haley (his Child Life Specialist) he could explain to her what he knows about Cancer and Chemotherapy and that she might like his explanation so much that she would use it to talk to other little kids. He liked that idea.

Another mom of a four-year-old boy with neuroblastoma said today: “There are some tough moments in the day, but every day is a good day!” I'm trying to embrace it, but some days or hours or moments--especially if I read information--it's just dark.