{SQT} Big Week of Medical Stuff

Known as the week in which we had six medical appointments for four different family members!

 1. Weekend

On Saturday we took the family to Zootastic, a first for us, which has a great drive-through exotic zoo.

Because Thomas's labs showed his immune system to be strong right now, we ventured into having our first little (outdoor!) play date with a few pals in the afternoon. The children had seen friends three times in five months and that has begun to have ill effect. I'm so grateful they have numerous siblings and strong family relationships or the difficulties would have shown up bigger before now!

On Sunday, Thomas's numbers were so good that we got to attend as a whole family! Afterward, the girls had a birthday party to attend and a lovely friend offered to give them a ride to and fro. I had gone on a bicycle ride in the cool morning with one child and then in the afternoon we went swimming and watched a family movie of Minuscule.

An anonymous neighbor left this on our doorstep

Painting on Sunday morning

Homemade gifts from some sweet children at church

2. Monday

Monday brought frustration because Thomas had to endure a painful, unnecessary test. We had been told by the oncology clinic that the ever-evolving COVID test protocol has changed. When Thomas was first diagnosed with cancer just two months ago, anyone going in for a procedure required the original COVID test in which the sharp Q-tip thing is inserted all the way to the back of the nasal cavity and rubbed around for five seconds. That test even brings adults to tears. However, in the weeks since Thomas underwent that, our particular hospital system (and probably others) decided that those who are asymptomatic and receiving a test only for a medical procedure may have a nasal swab just at the entrance to the nostril. Considering how many COVID tests Thomas will probably have to undergo, we felt so grateful about this intended change.

However, when Daddy took Thomas in for his test, the nurses said the "high-risk COVID test" (for ACTIVELY SICK PEOPLE) had been ordered and was the only test they could do. If Chris walked away, Thomas's entire treatment schedule would have been altered in a bad way: no upcoming injection with radiology, no CT/MIBG scan, no surgery or chemotherapy next week. Thomas had to submit to the test and it was even more painful than the first time.

Thomas was left screaming and weeping in his Dad's arms for some minutes afterward.

We were in contact with the oncology office immediately and were told about the complex protocol for ordering this test. We will be having serious, in-person discussions to make sure this does not happen again.

3. Tuesday

On Tuesday we celebrated David's third birthday! Click here to see the pictures.

The celebration was squeezed in amongst going to the mechanic to pick up the van (wasn't even ready), juggling a workman doing a project in the house and a landscaper working outside, taking one child to the pediatrician (first family case of swimmer's ear), having music lessons at our home, and heading out again to pick up medication at the pharmacy.

Thomas received a care package from friends 3,000 miles away, included within it this blanket hand knit (or crocheted?) specifically for him: it is unbelievably soft and I like the autumnal boy colors!

In just a couple of months, John has grown taller such that he is a mere 2 millimeters shorter than his mama! 

I did set my alarm for the peak viewing of the annual Perseid meteor shower, but the sky was not favorable with so much light pollution and some clouds. I decided not to wake the four eager children, two of whom have been studying astronomy for months and absolutely love the topic.

4. Wednesday

On Wednesday, I was grateful to slow down, only having to take a child to the orthopedist for an ongoing issue, clean the house very well from the last few days, and order groceries earlier than normal to account for the next Big Two Days. 

I'm very grateful for the meal delivered tonight, as meals have been being delivered a few times per week. I feel like I'm barely keeping up with the new cancer demands, I can't meet the emotional needs of my other children, I'm in bed by 8:30 at night, I'm trying to turn around my health and cannot, and depression has been trying to sink its claws into me for the last couple of weeks.

Sidewalk chalk by Joseph

Curious George, racer No. 10, on his motorcycle! by Thomas

5. Thursday

Our babysitter unavoidably fell through today, but we told her to be at peace because this was a day we could manage on our own. Chris took one child to the orthodontist and then I took Thomas to Radiology.

Thomas's day involved my putting EMLA cream on his chest before departing so he would go numb. Then he had to ingest a vile-tasting oral medicine to protect his thyroid from being damaged by the radioactive medicine he has to take. It tastes so foul that his dose of 0.065 ml makes any amount of apple juice taste disgusting, even if you tried to hide it in a full 8 ounces (so we don't, we put it in just one or two teaspoons of juice). Tom will have to muster the courage to swallow this three more days in a row. Then we visited the clinic to have his port accessed, which is kind of like having an IV placed in him via his chest. Unfortunately, the substitute nurse poked the one-inch needle into his open chest and not into the port, so I called over our favorite experienced nurse who got it correct immediately: Thomas was an absolute trooper about his anxiety. We walked over to Nuclear Medicine in the main hospital for him to receive his radioactive MIBG injection (via the port).

 

Then home we went to wait 24 hours for the radioactive stuff to infiltrate his whole body so that the scans can see the cancer.

I meditated today on how the Bizarro World of Cancer changes our perspective on the RISKS and DANGERS of things like radioactive medicine (!) and general anesthesia (!) and chemotherapy (!) because what lurks invisibly inside of him is actually more dangerous. Much sobering thought for me.

Yes, we adults are experiencing many emotions about what we might see or not see when we read the report next week. Jesus, I trust in you. 

I was relieved to come home and embrace the normality of watching my children ebullient about building a complex track with additions to our collection of some new simple, wooden train track pieces David received for his birthday. I got to read Voyage of the Dawn Treader aloud. At bedtime, I got to lay next to Thomas, who quietly pushed his body next to mine until he fell asleep. Jesus, I trust in you.

6. Friday

Thomas did so well fasting on Friday morning: no food since Thursday dinner and he didn't eat for about 24 hours in total. In the morning, his daddy took him to 7:00 a.m. Mass because that is good to do but also so I could feed everyone else breakfast and have it cleaned up without Thomas being there.

Then I took the children for a morning walk to try to pass the time before our 10:45 departure. 

We got to the hospital and went through all the administrative hoops to get checked in. Margaret sent her little brother with a holy care package hidden in a rosary pouch. His beloved sloth stuffed animal came along as well.

Part of meeting with the anesthesiology team was my reviewing his whole list of medications that he takes over the course of each 3-week chemotherapy cycle: I was shocked to see that the typed list filled the computer screen top to bottom. I grew up with a mom who believed only in homeopathy (I don't, as an adult) and my inheritance from that is that I'm very slow to given even Advil or Tylenol, and among my six kids over thirteen years, they have had so few prescriptions of antibiotics, I could count them on one hand. I can hardly wrap my brain around the amount of powerful medications being pumped into Thomas, even though I'm living it with him.

It still isn't easy to leave our sweet boy under general anesthesia and walk away through the hospital pushing an empty stroller. My coping tools for the four hours we waited were a Kitchen Sink cookie from Panara Bread and James Herriot: an utterly soothing, non-controversial, and pleasant author to read during times of stress. I appreciated the nurse who kept giving us updates and always referred to Thomas as "your baby."

We came home with Thomas feeling really quite puny and still not wanting to drink, eat, or talk for some hours. His big brother John baked him a gorgeous loaf of pumpkin bread and it will wait till Thomas is ready!

Now we wait for the results of the MIBG and CT scans. The oncologist and surgeon will read the results this weekend and confer to decide on Thomas's continued treatment plan. We will not learn of the results or plan until Monday at 9:00 a.m. 

Jesus, I trust in you  . . . 

7. Bonus Reading

• Our county is the biggest in our state and despite the fact that our coronavirus numbers are the lowest (best) since the spring (Mecklenburg’s COVID-19 positivity rate has hit its lowest point since the spring), our governor extended our Phase 2 lockdown for 5 more weeks (Gov. Cooper: North Carolina to stay in Phase 2 for additional 5 weeks). The cost to businesses, schools, and lives in other ways (e.g., other health conditions, suicides) is astonishing.
• U.K. May Scrap Coronavirus Daily Death Toll After Experts Find Officials ‘Over-Exaggerating’ Count, Report Alleges
• This is one of the best, most articulate pieces I've read yet about why a religious worldview to this coronavirus situation makes such a difference. A Pandemic Observed: What mourning my husband and son taught me about the fear of death.
• I remember the Israeli scientists showing what the coronavirus curve would look like in every country, regardless of lockdown, very early in the spring, and it appears to be proving true again and again. Horowitz: Cases surging in Hawaii – with the strictest mask mandate
• After months of condemnation for no lockdown, Sweden’s COVID deaths drop to near-zero
• US ‘frontline’ doctors’ website exposes ‘criminal’ campaign by tech giants, govt agencies to block COVID med
• I've been trying to sort through mask information for month and I keep coming back to seeing that the information presented in support of universal mask wearing falls far short. I find it humorous that in our oncology office, there is still a sign up from pre-COVID times instructing the doctors on when they are to wear their masks: never in public, never in common areas, the sign emphasizes that they do not work for purposes of blocking viruses. I get to see the sign every week--with everyone around me required to wear a mask. Masks Are Neither Effective Nor Safe: A Summary Of The Science
• Will this addition to the team cause a shift in news coverage? Dr. Scott Atlas, the anti-Fauci Stanford doctor, joins the White House Coronavirus Task Force team
• This story exemplifies why I've always thought that my husband and I spent so much care and time selecting a spouse who shared all the same big values, so we had no intention of handing over our children to be raised during the bulk of their waking hours by stranger-adults who do not share our values. WALSH: Teachers Openly Fret That Parents Might Hear Them Brainwashing Children, Call Parents ‘Dangerous’

For more 7 Quick Takes Friday, check out This Ain't the Lyceum.