Home, Sweet Home

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 woke up very ready to go home. He was newly ready to talk to Mama about his upcoming hair loss. At first he curled up on the sofa making little sad, whining sounds for at least 15 minutes, unwilling to use big boy words with me. My coaxing did not help until he finally crawled into my lap, buried in deep, and asked while looking away from me, "When will my hair fall out, Mama?" We talked through it all again. The Child Life Team and literature I've read says that children often ask the same questions repeatedly not because they fail to understand but because it makes them feel secure to hear answers that are unchanging.

Anyway, our last morning at the hospital was emotionally challenging. After all the initial fun and attention, Thomas was homesick and spent much of the morning just making a low moaning sound, feeling just sad, so sad. He spent a lot of time in my lap. We watched Winnie the Pooh. He asked every 5 minutes "When will we go home?" while I exercised great patience.

One mystery is solved: Thomas seems to have a significant itching reaction to chlorhexidine gluconate. This is the cleanser used to clean before accessing Thomas's port that caused him an itching attack. Also, it is protocol that I clean the skin on Tom's body (excluding face and private areas) every 24 hours while in the hospital, lest germs on his skin creep their way into his central line to his heart. Little fella began itching all over after my cleaning him. We will put this in his chart and there are a couple of tactics to reduce the itching. The nurse manager told me that the same drug sold as Hibiclens soap causes much less reaction in its liquid soap form, so we will try that next time.

Thomas's blood pressure has been very high during the month since his cancer was discovered--and for who knows how long as the tumor was growing. It is a function both of the hormones his tumor secretes and the physical mechanism that his tumor is encapsulating and compressing more than one major abdominal artery. The oncologist on staff thinks it might also be from the saline Tom was receiving in the prior 48 hours, but I wonder, as his readings have been this high for a month. Each of the many times daily that a staff person checks his BP, I have to forewarn them that it will be high and that after they measure it with the machine (140s over 90s), they will want to take it manually (130s over 80s). The oncologists tell me that they can still watch it without yet prescribing medication, that I don't need to panic at home, and that the BP will reduce as the tumor shrinks, so probably a month before we see it start to lower. I reserve the right to be a Nervous Nellie about it.

Another effect of the tumor excreting hormones is that Thomas experiences surges of sweating. Chris and I actually did notice this one symptom in the weeks before his tumor was discovered: but who sees sweat and thinks CANCER? We would come upon Tom, indoors with good air conditioning, bathed in sweat. Sweet Thomas now breaks out in sweat, soaking his hair, throughout the day. One overnight in the hospital, Thomas sweated all night through his pajama top and bottom, soaking his hair--with no fever, no blankets, and AC set at 72.

This morning after Thomas's final infusion of chemotherapy, we packed up and were ready to leave. The final moments were spent with the wonderful RN giving Thomas a dose of Heparin and then removing the line attached to his port. Thomas wanted to know every step and to help with anything he was allowed to help with--which is to me a surprising amount. The nurse was so welcoming during our three days, always explaining everything to Thomas and letting him maneuver what he could on his line. I'm telling you, medical personnel who choose to work in pediatrics oncology are a Very Special Bunch.

I am so grateful that my husband insisted that we hire a babysitter for this afternoon, even with two adults in the home and a wonderful dinner being delivered by the N family. "I won't need help." The truth is, I was woken every 45 minutes for two days, I have unpacking and laundry to do, and a big ol' pile of new patient education literature to read and forms to fill out.

While in the hospital, numerous oncology personnel gave me more information about what we need to anticipate. I've written paragraphs for Caring Bridge, really struggled with emotions, and deleted a lot of text in hopes of living more in the moment. It is just a lot for this Mama to process. Even at "just" Stage 3 cancer and not Stage 4, this is a path, a journey, a serious challenge.

Even though Thomas took a nice two-and-a-half hour nap and even though he is on Zofran, he was moody all afternoon. When it was time to pray Rosary after dinner, I found him moaning upstairs and he just wanted Mama. I read him a book while he curled up in my lap (still moaning) and then asked him, "Tonight do you want to sleep in your own bed or would you like me to make you a little nest on the floor of our bedroom?"

He protested, "NO!"

I asked surprised, "Then where do you want to sleep?"

"I want to sleep right next to you in your arms."

So, I tucked him into our master bed while he said he wasn't at all tired and he cried that we had not purchased any fireworks this year, and he moaned and moaned in my arms until he fell fast asleep in about five minutes flat.

In one of the gift bags we received from a philanthropic group was this handwritten gift card that I would not have earlier understood, but now made me cry: "You are not alone on this journey. Just remember you are loved and there is hope! You never realize how strong you truly are until being strong is the only option. You've got this!"

🙏 🙏 🙏 

Specific Prayer Requests:

• That Thomas's blood pressure remains stable and lowers, with no further rising;
• That Thomas's tumor shrinks beautifully, particularly that it disentangles from the major arteries so that it becomes operable.