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!
We can all stand down!
The one laboratory in the country which determines MYC-N status of neuroblastoma tumors has communicated that the oncologist will receive the results by close-of-business (West Coast time) on Wednesday. That means the results that we were told would take five days will be taking sixteen. No, the laboratory did not offer a reason for the delay. This was the first time I have felt any flare-up of anger through this entire cancer journey: please pray for me to accept God's perfect timing.
Our weekend was lovely. It was great to see friends at Mass on Sunday. A kind family walked up to me in the parking lot and gifted us the canvas play tent their children have outgrown. I've never let our kids own an indoor tent, but I did now, so they are thrilled. Margaret and Thomas are the two children who desire to be alone many hours per day, so I think they will be using it often.
After Mass, our family enjoyed having two new friends over for dinner: the kids together played chess, Clue, and Rat-a-Tat-Cat and all of us enjoyed brownies!
On Sunday evening, I bathed Thomas, wanting him to be clean and fresh upon entering the hospital, presumably the following day. I washed his beautiful hair and wondered quietly how many times more I have the privilege of washing it before he is bald.
The peace I had embraced on Saturday and Sunday was not achievable in the dark of night, so I stayed awake most of the night fearing what news the morning would bring.
On Monday morning at 7:00 a.m., the oncologist's office emailed me saying that they still anticipated Thomas checking in to the hospital today or tomorrow at the latest to begin chemotherapy, so I packed our suitcase for a three-day stay. Thomas is so excited to go back to the hospital . . . and get to stay the night . . . and take his own pajamas! Oh dear God, please let him keep his precious enthusiasm.
Rather than hover by the phone, increasing my anxiety, I decided to accede to my precious boy begging, "Please, Mama, can we do some Kindergarten this morning? Please, please!" Memories of the Pediatric Oncology Social Worker talking to me flooded back: She had inquired about his schooling and let me know gently that I needed to be ready to delay Kindergarten and that it would be okay in the long run . . . all true, but still so poignant when Thomas has been begging to start Kindergarten his whole four-year-old year.
So, I decided to embrace the moment: I would give Thomas the Kindergarten experience for this one morning, even if by nightfall we were checked into the hospital! A homeschooling friend had gifted me A Summer of Playing Skillfully: a curriculum inspiration for children ages 3-7 (perfectly fits our three little boys). (https://www.thehomegrownpreschooler.com/summer) My friend had read of another woman whose family was experiencing a child's medical crisis and how this woman blogged about how just being able to open this curriculum and do something celebrating truth, beauty, and goodness during the few occasions she could really brought peace to her and helped make wonderful connections with her sick child and the other children.
Perfect.
First, we selected pen pals from a local nursing home seeking pen pals for each of its residents. Letters were written, introductions made, and envelopes posted to the box. The little boys and I made water beads. We made an Adventure Snack and ate it outside--because any snack eaten outside is an adventure! Then the youngest four and I went on a walk in the woods to hunt for deer tracks (which we found). This was poignant for me because the understanding I have from the cancer training binder is that once Thomas is in chemotherapy, he may not safely play in the dirt and it's possible the entire woods will be off limits to him (I'll learn more later).
On our way back to our own backyard, three children and I walked along the tennis courts, but Thomas was insistent that he walk alone. "I know my way home! I can do it, Mama!" I pushed several times for him to walk with me on the nice even grass because I was secretly afraid he would fall (what? like he is made of glass?), but I can already see signs in these last couple of weeks that he is tired of me babying him. For him, being 30 feet away from me "in the woods alone" felt very independent, so I let him "walk home alone" (while I snapped secret photos and got sniffly).
Now I have to figure out how to occupy us for the two more days. Maybe some more Kindergarten!
🙏 🙏 🙏
- We anticipate lab results on Wednesday, the Feast of the Precious Blood of Our Lord Jesus Christ (first class feast). Please pray that Thomas's GanglioNeuroblastoma does NOT have an amplified MYC-N octogene.
- We are scheduled to start chemotherapy on Thursday morning, the Feast of the Visitation of the Virgin Mary.
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