In anticipation of Mother's day this weekend, I spent lots of 'thought time' this week trying to think of an encouraging, Catholic essay to write for my fellow mothers. I've enjoyed the heartwarming or tearjerker bits published by others this week, and felt surely I had something to offer as well. It turns out that I don't because I find myself very much finding my way amidst this new mothering with a special health needs situation. I am unfamiliar, insecure, frustrated, confused, and feel in many ways like a brand new mother again--except lacking the unearned confidence I possessed as a new mother! Therefore, experience and wisdom tell me that I have nothing inspiring to say, but have only hopes that maybe with the upcoming year under my belt, I will feel more comfortable with God's new will for our and my life.

Milestone

Thomas's nighttime needs for help continue to reduce, so he graduated from sleeping in a twin bed at the foot of our bed--where I could stare at him all night with my head still on my pillow--to a toddler bed in the little library attached to our bedroom. Throughout each night for six months I have watched him sleeping (and for many months studied his monitor all night long), so having him just beyond my sight was a Big Step for Mama. I made him lay in the little bed and practice calling out to me in the master bed to make sure I could hear his still-very-quiet voice (lungs need strengthening). He was so excited that first night to have some new independence that it took him an hour to fall asleep because he just lay in bed smiling . . .

Thomas trying to fall asleep the first night

. . . but eventually he fell asleep and has slept there each night this week. The room is decorated with all the sea creatures that his oncology team decorated for him, as well as a giant pile of his stuffed animals.

Sound asleep

Academic Testing

This week, the oldest four children had their annual standardized testing using the Woodcock-Johnson test. Thankfully, God made them very bright kiddos who had much cushion in their education and test scores to experience a year that unraveled scholastically. That said, to all my well-meaning friends who encouraged me that my kids would do fantastic and fabulous without me, with spotty school at best, with following a list independently, I reply that cancer steals educational accomplishment from families, too.

Chris was the first to remind me that letting go of our other children's education for months was the price we paid to have one parent with Thomas 100% of the time . . . and we'd make that deal again every day of the week.

While the textbooks weren't always open so often, the children learned much independence, how to take care of a home and do the chores better, compassion and cheerfulness when caring for the littler siblings, and how to continue family traditions in my absence.

We pray that Thomas will not be one of the many children whose neuroblastoma relapses, whose families are consumed by cancer for years. "60% of patients with Neuroblastoma will relapse. Once in relapse, the survival rate drops to less than 5%." (Source: Isabella Santos Foundation) We pray that it is God's will for us to rebuild--including making a great homeschool next year! However, God's will is God's will regardless, and we know that those families who experience cancer for years or even loss of their little one prayed, hoped, and yearned just as hard as families who have an easier road.

* * * * *

Taking the children to testing was only the second time I've left Thomas and it was for an entire five hours. In the middle, Chris had to deliver the fourth big kid to me at the testing center, so he had Thomas in the car with him and my little Tom was crying for his Mama. We had some calm-down snuggles before he left again. When I arrived home, Thomas and Daddy were sitting on the front porch waiting for me. My little sweet love!

Medical Updates

This week's two main themes were about Thomas's hypertension and his eating by mouth.

Hypertension

Thomas had hypertension when he had a tumor present but the team had hoped his hypertension was resolved by now and he could be weaned off his medications. When we began slowly weaning his two antihypertensives in the same week, his hypertension revealed itself quickly. Why is Thomas hypertensive now? Probably his kidneys are still recovering (from 6 weeks in complete failure) and will be for some time.

Blood pressure is categorized five ways:

Normal
Pre-Hypertension
Hypertension Stage 1
Hypertension Stage 2 (here is Thomas)
beyond which there remains only Hypertensive-Crisis-Go-Straight-to-the-Emergency-Department

Thomas's Nephrologist has me measuring Tom's blood pressure daily and emailing her a summary weekly. After the first week, one med was increased back to its max dose. During the second week, his blood pressure was so high that his home health nurse needed to call his doctor before leaving our home.

If anyone local needs a recommendation for a pediatric nephrologist, please shoot me an email! Thomas's doctor is so attentive: she called me at home personally to formulate a plan:

Maintain drug #1 at max dose
Stop wean of drug #2
Add antihypertensive drug #3

She wants to see Thomas within one week, so she opened up her calendar herself, asked me when I would be at the hospital that week anyway in hopes of saving me another drive, and then cancelled another event she was to attend in order to put Thomas in that slot.

Eating Food by Mouth

Thomas tries hard to eat enough by mouth and we encourage him hourly. Unfortunately, if his calories are low, then we have to try to make his calorie goal with J tube feeds. Giving a bolus feed by G tube would not be much of a big deal, but the intestines don't stretch, so the hourly rate Thomas can accommodate is extremely slow. Right now, 30 mL/hour is about his max without intestinal distress: that's six teaspoons per hour. Imagine how hard it would be to get enough calories to sustain yourself on six teaspoons per hour, especially if you could not digest high fat or high sugar.

Some days, what I "should" give him by J tube would take 20 hours, 30 hours, and one day 43 hours to complete. Obviously, that is impossible.

Also, if he is receiving J tube feeds, he is not hungry, nor is he hungry for hours afterward. If the goal is to feed him by mouth, then we have to minimize tube feeds. Yet if he can't eat enough by mouth, then he gets stuck on a cycle of tube feeds that suppress his appetite and have him living on PediaSure (yuck).

The whole issue is very emotional for parents as we work with his surgeon, gastroenterologist, and dietician to navigate these waters.

Adrenal Insufficiency

Thomas had his Cortrosyn Stimulation Test, which involved three blood draws over sixty minutes. He was a pro!

His results came back not bad, but lower than sufficient. His adrenal glands are responding to his pituitary gland, but they're not responding quite enough. Thomas will go back on a low dose of hydrocortisone for a few more weeks--which makes for two new meds he's picked up this week, when I wish he were dropping meds!

Thomas has introduced us to the world of the fancy compounding pharmacies where one calls and a real, live pharmacist answers and gives excellent customer service. Normally we receive all of Thomas's meds via courier, but three times this week we had new meds that couldn't wait the 24 hours, so Chris had to drive to the pharmacy on three different days (thanks, honey).

Where Does the Time Go?

Thomas looks so normal externally that I wonder why on earth my time is so stretched, why I need so much help taking care of my house and other children, what has me so dog tired, and why my health is worsening? Why isn't this easier and I more capable?!

But then I realize I'm still just being initiated into the world of having a special health situation in the family. Now I look in shock and awe at families I know with multiple children with special needs!!!

Each day involves gathering and administering meds five times daily plus so much focus on food. Every Sunday I spend an hour or two gathering and analyzing Thomas's data from the week and emailing it to his care providers with thoughts on adjustments for the week (per their request). This Monday, some health issues arose so I spent most of the day on email or the phone with health providers (read: not teaching/supervising homeschool). I can't even remember how many unscheduled health providers phone calls I received over the course of the week. Chris had to run to the pharmacy three times. I had a phone appointment regarding CAP/C (which I took while the kids and I were taking shelter in the bathroom during a tornado warning!), and Tom had three therapy appointments plus one in-person doctor appointment. And this was our first 'easy' week since discharge.

Next week we will be at the hospital on four separate days for a cumulative seven appointments, as well as having his two therapy appointments at home.

Miscellaneous Moments

Two handsome knights . . .

I have three little attic spaces off of the school room, so I swapped things around this week to create a sewing room. This resulted in a flurry of little kid sewing projects!

The Lego room (little attic space) continues to get daily use (and almost never looks this neat).

Thomas continues to do his art . . .

St. George and the Dragon by Thomas (5)

. . . and the boys are excited to be doing science experiments from The Backyard Scientist. Also this week, many crafts were created using egg cartons, paper plates, paper cuts, and tin foil.

Thomas started a collection of medical supplies while in the hospital. He would ask doctors and nurses for various medical supplies and it was pretty hard for them to say no. Now his collection resides in a special box far away from little hands that could lose it. It meant something psychologically that Thomas invited his little brother to sit with him and go through the collection. I quietly listened nearby to Thomas telling his story to David and explaining what all the various equipment does.

We look forward to anticipation for a Mother's Day weekend in which all six of my children are still alive, granted to me by God for another day. Plus a trip to visit a little farm!